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!

Monday, November 28, 2011

Mila's Homecoming at the Airport!

Snug as a Bug waiting to board our flight from Munich to D.C.


We ran into Shelly (Carrington's Mama) in Kiev and had the same flight into Munich and had some expensive waters together while waiting for our connecting flights.



I was already crying and then I saw my Grandma, who I did not expect to be at the airport and I lost it! I knew she had to be the first one to hold Mila. My Grandpa would have loved Zoya and Mila. I know he was there in spirit.


I hadn't even noticed the bunch of people sitting off to the side smiling until I looked at these pictures!







The Lindahls made the drive to share our special moment :)


Our fabulous friends The Sheldons

Mike the Great (my travel buddy) and his wife, Carol




Saturday, November 26, 2011

First Giggles!!!!

We've been having so much fun around here that Mila decided to let us hear her first giggle!! Daddy, Zoya, myself, Grandma and Grandpa P., Bub, Grandma B. and Aunt Stacey all happened to be here when Mila broke out in giggles. I caught the end of her giggling because she spotted the camera...smart little girl!

I'm keeping this blog open through Mila's surgery and recovery, but all family things I'll be posting on the other blog ANGEL EYES. I will post updates just about Mila here for a bit longer, but make sure you're a follower on my other blog because I'll be posting most things there :)

Wednesday, November 23, 2011

Mila, Mila, Mila!

Mila has been doing great overall since we got home. Since being home, she has learned to roll over! She hated any time I'd put her on her tummy in the beginning but now she loves it and rolls to her tummy to take a look around quite often. I can't believe how well she is holding her head up! She even tried to get on her knees by scootching her butt up today...it was awesome! She is coming to life before our eyes. She is so aware of all around her, she is smiling much more, and figuring out that she should sleep at night (sort of) LOL.

Here is a video of our jelly bean rolling over:

Nothing like sleeping in the arms of you very own Daddy!

This beautiful photo was taken at 2 A.M.!!! She was partying it up! That smile says, "I'm not going to sleep!" LOL

Girl loves a mirror just like her sister!













(There are more pics of the sisters on Zoya's Blog)

Mila's Day in Pittsburgh

It was a very long day. We left the house at 9:30am and got back at 8:45pm. Mila did fabulous and was cooperative most of the time ;) Our appointments went like this:

12:30: Swallow Study
1:30: Consult with Speech Therapist about Aspiration/how to thicken feeds
2:00: Cardiology Physician Apt. and EKG/ECHO in Cardiology
3:00: Cardiologist Apt. to discuss results
4:30: Bloodwork (7 vials :( )
5:30: Chest X-Ray (ordered by cardio to get a better idea of degree of pulmonary hypertension)

So as you can see we started with the swallow study which Mila HATED. She had to sit in a feeding chair and drink her bottle. I thought she'd be starved. Well she wasn't digging the barium I guess and just wanted Mama to pick her up! Then they kept trying different thicknesses and nipples and my baby just wanted to eat without all the fuss! They determined that she is likely aspirating on thin liquids (as I suspected). They didn't see any huge aspirations during the study but saw thin liquids starting to go into her lungs but coming back up and correcting itself. The woman said she was positive that througout an entire feed, and when Mila actually drinks more than a few sips, she is aspirating. So we are now thickening her milk just a tiny bit, nothing huge. We mix 2 Tbsp. of rice cereal in with her 4 oz. of formula. She does MUCH better and there isn't nearly the amount of coughing we were seeing.

Next for all the big appointments...the heart stuff. Mila was great for her EKG and ECHO! Such a good girl! We sat nervously waiting for the Cardiologist. A nurse came in and took her pulse ox and it dipped as low as 72, and was as high as 92 (normal should be at least 94).  He finally came in with the PA and an intern and had a funny look on his face. He just stood there for a moment not saying anything and my heart sank. Sometimes you can just read people's thoughts without any words being said. He started by saying, "You know she has a large VSD and pulmonary hypertension." And I explained that we didn't know the size of the VSD but had been told that was likely the heart defect. He said that most babies in her condition would need surgery by 3 months old to survive. Gulp. Then he looked us right in the eye and in a very serious tone said, "I need to tell you that the pulmonary hypertension makes this procedure much riskier." Gulp. He said he would have to talk with his colleauges that will be doing the surgery to make sure they feel comfortable operating with the PH, but that this really is her only option. We talked a little about oxyen and how it wouldn't help at all, and that it could actually make the pulmonary hypertension worse. (See below for explanation of PH and VSD). He also said that it's possible the PH is primary and will not resolve after the surgery, but we are praying our hearts out that it is secondary PH and will slowly resolve itself once her heart is fixed. He wanted a bunch of bloodwork to go with the other findings. Their team of doctors will discuss Mila's case and likely call us next week with a surgery date. It could be as soon as 2 weeks away or as far out as 6 weeks. But he was positive that this needs to be dealt with in a somewhat urgent matter. He said her hospital stay will be longer than most typical OHS cases and told us to count on at least a 7 day stay if all goes SUPER. He is keeping her on all three medications for now (Digoxin, Captopril, and Verospiron). He is unsure if the team will want to do a cardiac catheterization to get a clearer picture of the extent of damage before surgery. We should hear from them a week from today.

