Alex and Rory: Good direction

So yesterday was scary but Rory was looking much better when we left. Today was reassuring, but she is in the NICU, and we know that anything can happen but things are looking much better. Overnight she was doing very well and they actually took her off the ventilator in the early morning and she's been doing great with a little humidified oxygen in the nose.

She did get a transfusion of platelets, she continues on broad spectrum antibiotics, rectal washes (to continue decompressing her gut from below), she still has the sump (to decompress from above), she still has all the monitors and IVs, still requires feeding through her veins and they are still monitoring her clotting BUT things are heading in the right direction.

She looks better, too - we heard her cry for the first time since she was 24 hours old, she had several periods where she had her eyes open for a while- it was so nice to be able to see her looking stronger and less lethargic.

Her biopsy results confirms the diagnosis of Hirschsprung's disease.

We met the surgeon who has been working with Hirschsprung's kids for fifteen years- he spent quite a bit of time with us discussing the disease, the process things need to take place, the surgical possibilities and the different possible outcomes. He reviewed Rory's films, explained her findings and what the implications were. Overall we really liked him. He believes that her infection is related to her gut (called it enterocolitis).

We also met the nurse who works with him (and all of the pediatric surgeons who take care of Hirschsprung's kids) and she went over home care prior to surgery and will be going over it all with us to make sure we know what we're doing when the time comes for Rory to go home. (We loved hearing that... WHEN she goes home). It will still be at least a week (the estimate given to us by the case manager). Rory needs to be eating and we need to be able to handle her home care.

Then after a few weeks she would have the corrective surgery. The hope is that it can be the one-step surgery rather than several surgeries over the course of time. There will be a lot of post-operative care - the surgeon told us he was committing to us and Rory until she turned 18 and he needed us to commit to bringing her for all of her follow-ups. Said during toddlerhood and potty training they would work closely with us - it was overall very reassuring.

So, while we are feeling much better about everything and looking forward to being able to hold her again and bring her home, we are also aware that things can change.

Alex is doing GREAT- being home in the evening and when he wakes up seems to work well. We had a great time playing- he played with two baby figures and was putting them to be, feeding them and such. Did some singing and dancing- overall just being his wonderful sweet self. He had a great time with Aliza and Emmitt this morning and was excited to have seen Tess again. He told us several times that he's going to see Tess again tomorrow at the library. He definitely misses his friends and asks to see them. We are looking forward to seeing everyone when they are all back from their holidays.

Fuzzy head- she looks like a little bird. 8)