When we were in Maine, Moira became sick. She was unwell enough that we had her taken to the ER by ambulance (a $2000 venture that we are STILL working out with our health insurance) where she was given a chest x-ray to rule out more serious lung conditions. She was diagnosed with croup and we were sent on our merry Prednisoned way, poorer and more tired but wiser.
The next morning we got a call from the hospital. The x-ray had turned up an unrelated condition: a portion of Moira’s intestine was pushing into her lung cavity through a hole in her diaphragm, a condition called a congenital diaphragmatic hernia. We would need a copy of the x-ray to take home with us and to consult a specialist promptly.
My upper body didn’t literally collapse into my stomach, obviously, but if I had to guess what that feels like I think the feeling I experienced was close. It wasn’t until after we came home and saw our doctor here that Tom even accepted that there was a problem; he chose to believe that the scan was misinterpreted.
This week we begin the grind of specialist appointments to determine next steps. Moira is one of the rare 2% of cases that are asymptomatic, but is still at risk for a strangulated intestine (think of a garden hose with a kink in it). It didn’t show up on her 20-week ultrasound as it does in most cases; if it had been the 98% type, we would have had a hospital birth and she would have likely needed surgery at birth to be able to breathe. We are lucky. She is lucky.
The Big Thing now is that we may be starting to see symptoms of a problem. There’s just nothing we can do anymore to make Moira more comfortable at night. She sleeps so poorly. She can’t lie on her back at all and digestion seems difficult for her. It’s awful for her, but she is so happy by day. It’s amazing how happy and smiley Moira is. It makes us forget that she went from sleeping normally as a newborn to a child that is up every hour or two. We can’t be sure that’s related to the hernia, but I can’t imagine that’s helping.
We really just want her to be well and happy. My sleepy little bear is so good-natured and cuddly by day but at night it becomes a constant battle for her to rest. This will pass, like anything else. I’m just worried that the only solution is surgery; Moira is so active that I can’t believe they wouldn’t have to sedate her for a while so she could heal.
We will start getting answers this week. In the meantime I’m tapping this out while Moira sleeps semi-upright in my lap for a brief pre-dinner rest and hoping to complete just one REM cycle tonight. At least I get to enjoy the snuggles in the meantime.