Tuesday, October 29, 2013

Clarity's 5 Month Update

Whoa, I'm how old?!

Little Miss Clarity is exactly 5 months old today and she had her big visit to get an echocardiogram and visit the pulmonary clinic at Children's Hospital. The pulmonary clinic is kind of the CDH clinic where they address all of the questions we and the pediatrician come up with that are rather unique to her condition so we've been counting down the days. Our last visit was almost exactly 2 months ago, when they said we could take her off her oxygen.

The great news is that her echo looked great with almost no indication of pulmonary hypertension, big news to confirm that she's doing great off of oxygen. To officially get off oxygen at night (although she doesn't wear it very often anyway, although she's hooked up to a pulse oximeter all night to I can administer it as needed) we're going to have an overnight room air test soon. The bring a special pulse ox that records the data all night.

They also got an xray and did a couple of blood labs just to get some more current results for her, partially to track progress and partially to have a healthy "before" snapshot in case she gets sick this winter and we need to compare her lung situation to what is normal for her. Knock on wood that we make it through winter without getting sick. She got approved through insurance for the insanely expensive RSV shots from November through March and will get her flu shots. The girls and I live in fairly quiet self-imposed exile at the house so, fingers crossed. The longer we go in her life before she gets a respiratory virus, it will be that much less likely to require hospitalization. We're praying for 2-3 winters ideally.

The big question we were bringing to her appointment was feeding. 
  • She miserably failed a gastric emptying test about a month ago and spits up A LOT. 
  • Her stomach is basically always full to capacity as we strive to get enough calories in her, even with her breastmilk fortified to 26 calories (from 20), which is really as dense as they like to get or it puts too much strain on her intestines. She has been gaining weight but only at 3-4 oz. a week and I couldn't foresee any way to get more food in her as she's been getting bigger. 
  • The gastric emptying test also showed that she's having severe reflux quite a ways up her esophagus, suggesting that her Nissen isn't really doing anything. This could be a good thing with her slow gastic emptying because she could have been in a lot more discomfort if her stomach isn't emptying into her intestines and a tight Nissen was preventing the excess food from coming up. That would have been a lot of pressure in that little tummy. 
  • Some of you also know that she apparently retched enough last week that she got a tear in her esophagus, known as a Mallory Weiss tear, resulting in a trip to urgent care because she was spitting up dried blood and had a whole bunch coming out of her g-tube as well. It hasn't happened again and they put her on Prevacid to hopefully protect her esophagus by making her stomach contents less acidic.
Before we look into a more invasive option, like replacing her g-tube with a gj-tube to deliver some food directly to her small intestines, we've decided to try continuous feeds. She had been getting 3oz. over the course of about 50 minutes (rate of 110ml/hr) every 3 hours. She's now getting 30ml/hr for 20 hours a day with 4 hours off. If that goes well for a couple days, we're going to up it to 35ml/hr; about 23.5oz/day. I need to talk to the feeding therapist to figure out an oral feeding practice schedule with no defined "mealtimes". It's a step farther away from eating like a "normal" baby but if we can keep her growing and not constantly spitting up it's a pretty great trade off.

Oh, the joys of CDH. It's a birth defect that just keeps on giving in so many varied ways. We're awfully lucky though. She's clearly smart as a whip, always looking alertly around her and soaking it all in. Her therapists are also thrilled that she's pretty much meeting her developmental milestones, especially if you consider her adjusted age (born 1 month prematurely). We are so, so thankful. Everything else along the way is small stuff.

1 comment:

Edwards/Jackson said...

Glad to read an update. Lots going on for her these days. She's a gorgeous girl!