December 2, 2009

Someone ...


is feeling a little better today!


And it's not the plant.


After mommy saw the mess, someone saw her make this face



then she smiled and got the camera


until my brother and sister got home from school and helped someone do this





then mommy wasn't smiling anymore but someone was thrilled!

The END.



December 1, 2009

Cardiology Update and more

Alexa had her cardiologist visit on Friday, November 20th. She weighed 22 pounds 5 ounces. I cannot remember her height. Her oxygen sats were 79. For the first time Alexa was walking around the little room before Dr. Papez came in. He was happy to see her walking. As soon as he opened the door and the assistant was walking out from doing her vitals he asked her "What are her o2 Sats? He was pleasantly surprised. He told me he really thought they were going to be lower. Especially since her visit the ER and I had told him they kept bouncing around from to very low to her normal. We talked about how she is doing and talked a lot about surgeons and locations. Alexa had her last surgery at PCH with Dr. T. Now Dr. T is in Tucson. I would like Dr. T to operate again because he has already been into her heart and knows the work he did before and not to forget he is an excellent surgeon. The problem is the location, that it is farther to us, and that all of my support system is here and that I have older children to think about and care for. I'm also worried about the amount/experience of this new hospital in dealing with babies after open heart surgeries, like the intensivist, nurses etc. So I have considered staying here and seeing someone at St. Joes or maybe even going to C.S. Motts in Michigan with Dr. Bove. It's a hard heavy choice. I really just wish Dr. T was at PCH like before, that way I at least know the hospital, it is close by, and I trust Dr. T. Now no matter what, where, who we choose there will be something new. Open heart surgery is scary in and of itself and dealing with new unknown surroundings and people when you are trusting them with your child's life is overwhelming. I guess I just need to make some calls, maybe some appointments and just pray really hard on the matter. For a while we had been going to see Dr. Papez every 6 weeks. He now said he wanted to see us in 4 weeks. He said he might order a cath next time he sees us to be done in January. I was kind of surprised and sad by this. He said it was just a delicate balance we have to have with her and explained that she is pretty much done with that steep growing curve and so now waiting a month or two is not going to be much of a difference in the size of conduit they can place. I told him I just don't want her to have to 2 caths and he said no just one would be needed. I know he is thinking Cath in Jan and start thinking surgery in Feb/March. He said he would agree to wait a bit longer for the cath if her o2 Sats did not change or dip by the next appointment. Because of his schedule we will not be seeing again until December 31st. In the mean time I will just enjoy my baby and try to push surgery thoughts besides the planning out of my head.

Also, Alexa is currently sick. She started running a fever Sunday night, all day yesterday she felt awful, she was tired and achy didn't walk around the house and just wanted to be carried and held. It wasn't till her big brother and sister came home from school that she perked up a little bit. She was running a fever between 100 and 101. something. I called her cardiologist to see if it was okay to still giver her the baby aspirin she takes, he got on the phone with me and explained yes and why. He also wanted to know her symptoms and how she was doing. He suggested to call the peds office as he was worried about the flu. I called them as soon as I got of the phone but they told me to wait and see if how she did and if any other symptoms developed since she didn't have any other cold/flu type symptoms. She is currently still asleep this morning so I hope she has a better day. She did sleep better last night. I only gave her Tylenol once around 11 p.m.

Here are some random pics of the last few days.

In a cute dress after a morning in the ministry.

With cousins.

Her favorite playing outside with rocks and dirt.

Princess cousins.

Lot's of feathered visitors.

With my honey.

November 24, 2009

Mini Meltdown


So last night it hit me. As I watched Alexa play and walk around the house with a huge smile on her face. And my home was filled with the playful banter of children and giggles. My heart was just so happy and content for our seemingly happy little ordinary life. But as soon as I felt that joy begin to swell my heart, I was stabbed with the realization of what the near future holds for my precious little daughter, open heart surgery. This surgery looms in our horizon like an ugly dreaded storm. She holds no fault in needing to face such a grave surgery. She did not choose this disease. Unfortunately this disease chose her, my innocent, playful, jovial, always smiling, easy going Alexa. I was happily sitting on the floor playing with her, when I suddenly collapsed to the floor in tears. My sweet doll, how I wish to take this from you. How I wish to be powerful enough to change your fate. Alexa reached for me as I lay on the ground and so I lifted my face and she saw me in tears, she looked intently into my eyes, as I see it is the first time she notices me crying. She tracked my tears with her finger down my cheek. Then she leaned into me and gave me a sloppy kiss and then hug. She knew I was hurt. And as much as I don't like her to see me that way, it felt good knowing that she cared and tried to make me better. I only hope I can do the same for her when the time comes.


