Thursday, March 15, 2012

Update on the little girls.

....I don't think I will ever want to leave home again once we get back there.

Addison had her third contrast enema today at Children's. We had several great radiologists in the room who explained the procedure to me and what they were seeing as we went, which was a nice change of pace. They asked alot of questions about Addison's history, which was nice because I always feel like a procedure like that is so much more helpful when you know what you should be looking for.

First was an x-ray, in a couple different positions. Then, they insert a tube and slowly pump liquid contrast (note to St. V's/U of M Radiology.... no one uses Barium in kids like her anymore because its dangerous when retained! Be glad I didn't know that when she had it in her for weeks when she was only a couple months old..) into the colon and watch it fill. She had several bowel spasms during the procedure and based off the way she was acting, it seems that she's been having them at home as well.

Interestingly enough, the radiology nurse had a 10 year old nephew who just had a stool transplant in Idaho to treat his recurring C-Diff infection. God's way of telling me to push for that? I mean there has literally only been a couple EVER performed on children.... the odds of meeting someone who knows what it is, let alone knows someone whose had it done are extremely rare. Almost impossibly rare.

Just for the record, I would hop on the first plane to Idaho TOMORROW if they'd consider it. (So if you happen to be a gastroenterologist reading this and would perform a stool transplant on my sick little girl, please get ahold of me asap!)

The first one she had at 5 weeks old showed that she very likely had Hirschsprung's disease and that is where this journey started because they viewed what they call a 'transition' zone where the healthy area of colon connects with the affected area. However, upon biopsy after biopsy, it turns out she doesn't have HD.

On this one, I believe they are just looking for extra bowel loops or a physical issue that could explain her problems. We will have the full results tommorow. Tomorrow we have another xray and then we meet with the colorectal surgeon.

She's not sleeping nearly enough and is starting to worry me. Huge circles under her eyes and just acting biligerant sometimes because she's so exahusted. She can't get back to sleep without eating, and its just a huge disaster right now. Adam's been calling her a 'little train wreck' and I have to admit he's right. She's just struggling right now, and being away from home is not helping. I can't wait until we can get back and I can talk to her pediatrician and get some things straightened out.

I haven't updated much the past day or so on Audrina because she is having a hard time and I was holding my breath hoping that it was a one-night thing and not a downward spiral. Audrina began havign severe apnea/bradycardia episodes late tuesday night. She was having a pretty hard time remembering to breathe so they started her on a good dose of caffeine. Last night she had an even harder time, requiring oxygen to get her breathing well again. This is thankfully so far not due to any active infection, it appears to be that she is just tired and her little body is working so hard trying to keep her warm outside of her isolette.

We started oral feedings on Saturday and she's done okay with them, but its progressing slower than her doctors expected. She eats 42mls every 3 hours, which is almost 1.5 ounces. A couple times a day, she is able to take about half of that in a bottle, the rest is all still going in her feeding tube. Their oral feeding protocol is that she has to take 80% of her feedings every day by mouth for 2 days straight and then she can get her feeding tube out. She's taking around 10-15% right now.

Today I got to try and breastfeed her again and she really struggles with the choking/not breathing while nursing, but also was able to get down the most she ever has (a whole ounce). The most important thing she can do is learn to pace herself so she doesn't keep forgetting to breathe.

RSV has grown more and more disturbingly frequent in our NICU. They told me today that they've never had an outbreak this bad ever before. Their measures are getting more and more drastic to prevent the spread even further. It started with them banning kids under age 16. Then they banned all visitors but parents. Next they began telling the nurses to wear gowns and gloves between caring for each baby. Now, today they had to start wearing masks, eye shields and goggles.

Finally, both girls are gaining weight beautifully right now! Addison is up 1.5 pounds in the past 6 weeks due to her diet changes...she is now 18 lbs and rapidly approaching the growth chart again! :)
Miss Audrina is 4 lbs 14 ounces..... right on target for her gestational age of now 34 weeks.


  1. Hugs mama! Wow- I just want to reach across and give you an e-hug! I will be praying for your whole family nightly!

  2. My niece and nephew were both born around 30 weeks but were heavy weights. My sister had steroid shots with my nephew and his only issue was jaundice and anemia. My niece was on a heart and apnea monitor for 7 months and on caffeine and a heart med for 4 months. My nephew is 5 and has no issues and required no EI services. My niece has some learning issues but they are very mild and unless you are her teacher, you would have no idea. I thought I would share!

  3. Love the pictures, they are both adorable! You guys are always in my prayers.

  4. Way to go on the weight gain girls! I hope and will pray for good answers for Addison tomorrow. Praying that Audrina also continues to stay strong and improve every day. I hope you are healing well mama and we will continue to pray for your entire family.