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Tuesday, June 15, 2010

Updates Galore

She might look like a Knickerbocker, but she sleeps like a Farr

I feel like for the past few weeks we've done nothing but watch Charlotte Amalie get bigger. And suddenly, this week, BAM-- a million things to check and work out before she can get ready to get ready to come home (there's a lot of preparation involved here:))

Eyes: Charlotte had her eye exam today and the verdict is: wait and see. Her eyes are "stable" meaning, there has not been any significant progression or regression of the ROP from last week. We'll wait another week and see what her eyes look like then.

Lungs: Charlotte's been pretty constant on her oxygen demand, but after some days of heavy spitting, she went up a few notches on her O's. The doctor following her this week was concerned that she might be aspirating some of the spit-up and ran an X-Ray today. Sure enough, the right lung looked gunky (that's a medical term, for sure). They are changing the way she is getting fed, and hoping that with this change in feeding style, her lungs will heal more rapidly and she'll be able to move to high-flow nasal cannula. It's a gradual healing, of course, so her doctor is hoping that sometime next week they'll do another X-Ray and it will look better. And a week after that, they'll hopefully be able to move to nasal cannula.


Slow and steady wins the race, right?

Feedings: Charlotte is having an ND tube (nasoduodenal) placed today. An ND goes in through her mouth (or nose), down the esophagus, past her stomach, and past the first bend in the intestines. This removes all chances of her regurgitating her feeds and lowering her chance of aspiration. This is also going to make it more interesting to get her ready to come home, seeing as she has to be orally fed to come home, and oral feeding risks aspiration, but we'll cross that bridge when we get to it. ND feedings are done continuously, so she'll be getting 14.5 mL/hour and the doctor is hoping that by bypassing the stomach, she'll eventually be able to take in more volume. They'll also be checking the pH of her stomach content daily to see how much acid she is producing. If it is *really* acidic, they'll start her on Prilosec or something to that effect.

Vocal Chords: You might remember that when Charlotte Amalie had her PDA Ligation, one of the risks was damaging the recurrent laryngeal nerve (EDIT: previously posted as phrenic nerve-- Apparently I need a few more courses in A&P). Since she couldn't make noise at that point regardless, we weren't watching for anything. But she still hasn't developed a "voice", more of a raspy whisper. There are many reasons for this, not the least of which is the fact that for 15 weeks she's had a tube down her throat of one kind or another. Regardless, they will be checking her vocal chords in the next few weeks to rule out other possibilities, such as the phrentic nerve or acid reflux. She'll be evaluated by a speech therapist while eating so they can determine what damage has been done and how much is reversible. Might be a lot, might be nothing.


Can you tell how much I love this state of limbo? :)

Heart: Probably due to the aspiration of spit-up, Charlotte's resting heart rate has been higher again (around 180's-190's). A routine Echo was done yesterday to check for stiffening of the right side of the heart muscle. Sometimes, because of long-term oxygen needs, the heart muscle stiffens and it can cause pulmonary hypertension. This echo was totally routine, not because they were worried about anything, and we should get the results back in a few days.

Misc: Since Charlotte is still on the CPAP, her belly becomes full of air pretty frequently. She can't burp yet, so usually her stomach is "vented" after a feeding by attaching an open tube to her NG tube and allowing air from her stomach to exit through the tube. Since her ND tube (through which she will be getting continuous feedings) does not vent the stomach, Charlotte will have one ND tube (for food, goes past the stomach into the intestines) and one NG tube (for venting, goes into the stomach). This situation will hopefully be resolved once she goes on high-flow nasal cannula.

If you made it this far, congrats. You win :)


  1. wow! lots of updates. good good. glad to hear there is still progress, for sure. as for the raspy voice.... jj had the PDA surgery and they had the same concerns. jaylee didn't 'cry' for almost a year. literally it was like a static sound, we had to power up the baby monitor to listen for even a small sound cause we literally could not hear her cry. they blamed it on floppy trachea and esophagus from being on the vent for nearly 2.5 months. that eventually firmed up and she can now scream with the best of them. ;)

  2. (Hi there, another friend of Hilary's, I've been reading yours for a little while now...)
    She sure is going through a lot right now! You'll have to keep posting so we can all see her when she's two years old and running around screaming and laughing and you'll think, "Were we ever really worried about damage to her vocal chords?"

  3. Amanda-- I remember being where you are, days from your due date, sitting in limbo land, no longer fighting for her life but watching, worrying and wondering about her development... these are the longest days to come unfortunately. Hang in there and know that there are so many people pulling for Charlotte and your family who want to support you in any way they can. Do some extra long kangarooing and let yourself dream about the days when your baby will be sleeping on your chest at home while her big brother decides that there is room for both of them on your lap. I never thought we would get there but we did eventually. As the nurses used to tell me, they don't offer kindergarten in the NICU. One of the things that used to help me when I was feeling like we were there forever was to pull out that TEENY TINY diaper from day 1 and realize that I couldn't even really imagine that she was small enough to have worn it ever!