November 22, 2009

Blogger Award and future update

Just want to say a quick thanks to Stefenie from When Life Hands You a Broken Heart Blog for awarding me with the Heartfelt Blogger Award! The Heartfelt Blogger Award is awarded to the blogs that make us feel all comfy or warm inside when we read them. Stefenie's son also shares a very similar diagnosis as Alexa so I really love keeping up with her family.





Here are the rules for this award...


1) Display the award logo
2) Nominate up to 9 blogs that make you feel comfy or warm inside
3) Link to your Nominees and leave a comment on their blog telling them about the award.
4) Link to the person whom you received the award


There are so many blogs that I enjoy reading that are in my heart friends list and/or that I follow. I don't like playing favorites but in the spirit of sharing some amazing blogs with you I will share just a few with you (listed in random order).

1 ~
Living for Eden, for the beautiful strength, testimony and will to live of a father living for his daughter Eden, after battling a life time of CHD and ultimately a heart transplant.

2 ~ The Duncans, for Melissa's strength and honesty in writing about the loss of her precious son Caleb to CHD and coping with life after.

3 ~ The Nie Nie Dialogues, for Stephanie's celebration of motherhood, womanhood and strength to go on after surviving a tragic place accident that changed her life forever.

4 ~ The Kurz Family, for Josie's love and devotion to her two precious little girls, one also battling Alexa's same CHD.

5 ~ Moments With Moriah, for this amazing little girl who after nearly two years in the hospital has yet to know what home looks like and has endured more than any child I know and is always smiling and her amazing parents enduring hope.

6 ~ Lauren's Heart, for this special, strong and intelligent young woman who tells her story of growing up with CHD and her insight into personally living with this disease.

7 ~ CJane Enjoy It, for this momma sharing her quirky sense of humor of life and mothering and growing up in a large family in a home with four seasons.

Okay it's 1 am so I really have to stop now. So many inspire me to keep moving forward through joys and pains losses and gains. I am glad that my blog does the same for some of you or at least Stefenie. Thanks again. ;)

Alexa had a cardiology appointment last Friday November 20th, so I will post an update a little later.


November 16, 2009

A dreaded call to 911 & new mail lady in the neighborhood

Extra! Extra! Read all about it!

Okay many of you know about the 911 call because I posted about it on facebook but I still want to update here for the sake of conserving an accurate historical account of the facts.

As I mentioned in my previous blog post, my girls were/are sick. Alexa has never really been sick at all since bringing her home from the hospital, that's a little over year with nothing serious. Which has been wonderful and a true blessing! Oh and lot's of diligent work like hand washing, hand sanitizer, staying away from public places (as much as possible) and knowingly sick people, etc. But alas, with older children in school it is impossible to not have 'bugs' enter our home. So Yasmin came down with a cold, very runny nose, and sneezing, turned to coughing, low grade fever, only one night she the fever spiked 102. She does not like to be in her room alone, the face mask I bought her fit her big, and so she didn't feel terribly bad so she wandered around the house more than I would have liked. Needless to say, Alexa then came down, with a low grade fever, and some head congestion, then on early Friday morning, 1 a.m. to be exact, I had to make the call that being a heart momma I had always dreaded. Docs always warned me that getting sick for Alexa could prove to be very dangerous. She could get into serious trouble right away. That night she was very congested but managed to fall asleep after a while of fussiness. I had two humidifiers going in the house, one for each child, but still Alexa woke up gasping for air. She couldn't breathe, she kept trying to catch her breath but it wasn't happening. I could tell she was feeling panicked as was I. I woke up my husband, who was also feeling sick, and then I called 911. They were here relatively quickly. I had to explain all of Alexa's medical history. Called the cardiologist and we were on our way to the Children's ER. They gave Alexa a small dose of extra oxygen along the way. She was laying on my chest and I was propped on the gurney as we drove away and into an uncertain future. I worried about what we would be told as we got the hospital, I feared her needing to be intubated. She hated being messed with. Her 02 levels were a little lower than usual, which is not good because they are already low to begin with. She sounded very junky in her chest and noisy as she tried to breathe. The doc finally came to see us, and after listening to her suspected Alexa had Croup. She ordered for her to get a breathing treatment, a chest X-Ray, a nasal swab to rule out flu, and some oral steroid medication to open up her airway. After the breathing treatment which she hated but finally slept through the end of I could hear a noticeable difference in her. She sounded just so much clearer. The flu test was negative, thank goodness, and I felt so bad because I had to hold her down for the chest X-Ray and she just looked at me with her big sad eyes and wondered why I was doing this to her. I really hate her having to get soooo many X-Rays as it is so much radiation for a tiny body. But they had to make sure her lungs were okay. So after a long morning there about 5 a.m. I finally called my hubby to come pick us up. All I can say is thank goodness for 2 a.m. cartoons. And thank goodness we dodged one big bullet and got to come home sweet home again.

