“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” Albert EinsteinThe roller coaster ride continues! Today Doctor Kurana started faxing paperwork over to UCLA. We should know by Monday/Tuesday when they will want the transfer to happen or if they want Jonah to stay in Bakersfield for a few more weeks. Thank goodness Jonah had a great night last night and a good day today. His spinal tap went ok, they were able to withdraw a few cc's of blood but not nearly as much as the doctor had been hoping for. Good news is his lungs are strong (amazingly, his massive PDA valve should actually be causing a great deal of problems for his lungs) and he continues to require low Dopamine levels for his blood pressure. Small miracles, small miracles. I keep reminding myself that any progress is good progress. My Dad today was saying that every bit of progress is a miracle and it really is, right? Especially for babies this small, any positive progress, every day that they do better is a small miracle.
The doctor did say today that UCLA generally likes to first try a "reservoir" before actually inserting a shunt. The plus side to this option (if Jonah is a candidate) is that it would be temporary (it functions the same as a shunt would) and if Jonah were blessed enough to recover from the bleeding on his own in the next few weeks he would not be faced with the life long management of a shunt. Obviously the down side would be putting Jonah through two separate surgeries should the reservoir not work. I know these are all things we will further discuss with the neurosurgeon once we get down to UCLA.
Noah has really been struggling with his lungs and oxygen. I feel badly as I often overlook Noah because of my overwhelming concern for Jonah, I forget that he is at just a high risk of having long term affects from being so premature. The doctor was saying the situation of Jonah and Noah is a perfect example of how imperfect the science of caring for micropremies really is...after all Noah had medication for his PDA valve which should in return help him a great deal with his lungs and Jonah still has a massive valve that he has not been treated for. Noah is struggling with his lung development and Jonah is stable. So they both have their separate issues.
We are going to give Noah another blessing tonight in hopes that his lungs will become more stable. He received another blood transfusion today which helped out a little but he is still requiring over 60% oxygen. The doctor said they are really hoping his lungs do not continue to have such severe problems as the higher the oxygen the more likely the damage to the lungs.
Now for good news with Noah and Jonah, they both gained weight! Jonah gained two ounces and Noah gained closer to 3 or 4. So I was at least right with Noah! I can tell that he has grown. Also, Jonah's head measurement did NOT get bigger today! Yes! We again are very cautiously optimistic but we are hoping that this means the bleeding has at least stopped progressing.
Noah was transferred to an enclosed bed (Giraffe bed) just like Jonah's and that is a great thing as these beds are much more affective at aiding with weight gain and overall stabilization of the babies. It was a hassle though, the nurse today said it took four of them to transfer Noah to his new bed. He said Noah handled it fairly well and that the nurses were more anxious then he was! Sounds typical of my Noah. It is interesting to see their personalities already developing.
We called the Ronald McDonald house last night and they said our social worker would need to submit the request for a stay in LA. We are keeping our fingers crossed that they will have a room available for us. My Dad is already planning to come down and then my cousin, if we transfer next week Shane will be able to stay with me for the first week before returning to start work. That gives me at least three weeks of support which is so amazing.
We will continue to keep you posted. As soon as we know about a transfer we will post more information. I get the feeling I'll be in LA for at least a month, hopefully I will be home by Thanksgiving.
Love, Shane and Michelle