Tuesday, January 22, 2013

7a.m.

One episode last night, and it wasn't one of the bad ones thankfully.  She just had to have her oxygen turned up for a few minutes.  Aubrey got a nice bath, and the nurse said she dressed her in a preemie onesie--for the last time.  She said Aubrey's legs were just about to stretch it to the limit.  Her newborn onesies are still sort of big on her--her feet aren't exactly in the footies and the sleeves are too long.  She weighs 5lb 14oz.  Adam and I are meeting with the doctor at 11:30 today.

-Keli

that reflux tastes nasty. :(

5p.m.

Alrighty.  So.  Lots of information today.  The doctor met us at noon and said he had talked to the surgeon's nurse at MCG and they asked for Aubrey's correct name and info, which meant moving her was in the works.  He came back a little while later and said that they wanted to move her to MCG on Friday, do tests to check her reflux on Friday and/or Monday, and the surgery is scheduled for Tuesday (no exact times yet on moving or surgery).  The surgery is called fundoplication, and it involves wrapping a piece of the diaphragm around the esophageal sphincter to tighten the sphincter so the milk/food won't come back up the esophagus.  It's a laparoscopic procedure--just a couple of little holes will be needed--they don't have to cut her open (thank the Lord).  She will also have to have a gastrostomy, which is basically a hole in her side with a tube to the stomach that they can feed her into and that she can "burp" out of (she won't be able to burp out of her esophagus at first because that sphincter will be so tight).  They'll teach her to take a bottle after that, and she'll be able to get rid of the gastrostomy eventually.  Please say a prayer that her episodes hold off until she gets the surgery, that the move and surgery go well, and that the surgery ends the episodes.  She'll have to stay at MCG for them to feed her and monitor her, and she'll come home from there (we had asked about going back to University, but once they move they usually stay at MCG). 

just look at that little belly!

The doctor said that we don't know for sure if the episodes are doing any damage, but he doesn't think so.  However, he called those bad episodes "life threatening events;" if one happened when she was at home with us, there is a good chance we would be doing CPR on her and she could die.  We asked if there could be something I'm eating that is transferred to the milk that could be making the reflux worse, but he said probably not.  He said he's proud of me for sticking with the pumping breast milk--he said he didn't think she would have done as well as she has if she was getting formula (that made me feel good because this whole pumping thing is tough). 

that looks like trouble. ;)

He said that they probably should have talked to us about this earlier, but we had to be aware that, because she was born SO premature, Aubrey is at a high risk to have developmental delays.  We knew that already.  He said that there is no way to know right now how those delays might manifest in the future.  She could be perfectly normal, or have delays that could range from walking and talking later than full-term babies to learning disabilities to cerebral palsy.  We'll take her to work with physical and occupational therapists and do whatever we need to do to help her if or when the time comes.  I can't think about the future yet--I just need her to get over the "life threatening events" and learn to breathe and eat and come home. 


-Keli