Thank you all so much for your positive thoughts today! We had an exhausting day – more mentally exhausting than anything else. Leah’s surgery wasn’t until 2PM, but when we arrived at the NICU this morning she was already hooked up to the IVs, and we spent a good part of the late morning and early afternoon trying to soothe her back to sleep because she kept waking up and realizing how very HUNGRY she was. Once it was time for them to take her away, they transferred her into a smaller portable isolette – much like the one in which I first saw her staring up at me. We walked down to the OR area with her and she spent the whole journey so distracted by her new and changing surroundings that she seemed to forget her hunger – until we got downstairs, anyway.
From the time they sent us on our way, it was about two hours before the nurse came out to the waiting room to get us. When we went into the room BabyBug looked so much like she did the day she was born. She has the ventilator, the IVs, the little boxing gloves and snow shoes – everything. On the bright side, this time she is a lot bigger and stronger – and also has more hair and poofier cheeks. She woke up for a little bit and started trying to squirm out of her new gear, so they gave her some more pain meds, which knocked her out again. We left the NICU in the early evening to give her a chance to rest – and as soon as we got back to RMH we both crashed out too, at least for a nap. We just called the NICU to check on Leah and she is still sleeping – and she hasn’t had to have any more pain meds so far. They are slowly starting to wean her off of the ventilator, so we hope by the weekend she will be breathing on her own. The IV nutrition will be in a bit longer as she gets reintroduced to feeding.
And finally, here is the news you have really been waiting for: Yes, they did her contrast study today, and yes, it does appear to be a long gap. They measure the gaps in vertebral bodies rather than cm or inches, and they said her gap spanned about 5 vertebral bodies. It sounded like the pouch on the stomach end was very small – hopefully we will get more details as the days go by, and I am going to ask if we can see the scans. The doctor said 4 or more vertebral bodies would be considered a long gap, so yes, she falls into that category. This means that her surgery will likely be a very complicated ordeal as opposed to a simple repair. We suspected as much, but it was nice to hold out that hope that she might be one of the very few kids with pure EA to have a short gap. Alas. On the bright side, she still has to get to 9-10 lbs, and during that time the gap may or may not shrink – sometimes it does, and sometimes it doesn’t. They will do another contrast study when she gets a bit bigger. But it does sound like we’re looking at a long-gap repair.