The Heart Mom Chronicles

Our Warrior Princess Turns Three!

2011-09-10T22:00:00.000-07:00

Alexa Brianne - mi corazon,

You turned THREE years old on September 2^nd, 2011!

How time has flown by my sweetie!
You are tender and affectionate,
quick, smart and curious about everything.
One minute needy and another independent.
You fill our home with so much joy, love and silliness.
Your smile and laughter are contagious.
You are like a beautiful flower in bloom, wild, free and spontaneous.
You keep us on our toes!
I’ve often wondered if you were born with this fearless spirit
that without a doubt has helped you overcome the difficult medical journey you have faced
(two heart caths and three {open} heart surgeries and all the junk that comes with it)
or if this fearless spirit is the result of having nothing left to fear
because you have been through so much?
Either way, we appreciate your nature, your courage and bravery.
You have taught us many valuable lessons.
You are a warrior. You are our princess.
You make every day worth living
and every day a celebration of life!
We love you and will be here for you always!
We thank God from the bottom of our hearts for you.

“What Is A Little Girl!”

She's a bundle of sweetness,
brightness & fun

The beauty of springtime,
the warmth of the sun

She's Innocence covered with mud,
sand, & soot

She's Motherhood dragging
a doll by the foot...
She's a composite picture of
giggles & tears
Of tantrums, excitemen,
amusement & fears

A bundle of mischief
and often a tease

A creature of moods
not easy to please...

Who'll capture your heart
with her pixie-like grin

Or chatter and beg till your
patience wears thin

But obedient, naughty,
mischievous or coy

She's Mom's little Darling &
Dad's Pride & Joy.

Three Months {and late again}

2011-08-27T01:52:00.000-07:00

Luke 3 months on 8.18
{these pics taken today}

You are all smiles now! You love to dance and generally be bounced up and down. You have begun to bat and grab at your toys and of course taste everything. I love how you are soaking up the world around you. How you intently examine everything in your line of sight. Your not too fond of laying on your tummy long but it's growing on you. You can do a full 360 degree turn on the floor as you try to move. You also rolled from your tummy to your back a few times! You love when I sing to you. Especially anything with hand movements like Itsy Bitsy Spider and Pat A Cake. You are ticklish. You are currently wearing a Size 2 diaper. You weigh about 16 pounds and are wearing 6-9 months clothes. You are my first baby that actually prefers to be laid down while drowsy after nursing and rocking for a bit. I am amazed you can peacefully fall asleep on your own. You smile when I lay you on your bed, you recognize this is as your safe and special space. You still wake up about 2-3 times a night ~ mostly 3. You are enjoying your new Tiny Love Mobile and Sophie the giraffe teether. You had your first fever and cold thanks to your lil big sis. You Luke ... light up my life. I miss you when you sleep. I daydream of you. I love you. I like that I can soothe you. And you soothe me. I have visions of you. I can see you as a little toddler running around full of happiness and glee. I can hear you call me mommy. I can see the look in your eye full of wonder. I can feel your warm embrace and your sloppy sweet kiss on my cheek. I look forward to those days, as each day I get to know you more and more. But for now I cherish and relish in these moments, smelling like spoiled milk and all because you are my good and perfect gift from above ~ you are my present.

Love you forever ~ mommy.

Moments

2011-08-04T01:30:00.000-07:00

These are the moments I wish not to forget.

One of my current favorite things is watching my baby girl pretned play.

I love when she is completely submerged in her own little world.

I sometimes like to spy and hide behind my kitchen wall

so I can enjoy listening to all the toys 'conversations'.

I smile and my heart swells with joy.

I love her so much.

After just learning of the unfair passing of another child with CHD,

a precious five year old little boy with HLHS named Mario Martinez,

I am again reminded of the fragility of life.

My heart goes out to the family.

I can't help but hope and pray I get to keep her forever.

In Transition

2011-07-29T10:05:00.000-07:00

My world is changing. Everything is happening so fast and I feel almost like an outsider looking in on my life. I feel quiet and contemplative and suddenly full of life and exhilarated and other times just plain exhausted and defeated. In the last couple of weeks we added a tiny soul to our family. As I began to cherish and really relish this newborn phase {since with Alexa I didn't really get to enjoy it} my safe little nest was shaken. The good thing is that I had already learned that life moves forward in beautiful yet sometimes challenging ways.

About two and half weeks after giving birth to baby Luke, my dad, father, papi, my first love and protector, suffered a life altering debilitating stroke. My family initially thought of protecting me from the news but it was just much too big to keep secret. I struggled between being there for my dad, mom and siblings and being here for my little ones, especially my tiny one who was/is so very dependant on me as I am his primary source of nourishment. My dad's stroke happened on the evening of June 6th. I knew that strokes kill and I had seen/heard of some people who had strokes and were somewhat affected but still looked and acted fairly normal. I didn't know the in-between. NEVER imagined a stroke could cause all that my father has been through these last couple of weeks. It is truly incredibly scary.

He was initially able to receive a clot busting medicine but this did not help as much as the doctors had anticipated. The stroke completely affected the right side of his body and he was initially unable to swallow. Because of this he needed a feeding tube, the feeding tube quickly became severely infected (lack of care) from irresponsible nurses and docs {but that's another story} so they removed it. It was not healing and so he required abdominal surgery to sew his stomach and clean out the infection. After three weeks of this, we were finally able to get him over to an intensive rehab therapy hospital to help him deal with the aftermath of the stroke on his body. My dad has not been able to speak intelligibly since the day of his stroke. He has something called Aphasia and Apraxia. He can understand us but we can't understand him. It is very frustrating for all of us. We want to know what he is feeling and thinking. It is very isolating and probably the worse thing you can have when you are in the hospital because you can't express your needs or pain.

my dad as a youth

My dad was an independent, fairly young {just turned 58}, strong and jovial person. Loved talking, telling jokes, making people laugh and feel at home. I've always admired his keen sense of hospitality and strived to be like him. He was a gifted musician and artist. He could play any song on any instrument all by ear, never requiring musical notes but his favorite instrument was the organ. While kids he filled our home with music.

It breaks my heart so see him in a wheel chair, unable to express his thoughts and feelings and to do the things he enjoyed but we are so thankful he is still with us. So glad he can still enjoy watching his grand kids play, a beautiful sunset and a delicious homemade meal. We are thankful for what we still have but the truth is also miss my old dad. I have cried for the loss of the man I knew. It is strange to mourn someone while they are still alive but I've learned it is part of the process after a debilitating stroke. There is so much I wish I could ask him now, so many things I feel like I don't know about him. We all thought we had more time, he is young, we didn't expect this at all - ever.

my dad and me

We are happy to see his personality shining through again. He laughs and still makes jokes. It is amazing how much emotion the face and eyes can communicate without saying a word. Although, thankfully he has begun to say more sounds and some words now. The therapists all love him and his cheerful disposition. After everything he went through, we were elated to welcome him back home on July 23rd.  My whole family pulled together to get us through this crisis. We pray and hope our father with continued speech, occupational and physical therapy along with hard work, love, support and prayers continues to make improvements. Strange to be in this situation but I have thought recently how in the coming months I hope to see both my son and father learn to talk and walk {again}.  During this time, I read a beautiful book entitled " A Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing" written by Diane Ackerman. This book helped me sort through some of my emotions and to foresee some of the challenges and joys my parents may face in this new chapter of their lives.
So you can say that this summer has been far from ordinary. I feel like my kids just got out of school for summer break and in about a week it is time to back to school. Time just rushed by. I am from California and I think it just doesn't feel right that kids go back to school here at the beginning of August when we are still in the thick of summer.  As a child I really enjoyed going back to school in September, after the Labor Day holiday, one last summer hurrah! And then you could just feel it in the cooler air, autumn was coming and so was the beginning of a new school year.

As I began to help my kids with getting ready for school, reviewing math skills for example, I began to question the quality of education they are receiving in public school.   I liked the thought of being able to choose the curriculum, what they learn, how they learn it and just actively watching them come to new realizations.  I really enjoyed the time we spent together teaching and learning and they seemed to equally enjoy it.  Handling this on a day to day basis with two younger ones however, is a concern for me. So there is a whirlwind in my head about this and I will continue to ponder and explore the possibilities.

I realize life is about change but I feel it more intensely right now. My babies are growing up way too fast. And I want to accomplish so many things within my home and for my family. I struggle to find a balance between keeping up with home chores, trying to exercise so I can fit back into my clothes , healthy meal planning and savvy grocery shopping. I think the most important though is reaching my kids hearts and minds. Teaching them about their creator and to love and appreciate Him. Building our faith everyday and every week. I want to stop time, I want to be with my kids, love them, get to know them deeply as individuals with respect love and admiration for the beautiful wonderful beings that they are and for being mine.

My two boys

2011-07-20T11:05:00.000-07:00

Wow! Another month gone by! I really thought I would have had time to update the blog before this time but I guess it was just wishful thinking on my part.

So baby Luke turned two months old on the 18th of July. I'm two days late but doing better than last month. I took him for his check-up on the 18th and he weighed 12 pounds 10.5 ounces! He is also 24 inches long! He is a pretty big boy! I think on the 76% percentile line. He has only slept through the night one time so far and that night I stood up reading late on the computer, so I was still sleep deprived but not his fault. He still wakes through the night about once or twice. Usually he goes right back to sleep after nursing but sometimes he seems very wired and I say he looks like he is 'swimming' in bed because he is just kicking his arms and legs around and is happy and cooing. Last Saturday he did this and was up from like 2:30a.m. until 5:30 a.m. I really had planned on going to my 9 a.m. Sunday Bible meeting but I just couldn't get up. I have to get everyone ready and fed before leaving so it just wasn't going to happen. Luke is also smiling a lot these days and even beginning to laugh out loud a bit. The kids are all still just loving him to pieces and it is so sweet to see!

On another note, my BIG baby boy Caleb got braces last week! He looks so handsome. We did some before and after pics to commemorate the occasion. I was a little bit concerned about him getting braces in what in my opinion is a little early, since he still nine years old. I had braces too but got mine at twelve or thirteen years old but it seems like getting them earlier now is the new trend/recommendation. I've seen kids in his class last school year with braces already. He was excited but now has a more extensive oral hygiene routine to keep up with. The Ortho place is great though and they provide him like a credit card he can earn points on for rewards if he keeps up with all their instructions. I can't believe how much he has grown. He is a great kid, funny, smart and sweet!

Loving all my bambinos!

One Month

2011-06-25T02:11:00.000-07:00

I should be asleep already but I just couldn't sleep until I came to do this. It is my goal to take and post a pic of baby Luke everytime he turns a new month, so this self imposed assignment was weighing on my mind.

Luke turned a month old on June 18th. This pic was taken today at 5 weeks old. I'm late but have a lot going on right now so I forgave myself already.

Luke is

a very sweet natured boy
super cute
99% breastfed
already wearing 3-6 months clothes
starting to smile and baby talk
entertained by our ceiling fans
smothered in hugs and kisses by Alexa {i protect him}
adored by his older sibs
loved by mom and dad
snuggly
loving his bath time
ocassionaly carried in a sling
in sweet slumber in my bed and so I must go to him!

Sweet Dreams

A Mother's Love

2011-06-10T17:03:00.000-07:00

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path."

-- Agatha Christie

A picture of me and Lexi above. Have been feeling very contemplative lately, full of emotion, reminiscing on many experiences, on life and love, trials and triumphs. The journey. That's all for now.

Hope

2011-06-09T17:54:00.000-07:00

"There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow."

- Orison Swett Marden

HELLO WORLD: LUKE AARON

2011-05-26T01:24:00.000-07:00

Welcome to the world my sweet boy!

Dear Little Luke,

You were born on Wednesday, May 18th, 2011 at 7:49 in the morning.  You arrived on your own time without any inductions or prodding.  You were five days overdue but I had faith you would come when ready. The only thing I did to encourage you was walk. The last few days of my pregnancy I took several walks around the lake by our house in the early morning and evening hours.  I could see all the new family of ducks with their tiny ducklings and smiled as I thought of waiting for a duckling of my own.  They were quiet and peaceful walks as I contemplated our new life with you.

I went to one last OB visit on Tuesday afternoon and pretty much after leaving the office I began having regular contractions.  I stopped by at the grocery store to pick up something for dinner. I was anxious and excited, wondering if these contractions would turn into true labor or just some more false alarms. Your Nana and Tata were home with your brother and sisters. Your daddy had to work late this night, something he almost never has to do and I was actually pretty worried he would be too tired to help me through labor if it turned out to be so.  He got home about 9 p.m. and I asked him to download a phone app I had heard about that would allow me to keep track of the contractions.

Before heading for bed, your brother and sister were so excited at the prospect of possibly meeting you soon. Actually, the whole family was ardently anticipating your arrival.  I tried to rest but could not. After several hours it was obvious this was it. I was in true labor.  By about 3 a.m. Wednesday, I told daddy it was time to head to the hospital. Contractions were now less than three minutes apart and lasting over a minute each time.

When we arrived to the the hospital I was already 5 cm dialated.  I was happy to be half way there. I was calm throughout most of my labor.  With every contraction or pressure wave that came over my body I would try to relax and let my body flow into each wave, imagining that I was floating in a section of calm, warm and safe ocean water near sunset time. Your daddy prepared some relaxing music for me to listen to. He held my hand, massaged my back and as I felt my body want to tense he would remind me to think of the word 'peace' and let go of the pain.  As the tension increased I would remind myself that every contraction led me closer to you, this gave me the strength to keep going. I imagined my uterus, the home that had kept you safe for nine months, like a flower petal opening up my cervix and gently but firmly pushing and guiding you out to life.

I felt a bit of nostalgia knowing this would be last time to ever experience the beauty and miracle of child birth. So I was determined to be present in the moment, in tune to my body and all my senses. Child birth is very very very hard work, like climbing a mountain or running a marathon but the reward is so worth it. The emotional high, the journey and each child birth experience is one of the most exquisite, transcendental and beautiful moments in my life.  It is hard to explain, if you have not experienced it before. Like trying to explain colors and shapes and/or natural elements to someone that has been blind from birth.   So my son, just know that this is the place in my heart I was coming from as I birthed you. A place of peace and acceptance, a place of love, admiration and respect for the creator of life and majesty of birth. I was ready and eager to forever engrain into my heart and mind our story, this labor of love for you.

By the time I hit transition 8-9 centimeters, things got really hard. I felt like a hit a breaking point.  But I knew this was the hardest part. The relaxing thoughts seemed to no longer help me but I knew the finish line was close and it was soon time to push you out. I have to say, you were by far the hardest of all my babies to push out. I became tired and fatigued but knew you needed my help. I knew you were doing your best and also laboring from the inside out.  It seems your shoulder had become stuck on the way down and that is why it was taking longer for you to be born.

The doctor encouraged me to push and not give up. I could sense some urgency in her voice. I wanted your journey to be over, I wanted you in my arms, so from the the very depths of my soul, I gathered incredible raw power that finally brought you forth into this world. I felt your slippery, warm and wet little body emerge. I saw your beautiful little face. Your chubby cheeks. And your soulful eyes. I was so happy, ecstatic, content ... satisfied. Tears of joy followed. I got to hold you and hug you and love you. And I promise to never stop.

Thanks to your Auntie's Eden and Isabel for being there and recording your birth journey.

Overdue Club

2011-05-16T08:44:00.000-07:00

I am officially part of the overdue club. Today, I am 40 weeks and 3 days pregnant. Seems like a lot to me, since I have 3 previous children and never made it to my due date.

I was pretty sure this little guy would come early. Everybody around me seemed pretty sure as well. He has proved us very wrong.

I was certain I was going into labor a few times already, all for the contractions to suddenly dwindle down and disappear. Last night was one of those times, I had contractions that woke me up at 2:30 a.m. coming every few minutes apart and then by 5: 30 a.m. they stopped. I was very disappointed. I feel like I will be pregnant FOREEEEEEEEEEEEEEEEEEEEEVER!

I want to have a natural unmedicated childbirth like I did with my others. So I am really trying to avoid induction. I was at the OB office on May 12th, the day before my due date, and I ended up seeing a doc that wasn't my doc. She was a bit too pushy, wanting to strip my membranes and schedule and induction for the next day. I told her I was not ready. I wanted to give this baby at least some time to come naturally. She tried using various scare tactics which I did not appreciate. I left feeling pretty frustrated. After I left, I called and talked to a nurse, who then spoke to my doctor and agreed to let me go a week and half past my due date. I was glad he was more willing to work with me after the other doc made it seem like strict policy to induce around due date. I told her I wasn't sure I wanted to wait quite that long either but at least a few days to a week but only after checking baby was still doing well, with an ultrasound and/or NST test. I really wanted this baby to pick his birthday not have it picked for him. Hope you are listening baby!

Tommorow afternoon, I have a follow-up appointment with my OB, although I really I hope this baby is born before then. I know every birth is different though so I will just have to wait and see.

Below some random pics of the last few weeks.

spec.ta.cle

2011-05-09T10:59:00.000-07:00

Spec.ta.cle - noun

1. anything presented to the sight or view, especially something of a striking or impressive kind: The stars make a fine spectacle tonight.

2. a public show or display, especially on a large scale: The coronation was a lavish spectacle.

So this is how I told my dear hubby I was feeling yesterday ~ like a spectacle. Everywhere I go I can see through the corner of my eye people looking at me. Analyzing me. Whispering about me. What I imagine them saying is "Wow, that is one big belly!" or "Shouldn't she be in the hospital already?" or possibly "Are those twins or triplets in there?" Gabe even told me he saw some guy just staring at my belly button as I passed by. ..... sigh .... geesh ...

I don't look at anybody directly as I'm walking by for fear I may answer their unasked questions. I just go about my business happily smiling away seemingly oblivious to their stares and comments. Some people of course actually speak their mind, like the lady at Target yesterday that said "Wow that is the biggest belly I have ever seen, you should be very proud and takes lot's of pictures!" So I laughed and wondered if my belly is really the biggest belly ever. I mean, I'm four days shy of my due date, pregnant with my 4th child and my babies are usually on the bigger side. So I find it to be understandable my belly looking this big at this stage of the game. I almost feel like wearing a sign or thought of just staying secluded at home until my babies birthday.

But besides feeling like a specatacle I am feeling pretty great. I saw a friend/waiter of mine at Olive Garden yesterday that said I had a nice pep in my step and looked like I was feeling great. Which is true, I felt more tired weeks ago. I think I'm just excited to finally know the time is just so close. I keep thinking how the dynamics of our family will change, how we will go from being a family of 5 to a family of 6! I get a little sad when I think of Alexa not being the baby any more but happy when I think of how excited and proud she will be to be a big sister. Happy that my son will finally get to have a brother. And just overall joy to finally get to hold and meet our new baby boy!

For now behold - the biggest belly in the world!:

{pics taken with cell close to sundown so not best quality}

with my babies

my honey and me

my loves

EDIT: So my wonderful sister Eden just called to tell me she read my post and that I am huge. Thank you sis! But of course she has no children of her own yet ... ;)

Babymooniversary!

2011-04-22T10:42:00.000-07:00

Okay, so this is me about ready to pop! My 4th pregnancy and 37 weeks today! According to Babycenter - that is considered full term! My actual due date is May 13th. My three previous pregnancies I delivered at about 39 weeks. I've been fortunate I haven't had to go past my due date. I'm hoping this baby is about the same, if he wants to come at 38 weeks that will be okay by me, just hope he doesn't decide to be the first to go past my due date. I am already feeling ever so tired, swollen, achy and heavy and looking forward to feeling 'light' once again. The pregnancy has gone by pretty fast, which I guess is normal when you have 3 other kids your looking after. We've had two great baby shower's and I just recently finished the nursery that Alexa and this new little one will be sharing. I am also almost done packing our hospital bag.

