Sleeping Peacefully
Today, Caleb turned six weeks old. He spent nearly the whole day sleeping peacefully. He was much less fussy and crabby today. The nurses and nurse practioners think that he has probably been uncomfortable due to the intestinal issues.
Everyone seems to think that the intestinal problem was caught in time and no harm was done. That is great news. They think that perhaps his intestines were not getting adequate oxygen as a result of the large amount of blood going through the shunt.
There is not a lot of optimism for Caleb coming home before his second surgery. Right now, the plan is to rest and grow. He will stay on the high flow air, IV blood pressure medicine and maybe the IV diuretics. The nurse practioner thinks that with this support, we can keep him in his "happy place". In his "happy place", the high flow air forces some of the extra blood from his big shunt out of his lungs and makes it easier for him to breathe. When it is easier for him to breathe, his heart does not have to work so hard. When his body does not have to fight so hard just to breathe and pump his blood, the calories that he was previously using just to survive can now be used to grow.
Luckily, the TPN and lipids (the nutrition he is receiving until next week) are sufficient to allow growth. So although he is not on breast milk right now, he can hopefully start growing and we are not wasting this week waiting.
For now, Caleb and I (or Phil) hang out when he is awake. We talk, sing, read stories and watch Jeopardy. We are trying to give him the stimulation that he would have if he were a healthy baby. We are also trying to enjoy his baby time so we don't miss out. If we have to do this in Ann Arbor for a while longer, we will do it. Hopefully, in a couple of months, we have have a "healthy" baby at home, thriving with the love of his family and going cross-eyed from a brother and two sisters in his face all of the time. Thoughts of his first months will be a reminder of how lucky we are to have him!
Jen - thanks so much for the updates! one thing - you may have missed your "calling"! ... articulating the problems with current prognosis - questions and answers - to the hope of future days - all strengthen me!! and I am not sick! - nor am I carrying the heavy load that you and Phil & the "Big Three" are carrying. Amazing! God is with you!
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Thank you for the update - we've been heavy hearted praying and thinking of you all - but as you referred to, these months will seem only a blip, even though they seem insurmountable right now, when Caleb is home and healthy. Love you all - looking forward to more restful days ahead for baby boy.
ReplyDeleteBeth
They say God doesn't give us more than we can handle. I think your household is handling this with strength and grace. He's so beautiful. Thanks for your meaningful updates.
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