Tuesday, March 19, 2013

Baby M Update

Thanks for your comments on my recent post about coming to terms with feeding Baby M. Several of you mentioned that she's thriving at home, which made me realize that it's been a while since I've posted an update on her health.

Because, well, she's not thriving.

She's doing okay. We don't have an official diagnosis yet of failure to thrive, but she has gained less than a pound since leaving the hospital nearly eight weeks ago, and babies are supposed to gain around two pounds per month. Moreover, she has lost weight between her last two weigh-ins, and is taking in only half the volume of formula that she should be taking. She has dropped from the 10th percentile (respectable for a preemie) to between the 2nd and 3rd percentile.

It's a complex situation. Due to her severe chronic lung disease, she has to work really hard to eat. Making things more difficult is the fact that we have to thicken her formula to the consistency of honey to keep her from aspirating on it (basically sending it down the wrong pipe and choking on it). That makes it even harder to suck. And then there's her reflux, which is heartbreaking to see - she doesn't spit up that often, but you can tell that the acid is traveling up and down her esophagus and hurting her. She doesn't like to swallow anything from the pain, and frequently screams, fights, or refuses her bottles. She's on meds, and we keep her upright, and we have feeding therapy, and we're trying every remedy under the sun but this is something that we may just have to wait out.

What all of this means is that I am expecting her doctor to recommend supplemental tube feedings, either by nasogastric tube (which goes through her nose) or g-tube (which requires surgery). At the end of February, she was given a few more weeks to turn things around and start gaining weight but since she's now losing weight, I'm not optimistic that we will avoid a tube. We should find out more next week.

Aside from the feeding issues, she is doing well. She's generally cheerful, very smiley, interested in the world. She sleeps well, including through the night. And she's reaching a lot of her milestones for gross and fine motor and social skills. This is one of those things that can be par for the course with preemies, so we're doing everything we can to support her through it, and get through it ourselves.

5 comments:

  1. I'll be thinking about you guys. Its so hard to have a child with medical troubles. You did a great job setting yourselves up for this financially, without even knowing what was ahead!

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  2. That's got to be so hard! You're feeding her for her own good! Perhaps the supplemental feeding will be just the thing to help her over this rough patch. Best of luck.

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  3. I am so sorry you guys have been going through this. I'm thinking about you also and hope you guys can get some answers soon. Baby M does not know how lucky she is but someday, she will.

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  4. Thinking about you, Peanut and Baby M and sending her some good vibes to grow, grow, grow!

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  5. I'm sorry to hear that baby M isn't thriving, that sounds so difficult. But it sounds like you've got a good plan with your doctor, or at least an idea of what might come, and I hope it helps her! Sending all the best wishes!

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Thanks for commenting!