Wednesday, November 30, 2011

Down Another Road....


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!

19 comments:

  1. Her coloring is so much better! Glad to hear she was negative for Hep B. Mila needs nothing else on her plate except getting healthier and getting her sweet little blessed heart fixed.

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  2. I just love this baby girl...I don't know why I have such a soft spot for her since I don't know her or your family but every time I see her picture, it makes me smile so big. When I first saw her pic on the MFFM page, she made me smile but now? My goodness, she is a cutie pie! Both your girls are BTW! Zoya has one of the cutest smiles I have ever seen! I just want you to know that way over here in Arizona, there is a family praying for Mila and is in awe of the miracle that she is! Only God could write a story like this. How can such a tiny package be such a BIG miracle? You are truly blessed for both of your girls, as I'm sure you know! I will continue to pray for Mila's health and for you to have peace of mind as you embark on all these appointments and surgeries. God bless you and your family!


    Samantha

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  3. Amazing how she 'trained' her body to sleep like that. Really - a total miracle!

    And what is really so hard about pronouncing 'Mila'? I don't get it!

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  4. She's BEAUTIFUL!!!
    Sunnie in NC

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  5. Wow her coloring does look great in this picture, it's the first thing I noticed! And I LOVE the hair!

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  6. I can't get over the difference in her appearance since the first pics of her. God is amazing. Is there an outfit this girl doesn't look good in, she wears every color so well. So lucky you are to have two sweet princesses.

    Will be keeping Mila in our prayers as we always do.

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  7. Sofie has that same strawberry butt outfit! I knew why she was sleeping like that right away!!! Keep up the good work super mama!

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  8. Oh my goodness. Sweet angel girl. She's a fighter - just like my Christopher. Fight, Mila! Fight!

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  9. Her is looking so good, especially given all of her medical concerns. Her color looks great and her face has filled out so much!
    Such wonderful news about the Hep B, praise God.

    You're all in my T&Ps as Tuesday approaches!

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  10. Praising God for negative test results! Glad you are researching because you will be Mila's best advocate. She is definitely "great" to just hang out while you blog. I'll bet she knows it is all about her royal sweetness!!!! Praying for God's tender hand of protection to be on her always! (((HUGS)))
    Anne B.

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  11. God keeps proving how good he is and how much of a GODLY family our, keep fighting and loving each day kisses to you all!

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  12. Agree with Elissa - she LOOKS SO MUCH BUTTER! God always knows best!

    Brooke
    www.TheAnnessaFamily.blogspot.com

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  13. I am praying for Mila! She is so perfectly sweet. God knows what He's doing even when we can't see the whole picture. Hang in there through it all! Blessings, Kimberly

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  14. Praying for answers for your daughter. Our 5 month old son, who was born with DS, used to sleep like that. I thought it looked so uncomfortable, but no matter how much we tried to get his head out of that position, before we knew it, he'd have it tipped back at that almost 90 degree angle to his body!

    I haven't read a lot on your blog, but I will just say what we went through w/our son. He is on Zantac for reflux. He did have an NG tube, but it is out. He seemed to tip his head back like that with or without the tube, though. He also had a swallow study done where it was determined he needed a thickened liquid. We are using Simply Thick nectar consistency with him and he has gone from taking 4 oz. in 1-1.5hrs (argh!) to 6.5 oz. in 30 mins! It is amazing the improvement that it has made.

    He no longer tips his head back like that when he sleeps. I do not know if it is the Zantac or the thickened formula. The pediatrician said the head tipping position could because of reflux, it could be because of kids with DS having "floppy airways" which will get better once they are able to have better head and neck control and can sit up.

    Just throwing that all out there to let you know that it may be something simple as with our son and not a bigger problem. I pray that she thrives wonderfully with your family!

    Many blessings and happy holidays!

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  15. Oh! I forgot to mention that our son also had episodes in the hospital where he would desat or stop breathing. It wasn't for very long, but long enough to freak us out. He has had no more problems with that since coming home.

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  16. Love her. She is sooo cute. Still praying for her.

    Katrina
    Carlene's soon to be momma :)
    www.operationorphannomore.blogspot.com

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  17. Keep the good news coming Mama! You know we will all be praying over that surgery as soon as we know the date and time. On one hand I'm a nervous nelly about the whole thing but to think of how hard that little sweeties body is fighting just to survive and the growing it can do once her heart is fixed makes me excited for it to be done and watch her take off and really bloom!

    I think the My-luh pronunciation is because her name is spelled MILA. Thanks to a pop princess the name Miley has gotten really popular with babies the past few years. I have to say I laughed out loud when I read the Mill-uh way, I hope that person had the thick Georgia accent I heard in my head when I said it like that. :)

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  18. I think Mila is looking so much better too. Her coloring looks great, and she has such a light in her eyes. Hope you get some answers on her airway.

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  19. I'm so excited for your family- and I will say that my typically developing child slept like that until we had his tonsils/adenoids out, but he does have a narrow, "floppy" airway, and will resort to that position when he has a cold or anything. FYI, he is VERY susceptible to croup, and has been hospitalized frequently... and he is the healthiest medically fragile kid you've ever seen... CPAP in your future? Perhaps? And I would ask for a pulse-ox monitor.

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