Since we were stuck waiting for the ENT for so long, the NICU doctors called in the Speech Language Pathologist (SLP) last week to do an assessment on her to see if they could approve her for trying to feed normally. She did a great job on the suck & swallow while the SLP was holding her, but then had a reflux event that came out of her nose and dropped her vitals. So the SLP advised to wait for the ENT and that she would likely want a barium swallow study done - they let the baby swallow formula with barium so they can see where it goes via x-ray.
Sure enough, that's exactly what the ENT ordered after looking down her throat with an endoscope. The study showed that she had an uncoordinated swallow and in addition to it coming out of her nose, she was also aspirating fluid into her lungs and not coughing it out - what's called a silent aspiration. The end result is that it's not safe for her to feed by mouth and she was going to need surgery for a g-tube.
We knew this was a possibility because the SLP had walked us through all possible outcomes the other day. My favorite outcome is that this g-tube is temporary and some day she will be able to eat cake and waffles and all kinds of yummy things. But until then, this will keep her alive and I am incredibly grateful she was born at a time where issues like these are manageable.
Before they can do the surgery, the surgeons wanted to check her upper GI tract to make sure there were no other issues and the x-rays showed she had an intestinal malrotation. I was 0% surprised by this given the heterotaxy and glad they caught it before it led to a blockage, which can be quite serious. Needless to say, she went from needing a laproscopic procedure to needing a full surgical intervention called the Ladd's procedure.
While I was happy she was going to get the interventions she needed to thrive, I am still dealing with post-pregnancy hormones and not 100% rational. I suddenly had a strong compulsion to get photos of her belly before she has surgery.
So I went home to get accessories and got permission from her nurse to temporarily remove her wires to have an in-room photo shoot of that unblemished little belly I already love kissing. She seemed to love getting her photos taken today, but we'll see how long that lasts!
I was nervous about leaving the leads off for too long, so I only took a few photos before putting them back on. And I brought so many accessories that I took a few extra photos of her just for fun. I am pretty sure she thinks this flowered hat is a bit ridiculous, but she is tolerating it for me. :)
Today is surgery day. As mentally prepared as you think you are, it is incredibly difficult to be calm when they wheel your 10 day old back for surgery. We are the parents that avoided getting tubes put in Thomas' ears over repeated infections because we were so worried about the tiny risks with surgery (and antibiotics always cleared it up).
As we were getting the risk run down from the anesthesiologist, I may have felt panic set in a little bit...
Thankfully the surgery was incredibly short and she was back in her room in less time than we had been told. And I am amazed at how fast she is recovering from it. Obviously she wasn't in great spirits as the anesthesia wore off, but she is now happily snoozing on her mom.
This kid is a tough one!
The slight downside is she is back to having sooooo many IV's again. We have to give her intestines a few days to recover before she can have milk again. But we're making progress into getting this girl ready to go home!