On another note, yesterday, April 21, was our:

10 YEAR Wedding Anniversary!

We cannot believe how fast time has gone by. I remember when I was getting married I didn't comprehend how you could love the person you were marrying anymore than you did on that day {as you were obviously so in love!} but now I clearly understand it. That is just the beginning and as time passes and you make new memories, you have children, you share in each other's lives, you see the other persons love in action, you share good times and bad times, you just fall more and more in love with that person everyday.  That is how I feel about my hubby. I have seen him become a wonderful husband, father and even better person. I am proud to be his wife. He is what a true man should be.  And I am ever grateful and thankful to have him in my life, now and forever.

Okay, so after making myself cry ... sniff ... last year we had said we would be doing something special for our ten year anniversary because we had never left our kids to go anywhere in 10 years {except hospital stays}! In the last year, our older kids have had a couple impromptu sleep overs at cousins or grandmas house but we have always still had Alexa, hence we never did any going out. We had agreed for our ten year anniversary and now that Alexa could communicate her needs well and doing well health wise, it was time for us to ~ GASP! ~ have a vacation by ourselves! But as you remember in the beginning of this blog post - we are having a baby like in 2 weeks, lol! At that time, we didn't realize this would be the case.  I can hardly walk anymore, I mostly waddle, I am so swollen I can hardly bend, I almost fell over like light post the other day and I can't even celebrate with a nice glass of wine or margarita! I sound like no fun but thankfully my hubby is still willing to take me on a 'babymooniversary'! Baby Moon's are all the rage for first time parents wanting one last hurrah before baby comes, which is what were trying to do {except with 3 kids at home} and a 10 year anniversary celebration.

So we rented ourselves a nice hotel suite!  I am so looking forward to just being in the pool {floating} so I can't feel my weight lol! and just resting by the pool, some quiet romantic dinners, uninterrupted conversation with my love, sleeping in and well ... maybe even getting this labor party started.  =)

Cardiology Update ~ So happy!

2011-04-19T10:56:00.000-07:00

On Monday, April 18th (yesterday) I took Alexa to her cardiology check up.  Considering I am very close to giving birth (almost 37 weeks) I was really hoping for good news. Good news to me means at least the same as last visit and no change to a negative side.

Normally it takes us about 20 minutes to get to her clinic. Yesterday, it took us ONE AND HALF HOURS! We along with half of Phoenix were stuck in bumper to bumper traffic because of a freeway closure (man threatenting to jump off the overpass). I knew about the freeway closure in advance so left an hour and 15 minutes early and I was still late by 15 minutes. I just really wanted to make it to her appointment. I needed to know how things were going before this baby is born.

Alexa now weighs 31.9 ounces and is 35.7 inches tall! She did awesome during her echo, she was completely still. She was enjoying watching one her favorite movies ~ Toy Story 3 and sucking on a lolly pop. The tech was very impressed by how well she did through out the echo.

Dr. P was in shock to see how big she has gotten. And he had such good news to report! He told me Alexa's pulmonary pressure gradient actually read LOWER than at the previous visit 6 months ago!!! Last time it was 30 this time it was 25. He said it could be possibly mean it was really the same number, that maybe she was just 'stiller' this time for the echo, but I remember last time she did really great too, just laying still. So either way, if we say it's lower it's fantastic if it's the same it's still fantastic!!! He said that her left ventricle is working STELLAR! All her heart function is great!

I only learned about one new tidbit of info - which is that she has a very tiny mitral valve leak. He said he suspects it is nothing wrong with valve leaflets themselves but instead explained that do the location of her pacer lead as the ventricle receives the signal to contract one side is receiving the signal like a mili second sooner and so the "leaflet doors" are just closing a little off of each other like one before another so allowing a tiny bit of regurgitation.   He said this is not a problem and does not expect it to become one. He said I probably have more regurgitation now because of the excess blood volume during pregnancy than she has going on right now.

So then he went on to check her pacemaker function.  Said he could tell she is a very active little girl! =) He said also everything looked good and discovered that she once again has AN UNDERLYING HEATBEAT OF HER OWN!!!! He was very surprised it came back and double checked it to be sure and it was true! Her heart is now able to beat on it's own at least 51 beats per minute. This of course is slow but it is MUCH MUCH better than nothing!!!

I was so grateful, so happy, so relieved! I didn't really think I could expect a visit with better than 'just the same' results but yesterday's visit proved me wrong - things can get better!!!! So we got another six months in the clear with a 3 month pacer check call in.

Our Sweet Heart Party Pics

2011-03-20T15:06:00.000-07:00

Just wanted to update the blog with some pics from our Sweet Heart Party. Again, this was done in honor of Alexa's one year OHS anniversary and also in appreciation of the many friends and family that helped us during that time. It is something I had in my set in my heart do to and glad it came true. =)

So here are some pics fo the day:

One Year Ago Today

2011-02-23T15:23:00.000-08:00

A year ago today, on February 23rd, 2010, we handed over our precious daughter Alexa to endure a nine hour open heart surgery. The doctor described this hurdle in her life as trying to cross through the Grand Canyon. It was a complex surgery, a risky surgery and a much needed surgery. In the weeks and days leading up to the surgery many tears were shed. And many many conversations with God exchanged.

Our Warrior Princess ~ Rastelli Surgery ~ Feb. 23, 2010

Driving her to the hospital the day before surgery for all the preop testing was painful. As she looked at me with her beautiful sweet eyes filled with pure trust, love and innocence, I couldn't help but feel like we were betraying her. My heart silently shattered into a gazillion little pieces.

Driving to the hospital ~ look at that sweet face!

On the morning of the surgery, we were at the hospital bright and early. All the papers were signed, all the testing was done, all that was left was to get her in her hospital cap and gown and to hand her over. We were greeted by the surgeon and anesthesiologist with warm smile and of them holding a hot cup of Joe in their hand. We found out they had been up all night doing an emergency operation on another child. My nerves were raised even further knowing they had not had a fulls night rest and yet my daughter's life lay in their hands. The Child Life Specialist was there to give Alexa some fun toys to distract her from the hospital commotion. She smiled but clung to me with a dreary apprehension of the events unfolding. She knew something was up. My husband and I tried to remain composed. We took some last minute pictures. We smiled on the outside but were truly slowly dieing on the inside. They brought her over some 'happy medicine' to make her feel calm and cozy. The anesthesiologist warned us that as soon as the medication started taking effect he would then quickly and swiftly take her away ~ no prolonged goodbye's would be possible. After about 5-10 minutes we could see she was relaxing and had this big happy silly grin on her face. Seeing her like this made us smile through our tears. And so just like that, the anesthesiologist showed up, she was out of arms, out of her presence and protection. Letting go was THE HARDEST THING we ever had to do. The nurses rolled the curtain to give us some privacy and my husband and I just held each other and cried.

Right before surgery, can you tell she is worried ... poor baby girl.

It was for sure and without a doubt the longest day of our life. The hardest day of our life. And this all happened one year ago today. We are SO THANKFUL AND GRATEFUL to God, to Alexa, to her surgeon, doctors, nurses, our other children, family, friends and other heart families that helped us get over this great hurdle. This Saturday, we will be hosting a Sweetheart Party in our home in honor of how far Alexa has come and in heartfelt appreciation to at least some of the family and friends that helped us through. I'm excited to see how it all turn's out. It will be a dessert party filled with yummy sweets for all the sweethearts that surround us!

One year later, February 23, 2011 ...

Alexa, today

jumping on the trampoline {her new favorite thing}

to her heart's content ... and mine!

CHD means ...

2011-02-09T10:17:00.000-08:00

giving birth to your baby and only getting to hold them for a few seconds.

Watching your heart, pride and joy, get wheeled away to endure a fight for their life.

Being left empty handed, broken hearted and with a world full of unanswered questions, fears and hopes.

Posted in honor of Congenital Heart Defect Awareness Week 2011.

What Every Pregnant Woman Should Know and Ask

2011-02-08T08:24:00.000-08:00

As a pregnant women we stress over many things during our pregnancy. We worry about our unborn child. We take our prenatal vitamins, we change our dietary habits, we worry if the baby kicks too much or not enough, we worry our bellies may be too big or too small for our babies gestational age. We've heard of Down Syndrome, we've heard of Spina Bifida, yet very few, almost none of us have heard of America's #1 birth defect ~ Congenital Heart Defects {CHD}!

We fell head over heals in love over the sound of our babies heart beat. And we anxiously await to 'see' our baby for the first time at out 20 week ultrasound appointment. We blissfully enter our doctors office full of anticipation over the sex of our unborn child or just to meet the little bean on screen. Yet we are sadly ignorant of very important facts. Fact that can save our babies life, if we only knew.

Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

This year almost 40,000 babies will be born with a congenital heart defect.

In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

There is not yet a preventative cure for any type of congenital heart defect.

Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

So what can you do?

In a recent health article it was stated that most of the time, CHD is overlooked during the 20-week ultra sound. Thankfully, this was not the case in our situation. And it allowed us needed time to research and prepare. Yet, I've heard of many stories where parents are completely blindsided by the news their baby has a congenital heart defect.

Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago's Children's Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know. She says: "By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth." Here are the recommendations:

Top five questions expecting parents should ask their doctor during the 20-week ultrasound exam:

1.Do you see 4 chambers?

2.Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.

3.Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4.Is the heart rate normal? Is the heart rate too slow (less than 100 beats per minute), too fast (over 200 beats per minute), or irregular? *Note: A normal heart rate range for a fetus is 120-180 beats per minute.

5.Is the heart function normal? Does the muscle work normally? Is everything hooked-up correctly?

Unfortunately, some heart defects go undetected at birth and newborns leave the hospital with a life threatening condition. Often times it remains undetected until it is too late and an infant is in heart failure or worse. You can read about Cora's Story a beautiful newborn baby girl who passed away in her mother's arms while breastfeeding due to an undiagnosed heart defect. Yet, a simple, painless and affordable test called Pulse Oximetry Screening performed on a newborn hours after birth could have saved her life.

A normal blood oxygen reading is somewhere between 97 – 100%, however within the first 24 hours of life these levels may vary considerably, therefore some physicians believe the test should not be performed until the baby is at least 24 hours old to remove the likelihood of an inaccurate reading. And although, not all forms of CHD can be detected through pulse oxymetry check, it is a step in the right direction.

CHD is real. It can affect any of our children and come into our life when we least expect. I was blisffuly unaware of these important facts until CHD rocked my world. But knowledge is power. Ask the right questions and be an advocate for your babies health.

Petunia and I

2011-01-30T13:49:00.000-08:00

I feel bad because I have yet to buy much for this baby. I've bought him just a few onesies and a nice swing on craigslist and that's about it. I've been looking for a cute coming home outfit but have yet to find 'the one'.

Today, however, I happened about a diaper bag that I just could not pass up. Lately I've been pretty frugal, questioning my purchases, trying to find reasonable more wallet friendly solutions to things I would like to buy.  BUT today I just couldn't resist!

Ever since a few years back, way back before I had Alexa I had seen a mom carrying a Petunia Pickle Bottom diaper bag and I thought it was the cutest thing I had ever seen. It almost made we want to have another baby just so I could purchase this diaper bag. After I got pregnant with Alexa I remembered about this little 'want' I had, however, I found another much more reasonable yet still super cute diaper bag by Timi and Leslie, so I went with it ... and I was happy.  That diaper bag is still in very good condition but very girly so I decided I can't do that to my son in public. Which lead me to today.

Browsing innocently at Marshall's I discovered this bag. And all of my previous love/lust for this bag came rushing back. I reasoned with myself that my diaper bag would soon be replacing my hand bag so it being cute and stylish was sure to bring me some joy and cheer to all the diaper changing duties I would soon be performing.  Plus at a great price - I looked on line and they are about $150 dollars I got mine for $65. Plus mine came with the stroller attachments, which cost an extra $20.  So that's over $100 savings!   Woo hoo! So now I'm very much looking forward to using my new bag with my new baby and fulfilling this little secret desire of mine.   Do you have a favorite diaper bag or something you give yourself permission to splurge on?

Crusty and Pacemaker Check

2011-01-28T08:52:00.000-08:00

This whole week has been filled with crusty eye syndrome a.k.a. conjunctivitis. Both girls have been greeting the day with their eyes glued shut. Poor Lexi would wake up scared in the middle of night because she tried to open her eyes and couldn't.  At first I thought the pink eye was viral and not much to do about it besides warm compresses and cleaning the eyes with cotton balls and chamomile tea. I don't like to jump on prescribing antibiotics {unless heart related and necessary of course} and would rather wait and help the body heal itself. I went to Sprouts looking for an Eye Bright herb but was bummed because I only found it in capsule form. As it's name implies it is very beneficial for the eye ~ making it bright and healthy.

After seeing my poor baby with swollen lids, red eyes and lot's of yellow/green discharge I came to the conclusion this looked more like a bacterial infection than a viral infection, so I finally called the doctor yesterday. They ordered her a prescription for antibiotic drops but the pharmacy called to tell me it had been delayed. 24 hours later we still have no meds. Things looked better yesterday but they both still woke up with crusty eyes again this morning.

Yasmin missed school yesterday and is out again today because of a fever, sore throat, cough and achy ear.  After having a fever of 102.3 on Wednesday night and waking up feeling pretty crummy, as the day progressed she started feeling so much better and even wanted to go outside to ride her bike. Oh I forgot to tell you that she now can ride her bike without training wheels! Her daddy took her outside and she learned like in an hour ~ it was amazing! Literally, I went to put Alexa for a nap and fell asleep with her and by the time we both woke up she was riding like a pro!   So anyway, it's weird to me that her fever creeps up at night and she as all these aches and pains she doesn't really complain about too much during the day. I might be taking her in to the doc to get that ear checked out not sure yet {we will be playing it by ear ~ lol!}

So this week has not been a good sleeping week - with children waking through out the night plus I've also been so uncomfortable trying to sleep already just tossing and turning from one side to the other. And I know I will realistically not have good sleep again for at least another let's see year or two! Wha!

Regarding the pacemaker, Alexa had a home transmission check on Tuesday the 25th.  I forgot to send the transmission during the day and ended up doing it like at ten at night. But it was okay because Gabe wanted to see how it was done. Everything went through really easily. The last time I had tried it had trouble getting a good signal. The next day the cardiologist office called to say that, hooray, everything looked normal!   They want to see her in the office in 3 months. That is like two weeks before my due date! I think I will be practically 'rolling' into the office that day.

It's a boy! And Fetal Echo Results

2011-01-11T14:52:00.000-08:00

IT'S A BOY!

We found out the sex of this baby last month, at our Level II ultrasound in December. Honestly, I had been telling my hubby all along I really thought it was a boy and would be shocked if it wasn't - so I was glad to be proved right. And he was impressed by my motherly intuition to say the least. =)

We hadn't shared the sex with too many because we wanted a reconfirmation of that info before we announced it more publicly. When they asked us if we wanted to know the sex back in December, we decided yes, for two main reasons.

1) Our first two kids were surprises ~ so we have already experienced the joy and anticipation of waiting. So we figured our last two we would find out, which included Alexa and this baby.

2) I need to figure out where I'm going to put this baby {lol ~ that sounds bad} but really I just mean we've run out of rooms/space and in order to make some space wanted to know if I should keep or move out all the baby girl clothes Alexa has grown out of. I also need to figure out if Alexa and this baby should share a room for now or if I should move Alexa to her sister's room. Would love to hear your ideas!

So anyway, I now feel like I can {cautiously} proceed with the 'clean the room out' plan. I had a friend who was told boy, boy boy and then ended up having a girl, hence my apprehension with this matter. But we could clearly see all his little parts so there is not much denying the fact. We are thrilled as this means we will have two boys and two girls and our older son gets to have a brother!

However, of even greater importance is that the fetal echo cardiologist told us the baby's heart looks great! We had our much anticipated fetal echo this morning. I was so stressed, because Caleb was sick this morning, Yasmin missed the school bus, Alexa stayed home with Nana so there went my carpool partner, traffic was terrible and I still had to pick up hubby before my appointment. We were late but they still thankfully took us in. It felt much different than last time. We were still a bit nervous but since the Level II ultrasound gave us good news we went in feeling much more optimistic and just much more educated and prepared on the matter. I couldn't help but remember the first time I lay on that bed for my last pregnancy. I was ~~scared~~ terrified about what they might find, about what that meant for the baby I already loved SO much. The appointment was long. They were being very thorough. They were training a new doc to do fetal echos so they were taking their time. Either way my hubby and I were just thrilled with the results. We are so thankful for a healthy baby boy!

After entering the CHD world and seeing much pain and loss I will never again take for granted the health of my baby's or any baby's. The body is so wonderfully made and so complex I realize more than ever now there are many thing that can go wrong. I just hope/pray that baby makes it safely into our arms and home.

The only other thing that remains weighing heavily in my heart is Alexa's next echo appointment, which is suppose to be done sometime in April - about a few weeks before my due date. I just pray pray pray for more good news, really just no change in her pulmonary conduit pressure would be awesome! Sigh....

But for now everyone happily anticipates the new arrival of the 'little brother'. We are working on names!

Memory Lane 2010

2011-01-07T11:57:00.000-08:00

Here are a few highlights from our 2010 - it was amazing!

January
Alexa had her heart cath in preparation for her open heart surgery.

She spent two nights in the hospital. One the night after the cath and
another a few days later when her 02 levels dipped lower than usual because of the cath.

I spent the month recovering from a torn calf muscle
and preparing emotionally for what was to come.

On a fun note we took our older kids to the production of Annie!

February
A very emotional month! On Feb. 23, 2010 our baby endured an

8 hour open heart surgery. Alexa recovered well but needed to be re operated 6 days

later to insert a pacemaker as she was in surgical heart block. On Wednesday, March

3rd {after 8 days} we walked {ran} out of the hospital doors -so very grateful and ready for HOME!
We are so thankful for the love and support of family and friends during this time.

March

Was spent mostly home and at follow-up doc appts. Alexa was completely

transformed from being easily winded to running non stop like the energizer bunny!

We could tell she felt great, better than she ever had before. It was a joy to see! We

settled into our ‘new’ new normal. Family came from out of state to visit and to take

grandma back home {after helping us out during this time}.

April

Celebrated my parents 35th wedding anniversary!

Enjoyed meeting other local heart families at a Mended Little Hearts Picnic.

Attenden an Arizona Diamondback game with Caleb’s baseball team.

Caleb also won Academic Achievement Award at school!

May
Celebrated my brother and sis-in-law 10 year wedding anniversary at a

beautiful beach house in Oceanside, Ca. {that we almost burnt down having a fish fry

in the patio ~ yikes!} Also, attended District Convention and explored Sabino Canyon in

Tucson, AZ with kids. Hiked the canyon and swam in a rare Arizona river and waterfall!

June
Went to Disneyland for the first time with Alexa in our family!

During this trip was the first and only time Alexa got sick the whole year!
Despite the illness, she was in good spirits and enjoyed Disney and the beach!

Enjoyed this vacation with hubby’s side of the family.

Kids also took swim lessons and enjoyed lot's of swimming at Nana & Tata’s home.

July
This month we said our sad goodbye's to our beloved dog Dash.

Alexa went to Texas to visit Grandma for the first time!

We got a new dog named Marley.

We visited {Spanish} District Convention.

August

This was back to school month - Yazzy started 1st grade and Caleb 3rd grade!

We were busy helping Nana and Tata move out of their home.