Now for other news, as I mentioned in my title there is a new mail lady in our neighborhood.


She is kind and generous and brings with her hand made notes with good tidings and cheer.



She travels far and wide




with big brother watching



carrying extra precious cargo


through traffic jams



and dangerous opposition



always with enough time to stop and chat to see how your doing



and to stop and skip a few rocks



does it all in high fashion



and never misses your house



Now don't you wish you had a mail lady like that?

I am glad we do.

November 12, 2009

I have peace.


In this world with no peace, with stress, with worries, with sickness, death, pain, crimes, hate, disasters, and many more afflicting conditions, I can honestly say I have peace. Although my two girls are sick, and I have not made dinner yet, I'm tired and I haven't cleaned my house today. I have peace. A true, quiet, calming, gentle spirit that surrounds my heart and mind. I thank God for this peace, for I had lost it for a time, but it has returned to my life. It sometimes gets lost in the shuffle of life. In all the things I need to do or want to do, in all my projects, in all my worries. But I have prayed to receive this peace again, and alas it has come. God has listened to my prayers. Thank you God. Please help me to continue doing my part, I know you always do yours.

"Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving let your petitions be made known to God; and the peace of God that excels all thoughts will guard your hearts and your mental powers by means of Christ Jesus."
~ Philippians 4:6,7

"For I am convinced that neither death nor life nor angels nor governments nor things now here nor things to come nor powers nor height nor depth nor any other creation will be able to separate us from God's love that is in Jesus Christ our Lord."
~ Romans 8:38,39

November 5, 2009

Look Who's WALKING!!!

Alexa had been taking a couple of steps here and there when persuaded to do so at 12 months. On Friday of last week she walked about 5 steps at a time, again when persuaded. Yesterday, she took off walking when I wasn't looking and least expected! Needless to say, she is loving her new found skill. She tries over and over no prompting or convincing required. She is getting pretty far along the house.

I am so excited and yet so sad and just so emotional over it! She is my baby and she is growing up right before my eyes! (which is just the way I like it) I am going to miss her special little crawl she does though, scooting around on her bum and dragging one leg around and pushing herself with one arm. But then again, will be glad she will be getting off the dirty floor, no matter how many times I mop it.

Wow! My baby is walking! Did you hear that world? WALKING!

I officially bought her, her Stride Rite baby shoes last Friday because I knew it was only a matter of days, so ...

Watch out world! Here she comes!



Isn't she gorgeous?!

I'm just so proud. Tissue please.



p.s. Don't mind my curtains, I've been wanting to go to Ikea or fabric store forever since purchasing our new sectional to look for some new delightful curtains, but heart mommas, you know how it is, kind of hard to do when your suppose to be home fleeing from the flu.

November 3, 2009

My Yazzy Girl


Yasmin, today like always you are my wonderful princess.

Always so helpful, so caring, so sweet.


I love your innocence.

I love your voice.


I love the way you love.

