Sunday, May 17, 2009

Day 19--April 28,2009

Today started much like so many before it, at least in Hillsborough. We were awakened this morning by the wonderful pitter patter of little feet, and the boisterous voice of a 2 year old bursting through the bedroom door yelling at the top of his lungs “Momma, Daddy, Momma, Daddy, giyet UP!” Who needs an alarm clock when we have Michael?While this can be mildly annoying, I can now be exceptionally thankful that he has been a very healthy boy. Other than routine checkups he has only been to the Doctor once for being sick, and even then they told us it was nothing. It is easy to sit back and enjoy blessings that we didn’t even know we had, without giving thanks. “Katie’s Story” has keenly tuned our senses, and taught us to pick up on the little things that so often have been overlooked. Ephesians 5:20 reminds us to “Give thanks always for all things unto God and the Father in the name of our Lord Jesus Christ;”I compose this update from the empty comfort of my own home. The current schedule that we have created, requires me to leave Parker’s House in Hillsborough about 6:30pm so that I can get Michael into his “big boy” bed by bedtime. He and I will then get up in the morning for a somewhat normal day. I will drop him off at Judy’s Learning Center, where he attends daycare, and I will then head on to work. Once school is out tomorrow we will head north again to our home away from home and the rest of our little family, until Thursday night when we do it again.Beth keeps a constant vigil by Katie’s side, and has been very instrumental in her continued recovery. She has no further plans to return without our little girl. Beth’s persistence, that only a mother can have, is what broke Katie from her aversion to the pacifier. Now should this little, and seemingly insignificant piece of hardware leave Katie’s mouth, it is a virtual catastrophe!Today with Beth’s persistence we again met a small milestone. Katie drank 12 cc’s of milk from a conventional baby bottle! This is only about a teaspoon or so (I think), but it is a huge step toward bringing her home. This small amount of sustenance took her twenty minutes to eat. It also greatly fatigued her as the suck and swallow portion of eating requires that she hold her breath. Since she obviously has a depleted lung capacity this causes desaturation of her blood oxygen. She will have to learn slowly to get a rhythm and stick with it. We are so proud, and Beth was just beaming! I missed the whole thing! So no pictures of this event can be posted for your viewing pleasure. I had taken time, which I do not regret by the way, to visit with our wonderful Pastor, Reverend Randy Beasly, in the waiting room.On a bit sadder note, Katie is still fighting some withdrawal symptoms, and it has been determined that the Versed that she has been having administered to her is just not working in her case. She has now been switched to Ativan and phenalbarbatol. The later of which will also require stepping down slowly, and has its’ own set of withdrawal symptoms. We have been told however, that we can at least bring her home and continue that regimen here if need be.She has been able to maintain her blood oxygen saturation at an acceptable level for two days now on her own, and breathing room air! While we are still in the Intensive Care nursery, Beth and I are hoping that she will soon be transferred to the “transitional care nursery”. We are still in the woods, but we are optimistically peering through the branches!I look forward to that soon coming day when I might hear two sets of pitter pattering feet and the harmonious chorus of “Mommy, Daddy, Mommy Daddy,…get up!”

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