Kids enjoyed, last days at Nana's pool.

We found out we would be welcoming a new baby into our family!!!!

September

Took us for a visit to Austin, Texas. I was in love!

We had/have hopes of possibly moving there one day.

We also visited San Antonio, Texas including the Alamo and River walk.

Alexa turned TWO Beautiful Years Old on the 2nd!

Oh, I was already beginning to feel drained {6 weeks preggers}.

October
Finally after what seemed like many months of packing and repacking,

we finally just enjoyed being home! Alexa was potty trained this month! She did great!

Only took her a few days to get the hang of it! {proud mommy!}

I launched my new{redesigned} photography website I had been working very hard on.

My baby boy turned NINE amazing years old on the 17th!
Can't believe I have a child that old already!

And he got named Student of the Month {again - proud momma}!

November
We participated in the first Phoenix, Arizona Congenital Heart Walk!

With the generous support of family and friends we raised over $500 for Team Alexa,

supporting The Children's Heart Foundation!

I photographed this event and a few others.

Went to a nice party at my lil' sis' house and grandma came over for a nice visit.

December
This month we had our level II ultrasound and found out the baby looks great!

We also found out the sex but this will be revealed in the next week or so.
We were so happy and relieved!

We headed back for a trip to Mambas {grandma’s} house in ol' El Paso Texas.
Spent nice time with hubby's family relaxing and eating.
My baby girl, Yazzy turned SEVEN wonderful years old on Dec. 28th!

{kid's crazy hair day at school -last week of school 2010}

What a year!

Our Trip to 'Mambas' House

2011-01-03T11:33:00.000-08:00

Everyday, for about two weeks before going to grandma's house in Texas - every time we would get in the car to go anywhere Alexa would exclaim "Mambas House!!!???" And I would very patiently have to tell her over and over, not yet baby, only 12 more days, or 8 more days, or 2 more days, and finally tomorrow ok?

And so the day finally came that we set off for our trip to Mambas House as she call's Grandma's House. We got to spend time with my hubby's family and got to eat A LOT of good food my mother-in-law had prepared for our visit.

A couple hours into our journey to mambas house we got to delight in this glorious sunrise.

While at Mambas House we also got to enjoy a fabulous moon rise, which this picture in no way does justice to. The moon looked like a GIGANTIC egg laying sideways on the horizon. So awesome!

Then Alexa investigating things outside of grandma's house. I love this little outfit. I took it off the manikin at Old Navy! =)

And here is Alexa after she decided she was still hungry after dinner and picked up a cucumber from grandma's kitchen table and was chomping away! Can't say she doesn't like to eat.

And here is poor Mamba knocked out from all her cooking!

And my other baby girl a couple days shy of seven years old seen here with her oldest cousin Trisha.

And last an almost group picture. I'm missing because I'm taking the pic and then a couple of nieces {cousins} are also missing. But here is part of the group we got to spend 5 days and share one bathroom with. =) Yes, Mambas house is small but it's warm and cozy and always filled with love.

It was nice visiting with family. It was nice for me to able to relax and not have to cook. It was not nice I gained a few extra pounds, but I'm pregnant right so maybe nobody will notice. ;)

Baby #4

2010-12-17T13:45:00.000-08:00

Okay, so I've been hiding a lil secret. Okay, maybe a big secret but I feel it's time to share...

Baby #4 is on it's way!

say hello to my little friend!

Yes, we're nervous and exicted! As you can see the baby is not a little bean anymore - I am 19 weeks today. I had my level II ultrasound yesterday and docs said the baby looks great! Heart looks beautiful! And we are thrilled and relieved beyond belief. We will still be having a fetal echo in January, just to double check things but it was so nice to hear those words. With Alexa we found out something was wrong at our ultrasound appointment, so this time I was prepared for any news but hopeful for good news. I will always suspect {and regret} that me getting very sick with a fever and bronchitis the first few weeks while pregnant with Alexa affected her heart development. But I know I will never know. So with this baby I was very nervous and cautious not to get sick those first crucial weeks.

We also already know the sex of the baby but I'm going to wait to share that news a bit until we tell our families. Since I'm almost 5 months now, the usual nausea and fatigue are gone - thankfully! Now I just have some yummy cravings I must obey and to wrap my brain and heart around being a mother of F O U R !!!!

If

2010-12-14T15:23:00.000-08:00

If I could only be as cool as her.

Heart Walk Pictures

2010-12-09T10:29:00.000-08:00

Hello! Just wanted to update with some pics of the Heart Walk. I know it's a month late but better late than never. It was so great to be there with so many heart families and getting to meet heart momma's I only knew through their blog. Thanks to family and friends for your support!!!

Alexa ~ our precious little heart hero!

Congrats to my nephew Brian who won 2nd place on the 5K run!

Mostly our whole group - Thanks for your support!

William Folley, Executive Director of The Children's Heart Foundation &

Janeen Kododynski, President of the Phoenix Chapter of The Children's Heart Foundation

my little family at the finish line =)

Our family with professional baseball player and CHD survivor Aaron Boone

Congenital Heart Walk - November 7th!

2010-10-29T09:50:00.000-07:00

The Congenital Heart Walk and 5K Run/1 Mile Family Fun Walk at Tempe Diablo Stadium on Sunday, November 7th is less than a week in a half away! As many of you know, our daughter Alexa was born in 2008 with congenital heart defects that required her to undergo several open heart surgeries and other invasive medical interventions in her short two years of life. Unfortunately, she will require further heart surgeries down the road and lifetime cardiac care. Motivated by the needs of our daughter and all families affected by CHD, we are proud to have become directly involved with The Children's Heart Foundation.

The goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. They accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects. We are joyful that our daughter is happy and thriving due to medical advances in the treatment of CHD!

The Congenital Heart Walk and 5 K Run/1 Mile Family Fun Walk is an exciting new national joint effort between the Children’s Heart Foundation (CHF) and the Adult Congenital Heart Association (ACHA). Proceeds from the event will go towards researching and improving the quality of life for everyone living with Congenital Heart Disease (CHD). Did you know that CHD is the number one birth defect? 1 in 100 babies are born with a CHD, and there are over 1.8 million children and adults living with CHD today.

The 2010 Phoenix Congenital Heart Walk and 5K Run will include:

• 5K Walk

• Timed 5K Run

• 1 Mile Family Fun Walk

. Sports Talk Radio "The Fan" 1060 AM Roc and Manuch as our Emcees

. Guest appearance by former Cincinnati Reds star Aaron Boone

• "Healing Hearts" Family Festival- Bounce house, slide and carnival games by Inflatable Fun!

. Free food and refreshments

. Yippee Yoga classes for kids

. Performance by AZ Swing Kids

. Build A Bear Mascot

. Craft table

. and much more!

Have you or any of your friends been looking for a 5K run that you can WIN? This is a first year event, and we are expecting a small number of runners, so a chance of winning in your age group is BIG! Not a runner? Bring the family and join us for one of our walks and our "Healing Hearts" Festival.

Register today at www.congenitalheartwalk.org. This is a 100% fundraising event, and there is no minimum donation to register. If you want to wait and register at the event, you can do that too! There is no cost to the event, but donations are welcome (and if you want a t-shirt you have to raise $100). If you can't attend the event, but would like to send a donation you can do so online with a credit card or you can send donations to (checks should be written out to Congenital Heart Walk):

If you wanted to walk as part of our team, just click on this link to our website and you can join "Team Alexa" or if you can’t walk you can donate in her name!

http://congenitalheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=429992&lis=0&kntae429992=81FDC46832404273A86D12EAB4B61D2B&supId=0&team=3938928&cj=Y

We will also be printing Team Alexa shirts so if you would like one, please let me know the quanity and size, they will be $10. This is the design I came up with (I'm not a graphic artist but they should work) ; )

Front of T-Shrit

Back of T-Shrit

I look forward to seeing you, your family and even your family dog (yes, dogs are welcome!) at the event! Please forward this e-mail to anyone else you think would like to attend the event!

Hope to see you all there!!

p.s. If you are in need of family photographs I have also pledged to donate 5% of every purchased session to The Children’s Heart Foundation and Mended Little Hearts of Phoenix. You can see my website here:

Wild Child Photo

Cardiology Update

2010-10-26T09:30:00.000-07:00

Hello everyone! I know it's been while. I know everyone is busy so I will spare you details {for now} about how I've also been so busy ~ too busy to write.

Anyhow, this post is about Alexa and her cardiology appointment done yesterday Monday, October 25th. I was a little nervous about the appointment because I knew she was be getting an echo done to check on the function of her heart not just a pacemaker check.

Okay, so first of all I had to say this was the first appointment she had with no tears! Yay baby girl! She behaved like a such a big and brave little girl. She is 25 months old and weighs 28.6 pounds and is 35 inches tall (almost 3 feet!) I beleive that is about 90th percentile for height and about 80th percentile for weight! So happy my heart baby is thriving!

Okay, so they also did a blood pressure check and that was good and then moved on the echo. Took off her shirt laid down next to her on the bed and gave her the lolli pop. She was happy and calm the whole time! She even gave me back the lolli pop and just relaxed and watched the Dora video they had on. She did not fuss or complain not even once! I knew they were getting great images and would know exactly how her heart was functioning. About 30 minutes later the echo was done. We then waited for the results.

Dr. P came into see us. She was not scared of him this time. She actually found him a bit amuzing and engaged with him in his silly attempts to make her laugh and smile. Doctor said the echo looked great! Her ventricles were great, no leaky valve, etc. I was so very releived! So very relieved. He did mention one thing however, that they will keep on eye on which is a small bit of stenosis where the conduit was sewn into to the top part of the pulmonary branch. Has anybody elses child had this? How fast did it change? What was the protocol? He said the number, I think pressure is 30 and they will just watch it, nothing to do about it right now. He said that number is considered low to medium. She will have another echo in 6 months to check on things. He said when it gets to maybe around 50 he will decide then if they will do a heart cath to try and balloon the area a bit and buy some more time. He said he does not expect the number to raise drastically though it should be a slow process. I sure do hope so! Plus he mentioned once she hits 3 her growth should slow down also allowing more time. She will just need a home transmission pacemaker check in 3 months but we don't need to go into the office until next April, I can't beleive it! Oh and she is also off all medicine for the first time in her life! At this point she was only taking a baby aspirin daily but he also said she did not need it anymore! Woo hoo!

So overall it was a good almost great appointment. I was very thankful. He also checked her pacemaker and said also all was good she had to go pee pee potty so he kind of hurried up at the end and I did not get much details about the pacemaker settings just know all is good. He said it was the first time I did not go into the office with a notebook of questions. I don't think it was the first time, but he was right, I was more relaxed than with my usual 20 questions per visit.

So Alexa is doing great! She is totally my wild child. Fearless as can be which scares me. She climbs on top of things, runs away, wrestles our big lab dog. She is two now! And I feel terrible I didn't post any little stats when she turned two, but remember at the beginning I mentioned how busy I've been? So yeah, that's why. I will say however, that she is currently obsessed with Toy Story and loves all things Buzz, Woody and Jessie. Actually as I type this, she is here wanting me to find her Toy Story music cd so she can dance. =)

Jealous

2010-09-21T10:36:00.000-07:00

Hello all! I know I've been missing in action and have been very bad by not updating so many things that have been going on but I will soon.

Right now I am just bursting with jealousy and need to write about it!

I NEED FALL!!!!!! I LOVE FALL! I MISS FALL!

I am insanely jealous as I read about other people enjoying the change of season. The new crisp air. Having their windows open. Talking about boots and scarfs, apple pie, changing leaves etc.

As I type this it is 102 degrees in my neck of the desert. I am tired of the hot air. The hot mornings and the hot evenings. It has begun to cool down a little at night but I am asleep when that happens. I only catch a trace of it when I wake up about 5 am and then by 8 am it is warm again.

I don't know why I love autumn so much. I even thought of naming Alexa, Autumn. I was jealous of the girl in high school named Autumn. I love big puffy clouds, and cool breezes. I love the smell of spice and pumpkin pie. I had some pumpkin pie last night with whip cream - it was the best! But it somehow feels wrong eating it with your windows closed and your air conditioning on.

I need to move. I want to move. My kids don't miss autumn because they've never known it. But I want them to know it while they are still children. We went to visit Austin, Texas and it was lovely with huge trees, rivers and lakes. I love the green, the rolling hills and the laid back atmosphere. I could do Austin.  It was warm and humid while we were there but there was still lots of people out riding their bikes, walking their dogs and with their baby strollers at 11 a.m. You could not do that here. Well you could but you would more than likely pass out and get a heat stroke.  I want seasons. I want less heat. I want autum..  Where should I go? I don't think I could handle tons of snow and ice. I've never lived where it snowed before. A couple winters back we were visiting family in El Paso and we woke up and it was snowing! It was so exciting for all of us. I don't mind some snow some of the time.  Is it bad to live where it snows? Is it hard? People here seem so happy to have gotten away of the snow and the shoveling. I just don't know. Do you love where you live? What do you love about it?

I grew up in southern California. We didn't have drastic seasons there but you do feel the change.  As a kid I would get very excited when September would roll around and Labor Day would pass and I knew that meant the end of summer. End of swimming and Popsicle's, camping trips and endless summer nights. You could feel it in the air.  It was crisp and fresh. The leaves began to fall, the days to get shorter. I knew that in a few short months, I would be standing in line in front of my class overlooking the San Gabriel Mountains filled with snow. And the cold wind from the mountains would blow down to my school and carry the leaves swirling back and forth, my hair flying in the wind and my hands covered with mittens over my my mouth to puff some warm air on them and ready to go inside our cozy classroom.

I want my kids to experience a change of seasons. To be excited and happy inside. I am crazy for this? Are the seasons important in your life and for your children? Or do you not really pay attention?  I've always been very in tune with my surroundings how they affect my mood. The breeze on my face, the warmness of the sun on my cheek, the big blue sky, the puffy white cloud streaming overhead. I am just so tired of the endless heat. Some people who are so tired of the endless winter and snow love it here. I've lived half of my life in California and the other half here, I am ready for a change.  Been thinking of Austin, Texas, Colorado, Utah or the pacific northwest but am open to all suggestions. Please tell me if you love where you live and why? Or the best place you ever lived or where you dream of living.

The Heart Mom Chronicles ~ Our Warrior Princess

2010-08-29T22:36:00.000-07:00

Today I am partaking in a blogging event put on by Stefanie from Every Heart Has A Story. We were invited to share how our journey with CHD began. Below are some of my first journal entries to this blog chronicling how we came to know of our baby girl Alexa's special heart.

Our Warrior Princess

Our life changed, on a beautiful spring day, April 28, 2008 to be exact. I was a little over 20 plus week pregnant with our third child. My family, husband and kids went to the doctors office to meet our baby for the first time on ultra sound and maybe, maybe not, find out the babies sex. We were thrilled! It meant, seeing our little peanut on the screen, watching it wiggle, counting all fingers, all toes, two legs, two arms, and a button nose. But then, a pause, some silence, some confusion and uncertainty, one doc, then another, lots of s i l e n c e with a little running around. Then finally, the news, as my husband and I looked at each other in disbelief, in love, in pain, in strength, in uncertainty, in unity and devotion they said it: "Something maybe wrong with your little ones heart". Whoah! What?! That hits you like a ton of bricks. Like the earth falls from under your feet. Like your life, and dreams flash before your eyes. Like you get the wind knocked out of you. Like your in daze. Like you want to wake up. Like you don’t know who you are? Or who you’ll be? Like your to weak and scared to face this. Like you want to know everything and you want to know it NOW! Like you just want to cry but you remember your in an office and your kids are with you and you don’t want to make spectacle of yourself but they just told you that something maybe wrong with your babies heart!! Their heart!! That same little heart you heard beating so beautifully just weeks ago. Their heart. Your heart. Our heart. It hurts. You feel it. It’s broken, both of yours.

But how? Why? What did they mean? What was it? Could they be right? Is it just a bad angle or picture? Were they being overly cautious or precautious? Did my baby have chance? Should I get my hopes up? Would I still get to meet the precious little being I had already fallen head over feet in love in with? I wanted them to tell me everything, explain all the details. Or tell me it was no big deal, routine, a piece of cake, a walk in the park. Give me some hope - something. But all they said, was that they could not get a good enough picture of the heart and they needed to send us to a pediatric cardiologist for a fetal echo. You know how long I had to wait with the torture of not knowing? Two very loooooong weeks! Why? On the same morning I found out the news about my baby that day at noon our insurance decided to cancel their contract with the Obgyn office and hospital I had been receiving care at. So instead of getting in to see the specialist in two days like they had promised, I was now without a doctor, specialist nor hospital. I had to start over from square one, finding a new OB who would care for me, and finding my way alone frantically trying to find someone who would do the fetal echo we needed, SOON, so I could get some something, some info, some piece of mind, the truth. This, although very frustrating at the time, turned out to be a blessing in disguise. In the meantime, I didn’t understand how this could be happening to me? To us? To my baby? We were the picture of perfect health. No family history of heart problems. Took all my prenatals, never had one drink, have never smoked, or ever tried any drugs. I’m so anti-drug I even delay as long as possible taking a Tylenol when I have a headache. I have birthed both my children naturally, no epidural, pure raw earthly mother power. I’ve given birth in water. Am into green healthy living. I am strong, young, pure, as is my husband. How? How could this be? And so this is where our journey into the unknown world of Congenital Heart Defects (CHD) began.

Alexa at one month old, first time home from hospital.

In the Mean Time

After the ultrasound appointment my family and I went to have brunch at a nearby restaurant. My husband and I besides trying to digest our food tried to digest what had just happened. Our kids were blissfully unaware just like we wanted. I cried off and on making my husband a little bit uncomfortable. I think he always feels people look at him as bad guy even though he was/is innocent of making me cry (99.9% of the time). But I just could not help it. I was clinging to the hope that they were wrong like they made it sound, just a bad angle, not good picture, etc. but it was too late for my heart already hurt and worried for my unborn child. The innocent baby in my womb.

I spent the rest of my pregnancy both trying to enjoy it as it was planned to be my last and also worried sick. Both trying to be positive and yet engulfed with negative thoughts. Smiling yet ready to cry at the drop of hat. Quiet yet outraged. Confused yet determined. I wanted a handbook to tell me what was normal to be feeling in this situation. I was lost with my emotions. Should I answer every soul that asked how I was doing, how the pregnancy was going, how the baby was, with the whole truth? Did they really care to know? Was there enough time in their day to really listen and pay attention to the whirlwind in my head? Would it be okay if I drew pictures or presented some illustrations? Would I bore them with the latest information from the top medical journals and health studies in cardiology and cardiothoracic surgery? Did they really want to know about my crazy dreams and worst fears? Would it be considered lying if I said everything was fine? All these questions, yet so little time to make decision before the person in front of you starts questioning your sanity or hearing. So lots of times I just smiled and said everything was fine. A lot of times it was, when I was feeling good, but sometimes there was just not enough time to get into details, or it was an inappropriate place for me to break down so I just didn't head down that path, and sometimes I did share my news. With family of course, with some friends and at times with total random strangers. It was really like a mathematical equation or the perfect storm - if the parts added up then I spoke. Usually softly but swiftly with my heart on my sleeve and my newly accumulated medical knowledge in the other.