I love your sometimes quiet reflective spirit.



I love your never ending inquisitive mind.

"Does the devil eat sugar since you know its bad for you?"

"Can God do cartwheels?"

I love the way you love to cuddle and be cozy.


I love the way you jump so carefree on trampoline.

The way you love the seasons.

The fact you love to decorate, cook and bake, all things domestic!


I love the way you love to help me.

The way you care for your little sister.

The way you always forgive and forget the torments of your big brother.




I know you will one day make a wonderful mother and wife,

although right now you say you will never marry

because you want to live with me forever.

And I tell you this is perfectly fine


because I sometimes wish it were true



although I know the truth

that one day fortunately and unfortunately


prince charming will find you

And I’m sorry I get a little frustrated with you lately


since you are like my little shadow worried and following me
around the house everywhere I go.

But I know this is just a faze
(separation anxiety) and it will pass,

like it did for your brother


and even though I get a lil annoyed right now at times about it


I know I will miss it when it passes

as it will mean you are older, wiser,

a little more mature and secure.


Thank you my beautiful little girl for your patience with me

as you teach me many things about life



When I was little a girl,

I always dreamed about having a little girl


and I look at you and I can’t believe my dream came true.


Remember I love you always and forever.

Your mommy.



Proud to say that now at the time of posting, you have grown up just like my letter predicted. You are no longer scared if you don't see me, you trust that although I may not be visible and present - you know I am always there for you. Love you.

October 23, 2009

Hope in the Midst of Tears

I am terribly sad right now, crying after learning about another terrible loss of a baby with Congenital Heart Disease. As a heart mom, I am emotionally vested in the journey of these heart families and I partake, like it or not, in both their joys and sorrows. Today this family has experienced the greatest loss, that of their beautiful son Aiden and maybe in this moment of darkness, temporarily their faith in God. "Faith does a whole lot doesn't it?" they wrote disheartened as they shared their devastating news.

Have you at times felt betrayed by God? Abandoned? Maybe even wondered why he was punishing you? Wondered why he permits suffering? If he will ever intervene? If he cares? If there is hope for dead loved ones? Will we ever see them, feel them, hug them again?

Some biblical servants of God in ancient times, felt abandoned by God. Even Jesus for a moment felt forsaken as he clung to life on the torture stake. It is most definitely an impotent and destitute feeling, like walking in the 'valley of deep shadow'.

After Alexa's diagnosis, I too felt betrayed by God. I could not pray to Him for days, maybe even weeks. Well, I did pray but they were superficial prayers just giving thanks with my children, for our food, life, etc. But I could not pour out my heart to God like I was accustomed to. I was ashamed to feel this way. I was embarrassed to tell God how I felt. Yet, I knew he already knew. I knew he was waiting for me to reach out to him, because I know he cares. Also, many times in the NICU I felt desperate and hopeless, reduced to basic survival, hanging by a thread, sometimes feeling like I was spiraling away, losing my hope, my faith my grip on life and out of God's hand. And really nobody that has not experienced this level of stress and sadness can even begin to understand. You are reduced to almost nothing, nothing but dust within a raging storm.

Although my heart was broken by the news and or my times in the NICU/PICU, I knew that God was not the cause of my problems.

James 1:13 - "When under trial, let no one say: 'I am being tried by God.' For with evil things God cannot be tried nor does he himself try anyone".

And this comforted me. God was not to blame. After the diagnosis I was not able pray until I was one day made to read and meditate on the story of the Widow of Zarephath (1 Kings 17:8-24) only then was I able to break my silence with God. She was a very poor widow living with one young son during a time a famine. Yet the prophet of God, Elijah was sent out of his way to seek refuge and food in this poor woman's home. I wondered why her? Why not send him to a more stable home? Why was she being asked to do more, to give away the only food she had left, when maybe another family could have better hosted and cared for the prophet. Yet she was blessed for her courage and faith and God was glorified through this process. She was blessed because God promised that her food would not finish and it didn't.