Honestly it was like a punch in the gut. His words almost took the wind out of me. Yes, yes, yes, we KNEW she was going to need surgery, we knew all of her health needs, we signed up for this, yes we sure did. We knew her condition was serious, yes we did. BUT once she nestled into our hearts as our daughter, this all became much more difficult to grasp. To actually hear the words made it real. We were still holding onto hope that she wouldn't need surgery...that would've been a miracle. We hadn't let ourselves go there because we had to take one step at a time and our first mission was to get her home.  Now we can focus on getting her healthy.  Yesterday was the first day I let any of these worries penetrate my thoughts.  It stung.  I cannot imagine handing my sweet baby over for open heart surgery. I know many have done it (and probably some of you reading this are heart moms who've been there done that), but I still just can't imagine the strength it will take to hand her over. The complete and utter reliance on people you don't even know to save your baby's life, which is why we must completely rely on God who can work through those surgeons to fix Mila's heart. We appreciate your BIG prayers. We've seen many miracles with Mila and we're counting on the biggest one yet!

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Definitions of heart terms:

Ventricular Septal Defect (VSD): A hole in the septum (the wall) between the lower chambers of the heart (the ventricles). A VSD lets blood from the left ventricle (where it is under relatively high pressure) shunt into the right ventricle which has to do extra work to handle the additional blood, may have trouble keeping up with the load, enlarge, and fail. The lungs receive too much blood under too great pressure, the arterioles (small arteries) in the lungs thicken up in response, and permanent vascular damage can be done to the lungs. With a large VSD (usually one greater than 1.0 square cm in area), there is a significant shunt into the right ventricle, excessive blood flow into the lungs, and pulmonary hypertension. Symptoms this is causing Mila: shortness of breath, rapid breathing, fast heart rate, possibly the cause of the plumonary hypertension (hopefully). VSD is the most common congenital heart defect and when not paired with pulmonary hypertension is usually a fairly "easy" fix.

Pulmonary Hypertension: The arteries that carry blood from the heart to the lungs become narrow. This makes it hard for blood to flow freely through the vesself. Because of this, the blood pressure in these arteries rises way above normal levels. The high pressure strains the right ventricle of the heart, which causes it to expand in size. The heart works too hard and becomes enlarged and gradually weakens and is at some point no longer able to pump enough blood to the lungs. This can lead to heart failure.

As you can see the pumonary hypertension is our big concern. PH can be primary (existing on it's own without being caused by a heart defect) or secondary (caused by the heart defect). We are praying Mila's PH is secondary because that would mean it can be fixed. If it is primary that means it will not go away even once the heart is repaired.

And on a good note I figured out how to get her to sleep more through the night: take her to the hospital and torture her with test all day long! ;)

Thanks for all your prayers. Please continue covering Mila in prayer as this surgery will be here before we know it. If any of you are heart mama's who've dealth with pulmonary hypertension going into surgery, please contact me (spbasile at gmail dot com). Thanks.


Monday, November 21, 2011

Grow Baby Grow!!!!

I took Mila to the pediatrician today and I couldn't believe my own eyes when I put her on that scale.
11 pounds, 5 ounces!!!!!!!!!!
That means she gained FOUR POUNDS since we met her (5 weeks ago).
23 3/4 inches!!!!!!!!
That means she grew almost TWO INCHES since we met her!!

The only thing we gave her different was LOVE.
That's it.
In fact she is still on the same formula she was on in Ukraine.
Love is pretty darn powerful my friends.
She found a reason to fight!
God is good.
I still almost can't even believe how much she's grown and I'm seeing it with my own eyes.
Front row seats to the most beautiful flower blossoming right before my very eyes.
I stand in awe.


Sunday, November 20, 2011

MILA IS HOME!

I have a quick second because both my angels are napping AT THE SAME TIME. I know, this will likely not ever happen again! Out of everything that needs to be done, I know so many of you are waiting on an update. So many of you prayed us through and we couldn't have done it without you, so this is the least I could do.

Mila was SUPER FABULOUS the entire journey home. She slept 85% of the time!!! We had bulkhead seats on our long flight which made it so much nicer (a whole separate post about our seatmates who were just amazingly sweet). She only cried once on the long flight and it was a screeching cry for only a few minutes, but I think that wasn't her fault :) She only showed signs of distress once, as we were exactly half way over the Atlantic Ocean...the worst place to be! I was holding her and looked down and noticed her color had changed and looked pretty awful. Her face was very pale and a little greyish-bluish. Mike checked her fingers and they were purple. My heart started racing and I felt a huge knot in my stomach. Even though Mike is a cool cucumber I knew he was nervous too. I prayed so hard right in that moment. He counted her breaths and took her pulse and the numbers were a little lower what they had been typically, and we could both tell that her heart rhythm was different. We had gotten used to feeling her heart rhythm and knew it was definitely beating in a different rhythm. Then she started crying and was very upset, which I took as a good sign that she could actually cry. I picked her up and walked her around and after she cried her heart out she seemed to be returning to normal. Her color returned, her fingers were still purplish for a little bit longer, but her heart rhythm had returned to normal and her pulse was back up to where it had usually been. But it scared the crap out of me! We were exhausted as I had only gotten about 2-3 hours of sleep for the past three nights, but after this happened, I had enough adrenaline to get me home!