It is hard trying to explain the heart though. It is indeed amazingly and undeniably 'wonderfully made' like King David in ancient times wrote about the human body. More so than I ever imagined or really cared to know in this lifetime. The heart is a beautiful complex organ, filled with fascinating chambers, arched passage ways and secret tunnels. It is a like an electrically charged symphony, beating, swooshing and pumping, collecting and distributing not only life giving blood but the deepest feelings and experiences of human emotion. I tried to explain. And people tried to understand. And that's all that really mattered. Some got nervous, some asked questions, and some told me stories. But mostly all told me not to worry that everything would be all right. Wow! Not worry? Worry was my middle name. Had I not introduced myself at the beginning? Not worry? How realistic was that? I wished I could do it. But just not possible for me.

As the days passed, and I went about my daily business, I would come across other pregnant mommas and wonder if they also carried a secret sadness. I wondered if behind their smile there was a story similar to mine. As we crossed paths, I wondered if like me they silently carried their anguish, a woman so fragile to speak for fear of shattering into a million little pieces in the Target baby section. Even at the perinatologist office, where you know everyone is there because they are considered high risk for one reason or another, you still just smile, wonder and look. All while, secretly wishing, to make a human connection to someone, anyone who can relate to what you are feeling. Or maybe it was just me looking to connect. I was going to be a third time mommy but this was new to me. This was an intense experience. Could I handle it?

In the meantime, our little peanut grew happily in it's first home. Loved, cuddled and nestled in the best place on earth.

My kids having fun painting on my very pregnant belly!

Waiting to Exhale

I still remember entering my first pediatric cardiology office. It was a hot May day (May 13, 2008). I was wearing a pretty black silk maternity top I purchased at the Gap, not really, it was at a yard sale, but it was pretty and it was from the Gap. I wore it because it made me feel good. I wanted to feel good. My husband and I nervously entered the office door, unsure of what to expect. Unsure of our baby's and family's future. On this day we would find out if something was really wrong and if so what or if it was all a big misunderstanding. I saw parents with babies, parents with children, parents with teenagers. I saw children walking out of the back office with a smile, new sticker in one hand and holding on to mom or dad with the other. I wondered if someday that would be me and my baby? I wondered why they were there? As I stood at the check in desk I could see rows and rows filled with patient files and I wondered how so many children could have something wrong with their hearts.

We were lead to a dark, fresh back room, that was playing a cartoon movie and had some mobiles hanging from the ceiling. I was told to lay down on my back and make myself comfortable. I tried, as comfortable as a five and half month pregnant woman could be. It was time for our fetal echochardiogram. I tried so hard to hold back the tears but as soon as I saw my baby on the screen the tears started flowing. How I loved that little baby! How my heart ached for that little baby! How I wished to know my baby would live! The tech took a bunch of pictures of my babies heart and then the pediatric cardiologist joined her to look at some of the images. It was an agonizing wait. I had waited two weeks for the appointment and now I just wanted to know already. They kept using words I did not understand and as time went on I knew. I just knew. My wish and hope that it was all a big mistake was not happening. My baby did have something wrong with it's heart. It was tragic. It was true.

After about an hour and half of laying down and cleaning my belly off from all that sticky gel, we met with the doctor. He explained our baby had something called Transposition of the Great Arteries. Doesn't it sound serious? Well it is. But he said that it could be corrected. Our baby would need open heart surgery shortly after birth! He used a lot of medical terminology we did not understand but he said by the time our baby was born we would. We left the office, feeling a little numb. Saddened that our baby had this diagnosis but also grateful their was something that could be done to help. The doc said our baby would/could lead a normal healthy life. And so, we focused on that.

That appointment was the first of many fetal echochardiogram's I had. At later visits, as our baby grew they were able to identify our baby also had something called a Ventricular Septal Defect and Pulmonary Stenosis. Unfortunately the Pulmonary Stenosis, ruined the chances our baby had of the one time switch and your on your way with the rest of your life surgery. I realize now, even that switch operation could lead to other complications but that most of the time it works fine one switch surgery and your done. Things got more complicated for us and the need for life long surgeries came into the picture. If you can imagine, we had just come to terms with the fact our baby would need one open heart surgery as a newborn, as terrible as that sounded it was still just one surgery. Now they were telling us open heart surgeries would become a routine part of our child's life. Routine?! How? And why? Could this really be happening? And it was.

All of our children were surprises. We wanted this baby to also be a surprise. On that first regular ultrasound, back in April, when we went to the OB office as family to meet our peanut for the first time, we told them we did not want to know the sex of our baby. But after everything that had transpired up to this point, I told my husband I needed to know. I needed to love my baby as person not know it just by this diagnosis. I already felt very bonded with my baby and I wanted to know who this special little person was. We were having a girl!!! One boy, one girl and now a new little sister. I was super excited. I love having my sisters although they are a bit younger than me. Okay a lot a bit younger than me. But still sisters share a special bond. And I was so happy to be having her. I was already head over feet in love!

Me Waiting to Exhale

Morning Glory

My daughter was born on a beautiful Tuesday morning, September 2, 2008, in a bright east facing 3rd floor hospital room with big windows and a lot of sunshine. Even though I was days away from my due date, I knew I would be laboring on Labor Day - yes, they call it mommy intuition. My contractions started small and far between but they got stronger and closer together through the night. I kept a small piece of paper and pen next to my bed in which I was writing down my contractions. I was waiting for them to get four minutes apart but before then as I turned in bed, I felt and heard a pop. My water had broken! It was my first time. For my other two pregnancies my water had to be broken for me. I informed my husband who immediately jumped out of bed and into the shower, called my sister who was going to stay with my kids and called my mom who was going to come with me to the hospital. My kids were a little worried as they just knew I had something broken inside and my daughter thought she was in trouble for dropping water. Yes, it was an exciting and confusing five in the morning! The moment we had all been waiting for was here!

My nurse was tough, a little too rough for my liking. But the day was beautiful! The sun was rising and our daughter's birth was near. I remember the the room was filled with a soft glowing morning light. It was the best! I don't know why I notice these things but I do. Maybe it's because I'm a photographer or maybe that's one reason why I am a photographer but anyway the light was the kind that brings hope of a new day, a new beginning, a second chance. My labor was strong, intense and fast. We got to the hospital about 7:30 a.m. and my daughter was born about 3 hours later. I guess I should say it was fast for me, my other labors lasted a lot longer. I wanted to sit up as it felt best, I wanted to actually stand up but they would not let me. Up to this point I had had two natural births including one in water, but now, because of the circumstances I was at the most high tech hospital with a team of great doctors waiting to greet my baby.

As the pushing phase neared I had mixed emotions. I couldn't wait to FINALLY meet my little baby. But I also feared for her life and her future. I knew as long as she was inside of me she would be fine. But of course that home was not meant to be forever. She had to come out. I knew though as it happened with my other pregnancies that I would miss having her so close, carrying her around everywhere I went. I would miss her kicks and her hiccups and the fullness of my belly filled with life and love. But she had spoken, she was now ready to be let out of her safe little cocoon.

As my body and mind worked to diligently bring forth life I was engulfed in intense pain, emotion, power, determination and exhilaration. But thinking of the fight my baby would soon face to save her life, gave me strength and courage to endure. Plus I had birthed my other two children without an epidural so I was determined to do the same for her. As my daughter slipped out and they brought her up I clearly saw her beautiful little chubby face. It was love at first sight! "She is beautiful!" I exclaimed. I turned to look at my husband and he was crying just like he had for the birth of our other two children. She was a big baby just like her brother, 7 lbs 15 ounces and 21 inches long. She looked perfect. It was hard to believe anything was wrong with her. I got to hold her in my arms for brief moment and kiss and talk to her, probably just a few seconds but that moment of her birth and me holding her are forever etched upon my heart. And every time I think of that moment this song comes to my mind as it reminds me of exactly how I felt on that glorious morning the first time I ever saw her face ...

Our beautiful newborn baby girl!

Let it Flow

On the day of my daughters birth, I could say truly the flood gates of the heavens were opened and down my tears came like buckets full of rain. I cried of course tears of joy but shortly after and for days to follow tears of sorrow. My baby lasted in the same room with me a few short minutes. They weighed her, checked her, touched her, looked at her and then of course we all knew they had to take her away. I had already asked my husband to follow her, and not let her out of his sight. One of my sisters followed him. She was taken to the NICU, her oxygen saturation low. I really wanted to be with her. Like right away. Like right now and forever!! I wanted to hold her, to kiss her, to admire her for a looong looong time. I wanted to snuggle with her, and smell her, and talk to her, and hug her but most of all I wanted to protect her and ... I couldn't. I wanted to trade places with her. I wanted to endure everything she was experiencing and was about to face. I wanted her pain and her fear. I wanted it. I wanted to take it all away. But it couldn't be.

After resting for a bit I insisted I wanted to go see her. Somebody wheeled me over there, I think a nurse as she explained how to get to the NICU. And for the first time, I saw my baby hooked up to many machines. The worse, was that I had to see her get intubated. A breathing tube shoved down her tiny throat. It was the worse. They held down her little head, as she fought the pressure of the nurses hands. And she gagged. And then she was silent. Silent for a very very long time. I longed to hear her voice, to hear her beautiful little newborn cry. I had only the chance to briefly here it right after she was born. Don't ever take that for granted listening to your child cry, it is believe it or not a beautiful thing. I listened attentively as the nurses explained the screens and machines. I looked helplessly at my beautiful little daughter now clinging for life. Welcome to this beautifully wonderful cruel world my little one. Mommy's here.

An on call Pediatric Cardiologist was examining an echochardiogram they did on her and determined she should be transported to the Children's Hospital main campus that same day. He said she would be better cared for as more things were available at the main campus should the need arise for further interventions. So now not only was my baby girl not in my arms and not in my room, now she would also not be in the same hospital as I. I can't say any of this took me by surprise, as it did not. But it was one thing to hear that it was going to happen and another to live it. I saw my little baby get all ready in her crystal clear NICU box to be "air vaced" (but really driven since it was a few blocks away) to the Children's Hospital. I stayed in that room, that empty room that moments earlier had been filled with frenzy and I cried. After a while, I called my poor family who had been waiting back in my room to come and get me but actually a nurse wheeled me back to my room. I felt defeated, deflated, conquered and crushed. I felt the biggest empty pain in my heart I had ever felt in my life. I was wheeled into my room where my brother, sister, sister in law, father and other brother in laws had been waiting. I couldn't look at them. My husband was with my daughter. My mom, with my other children and my other sister. The nurse helped me get back settled in my bed and asked if she could get me anything. And of course she could get me nothing that I truly wanted. After she left, I could feel my family looking at me and then at each other. I could not look at them. I could not look anywhere but down. I'm sure they felt lost for words. I however, in that moment just lost it. I couldn't hold it in anymore. I cried like a baby, like a little girl. No, I cried like a loving emotional mother who had just given birth to the most precious baby girl born with a congenital heart defect and had just had her baby taken away. I still remember my father, coming to embrace me, holding me tight as I felt the tears roll down his face and tell me everything would be all right. I couldn't help but feel like a frightened little girl. Thank you father for your strength during my moment of need. My room was filled with the fragrance of fresh flowers and decorated with balloons and cards of congratulations and well wishes from family and friends. That night I stood at my window and from my room I could see the top of the tower of the Children's Hospital my daughter had been taken to. My heart was there, but I was not.

Our first of many long day's in the NICU/PICU.

Life Since

Alexa will turn two years old in just a few days. It has been a long journey. A wonderful journey. A painful journey. A learning journey. A faith trying and faith filled journey. In less than 18 months, Alexa endured 3 heart surgeries. The BT Shunt at 13 days old. The Rastelli followed by a pacemaker surgery a week later at 17 months old. Unfortantely, Alexa's need for open heart surgeries has not ended. She will require her valved pulmonary conduit be changed as she grows and also the lines and battery of her pacemaker.

Below is a a picture of her as we are driving to the hospital for all her presurgery testing. Do you know how awful it feels to be driving your innocent/oblivious/precious child to have life threatening/saving open heart surgery?

Do you know how scary it is, those last few minutes you have with your baby before you have to give them up for an 8 hour open heart surgery, hoping, praying, fearing, it is not your last time together? This moment for some reason is the most painful to me of all the memories I have. It is trying to smile while your dying inside at the same time.

And this, no parent should ever ever have to see their child like this. Ever.

It's been just 6 months since her surgery, now a few days shy of her 2nd birthday and you could see just how wonderful she is doing in the pic below! It is truly amazing! We are so thankful to God, our family, friends, doctors, nurses and Alexa's fighting spirit she has made it this far! We love her with all our heart! She lights up everyday with her joy of living. She is our hero and warrior princess!

HAPPINESS IS ...

2010-07-29T16:30:00.000-07:00

{pictures courtesy of my budding photographer son}

My heart has been full of joy and at the same time worry. Joys for the wonderful blessings in my life and worry of all the things I want to do so I can live my life without regret. My mind is filled with jumbled thoughts, plans, projects, and goals. I am sure like many moms, I struggle to maintain balance.

Alexa had a cardiology appointment on Friday, July 16th. It was mostly for a pacemaker check. Since giving birth to my last little bundle I have been working on getting rid of those last pregnancy pounds. They were a stubborn bunch! After some relative calm set in after her surgery, every time Alexa went for a heart appointment I would make a new resolution to have lost X amount of weight by the next visit. I would lose a couple here and there but for the first time, I finally met my goal and lost TEN pounds! I was so excited to be going in as new thinner me. Although I felt kind of guilty of being excited about going to the doctor since the reason is a heavy one ~ to check on the health of my beautiful young daughter's heart ~ the truth I was excited to show off the new improved me and to have finally have accomplished this goal!

The good news is that the pacemaker is working great as is Alexa's sweet heart. I asked Dr. P about the underlying beating her heart began doing on it's own, reflected in the last visit. The one that had given both us some hope and assurance as a back up plan in case of emergency to the pacemaker. He looked at me quietly for a few seconds and then shook his head from side to side and said gently ... "It's gone."

As he said this, my eyes began to immediately well up with tears. My excitement about the visit quickly disappeared like a puddle of water on hot summer day. The reality of her condition again a dagger in my heart. I was trying to contain the tears to my eye sockets but they spilled out like overflowing dams. I could not contain my sadness. All I could muster to ask is "why?" I could sense his sympathy for me. He explained that just as a muscle in a cast gets atrophied the same is true with those underlying little heart beats her heart had begun originating on it's own, now since the pacemaker was doing all the work those little electrical pulses decided they didn't need to put forth any effort since the pacemaker was pacing her ventricles 100% of the time.

He tried to make me feel better saying they see lot's of kids with pacemakers that have no issues. Life with a pacemaker can be as normal as can be. Through a crackling voice I mustered, "Well I still don't completely understand all the functions of the pacemaker." I here a lot of lingo involving the pacemaker that seems so much harder to wrap my brain around. When I was trying to learn the structure of the heart, the various defects and what they meant as well as the repairs of the operation Alexa needed there was a steep learning curve but I did it. I understood. This I felt like I would maybe never understand. And maybe I didn't need to. But my crazy brain is like that, it's likes to know the why and how of things.

This is ELECTROPHYSIOLOGY, however. I guess I could/should cut myself some slack. I found out there are only 150 Electrophysiologist in the whole country - I could not certainly come to a complete understanding of what less than a minuscule part of the population understood. Dr. P quickly glanced at his watch as to make sure he had enough time and said he felt if I understood the functions I would probably feel better about the situation. It was not his first time explaining, he's done it many times. But remember - I had a hard time w r a p p i n g my brain around it. So he closed her chart grabbed a paper and began drawing.

He said that the pacemaker is a very sophisticated device with many capabilities. But in Alexa's case it was working very simply with only one function as her damaged AV Node. He said it was functioning like an egg timer set with a very low time limit counting mili seconds, if no heart beat was produced by her ventricle it would produce a beat and reset. That's the short version of it folks. Don't feel like typing out all the details but I will be posting the a picture of the drawing so in case I lose the original I can refer back to it here. My main concern, is that with a fearless toddler, the pacemaker wire will disconnect. Then what?! That's my fear. Alexa likes to run on the sofa. Yes, the sofa. I stop her but she thinks it's funny and fun. I tell her sit down and she sits for two seconds and as soon as I turn she stands right back up and tries to run around or jump. It is my fear when I wash her hands and push against her belly or she climbs out of the kid play pool and rubs the pacemaker against something hard ... it's just my fear. The doc said it would take A LOT to make it come undone. Like a hard blow to the abdomen or constant pressure on it like a kid twirling around on a jungle gym etc. We talked about having a second lead placed as a back up, insurance/assurance, he said some parents insisted on it, others did not. It would take another surgery so of course I would not put her through that now but in the future we will discuss it. Dr. P is caring and nice. I did feel better. Although I cried I felt peace and a sense that Alexa would be all right. So I left feeling grateful for the good.

Goodbye Dash!

2010-07-07T23:56:00.000-07:00

We L O V E you Dash!

Thank you for all the great memories! We are sorry that you got sick and that the doctors could not help you anymore. You deserved to live a longer life. You were a great dog! Thank you for being a part of our family! We have cried many tears for you today and I'm sure will continue to cry until the hurt begins to fade and only the happy memories remain. Your forever in our hearts! May you rest in peace.

Feeling blue because we're missing you ...

{good night Dash, Diggy, Diego, Dashell Robert Parr Morales}

Read this scripture to my kids in hopes of making them and me feel better:

"Do not two sparrows sell for a coin of small value?

Yet not one of them will fall to the ground without YOUR Father's knowledge."

(Matthew 10:29)

Resurfacing ~ CHD Boston Med

2010-07-02T01:27:00.000-07:00

Resurfacing - 1. To rise to the surface again. 2. To emerge after concealment.

This word would describe they way I'm feeling right now. Many resurfaced emotions. Deeply hidden emotions in the secluded places of my heart.

Did any of you watch the Boston Med show tonight? I had never seen this show until tonight. I watch very little TV to begin so its's no big surprise I have missed it. I had heard of it before however, but thought it was just another ER show on the block. Once I learned that this show was a real-life medical drama featuring real stories highlighting the lives of real doctors, nurses and patients then my interest level peaked and to top things off today they were featuring a fellow heart family. It can't get any more special than that, okay unless they were featuring someone I know or our hospital and/or doctors. So, it was still pretty special for me, so to the front of the TV I was glued for one hour. Very rare for me indeed.

A too familiar pain. Baby Sam and his parents featured on Boston Med.

No surprise I cried through out the show. Many past emotions both joys and fears resurfaced. I remembered how I felt when we were first told of Alexa's heart, I remembered how I felt when I gave birth and saw her for the first time, I remember how beautiful and normal she looked and was panicked to have anything happen to her. I remembered those same polar opposite emotions, Renee, the mom from the show was having.  Both in wanting and needing to be close to and love your baby but at the same time feeling like your placing some undesirable emotional distance between the two of you for fear of losing them.

I faced it all by my husbands side and it was still a rough road. She faced many emotions, doctors appointments and diagnosis alone as her husband was away in Iraq while she was pregnant.  Thankfully he was able to make it back for the birth and be there for the sugery and a least a short while after.  I remember how many times I cried on my pillow while I was pregnant. And sometimes my hubby would wake up and console me. And other times I would leave the room so I wouldn't wake him. It was a very emotional time. Pregnancy regardless is an emotional time but facing something like this just rocks your world like it's never been rocked before.

They showed baby Sam after his surgery being home with an NG tube down his nose for feeding.  I rememered how Alexa needed an NG tube for about a month after coming home. First because her heart was still tired from surgery and she hadn't yet learned how to handle sucking and swallowing and breathing all at the same time plus she was silently aspirating probably from being intubated.  Those first few days and weeks at home were crazy busy times, and I wondered how we would get through them but we did.