While the prophet was there her son suddenly got ill and died. This seems to be more than she can bear and she reaches her breaking point. She exclaims to Elijah " What do I have to do with you, O man of the true God? You have come to me to bring my error to mind and to put my son to death." Even though she had witnessed a miracle, and had been fed by the hand God, she still had her moment of weakness and doubt. Despite her faith, she feels like God as forsaken her and was punishing her. Even Elijah asks God "O Jehovah my God, it is also upon the widow whom I am residing as an alien that you must bring injury by putting her son to death?" After much pleading Elijah is able to bring her son back to life!!! As he hands the living child back over to his mother she remembers her faith and the mercy of the Lord and cries " Now by this I know that you are a man of God, and that the word of the Lord in your mouth is truth." God does not leave her alone, once again he hears her prayers and provides deliverance. Even when she thinks he has forsaken her and there is no hope. So although, I felt weak and like I could take no more, God permitted not caused me to experience this situation. And through this, with God's help, I have gained greater strength and faith knowing I can overcome anything that comes my way.

Although God, may not intervene miraculously today in most instances as we would like, it is comforting to know that God does not "take" children from their parents as some have been told. It is not his will to make people die and take children or family from their loved ones. The Bible says:

“Far be it from the true God to act wickedly, and the Almighty to act unjustly!”- Job 34:10


For example, although the earth produces ample food, some children die from malnutrition from selfish political leaders and commercial elements, others die in accidents just like adults as

Ecclesiastes 9:11 says: "Time and unforeseen occurrence befalls them all."

meaning we can all become
victims of unfortunate circumstances like being at the wrong place at the wrong time. Other children are born with physical or mental defects, sometimes these are induced by parents bad prenatal choices but in many cases it just by chance as is the case with many babies born with CHD or other defects, or for those who become ill sometime after birth. God does not cause birth defects or illnesses. He created a perfect human pair, with the ability to bring forth perfect children in their own likeness. The sin we inherited from Adam carries with the potential for physical and mental defects and sickness and eventually death.

But thankfully, God lovingly extends to children the benefits of Christ's ransom sacrifice and he promises and provides this hope regarding death:

Isaiah 25:8,9 " He will actually swallow up death forever and the Sovereign Lord Jehovah will certainly wipe the tears from all the faces ... And in that day one will certainly say Look! This is our God. We have hoped in him, and will save us. This is Jehovah. We have hoped in him. Let us be joyful and rejoice in the salvation by him."

John 5:28,29 " Do not marvel at this, because, the hour is coming in which all those in the memorial tombs will hear his voice and come out, those who did good things to a resurrection of life, those who practiced vile things to a resurrection of judgement."


John 11:25,26 "Jesus said to her, 'I am the resurrection and the life. He that exercises faith in me, even though he dies, will come to life; and everyone that is living and exercises faith in me, will never die at all. Do you believe this?'"

God has such loving concern for bereaved ones as he says:

Psalms 146:5,6 "Happy is the one ... whose hope is in Jehovah his God ... The fatherless boy and the widow he relieves."


This applies to of course anyone who has lost also child or anybody else to death.

And let us remember that he himself lost his child Jesus in death for 3 days. For the first time ever, Jesus did not exist not in spiritual form nor in human form. It must have been very painful for God to see his son unjustly suffer and die. And we can have this comfort that God knows how we feel as we watch our children suffer and sometimes maybe even die. We however, if we had the power, would instantly change our situation if we could, God however, had the power to stop the suffering and death of his Son, but he, actually the both including Jesus, chose to endure this painful death for the LOVE of humanity. To give us another chance at life. To give us hope of a better future.

"For God loved the world so much that he gave his only-begotten Son, in order that everyone exercising faith in him might not be destroyed but have everlasting life."- John 3:16


Let us remember that God is the giver of all things good not bad.

"Every good gift and every perfect present is from above ...." - James1:17

People who suffer should not assume they are being punished by God. Of course however, those that violate godly standards of livings do experience bad effects. Like you reap what you sow. But in other instances, bad people may seem to prosper for a long time. In contrast, Jesus Christ, who never did wrong, was cruelly mistreated and put to death. So in this system of things prosperity should not be viewed as proof of Gods blessing nor should adversity be considered proof of his disapproval. The day of accounting with God will come, and at that time he will punish the wicked, destroying them forever but the upright ones, many of whom have suffered adversity will enjoy perfect health and a generous share of earth abundant produce.

