Matthew is four weeks old! In some ways, I can't believe he has only been here for four weeks and in other ways it has flown by. While I know that we are closer than ever to getting to go home, it still feels like something that is far off in the future.
Last Wednesday I finally worked up the courage to ask a question I had been avoiding: Just how long will you keep him in the hospital if his only malfunction is not eating on his own? The doctor told me that she fully expected him to be here for another 2-3 weeks. I wanted to cry. She admitted that it is so hard to see a baby who looks so healthy, and acts completely normal, and think that he needs to be in the hospital for so much longer. She said that many Down syndrome babies can take about a month to learn to eat on their own, and adding in the CDH just adds another complication to that.
As I mentioned in my last post, our lease on our house here is up on June 16. I mentioned that to the doctor and she said we would investigate a transfer to Tulsa if he still needs to be in the hospital working on feeding at that point. I have been working with a social worker over the last week, and we have a transfer to St. John NICU approved, should we need it. We are still hoping that he will get this whole feeding thing figured out between now and then. I want nothing more than to bring Matthew home. But if I can't bring him home, at least I can go home and bring him to Tulsa. There is an end date to our stay in Kansas City, and that helps my mental state tremendously. That has been one of the hardest parts about this journey for me: not knowing when this will be over.
We continued with the two steps forward and one step back that we had been warned about. Matthew had been lingering around 50% oral feeds for over a week. That means that over the course of 24 hours, he would eat about half out of a bottle and be tube-fed the other half. He would have one feeding where he would take 85% and others where he would barely take any. So I finally decided to try a new bottle. The hospital only has a few options, and we had tried all those. I ordered a Nuk bottle on Amazon and brought it up to try on Saturday. He did about the same for me at his 3:00 feed, so I asked the nurse to try it again at 6. When J.P. came back to the hospital for the bedtime bottle he couldn't believe his ears: Matthew drank his whole bottle! His first full bottle!! Maybe this new bottle was the answer to our prayers. Matthew took an entire bottle for J.P. at 9:00 that night too. I felt like a kid on Christmas Eve trying to go to sleep that night. Maybe we will finally be out of here soon!? Matthew took another three full bottles on Sunday. I thought he had it figured out and we had turned a corner. However, since Sunday night he has been in a slump. No more full bottles. I got my hopes up so much, and now I feel so defeated. This little guy CAN take a full bottle. He just seems to get bored with it after about 10-15 minutes. He has everybody stumped with what to do.
Our plan for the week is to keep working on bottles and then re-evaluate at the end of this week. We will decide if we should move forward with the transfer to Tulsa, or go full-steam ahead on getting this guy discharged. If he decides to go back to chugging bottles, we should be good to get out of here sometime next week. If he stays in a slump, he will probably be heading to Tulsa via medical transport. The next three days are so critical in deciding where we go from here.
Throughout this journey we have been overwhelmed with love and support from so many people. J.P. and I frequently talk about how lucky we are to be surrounded by so many wonderful people. We are so excited to bring Matthew home for everyone to meet. Matthew will be arriving in Tulsa within the next two weeks, one way or another. Thank you for all of the love and prayers along the way!
A.J. finally got his chance to hold "Baby Matt"
PS- Check back this weekend for pictures from Matthew's one month photo shoot! He will be one month old on Friday!
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