Defining "Perfection" (part 2)

So it turns out that having a 40 minute drive is going to be useful for keeping up with emails, updates and checking Facebook posts...and a little bit of sleeping as well :)

So I was finally moved to my recovery room and was about to be dead to the world when my phone rang - and I'm glad I answered it! It was the lead of the transport team calling to let me know that Baby Girl did fantastic on the trip - they didn't have any issues and they had passed her over to get checked in and settled before the doctors came to start testing. I slept a bit more peacefully after that...as peacefully as you can in a hospital after major surgery when everyone and their dog wants to take your temperature and check your blood pressure every 5 minutes! (It felt that way at first, but I am very thankful for the hospital staff in NB - they were amazing! Two of Baby Girl's nurses came by after their shift to see if we'd heard anything and to say how precious she was, and my nurses were amazing as well.) 

The first day (Friday?) was a lot of impatient, uncomfortable waiting. I'm so glad my mom was there to keep me company because she is the most patient person I know and that day I certainly wasn't. My dad had gone with C so every now and then one of them would send a quick update - just talked to doctor, still waiting; genetic counselor came by, they'll be calling you later; she pooped so no bowel obstruction - yay for poop! (It's amazing how small things make such a difference). Dad and C came back around noon - there were no more tests for them to run so now it was just a matter of waiting. Later that afternoon the Neonatologist that had done Baby Girl's initial assessment in NB came by and visited with me. He had just gotten off the phone with the doctors in SA and wanted to make sure I had an update and understood everything the doctor has just called and told me also. And then we just had more waiting. And some more. And some more. And more Saturday. 

So here's where we are at now:

1) the issues we weren't sure about with her hands, feets and neck were all symptoms of a condition called arthrogryposis. In short she has multiple joint conjectures - the joints are fully formed but for one reason or another she isn't able to move them. Since they didn't move during development the skin and / or muscles bunched up and pulled them into the position they are in now (fingers curled in - but all 10 there! - feet and knees pulled in causing her feet to round off on the bottom (the rocker feet) and her neck is shortened which caused the excess skin on her neck (NOT a cystic hygroma!). This is typically caused by either a neurological, muscular or genetic issue. We found out Saturday that hers are not neurological - her brain scan came back perfectly clear (which means there also won't be any residual mental issues, should reach normal intelligence, etc). We're still waiting on the blood work to determine if it's genetic (4-6 weeks); if it is, both Caleb and I will have some testing done. The way I understand it (but haven't talked to the geneticist yet) both parents can have the genetic marker but not show any symptoms, however both parents have to have the marker to pass it along. But that's my interpretation of something I have never studied and am 100% not qualified to draw conclusions about.

2) A lot of her internal organs are displaced, but all are functioning amazingly well. Her doctor told me this morning that she looks at the scans, then at her and how well she's doing, and it just doesn't make sense. I told her we'd been hearing that for the last 5 months from the specialist I was seeing :) Her liver is higher than it should be which caused her heart to be more off centered than it should be (it's almost entirely on the left side) and her right lung did not fully develop (about 25-30% is there). But for a little one with only 1.25 lungs, she's breathing well - they've weaned her from 3 oxygen canisters per day on Friday to 1 today. She still has moments that her breathing is more rapid than they would like, but it's mostly when she gets worked up about something and has trouble calming down. One of the requirements for coming home is that she be able to breathe on her own so we're thrilled with the progress there. The initial concerns from the NB doctor about there being a bowel obstruction came back clear on the scans - and as mentioned before, there had been poop - so that was a quick check off the list. As long as she's there, they will continue to monitor her organs, but there hasn't been any discussion about long term effects. The one they are most concerned about is her diaphragm. The right side is elevated because of all the other organ displacements, but they can't get a clear view of it until she has stabilized enough to transport her downstairs to the machines (they'll also get a closer look at her neck when they do that). It seems to be functioning well, they just want to double check. I think that's all of the organs they've mentioned...

Those were the two biggest concerns - the pre-existing ones and now the new internal ones. I was released from NB Sunday and was in San Antonio as soon as possible. I can not even begin to explain the rush of emotions that I felt when I walked up to her area and saw her sleeping there as peaceful as can be. You can read about the moms who have horrible labors and then as soon as they hold their baby or hear their cry it all disappears and the pain doesn't matter, but until you've experienced seeing your baby for the first the time, you can't possibly understand it (sorry dads - I'm sure you have your own sense of wonderment and awe when you see them for the first time). I had been waiting for almost 60 hours and finally got to feel the relief / wonder / awe / adoration / insert any adjective or feeling word here and it would apply. She was absolutely perfect. I cried for about the first 5 minutes just standing there looking at her. And then she opened both eyes really big and wide and just looked at me and I might have cried for another 5 minutes after that. Then I got to hold her - guess what, I cried again. (In case you haven't figured it out, there is a lot of crying in this paragraph...) We stayed at the hospital with her as late as I could handle it, and then a little bit more because I couldn't bear the thought of putting her down and walking away. When I walked out to the waiting room where C was waiting for me, guess what.... Yeah, I cried again. A lot. And most of the way home.

That's it for now. As we get test results and more good news I'll post it and keep everyone updated. I did make the decision that while I'm here with her, I'm going to be here with her - not checking emails or Facebook or text messages. So please understand I'm not ignoring you, I'm focusing. I'll do my best to get at least one daily update posted in the evening with her progress, and it will more than likely have a few pictures attached :)