Friday evening

Well, lo and behold, there was excessive fluid in her belly. Thank goodness they finally gave in and did the US exam like we had begged them to do last night. We had been told they were going to do it last night (would be done after we had left for the night), but they didn't end up doing it- this morning, her belly girth was larger, and they finally arranged for the evaluation. Got another drain in and so far they've gotten off about 300-350ml though the day. Thank god. They've restarted her feeds at a reduced rate, since there has only been one major poop since her surgery date 12 days ago. She was doing well through the day, and we were watching her peek pressure slowly rising on her ventilator. Seemed somewhat harmless and somewhat responsive to sedation or stress. The tube placement has been an ongoing issue as well, and we've been very concerned about it being in a different place than when they came out of the OR on Wednesday. It's near impossible for it to not be moved at all, even though we've stopped intentionally repositioning her in the bed. Around 3:15pm, the doctor and the respiratory therapist were looking at it to try to fix it back to optimum, and when they moved her head, all of a sudden there was air leaking around the tube and coming out her nose and mouth instead of down into her lungs. It was terrifying- they were trying to bag her and her chest wasn't rising at all. I couldn't watch, so I don't know exactly what was done. They managed to get her back to stable and her O2 saturation was responding well despite the apparent lack of ventilation. They had several doctors in with her and got the scope to the room to allow repositioning of the ET. In checking her out inside, they thought they saw a flap of tissue like granulation tissue that was acting as a ball valve at the end of the ET. They were going to let the ENT doctor take a look and use the rigid scope to be able to use forceps to explore it and possibly remove it, and they have a laser that could cauterize it to stop bleeding. When they were looking with him though, they didn't see the same tissue. So they just replaced the ET in the ideal spot and actually sutured it to her gums and around two of her teeth in addition to significant taping to secure it. They think we only have 1-2mm of leeway before the tube will no longer be in an ideal location, so we have to be extreeeeeemely careful- even just a bump into her bed makes her jiggle enough to be worrisome. For now she looks great and all her numbers are pretty much ideal, and we just need to ride it out for a few days before reevaluating her airway again. I have a feeling there will be some sleepless nights ahead.

For Gretta's sake- we'll update on her too- she was evaluated by the wife of Emma Kate's attending doctor, who also happens to be a pediatrician. She's doing perfectly well and setting records for weight gain- she's up to 8lbs 5.5oz, before we know it she will outweigh Emma Kate!