So where are we now?

After the long journey of the past couple days there are so many things to write about and so many improvements and challenges that time has slipped away from us and this update is coming essentially a day late.
Because of all that's gone on, I think I'm going to take a less elegant approach to this post and provide a snapshot via list of Aurelia's journey and current situation.

Yesterday, day one of Aurelia's recovery, featured some great strides and a few setbacks, but all in all it was a very good day.
- Aurelia's incision looked good and the amount of blood coming from her chest cavity fell so much that the doctor's removed her drainage tube.
- Similarly, her blood-gas readings progressed to such a point that the doctors removed both her breathing tube (taking her off the respirator) and her sump (leaving her intestines to process all the fluid/nutrients in her stomach.
- In preparation for feedings later in the day the team installed a feeding tube through her left nostril. As a side note, when they removed the breathing tube and suctioned out her nose in advance of inserting her feeding tube the doctor's pulled out more mucus and snot and dried blood than I knew possible. It makes me more than a little sketched out to think about just what is sitting in my sinuses.
- Our first scare came when Aurelia had a wet diaper. As silly as that sounds, Aurelia so hates wet diapers that she worked herself into a fierce frenzy that resulted in a back flow of non-oxygenated blood above her pulmonary artery. This, literally, turned Aurelia blue. As the blood Aurelia needed to oxygenate got clogged above her pulmonary artery her oxygen saturation rate fell precipitously and the team installed a nasal line and forced room air into her lungs at 70% capacity. After about fifteen minutes of actually suffocating her body Aurelia calmed down and over the course of the evening the team dialed back her room oxygen intake to 50% (where it remained until earlier today when it dropped to 40%).
- Our second setback came when Aurelia's fluid intake level became too high. While she did pee (thank God for the pee!), she hadn't had any bowel movements and she wasn't peeing nearly enough. This kept us from starting scheduled feeds and prevented us from doing anything than a mouth treatment, or a coating of the lips and gums with breast milk.

Evening rounds passed without event and when we arrived this morning our current situation two days after the surgery included:
- Aurelia still having too much fluid in her, an x-ray showing hazy lungs, and lasix being ordered for her to compensate her decreased kidney output.
- Two bowel movements (yippee!) putting us back on schedule for feedings to start today.
- Bleeding from her incision (yikes!) that was clearly more than post-operation oozing, but not enough bleeding to cause a change in her vital signs. Still, it was worrisome enough to generate two ultrasounds and an x-ray
- a slight increase in the amount of fluid her kidney processed resulting in only a +100 or so intake from her second day.

Thankfully, we had a good day after those few concerns. Genetic screening (a genome array test) came back and showed no anomalies, meaning that as of now Aurelia and all her problems is simply our beautiful and perfect freak of nature and not the victim of a genetic disorder. Our geneticists are ordering one last test that is the best insurance can buy to see if there are any abnormalities at all that could account for all these problems. This test will take some time to come back, but we are thrilled to know that there is no genetic syndrome at play in our new daughter's struggles.

Additionally, Aurelia had only one real temper tantrum today and she recovered well, meaning that we didn't need to increase the amount of oxygen she received. Similarly, the ultrasound of her head and chest (as well as the x-ray) came back negative, proving that her heart was not bleeding and that there was no fluid build up around her heart or in her heart cavity, or around her lungs. The best guess of the team is that her chest muscles acquired increased blood levels during and after surgery and this is the subsequent squeezing of a sponge; her muscles releasing this blood intake and her incision becoming the natural outlet for the blood.

Dr. Ince also heard bowel sounds during her rounds and because of the two bowel movements we started Aurelia on feeds through her nasal tube. She has had two 5 ml feedings and one 10 ml feeding as of my writing. She will get feeds every three hours or so, barring any complications.

Lastly, Aurelia has had two ENORMOUS diapers, and when we say enormous we mean GARGANTUAN! These things weighed a ton, by all accounts. Or maybe a couple of ounces, but still, it means that she's now really passing that fluid.

Other than that, the medical news is stable and good. She's progressing well and it seems as if the bleeding at her incision has slowed. I'll keep you posted as I learn more and perhaps post a more 'human' reaction to the last several days.

With love,
Charley