Things have been pretty hectic around here, so I’ve fallen behind on pictures. I’m working on a photoblast, I promise!
Just a quick “diary” paragraph and then I promise I’ll get to what you’re really waiting for: the surgeon’s update.
On Leah’s 10-month birthday (March 8), we took her to the pier so she could see her first sunset. She slept through it, of course, but she did wake up in time to see all the pretty colors, and it was her first time seeing the ocean, so that’s pretty cool. That day I also painted her little toenails like ladybugs while she was sleeping. I’ve gotta have my fun, too! The following day we went out to dinner with our dear friend Faith and her family and some friends for her birthday, and LeahBug met her little friends Storm, Cady and Iris for the first time. Miss Cady brought Leah a little ladybug finger puppet. Very sweet. This past week we also visited a bit with Leah’s buddy Ry Ry, his mama Auntie Z (Mama’s BFF), and his dad “Bob.” (Not really, but I couldn’t resist). In the waiting room at OT the other day, we ran into one of Leah’s old NICU roommates and her mommy. I don’t think Leah’s seen so many other kids since she was in NICU! In other news, Leah’s g-tube popped out twice (uneventfully, thankfully), and she continues to make wishful noms when she watches us eat. So sad and yet so cute. And finally, LeahBug experienced (read: slept through) her second earthquake. This one was a bit larger than the last one she didn’t feel; the last one was around 3.0 or so and was in the middle of the day, and this was a 4.4 magnitude rocker at 6:25 AM. Sooner or later she will actually notice an earthquake, but I’m in no rush for a quake large enough to register with her!!
If any of that didn’t make sense, you can blame it on the fact that I was up at 6:25AM looking up the magnitude of the earthquake that woke me up.
Okay – now, what you’ve been waiting for. Yes, Leah is going to have another surgery. She will continue weekly dilations on March 20 and 27, and will go in April 3 for a Nissen fundoplication and a hernia repair.
As it turns out, it appears Leah actually has two hernias: a paraesophageal hiatal hernia (likely a result of her initial esophageal repair), and a Morgagni hernia, a type of congenital diaphragmatic hernia (CDH) that makes up about 2% of all CDH cases (which themselves occur in less than 5 out of every 10,000 births). In this case it’s a lucky thing that Leah has the more rare form. In many cases, congenital diaphragmatic hernias create problems with fetal development, as the intruding organs in the chest cavity can impede lung growth. Overall, CDH has a mortality rate of about 40-62% of live births, the primary reason being that the lungs have not been permitted to develop fully due to the presence of other organs in the chest cavity. So we are very grateful that Leah’s CDH is the type that has a better prognosis.
Nonetheless… it needs to be repaired. I mean… the kid has a loop of colon in her chest cavity. Really.
The big concern right now is Leah’s acid reflux, which appears to be the cause of much of the scar tissue in the esophagus. Leah’s surgeon wants to avoid having to redo the esophageal repair; he said if it didn’t work the first time, that doesn’t bode well for a second repair. He feels that a Nissen fundoplication is the best way to keep her reflux at bay. (Here is a longer and more technical article.) It’s always been on the table as a future option – I just kind of thought the future would be a little bit further down the line. But here it is.
Leah also saw her cardiologist today and he remains confident that Leah does not need heart surgery in the immediate future. He says the jury is still out on whether she will need it in a couple of years. She does have increased blood flow to the lungs, and the VSD has not decreased in size – but it hasn’t increased either. If it doesn’t improve then Leah will need heart surgery eventually. Let’s hope her heart patches itself up! Go BabyBug Heart!
Pictures soon, I promise!