Proverbs 2:21,22 The upright are the ones that will reside in the earth, and the blameless are the ones that will be left over in it. As regards the wicked, they will be cut off from the very earth, and as for the treacherous they will be torn away from it."


Revelation 21:4 "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."



Psalms 37:10,11,29 - "And just a little while longer, and the wicked one will be no more; and you will certainly give attention to his place, and he will not be. But the meek ones themselves will posses the earth, and they will find their exquisite delight in the abundance of peace. The righteous themselves will possess the earth, and will reside forever upon it."




It is a wonderful promise of God, a world without death, suffering mourning nor pain!!! And like we read the hope above about the resurrection of those dead loved ones where will be able to be with them again.

I never intended to use my blog as a pulpit to share my faith. But at least this once, I felt the need to share these beautiful truths with those that are suffering and yearning for a better life.
Know that you are loved by God and he is not the cause of your pain. Instead we have an enemy the devil who does inflict much suffering on humankind.

If you would like to learn more about why how permitted suffering and if it will ever end go here. If you would like to more about things discussed in this post please go here.

I also would like to conclude, what I'm sure will appear to be a very long post, with a short motivational illustration for those of those of us who are going through some type of trial (which is many of us):



The only survivor of a shipwreck was
washed up on a small, uninhabited island.
He prayed feverishly for God to rescue him, and
everyday he scanned the horizon for help, but none seemed
forthcoming. Exhausted, he eventually managed to build
a little hut out of driftwood to protect himself from the
elements and to store his few possessions.

One day, after scavenging for food, he arrived
home to find his little hut in flames with smoke rolling up
to the sky. The worst had happened! Everything was lost! He
was stunned with disbelief, grief, and anger. 'God, how
could you let this happen to me?' he cried.

Early the next day he was awakened by the sound of a ship
that was approaching the island. It had come to rescue
him. 'How did you know I was here?' asked the weary man
of his rescuers. 'We saw your smoke signal,' they replied.

Moral of the story: It's easy to get
discouraged when things are going bad, but we shouldn't
lose heart, because Jehovah God is at work in our lives, even
in the midst of pain, and suffering. Remember that, the next
time your little hut seems to be burning to the ground.
It just may be a smoke signal that summons the grace of God.



May we all find comfort and hope in the midst of tears
knowing that God is faithful and will not let us endure more than we can handle,
he will provide escape.



Most pictures used in this blog post taken from the Watchtower Bible and Tract Society.








October 20, 2009

Reason # 1, 773, 262 why I love my husband




My dear hubby doesn't know this, but last night I fell in love with him all over again.

As I laid in my dimly lit bedroom, ceiling fan humming and baby crying beside me, the love of my life walks quietly into our room to find out why the baby had begun to cry.

"She want's more tee tee (meaning to nurse)" I say, in a kind of defeated sort of voice.

He knows I have been sore from her wanting to be latched lately, not just for nursing but by her using me as a pacifier.

Without another word, he gently picks her up, and sits at the edge of our bed rocking her back and forth as he softly explains she can't always use the "tee tee" to fall asleep. He begins to sing her a sweet made up little song about saying goodbye to the tee tee.

I love nursing my daughter but thoughts of weaning have began to enter my mind. I'm not ready to do it quite yet as clearly neither is she, but as he sang her that song I couldn't help but contemplate that in the foreseeable future this beautiful journey may be coming to an end.

As I look over at them, I could see the back of his and her silhouette. She gently begins to lay her head against his shoulder and her little arm falls to the side. I see her go from rigid and upset to peacefully melting away into her daddy's arms.


I look at them

and I am in love with both.

I think of how safe she feels in his arms,

about what a great, patient, gentle and loving father he is.

And I cannot help and think about our Heavenly Father,

about how much He loves each one of us

and how good we feel in His arms

when we allow ourselves to be comforted by Him.

And so I lay in my bed

with a full heart

filled with joy and gratitude

for the love that surrounds me ...

both from heaven and on earth.


Thank you to my angel Gabriel for being more than any women would ever want and deserves. For our beautiful life, for you.

Love Always
your wife, mm.