When we landed in D.C. what happened was amazing. Our incoming flight was late and we only had 1 hour and 20 minutes to clear customs, passport control/secondary inspection, security and book it across the airport from the furthest point possible. We got off the plane and the passport line was SUPER long, but it was moving at a decent speed. They told us which line to go in and thank God we were given the nicest officer! At this point we only had an hour and I kept thinking when we did this with Zoya we were in secondary inspection for at least an hour.  The woman looked up and said, "I'm not going to make you go to secondary inspection, I'll just stamp her passport right here and do the paperwork over my break, I don't like to make babies wait." Ummm seriously???? This in itself was a miracle. We thanked her over and over and she just smiled. I thought Mike was going to kiss her but he didn't. We then waited in another long line to reclaim and recheck our checked baggage. Then there was another line to check passports and they let us through without having them checked. We had just enough time to make it to the other side of the airport and when we got to our gate they were boarding within 5 minutes of our arrival.  There is no way we would have made it had that nice woman not let us go through.

I have never in my entire life felt so covered in prayer. I just had a sense of peace the entire journey home (except for our one scare). I felt like we were walking on sunshine. It honestly felt like we were just soaring.  It was so surreal how well everything was going.  I know all of your prayers made our entire trip so smooth. It was super fast (6 days including travel!) and all went exactly as planned. I could feel with every ounce of my being that higher power carrying us through.

Mila was so exhausted all day yesterday, I think the lack of sleep finally caught up with her. We came home to a super welcome home from some friends and family. It was so emotional to finally be HOME with my WHOLE family. I will post another post when I have time with airport pictures :) She slept most of the way home from the airport and then my fabulous husband took over for the night. I got 8 uninterrupted hours of sleep and I'm finally feeling somewhat human today. Mila sleeps about 4 hours at a time and then wakes up to eat, and usually goes back to sleep for another hour or two if we're lucky. She catnaps throughout the day. I'm hoping her schedule normalizes soon, but until we have a better idea of what's going on with her heart, we aren't too worried about a schedule. We're letting her sleep whenever she wants and however long she wants and eat whenever she is hungry. She is only taking about 4 ounces at a time every 2 hours or so. She coughs a lot after she eats which worries me a bit. I switched nipples and she seems to be doing a little better with that. She is very stuffy and has a cough in addition to the feeding time cough, but overall seems to be doing very well considering everything. We have cardiology appointments in Pittsburgh on Tuesday. We debated taking her to be seen today but decided to just keep an eye on things. I know she needs this time home with us and time to settle just as much as she needs medical care. So now the plan is to spend today and tomorrow loving on her and Tuesday to Pittsburgh.

I honestly can't even believe the changes we've seen in her. It brings me to tears when I look at the pictures of our first couple weeks together and then I look at her in my arms. God is good. He has used, and will continue to use, Mila's story to touch so many hearts. I have so many things to blog about and one of those is how Mila has changed hearts in Ukraine and how others there have truly learned for the first time that love can give life to a child with Down Syndrome, in spite of their beliefs that children with down syndrome will never have any quality to their life and the belief that there is nothing that can be done to help a child with DS. Hearts are changing. It is beautiful to be a part of.

Just a couple pictures for now....

Our driver, Nico and his wife. Nico is a driver for RR families, but to us he is so much more.
We have come to love him, and I love how he looks so proud in this picture!
He is a very interesting man whose heart is also changing!

Basile, Family of 4!!!! Woooot!

 Thank you again for all of your love, support, comments, and prayers. We are so blessed to have every single one of you cheering us on!

More pictures to come, I promise, as soon as I get a few other thing done :)

Friday, November 18, 2011

A Visa and A Bath!

We have Mila's visa in hand and are scheduled to fly out TOMORROW MORNING! The computers were working wonderfully...an answer to prayer!  Eldon at Golden Rule travel is super fabulous and got us GREAT and cheap tickets into Buffalo. We will land at 6:27pm! Although I'm sad we won't have a big group of greeters this time since we're not flying into our hometown airport, I know it's in Mila's best interest to go this route :) Mila will officially become a U.S. citizen when we touch down in DC! Woooot!

Playing with Mama


Mila's temporary bed :)

Mila had her first bath tonight. She is mostly a pretty calm baby, but girl can throw a tantrum when she wants to be picked up! Pounding fists and all. So my prediction was, because she is a drama queen in training, she would hate her bath. Mike thought she would like it. Mike was right. She was so calm during the bath and I just got a kick out of her hair!







LOVE LOVE LOVE this hair :)

Seriously her hair is growing at a very rapid pace!!!




NEXT POST WILL BE FROM AMERICA!!!!