As I watched the show I heard them before a commercial break announce a website to learn more about mesothelioma as one older man on the show was having surgery for this. I thought to myself for sure they will share a site before the next commercial to obtain more info about CHD ... but sadly none was shared.  A great opportunity was missed. And I wondered, why? Is it because they just didn't think of it? Is it because they couldn't decide which of the CHD organizations to feature? Is it because there isn't ONE set UNITED group leading the way for the CHD cause?  I wish I could rememeber what the mosothelioma website they featured was so I could analyze it. I then proceeded to look up CHD.com and congenitalheartdisease.com and .org and nothing came up. Then I was reading a little bit through the most recent posts in Blog4CHD and came to a post by Nichole, Abby's mom, entitled Ten Wishes, that in part read:

"I wish the CHD community could come together and rally for this cause. I dabble here and there in CHD awareness. I would love to do more; however, I wish that pride and anger or self-serving indulgence did not corrupt our efforts. The squabbles and bickering scare me away enough that I am not as involved as I would like…I want to be involved enough to help change the world, not fight over board policies, presidents of organizations, and which organization has the “rights” to do what they are doing. I wish it was easier to be involved."

I have to say that, thankfully, I have not experienced these sort of the issues with the local group of people I have come across involved in CHD support and awarness. But I have heard other similar complaints, mostly on-line, about these types of issues occuring.  I know progress is being made. But I'm pretty sure we (all heart parents) really wish there was at least ONE BIG LIGHTHOUSE lighting the way.

As the surgeons in the show kept pointing out, this is a journey. A long journey with a series of steps. We are on this journey together. A journey for life in all sense of the word.  I wish and try to offer my own little bit of support and awareness through this blog and will also be donating a proceed of my photography sales to a couple of the CHD organizations like Mended Litte Hearts and/or Children's Heart Foundation or maybe another. Have not ironed out the details yet but am working on it. I just know that like my cousin Al ( Hi Al!) recently posted on his fb profile:

"One person can do great things. But people together can do even better."

I know and have faith that the true releif will come at the hand's of God mesianic kingdom. But meanwhile, we have met many wonderful people on this journey, many who are striving to make a difference. Thank you.

Disneyland and Strep

2010-06-29T12:49:00.000-07:00

Alexa was pretty sick a few days before we had our planned trip to Disneyland. I first thought she had a stomach virus since we have been swimming and could have possibly ingested some pool water. Then I thought she had a UTI because she was acting like she had pain while urinating. I picked up some cups at the pediatrician's office before our scheduled appointment so I could try and collect her pee but I missed it two times. I cried but will spare you the sad details.

She was scheduled for the last appointment of the day. Although we (doc and I) did not believe Alexa to have Strep they decided to check for it just in case. To our surprise she tested positive. So regardless of it being a stomach virus, UTI, whatever, she need antibiotics anyway because of the Strep. This is the FIRST time Alexa requires antibiotics besides those taken during her hospital stays for surgery. I think that is pretty impressive considering she almost 2! I knew after the antibiotics kicked in she would be feeling better soon. And she did. Fever subsided her more usual chipper self ream-urged.

I was excited to be taking our three kids together to Disneyland for the first time. We had taken our older two years past but after everything she went through, it was a dream a come true to be there with Alexa our WHOLE family. Unfortunately she developed diarrhea and vomiting while on our trip. Could have been again because she had a stomach virus on top of Strep or found later Strep also causes stomach upset or could have been a reaction to the antibiotics. Either way I spent lots of time in the restroom and baby caring area changing her and cleaning our stroller after a blowout.

I kept thinking about how this was Alexa's first time going to Disney. Watched how excited my son was to be getting on all the fast rides and wondered how we and Alexa would deal with her possibly not being able to ride them in the future. Yazzy said she was excited to be going to Disney for the first time as 'a big kid' since last time she went she was 3 years old so she says she does not remember much. I think she did not enjoy the park as much as she is getting older for the kiddie rides but still scared of the big rides. She did enjoy meeting the princesses though!

Thankfully we got through our trip fine and thoroughly enjoyed it. Especially the cool California weather! The only worry I really had was Alexa dehydrating since she was peeing only about 3 times a day and refusing to drink. I almost took her to a children's clinic but then she decided to drink some more so I felt better.

The day after Disney we decided to go the beach. We tried finding Corona Del Mar and got lost and ended up in Newport Beach. We decided to stay as it had lot's of sand and was not crowded. We went with hubby's family so the kids had a blast playing in the ocean with their cousins.

The day we were coming home we went to Downtown Disney to do some shopping, browsing and lunching. Caleb had been requesting to go to the Rain Forest Cafe for a while so we obliged. Had myself the only big meal of the trip. A nice steak with coconut shrimp and shrimp scampi, mashed potatoes and roasted veggies!

When we returned home we spent some more time with hubby's family and Alexa bonding with their pup!

We now feel like this!

Welcome Summer! (I think)

2010-06-14T18:12:00.000-07:00

It's not officially summer yet but when the thermometer reads over 100 degrees I think it's safe to say summer has arrived.

We have been doing well and having fun, hence, the absence of posts lately.

We are reaping the fruits of our labor from our vegetable garden, i.e. fresh tomatoes, chillies, jalapenos and squash. I just took a pic of some tomatoes before they fulfilled their destiny in some fresh salsa!

The kids have been going to swimming lessons and enjoying the pool.

don't mind the towel we are cardinal fans (don't tell hubby)

We went to stay at a beach house in Ocean Side celebrating my brothers and sis in law's 10 year wedding anniversary. Congrats!

alexa

me and my honey

ocean side, ca sunset

strawberry farm picking

one for the road

I've also started doing Insanity workout's trying to burn those last 10 stubborn pounds. Gotten addicted to having Shawn T yell out me! Dig deeper! And the workouts are totally insane - I am not a person that sweats much ever instead I mostly get red {see tomatoes above} so I feel so excited to actually have some sweat dripping down my head when I'm done with the workouts.

Been trying to clean, declutter and organize although with 3 kids at home it's a slow process.

Alexa has just been enjoying having her brother and sister home from school to keep her company and busy playing also called making a mess.

Went to our convention in Tucson, AZ and went exploring/hiking/swimming in Sabino Canyon, which we all loved. The best was hearing my daughter say, 'I can't believe I'm actually swimming in a river!" And watching all of them have fun under a waterfall! Hard to believe there even is one in Arizona.

trailing down almost four miles

under a rare arizona waterfall

an amusing sign

The following picture is special to me because back when Alexa had her surgery in February we stayed at the local Ronald McDonald house that was right next to this mountain. At the time it was snow capped and from the dining area you had a great view of it. Because of our circumstances (being in hospital 24/7) we did not get to enjoy this side of Tucson nor the view. We have been going to conventions every summer but always staying near the airport. So this time we decided to stay at a hotel located north of down town close to the RMD house. We finally got to explore the area and enjoy the view.

hotel view

We are now getting ready for a trip back to the beach and our first trip to Disneyland with Alexa!

And a trip to visit Austin, Texas before summer is over to visit our possible new home town ~ actually really curious about Georgetown, Texas too so if any one of you have lived there or been there would love to know what you think of the area.

I really think we should just begin to live out of a suitcase because I'm getting quite tired of packing, unpacking and repacking.

So that's it for now folks. It's dinner time!

From Blogger Pictures

CHD Again

2010-05-20T08:03:00.000-07:00

I had gotten to the point of enjoying entire days without thinking of CHD until a few days ago. It reared it's UGLY head back in my life. My heart breaks for these families that have recently lost their children. Please keep them in your prayers.

One is Allie, we met her parents in the hospital when we were there with Alexa back in Februray. Yes, in February! They have been there all this time. Allie fighiting one thing after another ~ such a brave and strong baby girl! Last week she was sitting on her mommy's lap smiling, looking like she might finally get to go home. She then turned very septic and today I read she passed away.

My heart also aches for Bryce and his family. A 13 year old boy waiting for his 2nd heart transplant. All he wanted to do was be in school and hang out with his friends. Instead he enured many long hospital days, strokes and organ failure and has now sadly passed away.

I has also recently began to follow Chrissie's journey. A precious little girl that has endured way too much for her short age. As I read her mother's blog I was brought to tears by her relating the story of her needing to get off ECMO and telling her daughter to fight while Chrissie although suppose to be sedated from drugs had tears rolling down her face. She has also sadly just passed away.

Please pray for these families as they must endure this unimaginable pain and loss.

I HATE that CHD can do this to children and families! I HATE that it cannot be cured now! I HATE that you never know what complication can arise!

It is just a reminder to enjoy each day to the fullest and love and enjoy your family today like it were your last.

Weekend in Pictures

2010-04-28T10:37:00.000-07:00

This past weekend we were able to meet with other parents of children with mended hearts at a local park throught the Mended Little Hearts Organization. It was great meeting other heart moms and watching our kids who have beat the odds just run and play. I look forward to working with Mended Little Hearts on future projects and helping and meeting other parents along the way.

Elisa, Me and Daniele

A partial group picture

On the hill.

After the picnic we went to enjoy a the Diamond Backs play a game. My son got to go out to walk the field with the little league baseball team my husband had him join. They are the Angels! Go Angels and D-Backs!

The Boyz!

Say cheese!

Perfect game weather!

Loving big sis!

The fabulous five!

Alexa was surprisingly good through out the whole game which was pretty long. It's nice to be able to go out and just take her places now. She is discovering a whole new world she never new existed. Everywhere new we go she says "Wow!"

Life, for now, has resumed to normal. After finding out about Alexa's CHD I always wondered if I would ever feel this way again. If you are knew to the CHD journey please know it is possible. Not only to survive this journey but to be happy again.

grate·ful·ness ~ echo and cardiology update

2010-04-23T23:35:00.000-07:00

As I began to type this blog update I realized that today was Alexa's two month anniversary since her Rastelli surgery! She has come a long way! Alexa had an echo and cardiology appointment this past Monday, April 19th. I was a bit nervous, since this echo would give us a lot of insight to how her heart is performing with the repair now that it has had some time to heal. I was nervous too about how well she would do staying still for the echo since she does not like any docs doing anything to her and being still is important for good images. When they started she she did begin to cry and fuss but then she settled down and remained surprisingly still for most of the echo as we watched Elmo go on an adventure.

The week before I decided I need to try out the new pacemaker home monitoring equipment. I did a test and sent a transmission. This is what the pacemaker and the monitor look like.

I read all the directions and then played with it off pretending to put the antenna which is like a computer mouse on me, then on a teddy, then on Alexa.  Overall, it was pretty easy but I had a hard time getting it to pick up reception but finally it said it went through.  It collects all the info from her pacemaker and sends it directly to her cardiology office where they can check it and read the results.

Now back to the appoinment.  Dr. P was taking a while to come and see us and I was getting a bit anxious about the results. When I saw him walk in with a smile I felt some relief.    These are all the good things I remember.

1) Alexa grew two and half inches in 6 weeks!!! Simply amazing!

2) Alexa's pulmonary conduit pressure are nice and low, same as before about 24.

3)  There is absolutely no leaking coming from the valved pulmonary conduit! Dr. P said sometimes
      these can begin to leak even 3 days after they are placed in surgery. A leaky valve could eventually
      pose a problem for the ventricle. So no leaking is fantastic!!

4) Although Alexa is still in complete heart block, I learned that the lower part of her heart has
     begun to compensate for the lack of electrical impulses it would naturally receive from her AV
     node.   Before when they lowered almost wanting to turn off the settings on her pacemaker, there
     would be no underlying heart beat of her own at all. She was 100% dependant on the pacemaker.
     Dr. P was pleasanlty surprised that when he lowered her pacemaker she is now able to generate her
     own her beat independent of the pacemaker or the AV node!!! I didn't even know this was possible!
     I thought it was really impossible because of the heart block situaiton. But he explained that every cell
     in the heart is able to generate a heart beat. Before the cells didn't have to do that job because they had
     the signal from the AV node to tell them when to beat. But since her AV Node has now been silenced
    pretty much forver, the other cells decided to take over, although they cannot or have not generated a
    normal pulse at this point because 47 beats per minute is very low and anybody would be feeling very
     weak, sick and tired, fainting, dizzy etc. but it is WAY better than 0. If for some reason the lead
     connected to her heart were to become detached it would give us enough time to get to a hospital
     where they could help her!  The doctor was very relieved about this and of course as her mother I
     was/am extatic! I hope and pray that it only continues to get better and stronger.

5) Dr. P also mentioned that the amount of energy that it takes the pacemaker to generate a heart beat
     in Alexa's heart has also diminished. This is good because the least amount of energy it uses the longer
     the battery will last and not need to be replaced.

6) Another good thing was that he also adjusted how the pacemaker reads the information. He mentioned
     that Alexa's Sinus node (the body's natural pacemaker) that decides how fast or slow your heart needs to
     beat to keep up or slow down with you, is working great! He will now allow the pacemaker to
     completely follow her lead and set her pace since it has been working great!

7) One small downer at this point is that he noticed some small amount of scaring/stenosis of the conduit at
     the very top where it connects to the rest fo the pulmonary brach.  Think of the pumonary arteries as a
     letter T , the conduit is the vertical part and this was connected during surgery to the horizontal part of
     the letter T remaining parts of the pulmonary braches leading to the lungs. He said right were it connects
     at the top there is a bit of stenosis. Very minimal, not a problem at this time or in the near future. He
     said if it were to become a problem they could always go in via a cath to stretch or balloon that area
     buying extra time.

8)  He also took Alexa off her Lasix meds, so she is now only taking a baby aspirin daily!

So as you can see, so much good, no, GREAT news!!! I am so grateful for it all!!!

I did ask him what he thought about her getting earings and he said she would need antibiotics because risk of infection could travel to heart. I told him it's okay then, not worth it. We will deal with that when she asks for them. Also needing antibiotics if she gets her nails done. Thankfully I don't like acyrlic nails and will promote my daughters own natural beautiful nails so hopefully this won't be too much of a problem.

We go back for a pacemaker check in 3 months! For the first time since going to that clinic, they told me that the scheudle is not open that far ahead to call next month to make an appoinment. Now, I did notice that this week Alexa has been pretty pooped out by 8 p.m. normally she still had energy to keep going until later. So I'm not sure if this is related to the changes in the pacemaker or she also had a small cold this past week and maybe her body is just more tired from that. I am keeping on eye on it though.

Dr. P said Alexa was doing very very well! He said that her biggest hurdle was behind her. She climbed the hardest mountain already which was getting past the Rastelli surgery. He said there is no reason why she cannot grow up to have a happy normal life and he even mentioned her being able to have children if she so desires, when she get's older. I told him I had always been afraid to ask him that. But it brought tears to my eyes. I already see how she gravitates to baby's and cares for her dolly's being such a little mommy! So when he mentioned that, it was just too much for a heart mom to take.  When you begin this journey, you always begin with fear, fear of the unknown, fear of what this means for the dreams you have for your child and their own dreams. This past appointment was a blanket of hope over me. A reaffirming of my faith and my strength and our future together. I know challenges still lie ahead but I really wish the scared pregnant mom I was when we first heard the words CHD could have been at this appointment with me, maybe it would have still felt like we were in the middle of a blizzard but this appointment would have been a beacon of hope.  A cup of warm tea, cozy blanket and fire on a cold winter's night.

"When you come to the edge of all the light you know

and are about to step into the darkness of the unknown,

faith is knowing that one of two things will happen.

There will be solid ground to stand on or you will be taught to fly."

-Author Unknown

A Wonderful Life

2010-04-15T16:09:00.000-07:00

On Saturday, the 10th of April, we celebrated my parents 35th Wedding Anniversary {althought their real anniversary date is April 27th}! It was a surprise party held at our house! I had been extremely busy with this project. A collaborated effort between my siblings and our amazing spouses. The event turned out so wonderful and my parents were completely surprised. We invited long old time friends and family. Many came from out of state. It was great to see my parents reaction. They never had a wedding, nor went on a honeymoon and besides taking then out for a nice dinner they had never had a party for any of their previous anniversaries and so we knew it was time! About a month after Alexa's surgery I told my sibblings I was ready to start planning and working. We did it all very fast and then we waited for the day and prayed for good weather. At night it looked so nice because we had so many nice lights up in the trees and a string of lights above the dance floor. On the menu was tacos de carne asada, al pastor and chicken, beans, rice, pasta salad, chips, and all kind of salsa's. To drink there was aguas frescas de horchata, tamarindo, punch, beer and water. Yum! Here are a few pics to commenmorate the occasion.

My little family

My parents with good friends, the first to give them bible study

My siblings

The Mariachi's

Waiting in suspense for the guest's of honor {i.e. my parents} to arrive

19 months!

2010-04-02T17:22:00.000-07:00

In today's email box I had a message from BabyCenter entitled, Your 19th-month-old : Week 1, that in part said:

"When you're out and about, your toddler's favorite pastime may be running away from you as fast as she can, squealing in delight as you rush to catch up.  Build in extra time when running errands."

I could have used that piece of advice before I left home today. I went to do errands. Alexa was happily asleep for a little while. Alexa woke up. Alexa rearranged items in the store. As they said, Alexa ran away from me squealing in delight as I tried to catch up. Alexa was put back in her stroller. Alexa ate crackers. Alexa spilled water all over herself. Alexa got some new dry clothes. Alexa wanted to run away again.  Alexa threw a tantrum. Alexa was carried to the register. Alexa wanted the cash register's marker. Alexa was carried to her car seat. Alexa was taken home. Alexa's mommy read this message and thought about how Alexa turned 18 months old in the hosptial recovering from two {open} heart surgeries. Alexa's mommy makes a mental note that she needs to build in extra time for errands but has learned a more valuable lesson that babycenter forgot to mention ... to smile at these priceless moments.

Alexa 19 months old today!

And with her big brother who is smitten with her.

Way to go Caleb on winning an Academic Excellence Award today at the Honor Roll Assembly!

Good Day and Surgeon Follow-up

2010-03-19T19:06:00.000-07:00

Alexa had a great follow-up with her surgeon. Dr. T. He mentioned that not only did Alexa recover very well but she did so very fast. He also said that her heart is strong and sounds great! This of course was music to my ears! For the first time in a while I felt a sense of releif. I actually said aloud to myself that it was a good day! Joy has begun to set in and it feels great ~ I say welcome back!

Me and Lexi before we went to her appt with Dr. T

Lexi with her grandma (my mother-in-law)

So grateful she came from out of town to help us out during Alexa's surgery!

Also wanted to send my well wishes to two of Alexa's heart buddies in the hospital as they are still there and I have been thinking and praying for them. To Diego and his mommy Carmen. Diego was actually born with same heart issues as Alexa and he had his BT Shunt the same day Alexa had her pacer surgery, he will also be needing a Rastelli down the road. He is having some feeding issues and docs even mentioned a GTube, they have been in the hospital about 5 weeks now. Also to Allie, who has endured so many many surgeries, and was recently on ECMO got off but needed a diaphgrahm surgery to try and get off the ventilator, please also keep her in your prayers.

Cardiology Update and Thoughts

2010-03-09T09:22:00.000-08:00

Yesteryday, Monday, March 8th was Alexa's first cardiology appointment since her surgery. She was pretty nervous about seeing people in scrubs again but my holding her helped releive some of her anxiety. Dr. P was pretty sad she kept giving him dirty looks and asked when she would begin to love him, I said at least till her visible scars and bruises wore off.

Doc said she looks great, saw the echo notes and said she had a great repair! We talked a bit about the pacemaker, how we would go about monitoring it. They said I would be getting some equipment from Medtronics the maker of her pacer. He checked it and it is also working great, battery life estimated at 3 years although he thinks it should last longer.

