Today was a fantastic day in the NICU Bear "A" Pod...Jolene got her cannulas off!!! She was doing great on the latest setting (and sometimes she would adjust her own cannulas and they would be just sitting on top of her nose for a while) so the doctors said go ahead and see how she does without any respiratory support today. She did beautifully! All of her stats remained good today, so barring any huge setbacks of any kind, baby girl is free to breathe on her own. She still loses quite a bit of oxygen when she gets upset but as long as the levels go right back up it's okay. She may also require a little assistance when she eats, but that remains to be determined and really it's not a big deal (at this point). So, another huge step for Jolene!
Now to just work on the feeding. And the weight gain. Jellybean has been losing weight consistently over the last week or so. In fact, she is down to her birth weight. No bueno! The doctors ordered extra calories to be added to her milk, and she is also now getting a multi-vitamin. Kids with CDH often work harder to breathe and circulate their blood and thus burn more calories. Our family already has super high metabolism (and this kid can poop...let me tell you that everything is definitely working in the intestines!), so she's going to definitely need those extra calories. Even after a couple of days with fortified food Jolene continued to drop weight, so we were getting really worried. We have started to think that her body may possibly not be absorbing all of her nutrients, calories, fats, etc. like it needs to. But tonight...tonight she gained back 160g, which is huge! She had been losing 30-45g per day, so this gain makes up for quite a few of those losses. Now, if only she can keep that up!
Jolene tried feeding from a bottle again today and it went marginally well. Not as good as the first day but not as bad as the second day. Just a lot of gagging and spitting up. But we try again tomorrow. And the next day. And every day until she can get the hang of it and her body can tolerate eating normally. She can do this! We have to give her a little pep talk about it before she tries each day. :)
I finished reading a blog about another CDH baby in a hospital just down the street from Jolene today. He has been there for five months already and still has a long, long way to go. So many ups and downs and he is just really struggling to breathe and make big strides. It just reiterated for me how blessed we are and how relieved we are that God's plan for Jolene has included steady progress and a light at the end of the tunnel! If you would, please say some prayers for Baby Luke - he sure could use them.
P.S. Thank you to our friends who came to visit this week and give us words of encouragement and to offer their help...we love to get visitors and share Jolene's great journey! :)
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