We have been feeding tube free for 3 days now! Heard back from Chance’s pulmonologist regarding his overnight sleep study and he sated above 90, 80% of the time. It’s ok but not ideal so they said they’ll do another sleep study in 1 month. I kind of figured as much. We will continue to take him off o2 2x a day for a few hours.
Can I just say Jesus’ timing is impeccable?
Ecclesiastes 3:1
For everything there is a season, and a time for every matter under heaven.
As you know, we’ve been struggling very badly with Chance’s lack of eating. No matter what I tried, he just didn’t really want to eat. I did a lot of experimenting over the weekend and narrowed it down: Chance did NOT like the frozen breast milk which I was thawing. The fresh bm I pumped he would drink happily. So, I was like huh?!?! For whatever reason, I texted my primary nurse from Children’s and was explaining our struggle. She said that there’s an enzyme in breast milk called Lipase. Well, when you freeze bm and then thaw it, if you have a high count of Lipase, it alters the taste and smell of the milk. It can make it taste sour and almost rancid smelling. I’ve smelled it and just thought that was how it was supposed to smell. WELL, GUESS NOT!!!! If you pump it and heat it to a scald before freezing it, it helps eliminate that. But, I’m barley pumping enough as it is now. My supply has dwindled to pretty much 0.
So… this was this past Saturday that I narrowed it down and Sunday when I spoke with Chance’s primary nurse. Then, from Sunday afternoon on, I’ve given him freshly pumped bm and formula only. Let me tell you, I’ve been introduced to a whole new baby. He’s not choking, gagging, or refusing to eat. He takes his feeds very happily and can even use a level 1 nipple! We were using a preemie nipple because he was choking on the level 1. I described it when he swallowed like it was as if it burned when it went down. Now I know it was a face of disgust! I mean, who wants to eat something that doesn’t taste good? Not I!
Anyways, I say Jesus’ timing is spot on because this was the week I was planning to schedule his gbutton surgery. He pulled his own tube Monday night before his 9 pm feed. He’s been taking full feeds every single bottle with the exception of the early morning feed when he’s just tired but still taking more than half! I just can’t believe it. It’s almost too simple to be the answer to the puzzle. All this time, ALL THIS STINKING TIME, all the stress, anxiety, discomfort, and everything else you could imagine...it was the taste he didn't like!
I'm still all freaked out almost every feed just cheering and praying him on to take the full feed. I don't really know when that feeling will pass??
Uncle Randy
1st official nap in his big boy bed!
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