I felt pretty reserved at this visit. I am normally much more smiley and outgoing but I just feel like I'm waiting for the other shoe to drop. I know I should not feel this way. I am so happy, grateful and relieved surgery went well and it is over and we're home but I just can't relax yet. I want to breathe easy again, I want to forget and just enjoy our lives again but it's hard to let go. I know it has not even been a week yet since we've been home so I'm sure it will take more time. I just barely got my mojo back to clean my house again yesterday as I was completely exhausted the first few days we got home and all I wanted to do was nap, although I didn't. Sleep was still all I thought of while awake.

I was also so very happy to go back to my meeting on Sunday (church). I could relate to words written in Psalms 73:28 ~ "But as for me, the drawing near to God is good for me. In the Sovereign Lord Jehovah I placed my refuge, To declare all of your works." I just felt like I really needed to be close to God again be spiritually nourished so being back made my heart rejoice. We also got a really warm welcome from all the friends. Per doctors orders, I will not be taking Alexa out yet until a few more weeks, giving her sometime to recover and build her immune system back up. But looking forward to the day we can all go out together as a family with no ... err few worries.

Alexa is doing so good, her scar is healing nicely. I can see how normal she looks to be people who just observe from afar. Just like any other little precious toddler, walking, playing and talking up a storm but if you lift her shirt you can see the truth behind the veil, you can see the battle she faced for her life - there is no denying it. It is real and she is my hero.

Our warrior princess ~ still smiling!

Home Sweet Home

2010-03-04T15:09:00.000-08:00

Just wanted to let everyone know that we are HOME!

We got home last night! It felt wonderful to walk out of those hospital doors with our baby. So glad to be off the roller coaster ride and on the other side of the 'great big canyon' we faced, as our cardiologist described it.

So happy to be together again. To see our kids. So happy to sleep in our bed. So happy to sleep uninterrupted. Alexa is doing very well, just needs some pain control every now and then.

Will update more later, just wanted to share the great news and thank you from the bottom of our hearts for your support.

Maybe Home ~ Update 10

2010-03-03T10:30:00.000-08:00

We are sitting in Alexa's room waiting to find out if she will be allowed to go home today. They were a little concerned she seemed to desat a bit while asleep but I think it was a combination of a bad connection, her pulse ox pressing on my leg, being covered by a blanket and her having some phlem she did not cough out. Other than that she seems to be doing well and in good spirits. As I wrote this the nurses came in to remove her central line and her IV. So she is not longer connected to anything yucky, just the sticker leads on her back and the pulse ox. Her surgeon, Dr. T came to take a peek at her early this morning and told her to get ready. Everyone is pretty sure we will be going home but there is no official okay or discharge orders so we are in limbo. Dr. T had another surgery today so we must wait till he is out for more info. For now we will let Alexa keep playing and walking around. We have one foot out the door, packed some stuff up yesterday night but I was still nervous about the PICU monster making a comeback to our room. My hubby said he is gone now, so I hope so. Sleeping at home tonight would be just a marvelous dream come true.

Thanksgiving ~ Update 9

2010-03-02T00:59:00.000-08:00

I am laying next to my peaceful sleeping Alexa. The time 1:30 a.m. This means she is 18 months today! Her heart rate is 110, oxygen saturation 100%! I can hear the shuffle of the nurses outside our door. The bubbling water in the humidifer for her nasal canula. The room is dark, only lit by the color of the monitors tracking her vitals. I am missing my other children. Missing our home. But yet, I am just so very thankful, so very humbled, so very over joyed and reflectful. I cannot find words adequate to describe my appreciation to God for helping us through these trials. It is amazing to me that my baby has endured now 3 heart surgeries in her short life. It is amazing to me that she is doing so great! I just feel complete love in my heart for God, for caring for her, us, and the many caring doctors, nurses, family and friends he has surrounded us by. I've seen lot's of suffering in the hospital. Seen many families come and go. Seen many happy endings and some sad. I have cried for strangers babies and wondered how many tears both of sadness and joy have been shed within these walls. All I know for sure is that God love and cares for all of us, we are his creation, his little children. And I have faith that soon he will bring justice and make things right for all. And so in honor of God, Jehovah God, I share the words below:

Isaiah 59:1 - "Look! The hand of Jehovah has not become too short that it cannot save
nor his ear become to heavy that he cannot hear".

Isaiah 41:9 - "Do not be afraid, for I am with you.
Do not gaze about for I am your God. I will fortify you. I will really help you.
I will really keep fast hold of you with my right hand of righteousness."

I believe.

Walking and Surgery Again! ~ Update 8

2010-02-28T21:47:00.000-08:00

Alexa, is doing so well it is unbelievable to me. The only pain meds she is on is Tylenol and Ibuprofen. She's also taking Lasix and Aspirin, all orally now. She got up to walk yesterday. I was pretty nervous about it. I thought standing up was enough but her nurse said she could do it and the surgeon wanted it. She said we'll just have her walk to the doors and I said, 'of the room right?' And she said 'no, out to the PICU entrance'. I couldn't believe it but she did it and seemed like she actually liked it.  Today she was up and out again and playing. She did not want to come back in the room. Nurse said, if you have to fight a patient to come back to their PICU room it's probably a sign they don't need to be here anymore.  That is very true and we should/would be going home in in day or two if it were not for the Complete Heart Block.

BUT instead of heading home, Alexa will be back in surgery tomorrow to install a pacemaker. Unfortunately, her heart electrical conduction was damaged during surgery. This is one of the risks of the Rastelli since it involves working in an area very close to this system plus it is invisible so doctors know it's there and try to avoid it but it cannot be seen.

Complete heart block (complete AV block) means that the heart's electrical signal doesn't pass from the upper to the lower chambers. An independent pacemaker is needed to shock the ventricle into contracting and pumping blood.   Gabe and I are pretty sad about it all but learning to accept it. She could be better and she could be worse, but we cannot change what is for us.

On a good note, she had her first echo today and doctor said the repair was great.  So, we are very thankful for that. Alexa has been playing today.  Lots of family and friends came to visit these last few days. Thank you for all of your love and support, it really means soooooooo much in these stressfull times.

Okay, I am so sleepy and tired. Alexa, still needs to get a dressing change on the central line in her neck. That will also be stressfull, so tired, so tired, and tomorrow is another day full of anxiety. We are sad for this big set back, but docs tell us it won't take us back too far. Just makes me sad to see my princess come this far along to know she will be headed back into the OR. Please again, keep her in your prayers that everything goes well tomorrow.   I leave you with a few pics of the last couple days.

First day she sat up with me out of bed.

Sitting up by herself.

Watching favorite Annie movie

Visiting with Morgan the nice doggy

Walking down the hall!

Having some fun!

Popsicle prize after long walk.

Just happy to be out walking again.

One with the family....

Progress ~ Update 7

2010-02-25T22:17:00.000-08:00

I've been trying to write this update for a while and so many things have interrupted me from finishing it including of course just caring for Alexa and my need for some sleep.

Although Alexa is still feeling pretty crummy, good progress has been made. Alexa lost her catheter last night and her chest tubes today! She is also only on one IV heart med plus some intermitent Lasix.  She is on a liter of oxygen via nasul canula, mostly as an extra support since she is being given some sedative and pain meds as needed.  Docs are amazed at how well she has progrssed and honestly so are we.

Last night was also better.  Alexa was able to rest for longer intervals.  She is no longer holding her breath but she did have periods were she became agitated, moaning/groaning then her sats dipped and she had some trouble breathing. When we noticed this was happening we would sit her up and give her those chest pats and that would help her move/clear some of the fluid that was accumalating in her chest/airway. Of course coughing hurts a lot right now, which is why she chooses not to. But even when tiny little coughs come out she does better afterwards. After these short episodes she would again go back to sleep, so that meant I also finally got at least an hour straigh of sleep and it was wonderful! Mostly before I was surviving on 5 mintues of dozing off here and there. As of 9:30 pm tonight she has been sleeping very comfortably and peaceful. I think this is the longest period with uniterrupted sleep she has had since surgery, almost 11:30 p.m. so it's going on two hours. Sleep is essential for healing so I hope she continues through a mostly peaceful and restfull night.

We also were having major trouble with the monitors false alarm beeping almost all day long, because it was having trouble communicating with her external pacemaker. Finally at about 4 p.m. they brought in a 5 lead cable and that seemed to do the trick.  We were finally able to get some QUIET sleep, I think for a little over an hour. And that was so wonderful for all of us! Dr. T also wanted to get Alexa out of bed, so I got to carry her on a chair.  They want to do this to get the fluid moving. After the x-ray yesterday, they said she DOES NOT have pleural effusions which is great. She does still have some wetness in her chest and sounds junky a lot. But this is better than the pleural effusions which basically means fluid accumulating around the lungs mostly underneath. Todays xray looked better than yesterday's but still "not too hot" as one doctor put it they will be doing another at about 4 a.m. - for those not familiar with the PICU world, it is a rule they must come to bother I mean check on you at least every 2 hours, so any normal sleep for the parent or the patient is thrown out the window.

The big deal is that she is STILL in COMPLETE HEART BLOCK. I am very sad over this and worried. I do not want her to head in for another surgery when she is just healing from this one. The surgeon told us he will not be worried about it until the weekend. Still hoping it returns after some swelling goes down. I REALLY REALLY REALLY hope so. Alexa is just so agiated at this poing and cry's whenever anyone tries to come near. She only lets me (most of the time) just hug her but I've been the bad guy on occasion, so she has even pushed me away. It is so very sad.

She took couple little sips of water today and a couple bites of a cookie. Other than that she is not interested in anything to eat yet. Nothing makes her smile. Hoping tomorrow she will feel better. She did clap once today at getting some water and said our Dogs name so that was a tiny glimpse of her today wanting to shine through, mostly it was gray though with her feeling down.

The surgeon told us he was able to use a 16mm contegra valved conduit. I was expecting for him to be able to use a larger size but he said this one fit and lay best under her breast bone. He said hopefully she will get 4-7 years out of it before needing a replacement. At that moment my heart got sad yet again. Thinking of seeing her through another surgery. Knowing this is not her last. It is so heartbreaking. Since I was already pretty much running on fumes the thought of future surgeries was enough to almost want to make me want to shrivel up. But I have to keep my chin up. My hubby asked me today how I was feeling about the pacemaker because he was not sure how to feel. I told him that yes it was hard, and although I want to feel pitty for us at times and hate that our daughter is going through this, I think and I have learned that it is best to count your blessings. Be grateful for what we do have and that although so very hard her condition is treatable. There is hope. I have hope for today, tomorrow and her future. Hope and faith knowing that no matter what life throws at us, we will get through it with by the strength of God and the wonderful love and support of family and friends.  We have shed many tears since our journey began, but it is comforting to know that every one of our tear drops is precious to God and does not go unnoticed.  Thank you for your continued prayers on our behalf. It feels great knowing so many people all over the world are praying for our baby. Thank you again so much!

XOXO

Heart Block & Maybe Fluid ~ Update 6

2010-02-24T13:49:00.000-08:00

Alexa has been doing for the most part very well. All the docs are very pleased with her progress. She was able to get extubated last night at about 4:45 a.m. It was rough but she did feel obviously relieved to have he tube gone. She has been feeling still quite a bit of pain today, being very restless. I notice she is not able to catch her breath and she panicks as do I. Kind of stays stuck in a breath. They think it is due to the chest tube pain. They are thinking she also might have some pleural effusions, fluid around the lungs. They are going to be doing a chest x-ray shortly. Another worry we have is that she is in complete heart block. This means her heart us unable to beat on it's own. There is a signal starting in her atrium but not registering within her ventricle at all. She is being paced with an external pacemaker now but they are hoping that it is just the inflamation affecting her and within a few days her electrical function will return. If not, Alexa will need another operation to implant a pacemaker. All very stressful. Please continue to keep her in your prayers. She does not feel well today at all. No smiles from my baby yet. Please pray that her normal heart rythim making ability returns soon. And for no fluid.

A Thousand Words ~ Update 5

2010-02-24T01:50:00.000-08:00

We were so happy and relieved to finally be reunited with our precious daughter. So glad to have the actual surgery behind us. Now comes the recovery phase of this complex 8 hour surgery. It was a long hard day for all involved but of course especially for Alexa. She has endured so much and has been a true warrior through it all! We are so proud of her! And also eternally grateful to our God Jehovah for sustaining her and us through it.

In case you have no idea what CHD looks like, what CHD does to a baby, I am posting the ugly truth ~

a picture

because as they say,

a picture is worth a thousand words.

and although it is so very very very hard to have to see your baby through something like this,

I can still see the beauty of her being, CHD is not Alexa, it is only a part of her.

To us, beneath all the wires and tubes, she is still just our baby. Our innocent and beautiful princess.

Now, on why I am still awake at this late hour ~ well, although Lexi is currently asleep, she has been trying to wake and even sit up every now and then. She gets pretty agitated when she wakes up and realizes she has a tube down her throat and of course wants to pull it out. So hubby and I are taking turns staying up by her bedside. She has an awesome nurse, Larry, who has been taking great care of her. Docs are thinking of pulling out the breathing tube soon, as soon as they know she will be fully awake. She is receiving very little help from the machine and is acutally breathing over it and her blood gases are good so they are confident she is ready. Hopefully it will be soon, although I am glad she is resting and if she keeps sleeping till morning then they will just let her rest. So we shall see. Also just wanted to say thanks to my family that was able to come down and spend this loooong day with us, it definately helped to have you here. And to those that were not able to be here, we understand and could still feel your support. Please keep praying for a smooth and speedy recovery for Alexa. Thanks and good night (morning).

Out of Surgery!!! ~ Update 4

2010-02-23T17:44:00.000-08:00

I just got to see my baby for a few moments as they wheeled her by to the PICU and she looked BEAUTIFUL! She did great we hear and her lips were so pink! I can honestly say I felt like she was born again. Those same feelings I felt the first time I saw her after she was born I felt again. I was in love! And ever so grateful to see her again!

We are waiting as they prepare her in her room to go be with her and also still need to meet with the surgeon to see how things went from his perspective. Will update later! Thank you for all your prayers! Please keep them coming through these next critical hours after surgery. Hugs and kisses to all. We felt your love and prayers on our behalf.

Sewing Conduit ~ Update 3

2010-02-23T14:34:00.000-08:00

Still on bypass. Surgeon sewing in conduit.

On Bypass ~ Update 2

2010-02-23T12:57:00.000-08:00

Went on bypass at 11:59 a.m.

Surgery Begins ~ Update 1

2010-02-23T10:49:00.000-08:00

Alexa was taken back into the OR at 8:55 a.m. Her surgery was delayed due to a late night emergency.
So we got to enjoy a few extra hours of sleep but unfortunatley her surgeon and anasthesia doc did not. I'm hoping they are use to these events and are still able to perform excellent. They assured me they were ready.

Alexa graced us with her usual beautiful smile and cheerful disposition this morning. Sadly it soon would vanish from her face as she became suspect of the hospital surroundings. The anasthesiologist explained he would be brining a sleepy/feel good medicine they wanted me to give her and that as soon as she began getting loopy (about 5-10 minutes) they would take her back and getting her ready. After I gave her the medicine I began to tear up becasue I knew the baby I know and love would be falling asleep and heading into a fight for her life. I didn't want to giver her up, I wanted to keep holding her forever and then just like that she was gone and my hubby and I broke down together. And now we wait. She was so cute though because she kept smiling and laughing at us as she got drowsy, she made us laugh and smile through our tears.

We received an update that the surgeon began surgery (the incision) at 11 a.m. and she is well. Please keep the prayers coming! Thank you so much! Each and every one is so appreciated. Makes us feel good so many are praying for her/us.

PreOp Testing

2010-02-22T06:32:00.000-08:00

Today we take Alexa for preop testing and to meet with anasthesia. Tomorrow is the big day.

I ask of all you reading this is for your precious prayers on Alexa's behalf, her surgeon and medical team and our whole family in general. We appreciate every single prayer!

I will update as possible.

The journey begins, again ...

The Rastelli Surgery

2010-02-21T22:30:00.000-08:00

Here is some more info on the surgery Alexa will be receiving. Plus some other things that need to be corrected like her muscular vsd's found during the cath and clamping of one collateral vein/artery not sure which it is. Surgery will be around 7-8 hours long.

Pathophysiology

The Rastelli operation was initially utilized for the repair of d-transposition of the great vessels with ventricular septal defect and pulmonary stenosis. It has subsequently been utilized for a variety of congenital heart defects characterized by two ventricles and overriding of the aorta with severe pulmonary stenosis or pulmonary atresia. Pulmonary atresia with ventricular septal defect, and double outlet right ventricle with pulmonary stenosis or atresia are anatomic subtypes also frequently submitted for the Rastelli procedure. Cyanosis is the prevailing preoperative pathophysiology.

Surgical Technique

The Rastelli repair requires cardiopulmonary bypass and aortic cross-clamping. The ventricular septal defect is visualized through a right ventriculotomy. Obstructive right ventricular muscle is excised, and a large intra-ventricular baffle is sutured into place closing the ventricular septal defect and redirecting left ventricular outflow to the more anteriorly placed aortic valve. A valved homograft conduit is utilized to achieve right ventricular to pulmonary artery continuity. Transesophageal echocardiography is utilized to help assess adequacy of repair. Cardiopulmonary bypass time and aortic cross-clamp time required to complete repair is usually moderate to long.

Postoperative Considerations

The Rastelli operation, despite its many advantages, is an extensive operation and sometimes results in early hemodynamic instability. Invasive monitors utilized following repair include arterial, central venous and left atrial catheters. An oximetric catheter is utilized for monitoring cardiac output. Vasoactive infusions required for hemodynamic management might include dopamine or dobutamine, epinephrine, nitroprusside, phenoxybenzamine, and milrinone. Satisfactory postoperative hemodynamics are dependent upon free, unobstructed egress of blood from both the left ventricle and the right ventricle. Obstruction to either outflow tract will contribute to ventricular failure. Arrhythmia is a potential postoperative complication. Temporary atrioventricular pacing capability must be readily available. Bleeding is occasionally encountered following the Rastelli procedure. Intracardiac pressures should be normal postoperatively. Arterial oxygen saturation should be normal. Uncomplicated recovery from the Rastelli operation should result in a hospital stay of one to two weeks.

Appreciating Rainbows

2010-02-20T22:58:00.000-08:00

My goal today was a to take an outside family portrait. I had great plans. But alas, our normally sunny and warm weather decided to be cold and rainy instead. It seems that anytime I decide I would like outside pictures the weather dictates otherwise. Seriously, it has become an ugly pattern I have become, I hate to admit, a bit bitter over. And I think it began on my wedding day, when my lovely garden wedding had to be rushed inside due to a freak monsoon storm that developed just moments before our ceremony. So today, I sulked and groaned at the falling rain, which I normally welcome by the way. Just not today. We all watched the skies attentively. I prayed it would go away at least just for a moment. My plans got thrown out the window, now all I wanted was at least one simple picture outside. The time was ticking, the sun would set at 6 p.m. and then it would be too dark. The sun began creeping through some clouds and it appeared at first glance that the rain had subsided. But it was mocking me. A light but contast and odd drizzle continued through the mixed sunshine for what seemed a very long time. As I was beginning to lose hope it finally stopped. And we ran outside and captured this and a few other precious outtakes.

And I was EVER so grateful!

But then

GASP!!!

A full beautiful rainbow right in front of us!

And if you look clearly not only one but two!!

After this, I came inside and cried a little.

When I saw the rainbow, I felt as though God was telling me everything was going to be okay.

I sighed and smiled.

