PICU Day 4 ~ (June 28, 2012)

~Saying "hello" to Daddy after his day at work~

We are settling into this place for the long haul as more findings today raised more questions, requiring more tests with Noelle's heart.  One of her cardiologists {who has followed her heart from before she was born} spent quite a bit of time doing yet another echocardiogram this morning so that she could compare images from yesterday as well as images from the past 7+ months of echocardiograms.  After much time and consulting with the cardiac team, they have determined that there are some definite abnormalities with Noelle's heart, but they are uncertain as to how this is affecting her or if it is impacting the current situation or not.  The right side of her heart is still not functioning although we have seen clinical improvement with her; but while several of her issues are common with pulmonary hypertension, she also has several things that are not typical and thus giving them more cause for concern {especially considering that there is no clue as to why she suddenly started doing poorly again}.  So they have decided to perform the heart catheterization next week and hopefully be able to make some determinations and a care plan from that point.  Worst case scenario {as of what we know right now}, she would require some type of heart surgery to fix the issues they believe they are seeing {and contrary to some misinformation floating out there, we are not anywhere close to facing a heart transplant at this juncture}.  Still, there is much we do not know, and so we just continue to wait and see what God unfolds for this precious little girl.  Today was a tough day in many respects, not so much because of this news but because of the daily things that begin to wear on you during hospital stays such as this.  The various tests, IV sticks, blood draws, and heel sticks take an extreme toll on her tiny body, especially when the blood for her labs constantly clots or a vein collapses and requires them to stick her multiple times during the day.  I hate the scared look in her eyes that wonders "what is coming next," and yet I am also thankful that she will not remember any of this.  There are certainly residual effects from all of it, but we have seen her reactions change during her time at home as she realizes that touch is positive in that environment; so I am encouraged that we can reach that point again with her after a lot of love and time at home once again.  Days like this are very hard on her physically, and they are emotionally draining for me.  However, when she is able to have a good nap and wake up acting as if she does not remember any of the things she experienced, the hard parts of the day just melt away.  That little smile does wonders for my heart, and she spent a long time tonight just talking, smiling, and playing with us before she settled into a deep sleep once again.  Of course we snapped all kinds of pictures, which I will share at the end of the post {but we did not even begin to capture all of the smiles she was sharing tonight!!}.  Some positive news from today was that they are nearly certain that the acid reflux was causing her desaturations yesterday, and the ng tube has nearly eliminated them today and made it possible to wean her oxygen flow down to a much lower amount {comparatively}.  As we have experienced many times through this journey, God continues to place us into situations with Noelle that do not provide immediate answers and cause us to constantly depend upon Him for strength and comfort.  He truly has carried us through these many months of unknowns, and we have confidence He will continue to do so through these coming weeks as we seek to make the best decisions for Noelle's health.  Please pray for wisdom for both us and especially the doctors and for rest and health for all of us, and we hope to report uneventful days through the weekend as they attempt to help Noelle rest and build as much strength as possible in preparation for this procedure early next week. While we cannot usually respond, we do read your many encouraging comments and notes of prayer for our little family; and we appreciate it more than we could every possibly communicate in words. Your fervent prayers before God's throne are a testament to the body of Christ and an encouragement to our hearts.  Thank you.

~Rested & Contented Little Girl~

~Sparkling Eyes~

~Precious Girl~

~This is our "normal" happy girl!!~

~Sweet smiles for Daddy~

~Hello, camera!!~

~Shall I pose for you?~

~Sitting up like a big girl (with help, of course!)~

~Excited about the goofy noises that Mommy makes~

~I can make my own goofy noises too!!~

~...and goofy faces...~

~....and priceless smiles.~

~Happy, Happy, Happy!!~

~We can make it through some more of these days, Mom!!~

~Tiny but brave little fighter~