Carsten's feeding has perhaps turned the corner.... But we have seen so many momentary signs of progress only to later see a setback. He definitely is closer to taking every feed by bottle. Since last Tuesday at 3 pm, he has taken every bottle feed that he has been given. Still it is every other feed (4 hours apart initially, now scaled back to 3 hours).
At this point (three weeks now), we remain in the hospital to work on and improve his feeding to an acceptable level to go home. What is acceptable? We don't know. Regardless of how much he improves in bottle feeding and his ability to take all of those feeds, we probably will go home with feeding tube equipment. The question will be how much it will be used or will it be available to us if he would need it. Either way, we are ready to go home. I feel like we are in fourth grade waiting for the last month of school to end. Didn't those last few days and weeks seem like forever?
6 comments:
He is getting big! We love getting updates and hope y'all get to go home soon!
Eat little man! Eat!
He is just sooo cute!
Letha
We can identify with how hard it is to be in that place where each day seems like two steps forward, one step back. Being in the NICU/nursery is so difficult. But, rest assured that Carsten will come home soon and you'll look back at that time as a distant memory. It also makes being up all night a true blessing because he is in YOUR home :)
We are praying for you all.
Love,
Hannah, David, and Ethan
My husband Chris and I met you at the Down's syndrome conference in Little Rock. Our little girl's name is Ali. What a precious baby boy you have been blessed with!! We are praying for you.
Chad & Kari,
It has been awhile since you have posted, so I hope eveyone is home and doing great! Stacy, Sawyer, Walker, Sunny, and I are all praying for little Carsten. He is so cute! You guys are awesome!
Love,
The Shankle's
Some encouragment for you all! Things get better. He will eat!!!
My dear friends are only about 5-6 months ahead of you in this same journey. Their baby boy was born 5 weeks early in February (placental abruption led to an emergency c-section). They discovered he had Downs at birth. They put on their game faces and headed over to ACH. They were there for 103 days. They had multiple complications (although Baby Elliot did not have a heart defect). But, praise God, he is home now (they sent him home on a feeding tube w/ oxygen). He got off the feeding tube about a month and a half ago, and is completely bottle fed. He still has oxygen but his parents don't think he needs it. He is awaiting one more surgery (for Hirschsprung's--no nerves in part of his colon). They moved from Conway back to Tulsa (where we're at!), and he is on a waiting list for one of the best therapy schools around, The Little Lighthouse (it is Christian too). If you'd like to connect with them for some moral support and encouragement, you can check out their blog at http://www.xanga.com/mercker444.
I hope you guys know you are loved and prayed for. Carsten is going to do great. He's so precious.
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