“The way I see it, if you want the rainbow, you gotta put up with the rain.” Dolly Parton

“And when it rains on your parade, look up rather than down. Without the rain, there would be no rainbow." G.K. Chesterton

“Be thou the rainbow in the storms of life. The evening beam that smiles the clouds away, and tints tomorrow with prophetic ray.” Lord Byron

And as I write this, I sit enjoying the sound of the falling rain.

Now, I must go clean my toilet bowl because as my son put it, "Alexa juiced up my toilet!" Meaning she decided to pour her orange juice in and around our toilet and mix it with her hand. Needless to say, she got a good washing but now the toilet awaits me. Funny how juiced up toilets are just one of those things in life I never knew I always wanted.

One Thing

2010-02-16T00:27:00.000-08:00

Just one more week and it hurt's like crazy ...

What CHD Means to Me Now

2010-02-13T02:15:00.000-08:00

CHD you meant nothing to me.

I did not know you.

I had vaguely heard of your effects but never knew you had a name.

Honestly, I would have rather never met you … ever.

But you had other plans.

You abruptly came into our lives. No one invited you.

You were not needed nor welcomed. But you came.

You hurt my baby. You broke her heart.

I don’t like you. I am tired of you.

You have caused much destruction.

You have taken too many lives.

You have shattered too many dreams.

You have caused much bloodshed.

You have created a never ending river of tears.

You have broken many literal and figurative hearts and continue to do so.

When you break one child’s heart you break the whole families.

You know that and you like it. It is your thing.

You should be ashamed of yourself.

But your time is coming. You will not succeed in this endeavor forever.

I know that for a fact. Can you feel it?

Things are changing. Your victims are uniting!

They are rising up and will be silent no more!

We will make a difference. We will take a stand!

For all the warriors, those lost in the battle and those still fighting, we will keep fighting you!

Our children, our families, our friends, our neighbors, our medicine, technology and finally our God will conquer you!

Can you hear it? Everyone is talking.

You have ignited a raging fire that can no longer be contained.

Enough is enough!

With every beat of our heart’s we will make known the monster that you are.

You may have broken our hearts but not our spirit.

You may have taken us down, once, twice or many a time, but never out.

You affect unborn children. Why do you disrupt them in the womb? Do you not know that is a sacred place?

You affect newborns. Why must you take them away from their mother’s aching arms and swollen breast?

You affect babies. Why must you take them away from the security and comfort of their home?

You affect toddlers. Why must you interrupt their development and personality and joy to explore and learn?

You affect children. Why must you place fear in their hearts as they learn to face you?

You affect teenagers. Why must you leave so many scars? Do you not know these years are difficult and nobody likes to feel different?

You affect young adults. Why must you meddle in their future plans?

You affect parents. Why must you bring such agony and constant worry?

You use to mean nothing to me. Yet now I think of you often.

I don’t like to but I can’t help it.

I can think of you anywhere at any time for any reason.

I can look at my baby and think of you.

You are there, lurking in her mended little heart that needs fixing again.

You are there when I see her oxygen saturation levels hit 67.

You are there when I worry about the physical and emotional toll you will take on her.

You are there as I prepare for her next surgery.

You are there when I lie next to her at night and wish you were not in our lives.

You are there when my older children tell me they wish their baby sister did not have to go the hospital.

You are there when my husband cannot change jobs because we need the health insurance.

You are there when my mom calls everyday wanting to know how the little princess is doing?

You are there when my friends ask me about my baby and her next surgery?

You are there when I close my eyes and I want to be sure I can see my daughter outlive me.

You are there when you make everyone of her smiles, giggles, new words, kisses and hugs more meaningful.

You are there when I read about new families joining this journey.

You are there when I hear about babies passing away.

You are there when parents are worried sick at the hospital keeping vigil on their little ones.

You are there with every doctor visit.

You are there when I see the oxygen tanks sitting around my house.

You are there when every night I must give my baby half a tablet of baby aspirin.

You are there when we want to go the zoo but we must avoid public places.

You are there when I want to go to the store but I decide against it for fear of my baby getting sick.

You are there when I must face a medical procedure as simple as a blood draw but I have the courage to take it because my baby has endured that many times over plus the unthinkable.

You are there when I walk around the grocery and see a box labeled 'heart healthy' and think 'if it were only that easy.'

You are there when I hear or see future dates and wonder what our life will be like.

You are there when I feel my heart start pounding faster with worry and anticipation.

You are in my prayers to God as I pray for us and others.

And you are here now as write these words.

I did not know you CHD and you meant nothing.

With time I have come to know your ways and find you worthless.

I admit however, that your presence is undeniably powerful.

When you barged into my life you expeditiously made all the blessings in my life more valuable

and that CHD, means everything to me!

I wrote this at 2 a.m. hope it makes sense when I wake up and read it later but it does come from my heart.

CHD ~ The Most Common Birth Defect

2010-02-12T07:53:00.000-08:00

The Most Common Birth Defect: Have You Been Tested for It?

It's Congenital Heart Defect Awareness Week and I found the following article online at CafeMom that I wanted to share here. I think the more info that is out there on the subject the more lives that can be saved. I am thankful that Alexa's CHD was found while I was pregnant. It did help us prepare like the article mentions, with what to expect, good doctors and hospital. We also had no history of heart disease in our family so this took us by surprise as it does most CHD families. Okay, so below is the article.

"Congenital heart defect is the number-one birth defect and the leading cause of newborn deaths. Yet three out of five women who have given birth to a baby with such a defect were never tested for it during their pregnancy.

"Congenital heart defects kill more children than childhood cancer, and yet, pregnant women are not routinely tested—and newborns are not routinely screened—for this defect," says Lenore Cameron, the president and executive director of Little Hearts, an organization that provides education and resources to families affected by congenital heart defects. "Early detection is absolutely critical to successful treatment—and, in countless cases, it saves lives."

The benefits of knowing in advance? According to a Little Hearts survey of women who knew in advance that their child would have a heart defect:

1. You'll be able to choose a hospital that's better equipped to deal with a newborn with a heart defect or arrange to have a pediatric cardiologist on hand for the birth of your child.

2. You can prepare yourself mentally and emotionally for the arrival of a seriously ill baby.

3. You can do your research while you're still pregnant so you'll be better informed about how to care for your child.

More than 80 percent of the survey's respondents said that there was no history of the birth defect in their families.

According to the March of Dimes, most congenital heart defects cannot be prevented, but there are some steps you can take before and during your pregnancy that may help reduce the risk of having a baby with a heart defect: Take a multivitamin with folic acid; discuss all medicines (even herbal ones) with your health care provider; avoid sick people and germs; and avoid toxic cleaning products.

Have you had a test for congenital heart defects? Are you going to?"

Heart Anatomy Video

2010-02-10T08:37:00.000-08:00

In honor of Congenital Heart Defect Awareness Week, I am sharing a must see, seriously fantastic, short and easy to understand video I recently came across explaining heart anatomy and circulation!

It is beneficial for everyone that has heart, love's their heart and/or love's someone with a broken heart.

The heart is amazing!

Did you know that your heart beats about 100,000 times per day, pumping 2,000 gallons of blood through 60,000 miles of a network of blood vessels in your body!!! It is incredible that such an organ exists and functions and mind boggling that each one of us living on the face of the earth has one!

I have been in the CHD world for going on two years now and it is the best explanation on the heart I have seen. As new parents thrown into the world of CHD you try to understand all the lingo, the anatomy of the heart and how all the parts work together. This video is great for that! It helps to put all the pieces together in your mind. And even if you are not dealing with CHD you have a heart so it still pertains to you. Click on link below to see:

Heart Anatomy Video

With your new heart knowledge, if you watched this video and are wondering what Alexa will have repaired in surgery it is the following: Receiving a new valved pulmonary artery that connects from her right ventricle to the top branches of her pulmonary arteries. The large hole between her ventricles will be patched and led up from her left ventricle to her her aortic artery. She also has a tiny collateral vein that will need to be closed off, her BT Shunt removed, and the additionla muscular vsd's patched.

Hope you enjoy(ed) it and it is helpful to some.

Surgery Date Set

2010-02-04T09:54:00.000-08:00

You ever have that feeling when you just can't get something off your mind?

Well that's us right now!

We received the call from Alexa's surgeon yesterday, he spoke with the cath doc and he is available Tuesday the 23rd so although the surgeon was able to do surgery on the 19th he would rather have the heart cath doc there in case he needs his assistance to close the muscular VSD's. He says he does not expect it but would rather him be there just in case.

So we have an official date now, Tuesday, February 23rd probably starting at 7:30 a.m. That is officially 19 days away. We will have to report to the hospital on the 22nd for pre-op testing and to speak with the anesthisiologist. So that really only gives us 18 days to prepare. Doc said to plan about a 10 day hospital stay. He also stressed the importance of keeping Alexa healhty these next couple of weeks including staying away from crowds and germs as best as possible.

So there are many things I need to prepare. We will also be having family portrait taken on February 9th so I'm excited about that and need to prepare for that as well. I am happy I have been able to enjoy the visit of our cirquit overseer to our congregation. I was worried for a while that we would be in the hospital with Alexa this week, so it's been nice to meet him and his wife. Looking forward to rest of the week to be spiritually upbuilt.

Lot's of people ask me how I'm feeling and honestly I feel pretty good. I have been pretty peaceful and calm. I do have my moments when sudden fear sets in and I may cry for like 10 seconds but then I pray and get over it pretty quick becasue I realize this is for her good and we have no choice. Mostly I'm dreading that moment when I have to hand her over but I try not to let my mind wonder in the details of the surgery, although sometimes I do, but I prefer to look past that to when she is pink, fully oxygenated and feeling vibrant! As Dr. T. said during his visit "after her surgery she will begin to blossom with the Spring flowers."

"Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness."

Isaiah 41:8

Looking forward to seeing our beautiful flower bloom!

And having our hearts rejoice!

Love Your Love Notes

2010-01-27T00:14:00.000-08:00

From the bottom of my heart, I want to thank all you that have taken the time to not only read some of my posts but to reply to them. Your comments and kind words of encouragement, support and prayers mean so very much! I love reading your comments! I also appreciate your emails, phone calls, texts, visits and just everything you do to show you care.

It feels good to have our feelings acknowledged, know that someone is listening, thinking of us, cares for us and/or is praying on our behalf. And I think this is especially true when we are facing real hardships in our lives. And that is why your comments mean so much. Makes me feel good knowing someone out there cares about what happens to my baby.

I know I have some friends and family that come one here and read faithfully but have never commented and some have mentioend they are not sure how to do so. Therefore, below I posted a simple little instruction list on how to leave a comment or love note as I prefer to call them.

How to leave a comment:

At the end of my written post you will see a little link called Love Notes.

1. Click on 'Love Notes'

2. Write your message in the box

3. Select a profile. There is a box under the comment box for that. If you don't have a profile, select Anonymous but include your name in the message box so I know it's you. =)

4. Publish your comment.

5. It will then ask you to put in a code that will appear on your screen.

6. Your message will then appear on the screen. And that's it!

If there are already messages from others simply scroll down to the end of those comments and you can begin to type in the message box provided to post a comment {love note}.

Thank you again for your loving support of Alexa, it truly warms our hearts!

And thanks to my friend JM for allowing me to copy this idea from her blog for a comment tutorial of sorts! =)

Meeting with Surgeon & Surgery Date

2010-01-24T00:49:00.000-08:00

On Friday, {Jan. 22nd} we met with Alexa's surgeon. He is truly a wonderful man, full of smiles and compassion. Truly just seeing his friendly expression soothes some of my fears away. I was nervous the whole time waiting for him to call us back and kept feeling like I had to go pee.

I hugged him a lot, maybe too many times, but I couldn't help it. Feelings of love and appreciation just emanate from my heart for him and it's hard to control myself. I am endebted to him for the great job he did with Alexa's first surgery and allowing us to get to know our sweet baby and allowing her to form a part of our family and now again he will hold her life in his hands even though it just feels unreal at times. I feel like I can and should just hug him forever. But of course there was lots of to discuss so I had to let him go.

We talked about how well Alexa had been doing and about the cath findings. He explained that the extra muscular VSD's found present a little more of a problem but that he has a few ways he can go about finding and fixing them. For that he needs the cath doc to be in surgery with him though to help him with fluoroscopy if he cannot do the fix on his own the way he hopes. He also mentioned the importance of patching the main VSD in the left ventricle to the Aorta very carefully and with lots of smooth room so as to have no obstruction. I have read about LVOTO (left ventricular outflow track obstruction) and have read it is not good. The left ventricle is a very strong pump as it pumps blood out to the body, the way they patch the VSD almost creates something like a hallway before it gets to the door meaning the Aorta out to the body. This hallway if to narrow can create some obstruction to the blood flow which can lead to problems with the left ventricle, which equals bad news. I am very happy that he is aware of the importance of getting a big enough space there. He also talked about the conduit and what he might use, meaning a cadaver artery/vein with a valve or a contegra conduit, it all depends on what is available that day. He mentioned he would like to get in a 16-17 mm size conduit that he would hope it would last 5-10 years. I hope 10+. We talked about bypass, about hours in surgery mentioned hopefully getting in to the OR by 7 a.m. and being done close to 2:30 p.m. He said the risk of surgery has gone down slightly since she is older and stronger. Mentioned now a 95% success rate. But let me tell you that that 5% is enough to make your blood turn cold. I can honestly say though that we love him and that we trust him. We trust he will do his complete best and he knows what he needs to be aware of and take care of, which is everything. He mentioned Alexa also has one tiny collateral vein that he wants to clamp down and get rid of, and of course he will have to close off her BT Shunt. He said recovery time is about 7-10 days about. It is a big operation and completely rearranging the way her heart works and pumps blood, it will take some time for her heart to get use to the new flow.

As far as dates he mentioned Thursday Feb. 18th or more possibly Tuesday, February 23rd. He said he just needs to make sure about the anesthesiologist and that the cath doc agrees to travel down for the surgery. He mentioned he is going to be in and out of town for the next couple of weeks and doesn't want to do her surgery in between. He wants to do her surgery and be able to focus completely on her after care. Which is also what we want and another big reason why we like him. He likes to be very involved in follow-up care and we know he has a great intuition for things. So it reassures us knowing he will be there every step of the way. We also found out the hospital is a Magnet Status hospital and received an award as one the top ten hospitals in the nation, so this along with positive feedback from other parents make us more comfortable about the hospital in general. We are going to wait to hear back from him with a definite date but he pretty much told us to plan for Tuesday, February 23, which is as of right now is officially less than a month away.

My feelings are all wacked right now. Before starting this post, I had just finished myself a good cry and I even made my hubby cry with me.

love

Alexa

SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

much

that

any

possibility

losing

her

very

devastating!

Of course we try to focus on the positive but honestly it feels like I must face death in the face and go past it and hand my baby over to a doctor that will cut her open and try to make things better for sometime, hopefully for a long time.

But really I want God to make her better for good and forever.

But for now, this must do, and I hope and pray, and I cry and I wish, and pout, and I scream, and a sigh, and I hurt, and supplicate, and implore, and drop to my knees, and I bring my hands together, and bow my head, and bury it into my pillow, and sob, and I lose my breath, and stay quiet, and stay still ...

and then I feel God's hand and comfort and peace. He will lead us through.

"When my disquieting thoughts became many inside of me, Your own consolations began to fondle my soul." ~ Psalm 94:19

Good night. Going with my baby.

Another Night in the Hospital

2010-01-20T01:26:00.000-08:00

So we just got back from another tiring night in the hospital. It all started Monday when I checked Alexa's O2 Sats and they were pretty low for being on oxygen. They wouldn't rise even though I kept upping the O2 so I started getting really nervous. I called the cards earlier in the day and waited then when this happened called again. They called back and that is when they suggested taking in her to the hospital to be checked out. They let the ER know we were coming. I was crying because I had not even yet unpacked my cath bag and we were already going back. Thoughts of having to rush her into emergency surgery kept flying through my head. I knew it was coming but I wasn't ready, literally I wasn't ready in any way. So we called my mom to come be with our kiddies and off we went.

When we got the hospital, they were already waiting for us so they took her right back. They hooked her up to the hospital O2 and watched. She seemed to be hanging in the low 70's on their monitors. At home she was in the mid 60's. She would sometimes dip into the 60's with them too. She was pretty calm at first until they decided they should place an IV line just in case since they had to draw some blood for checking. They had to poke her twice because they couldn't get the vein. She cried so much and kept yelling ‘mama mama!’ it was pretty heart breaking. After that they did an x-ray on her chest, which of course she didn't like being forcibly held down for. Daddy helped with that duty because I didn't want to be the bad guy again.

After we returned to the ER we learned we had a room ready and that we would be admitted for observation over night. We were in the general/cardiac pediatric ward not the PICU this time on the 4th floor. We had never stayed anywhere else in the hospital beside the NICU and the PICU so this was new for us. Cardiologist mentioned that the cath lab doc had already been in contact with her surgeon and talk of even doing the surgery here locally was mentioned. They said that depending on how she did and info they gathered would determine our course of action. So we started to get settled into our new room. Alexa was hyper and happy. She kept dancing on the bed and wanting to jump up and down. She had all the nurses melting in love for her. After a few hours she finally settled down and fell asleep shortly before midnight if you could believe!

Right about the time, just I was starting to finally get comfortable and an attending peds physician and resident walk in to check Alexa out. They mention how big and cute she looks. Good size for surviving on a BT Shunt this long. They ask me what O2 they have her on and I say 1/2 liter, she follows the long cord to the pump and says something completely shocking to me "It's not on!" I said “What?!” completely in shock. “They said it was on, they hooked her up to it when we got here” I added. And she says, “Well maybe they just weaned her off slowly.” And I said, “'No I have not seen them mess with it at all since we got here." At that point the nurse walks in and the doctor asks "Is this baby on any O's" And the nurse says "Yes, 1/2 a liter and of course she is also shocked to find out she had not been on an O2 since we got there from the ER which by this point was at least 4 hours ago. In the ER I knew and could clearly see the O2 pump was on. Here is was on the other side of the bed in the back so once I saw them hook her I assumed they turned it on like they said. So at that point they said,”Well let's not mess with it if she has been doing fine.” So they left her on room air and again watched. She was okay meaning mostly in the 70's occasionally dipping into high 60's when she moved around a lot. So needless to say I was flabbergasted but in a good way, mostly. I was happy to see her be on room air with decent sats and wondering how this could have happened. But like I said, mostly it was good news that I could fall asleep to. After Alexa fell asleep her sats climbed into the mid 70's and pretty much stayed there all night. I was very relieved to say the least.

In the morning, she had to get a quick echo to make sure her BT Shunt was still okay. This was another source of frustration and tears for her but thankfully they were done soon. The same tech that did this echo did the full one on her on Friday and she said she saw no changes and that her shunt although narrow was wide open. So we headed back to our room to wait for cardiology to make their decision. I pretty much knew we would be going home but wondered what other news they had about the surgery.

