Wednesday, Apr 27 - rocky road today with Maia

Maia's big brother watching over her - I don't know what this feels like but he does. They haven't seen each other since Friday and I can't wait to get the two of them together in real life instead of just a picture. I think the will have a very special bond

Today had a lot of ups and downs. After not feeding Maia from midnight to 8 am to prepare for a possible sedated MRI of her spine and head first thing in the morning, a few emergency pediatric cases took priority and we had to wait until 3. They let us feed her around 11 and that seemed to satisfy her enough to sleep until the 3 pm MRI. I was able to go over to Ryan's mom's house, sleep for 3 hours, take a shower, and change clothes for the first time since Sunday I think? It was a good thing I did because I felt like a new person and ended up needing that energy to cope with the rest of the day.

MRI good news - They were able to get a good picture of Maia's spine and the pediatric neurologist has concluded spinal issue is only related to spinal tethering, which is a relatively easy correction that doesn't require actually touching the spinal cord. Our concern with timing of the procedure was due to the skin issue, which is actually more pressing than the tethering - however her body appears to be healing the skin (it's starting to develop scabbing) so it looks like we will probably be able to hold of on the surgery for a few months. We have not had a formal meeting with the neurologist but looks like that's where it is headed.

MRI bad news - Our poor little sweet girl started having problems breathing while in the MRI. They pulled her out early. Assuming everything was fine I had gone back up to our room to rest while Ryan stayed in the waiting room. He said it ended up being a good thing because it was incredibly traumatizing to see her rushed back up to the PICU (pediatric ICU, similar to the neonatal ICU Josh is in at Saddleback) with a team of doctors surrounding her bed and using a manual pump to breathe for her. We knew reduced capacity to breathe was a possible outcome to the sedation (and almost definitely the outcome to any full anesthesia for surgery, which is why for the surgery breathing tubes would have to be put in), but seeing it is different than hearing it. When Ryan, the nurse, the doctor and the anesthesiologist walked into our room I pretty much stopped breathing too and thought I was going to throw up before they even started talking and telling me what was going on.

To summarize the rest of the day, she also had a slight temperature drop (after maintaining perfect body temperature for 5 days) and what appeared could have been 2 minor seizures. Within 60 seconds of the 2nd seizure they had her hooked up to an EEG to monitor her brain and determine why she was having them, but she hasn't had anymore, so hopefully it was just her body's reaction to coming out of the sedation.

Hopefully the temperature drop and breathing difficulties are just related to the whole procedure as well. It's very possible all these symptoms are just due to stress on her little 5 pound body, which we were somewhat prepared for. In the meantime, instead of holding my little baby and rocking her to sleep right now, she looks like her brother did a few days ago- she's under a heat lamp, on a ventilator and an IV drip, and having her heart rate and brain waves monitored. They are running several lab tests to rule out possible infections (some of her symptoms could indicate infection), the list of which I will not even start to describe here because no use wasting energy on negative things.

We have moved from our pediatric room. There is a small Ronald McDonald House apartment on the CHOC floor, we have a room with a twin bed and access to a really nice kitchen and bathroom. Maia also has her own room in the PICU, with a fold out bed for one of us. So we'll probably alternate sleep tonight, each of us spending a few hours in each place.

It looks like we will be here a little longer than expected.

I am typing this while Maia is getting a 2nd MRI for her head since it wasn't possible to do it the first time around. The head is easier to keep still than the body so they are doing it this time with no sedation and just securing her head. Plus she is exhausted and probably won't even open her eyes for another day.

Apparently these babies were not ready to come yet. Mommy is feeling very badly that her liver wasn't able to hold out long enough to carry them longer. Damn cholestasis.