Did I get your attention with that picture? This is how Mila sleeps. If she doesn't sleep like this she stops breathing. If you remember, after our first night together in Ukraine I posted about how Mila stopped breathing several times and it was just a horrible night and she hardly slept at all. It seemed like every time she did fall asleep she stopped breathing and woke herself up. The next night was much better. The only difference? I didn't put a blanket sleeper on her and she was able to contort herself into the position you see above. Mike thought it looked like it hurt so he moved her head back once and she cried :( Then she went right back into "sleep position." It occurred to me that maybe Mila was sleeping like this to keep her airway open, so we just let her sleep like that. She sleeps in this position overnight or for naps. If she falls asleep in the swing or somewhere she can't get into this position she wakes up quickly and isn't able to sleep (probably because she can't breathe). I did take this picture to the pediatrician last week though and she thought maybe her tonsils were obstructing her breathing and she set us up with ENT. As soon as the doctor today saw this picture he perked right up and I got a little worried. He said there is a big fancy name for that position and it typically means that a child's airway is obstructed in some way and this fancy pose is mother nature's way of the child keeping himself alive basically. So when he checked her out and her tonsils were NOT the culprit (only slightly enlarged but nothing huge), I got worried. I asked what it could mean and he said it could mean many things and left it at that. He told me he'd set her up with a specialist at CHP. He had a funny look on his face while examining Mila and I said, "Hard to believe she survived this long with little medical care?" And he said "really hard to believe." Our girl is a miracle and a fighter. And 4 out of 5 people that meet her comment on how strong her grip is! Just an outward sign of her inner strength I guess :)
Within an hour of returning home Children's Hospital in Pittsburgh called to tell us that they could squeeze us in on Tuesday with the airway specialist for an airway evaluation but if her breathing got any worse to take her to the ER. That made me think I must not have grasped how worried the doctor really was at our visit. So Tuesday we head back to Pittsburgh.
I was laughing to myself on the way home thinking how I made a deal with God that we were totally up for adopting a child with Down Syndrome, as long as they had no major medical complications (insert smirk here). We struck that deal when we adopted Zoya. I don't do MAJOR MEDICAL STUFF....well look at us now :) We're doing it! And with God as our guide through it all. Is it scary? Yep. Did I EVER IN A MILLION YEARS see myself here? Nope. Would I rather be doing anything else? No! We've had no choice but to trust God fully and completely....
Which leads me to the next part of this post....a piece of information I haven't yet divulged to the big blog world-or really to many people at all. Prior to meeting Mila we got her medical history. They told us her mother was Hepatitis B positive and that Mila tested positive for it at birth but by 18 months of age she would be negative. It made no sense to me and I started thinking she probably had Hepatitis B (something I knew very little about but now am an expert on). I asked for more information, I asked many questions, all with answers that led me to believe Mila likely had Hep. B. I was pretty worried (Shawn, not so much....I worried enough for both of us I guess). I was worried because I didn't know much about it and because I knew she already had so many health issues. I later found out that Hep. B in an otherwise healthy person is really not a huge worry....but in someone with Mila's health it could be very bad. When we came home on our ten day wait and had the medical records translated, it showed a recent positive Hepatitis B test. The doctor in Pittsburgh initially set us up with a liver specialist (I'm sure there's a fancy name for that) and ordered TONS of blood work. The doctor we'd been working with told me that if she had Hepatitis B it could complicate the surgery...so much so that they might not even be able to do open heart surgery and fix the heart completely until the Hep B was under control. Since we didn't know for sure, we didn't say anything about it to many people. We just kept praying. Fast forward to the day after Thanksgiving, and I get a call from the doctor himself. He was calling to tell me that ALL the tests were NEGATIVE for Hepatitis B (and they did a LOT of tests)! Praise God.
I swear I'm going to have an honorary degree as a doctor soon! So back to Pittsburgh we go Tuesday to see the airway specialist. We should hear tomorrow about a surgery date. I've been busy busy busy following up on "leads" some of you have sent me and researching the heck out of Pulmonary Hypertension and Mila's condition specifically so I know what questions I should be asking.
And as a side note, not one person today who called Mila's name at the doctor's office said it right, so let's review, shall we? LOL. Mila is pronounces like "Mia" but with an "L" stuck in there. Mee-luh, not My-luh (which would be spelled Myla in my opinion) and certainly not Mill-uh. And to the insurance company who thought Mila was a boy based on the name....I didn't see that one coming! Call her what you want but she is my little jelly bean :)
And if you're wondering how I found time to type this blog.....check out my little side kick who just hung out in my lap while I typed.....isn't she great? :) So thankful!