About an hour or so later her cardiologist showed up and mentioned Alexa was doing good and that pretty much it was just time, time to move forward with surgery within the next couple of weeks. He explained that the extra little VSD's they found in the cath added a new level of complexity to the surgery. As if it was already not complicated enough, he mentioned that the VSD's are mostly in the muscular part of the heart and that during surgery they are very hard almost impossible to see because the heart if flat and not extended with blood. He mentioned that trying to find the hole's within the muscle fibers was like trying to know which to slabs of concrete in Haiti that were stuck together were a) meant to be that way b) like that because of the earthquake and really if you lifted one slab it would lead you down a path to other side. I love that he uses illustrations as this makes things clear in my mind. He said that fixing those holes during surgery was of upmost importance because if not Alexa would be very sick after surgery, her right ventricle would change from a pressure bearing ventricle since right now it is thickened because it has to pump to two cardiac outputs to a volume loaded ventricle meaning some of the blood in her left ventricle would decided to go through the holes and into her right ventricle putting more stress on it and not really oxygenating or helping in anyway. He said that they had talked about possibly using another catheter during her surgery but before they actually put her on bypass to enter with some small like little umbrellas that would place two disks at each end of the hole and filled with something. He said that the pressures of the heart would force the little disks into the holes and that after that cell would form around them further cementing them into the VSD's. He said he was a little worried about her being away from this hospital again as they are a little more familiar with complex cases and would really love her to be close by to be monitored. So he again mentioned that they had brought the thought to her surgeon of possibly doing surgery here, which I never thought was possible. I would be very happy if her surgeon could be here but I said I don't want him to do the surgery and have to run back out of town and not be be able to be involved in her follow up care. Dr. Papez agreed that if the surgeon did not agree to perform the surgery here this would more than likely be the reason why, since he has other surgeries and patients at his new hospital. So the plan is still on to speak with Dr. T on Friday, I can hardly wait, I'm just nervous about it.

So thankfully, we were getting discharged. She had done well on room air. They said everything was fine, her lungs were clear, her echo good. Pretty much they said that she has enough high normal oxygen levels in her lungs just not enough 'cars' to go pick up the oxygen to deliver it to her body. To remedy this she needs the surgery. Bottom line again, shunt doesn't fit, she got it in weighing 8 pounds and now she is nearly 25 pounds, three times larger! But I am thankful it has lasted this long, one cardi we met in the ER said he couldn't believe she was still unrepaired and that he had never met a baby that the shunt had lasted this long in. Docs mentioned using O2 at home as needed. And we were out of there soon after.

As we were driving her home her surgeon, Dr. T called me. If felt so great that he took the time to call and speak with me about her. He asked me about her sats about what happened and what I had noticed. I love that he always takes "our" meaning as her parents input just as important as what the doctors have to say. We chatted some but agreed to speak lots on Friday. He did give me a great suggestion though and mentioned possibly getting a new home pulse ox monitor. He said that sometimes they are not calibrated right. He said just tell them what happened and that we would like a new one. I very much disliked the one we were given anyway, because it was obnoxiously loud, couldn't control volume, kept losing the parameters, etc. etc. So today I called and I already got a new one that I like much better! Alexa has been on no 02 as of yet. She is hooked up right now and sating in the mid to high 70's on room air! I told her cardiologist I was just so frightened we would not even make it to speak with the surgeon on Friday, they said they got nervous too but after everything see she can manage a few more weeks well, he said she is not growing any more at rapid rate so things should not change so quickly it is just a steady decline.

So happy to be back home, Alexa and I were so tired so we went to bed about 8 p.m. so that is why I am wide awake at 1 a.m. but will now be headed back to bed to get some extra zzz's and dreaming of happy endings.

The Cath, Aftermath and Home

2010-01-16T17:21:00.000-08:00

Me and Lexi doll early in the morning waiting after registration

Well we just got home a couple of hours ago. I am still sleep deprived, tired and irritable. Alexa seems happy and relieved to be home. It was a very long two days, seems like a week. Her cath went very well, no issues ~ I am so grateful. They took her back at 9:35 a.m. and she was done with the cath by about 11:45 a.m. The doc came out to speak with us telling us everything had gone well and that they found no surprises besides two additional small but still large enough VSD's that require patching when she goes for surgery. Without the cath they would have not known they were there, since doc explained they were very low in her heart and hard to see. Everything else in her heart looks like they expected, her ventricular funtion is good, pressures good, aortic arch beautiful they said however that she has definately outgrown her shunt and it's time to move forward. While we talked to the doctor they performed an echo and then she was taken to the Cardiac ICU.

This is were things got very hard, seeing her in some pain, wanting to sit up, kind of out of it, them wanting her to lay flat for at least 4 hours. She had already been laying down for so many hours I think she just wanted a change. Plus she kept asking for water, her poor little mouth so dry and so I asked if I could at least sponge some water on her lips and mouth and they agreed. Poor little one just sucked on that little sponge over and over till it was dry. I gave some to her a few times. She was very agitated so they kept giving her more sedation until she finally gave in. She slept for a few hours then awoke very groggy but finally they were going to let her eat and drink. She dranke so much water and juice and was so happy to be able to eat. Then I saw her smile again for the first time and I knew she would be okay.

Originally they had told us we would probably be going home that day but then quickly changed their minds. Her oxygen saturations were very low, running in the 60's sometimes dipping into the high 50's. They said they thought it best to keep her overnight for observation. I was sad but ready to spend the night. The night just seemed to drag. I was tired but couldn't fall asleep. I wished it was morning so we could get going. Alexa woke up off and on during the night, we watched cartoons at 4 a.m. then she got sleepy again. My mom spent the night with us and she helped carry her for a little whiles when she would get fussy. Her O2's remained in the high 60's low 70's before her cath they were about 74-78 they never returned to that just for brief seconds then would dip back down. If you see my previous post you will read how they warned me this might happen but I didn't think it actually would since they said it was unlikley. I was sad for knew this meant she would more than likely be sent home on oxygen and a pulse ox which she has never needed since being home and also that this would push her surgery even sooner than I anticipated.

So sure enough we are home and she is on oxygen, very low, but nonetheless we/somebody must be following her around at all times to carry her little portable oxygen tank everywhere she goes. That is a job. My hubby and I have been taking turns. Thankfully she has forgotten about the canula on her nose. I am waiting for them to deliver more of her oxygen tanks and pulse ox they did not give me.

So that's pretty much were we are at. We have an appointment to meet with her surgeon on Friday. It was hard going through this with her and it was only two days and it was only a cath. I am definaltey not looking forward to the initial aftermath of open heart surgery with a toddler. The only thing that keeps me going is the thought of being home with my baby's mended heart and not having to worry about her sats anymore, she will feel strong and happy again.

During our hospital stay we met a lovely couple, mamma named Neale, 'Hi Neale, it was nice meeting you guys, you made our wait more bearable ~ hope you are able to resolve the issues with Mr. Nicholas!' Also, ran into a former coworker who was visiting her grandaughter at the hospital who was diagnosed with Leukemia about a year ago. I will be praying for you. Also, thanks to my family for your support with our older kiddos and for visiting, thanks to Nana for spending a semi sleepless night with me and Lexi in the hospital, thanks to my friend Cherrie and hubby for the great gift for Lexi and lunch and thanks to all my friends and heart mommas for your cyber love notes. We appreciate all the positive thoughts and prayers offered on Alexa's behalf.

So needless to say, I am SO happy to be home and to have gotten through this now it's time to wait yet again for the next BIG step ...

Alexa looking adorable in her hospital gown and pointing to a dog she thinks is Dash (our dog) on TV

Having a blast in the kid's play area, she said "Wow!" when we set her free in it (before cath).

Today trying to keep her entertained, took a bunch of toys and books I went through all my arsenal.

And the awful last pic of her sats without oxygen {for the record}.

p.s. and sorry but I don't know what happened to my spell checker it's gone for some reason.

Getting Ready

2010-01-14T10:01:00.000-08:00

Getting ready. Those two words sum it up for me today.

Tomorrow is the cath, we must check in at 7 a.m., the procedure should take about 3 hours. Alexa will then be taken to the PICU to recover and remain under observation. They told us to plan to spend the night. I'm hoping it's not needed but preparing anyway. This will be the first time we're back 'in' the hospital since her discharge at one month old.

I am dreading not being able to giver her anything solid to eat or drink after 2 a.m. not water or juice after 4 a.m. The first thing she asks for when awakes is food. Wondering if I should wake her up to give her something to eat or drink before the magic hour? If other heart mommas are reading this, how did you handle it?

She has a bit of a lingering cough that comes and goes and some congestion I notice mostly at night but otherwise seems happy and normal. They are aware of this. I'm taking this as a mental preparation for the surgery to come. She hates being connected to machines and proded and poked, I am not ready to see her suffer but I know she needs this done. Just some things heart mommas and heart babies must endure.

My older kiddos are nervous for their little sister and knowing we will be at the hospital, left a note for their teachers to let them call us during the day if they would like. So off to continue getting ready ... and thanks to everyone including my friends and family for your support and prayers.

Meet Wendy

2010-01-11T08:15:00.000-08:00

Meet my long time friend and CHD survivor

Wendy...

How old are you?

33 years old

Briefly describe what your life currently looks like?

I am a mother of two healthy boys: Cristian 7 and Lucas 3 months old. I've been married for 12 years. I also have my own wedding photography business, this allows me to stay home and take care of my children and husband.

What is your CHD?

I have Endocardial cuhion defect more commonly known as atrioventricular septal defect (AVSD). I was born with this condition and diagnosed when I was 2 months old. In AVSD, there may be a large hole in the center of the heart where the wall (septum) joins the upper and lower chambers of the heart. The tricuspid and mitral valves may not be separate. Instead, there can be one large valve between the upper and lower chambers of the heart (common atrioventricular valve).

When did you/your parents find out about your diagnosis?

Shortly after coming home my mom started noticing that I had bluish lips, nails hand and feet, tired while feeding it was a struggle. I would break out in a sweat, cried a lot very jumpy she also noticed I had a rapid heartbeat. I had trouble breathing because my heart retained water and it would go to my lungs. She immediately took me to pediatrician who then referred us to a cardiologist.

What surgeries or medical procedures have you had to endure/overcome throughout your life?

That's when my poor mother’s world was turned upside down. Being a young women (20's) not knowing much English this was very scary for her. This was only the beginning of numerous caths, echos, angiograms, ekg. Aside from all these test’s, being away from my parents I spent my childhood in a hospital. Back then the technology was not what it is now and for that reason I had to wait until I was 4 years old to have my open heart surgery.

Tell us about your childhood memories with CHD?

It’s amazing to me that I recall so much at such a young age. I remember having my blood drawn all the time several times a day, screaming and fighting the nurses, after a while you become immune to it and you know it has to be done so you surrender. One of the things that stands out in my mind all the time is when the nurses could no longer draw blood from my arms they would draw it from my feet and head very painful, but by this point I would just lay there and let them do their job. Caths and angiograms were the worst; I would have to be in bed for days after this procedure. Keeping my leg still that's hard for a child to stay still, but my parents by my side reading and talking to me helped.

How did CHD affect your relationship with your siblings and parents? Did they treat you different? Did you appreciate this or resent it?

My relationship with my brothers and sister were never affected by my CHD. I believe it was never an issue for us because once I had my surgery it was like any normal young girl, with a few trips to the hospital once in a while nothing serious.

At any point as child do you remember resenting your parents for putting you through medical procedures?

No! I never resented them because I knew that what happened to me was not their fault. Am grateful to my parents for doing everything they could despite language barriers and lack of medical knowledge. My mom always explained the best she could the procedures I was going to endure and she would tell me that these procedures were necessary to make me better and once I had my surgery I would be able to run and play without getting ill. I don’t want to say I resent my parents, but I do wish they would have allowed me to enjoy kindergarten, ride my bike or go to the park and just run and roll on the grass. Instead I had to sit on the side and watch all the other kids have fun. All because my mom was afraid I would fall and injure my incision or re-open it . The truth is that I was aware of my problem and I knew my limits or how far I could push myself yet my mom didn’t listen. I didn’t learn how to ride a bike until I was 11years and that was behind her back. My mom was so protective even about the food that I ate she had in her mind that if she fed me liver all the time if would make me stronger so needless to say I didn’t have a hamburger and fries until I was 13 yrs for that matter I didn’t have anything yummy because to my mom it was all junk food without any nutrients. She’s right, but everything in moderation is okay =)

How has CHD affected your life besides your health? Did you feel different?

I live a pretty normal life with a couple of glitches here and there don’t feel different just aware that I have to be cautious. I feel fulfilled as a woman.

What do you consider to be your greatest accomplishments to this day?

Being a mother! Maybe to some this is weird, but to me it was the biggest gift because I was always told I couldn't have children. Now I have two beautiful healthy boys.

What fears did you have or do you have today?

My biggest fear was that my children would be born with CHD. I went through so many cardiologist and high risk OBGYN before I got pregnant to find out what were the chances of my children inheriting my condition. We were told that it was very unlikely for them to have my condition, I felt confident to get pregnant even though I knew I was a high risk.

What helped you cope with your CHD? Or gave/gives you strength?

I accepted this condition was part of me and that nothing I did would change it or make it disappear. I never felt sorry for myself or blamed anyone or questioned why me I just knew I was special. I never focused on my scars I actually call myself “scar women” I have so many scars from procedures and surgeries of course the incision down my chest is what people see the rest are hidden. What gives me strength to endure anything that comes my way is my faith in Jah knowing that one day not far I will have a healthy perfect heart.

Do you have any physical limitations? Do you expect to need further medical intervention?

Am not sure you would consider a limitation that I am scared of heights. Can't do rollercoaster’s I feel like my heart is going to jump out through my mouth. The most recent intervention was 7 years ago when I had to undergo lower extremity bypass. The reason for this procedure was because when I was small I had a numerous number of caths done. On on my right leg a piece of vein was catheterized and I wasn't getting enough blood to my feet. I noticed that my right foot was getting numb more frequently and that my toes were blue that’s when I got scared went to see cardiologist who ordered an angiogram who explained that I needed a graft put into my leg to provide blood flow. Surgery resolved the problem and am fine now. For the rest of my life I will have to have yearly check up with echo’s. And I hope I don’t have to have another lower extremity bypass because the graft either blocked or its not doing its job.

What were you told about having children?

That I wouldn't be able to have children. I was told this when I turned 14 yrs old. So for a long time until I got married I carried this I guess you can say it really didn't face me until the moment came were my husband and I wanted to conceive. That's when I started consulting different cards and OBGYN after listening to all the doctors my husband and I decided to try. We were blessed with our first son Cristian his now 7. My pregnancy was high-risk I suffered from High blood pressure throughout my pregnancy and labor was difficult 31 hours yet all worth it. We waited seven years to have our next child this pregnancy was pretty normal except for the really bad "morning sickness" labor was also critical with Lucas I was in labor for 20 hrs at that time Dr. decided to perform an emergency c-section. Our beautiful baby boy was born unfortunately I wasn't able to hold him right away because I was recovering from surgery. Once I was more alert I checked him from head to toe. That's when I discovered that his feet were blue as well as his mouth I freaked out and immediately called the nurse and pediatrician to come and check him they checked his oxygen levels which were normal and they called his blue tint "cyanosis" its very common on newborns when there circulation is still a bit immature. I was very scared and concerned because of my history that I had nurses check his oxygen almost every hour and pediatrician checked on him several times a day. I asked them to order an echo cardio for my piece of mind, but they didn't because everything was normal. Once I was released from the hospital he went to see his pediatrician who found my lil Lucas to have a murmur which was detected through his back not his chest. She immediately gave me a referral to cardiologist/ I made him an appointment with the cardiologist who treated me when I was younger I felt confident because he knew my history. Lucas had an echo done and they confirmed that he did have a small murmur that's very common on baby's. I felt better knowing they saw his lil heart and that he did not have my condition. He has to be checked in 6 months and at that time murmur should be closed if not we will discuss further.

At what age did you start feeling the need or independent enough to deal with CHD on your own? Or do you still enjoy having the support of your family?

I knew that I had a special heart that’s what my mom would always tell me and that I needed to be careful when doing things. I guess you can at a very young age. I will always need my family no matter how old you are you will always need them. This might sound a little weird, but yes I love to feel cared for and know that they are still so concerned about me as if I were a little girl.

What advice would you give children growing up with CHD?

Do not allow this disease take control of your life you set the bar don’t feel sorry for yourself you can do anything you set your mind to. Don’t be satisfied with only one opinion seek out several and weigh and then make a decision. If I would have listen to my cardiologist and mother I would have never experienced the greatest gift of being a mother.

As an adult with CHD what words of wisdom can you provide parents raising children facing great challenges with CHD?

I would say don’t smoother them because you’re afraid that something can happen or don’t stop them from doing things because you’re afraid allow them to do things to experience new adventures. I know that as parents our first reaction is to shelter our children thinking that we can protect from something happening to them. The truth is that they will grow to be their own person and make their own decision even if you don’t agree with them so why not start now.

Is there anything else you would you like us to know, about your past, present or future, or anything else you would like to share?

Not that I can think of at this time.

Wendy, you are a beautiful and strong woman, wife, mother and friend! Thank you for allowing me to interview you and be part of the Heart Mom Chronicles. I know seeing you gives me hope for my own CHD baby and I'm sure you will give many other moms that read this hope and insight into living life with CHD. Much love and happiness to you and your family!

Heart Catheterization Date

2010-01-06T13:50:00.000-08:00

Since last Thursday I knew they would be calling. I was a bit anxious every time the phone rang and didn't ring. I called today myself to make sure I wasn't suppose to be the one calling, they said no, they would call but would be more than happy to transfer me to hospital procedure scheduling so I could speak with them. I said 'sure' and hung up. I was scared. Scared to bring this day on any closer than it needed. Scared to actually have to put it in writing in my calendar. So I nervously took a breath and waited some more. A bit happy to have escaped facing this for a little longer - although I knew it was coming, they would be calling.

The call came as I was driving to rehab therapy for my leg. I quickly parked and messed with my crutch and pulled out my planner. I had already thought of some dates I wanted, early in the week so all the normal docs are there and I still had a whole week of normal business days ahead of us in case I had questions or needed to take Alexa in to be seen for some reason. Also, not to soon, but early enough to have the cath results ready for our consult with her cardiothoracic surgeon on January 22. Well, they said they only had Friday, January 15th available, this would give enough time to get the info to her surgeon but alas not provide me the reassurance of the 'regular business day' instead it's on a Friday, right before not just a weekend but a holiday weekend. I know it may sound insane to some, crazy, petty but when my child is in the hospital having an invasive heart procedure that will require anesthesia etc. I want all the top docs present, not home or possibly on vacation. But I guess I will not jump to conclusions that I will be needing them, instead I will just pray/hope/assume that all will go well.

So again, Heart Cath Date is on Friday, January 15th check in time 7 a.m. Alexa cannot have anything to eat or drink after 2 a.m. The cath should last about 3 hours. She will also be given an echo while she is out. The scheduler told me they would most probably be keeping her overnight for observation in the PICU. So I have to plan on sleeping in the hospital that night with my baby. I'm hoping she is doing fabulous they let us come home but I guess we shall see. Did your kids need to stay over night? Her cardiologist also mentioned that, sometimes, but rarely, the children come out of the cath lab with lower oxygen. He said if this happens he would send Alexa home on oxygen and we would have to schedule her surgery sooner. Hope again, this is not the case.

Now, why does Alexa need this heart cath? Well, this is to provide information to the surgeon before surgery on the inside workings of her heart including pressures and blood flow. During surgery they cannot collect this info as the heart is stopped and not beating.

It hurt's to type those words. 

To think of my baby's beautiful heart being stopped and not beating is VERY SCARY! So very sad.

So anyway, that's all I can take talking about right now. I need a break from these thoughts and to have some lunch.

As a side note, therapist thinks it will take me about 12 weeks to be able to walk normally again. He said I have lost a lot of flexibility and strength in my leg. He said I need to get it to neutral position meaning -8 to be able to walk again. Right now I am at 38 degrees the wrong way. So I have a lot of foot exercises to do.

And one last thought, last time Alexa had a heart cath, back when she was a newborn, she had her artery nicked and developed a blood clot. So another reason why I worry. Just so you know.