Wednesday, November 23, 2011

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.


12 comments:

  1. Praying for sweet Mila and family.

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  2. GOD is able!!! While this news seems to shatter our spirits and sounds so insurmountable, GOD is able. We will be in deep unceasing prayer with you, for God's perfect will in Mila's life. Her greatest testimony so far is her will to survive and thrive as evidenced by her enourmous growth spurt since she has had a mommy and daddy to love her. We will hold tight to our trust in the Father who first loved Mila!!! (((GREAT BIG HUGS))) to all of you.
    Anne B.

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  3. I'm one of your blog stalkers but have never left a comment. Mila is so beautiful and congratulations on bringing her home! My Ben had very similar heart issues as Mila. He has open heart surgery and his PH seems to be gone. I'll be praying for a similar outcome for your little girl!

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  4. That had to have been the hardest day for you yet! Yes you knew she needed medical attention but this is your baby.. your daughter! Please don't let the fact that you already knew this needed to be done somehow lessen the hurt and reality of the situation. The steps you took to bring Mila home were needed and if left in the orphanage she really would not have stood a chance. This is her plan and you are doing everything right. My daughter was really sick about a year ago and they thought she had cancer @13 months of age I had just lost my mother 7 months before that and inside I myself wanted to die. I was so upset at what was going on. We spent a few weeks up at a wonderful children's hospital. Sitting in the waiting room with all of the sick children really put things into perspective. My heart hurt for all of them and their parents. Maybe I became numb.... but shortly after I just told myself that this is my daughters life.. this is her plan and all we can do is listen, be educated, support her and go with the flow. This is what I had to do so I would not go crazy with the What ifs. The main procedure they did on her was the bone marrow and it was hard.. watching them sedate her and knowing they were going to drill into her.. it was so hard and so sad. It was out of our control but we knew it had to be done. Be as strong as you can and just know that you are such a strong mother to Mila. ( my daughter did not have cancer but has JRA) having a sick child and not being able to do anything for them is probably the worst thing you can deal with. I know that my story is no where near the seriousness of Mila's procedure but I just wanted to let you know that I in a way understand some of your feelings and that we will be keeping your entire family in out thoughts for a quick recovery. Stay strong :)

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  5. You and Shawn are two of the bravest, strongest people I have ever met. I've seen you deal with situations that are beyond stressful, and you've handled it all with amazing poise. This is going to be terrible to go through, but I'm sure you two are the best possible ones to take on this challenge.
    Before last week I hadn't said a prayer in years. I started praying in the Ukraine, and really haven't stopped since. Thanks again for all that your family has given me & to so many people, literally all over the world.

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  6. Our prayers are with Mila's heart to prepare for surgery, her body to prepare for super duper healing and for all of you the strength to handle this next step.

    Mila couldn't be in better hands both medically and lovingly. Just look what showing her love and attention did for her in the growth dept.

    After reading Mike's response I have to say that I agree with him 100%. These last couple of years of getting to know you, Zoya and now Shawn has been such a blessing for me and my family. We are honored to call you friends but more like family.

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  7. This this a RR family whose daughter had heart surgery for a VSD and PH, she would probably be a great resource for you.

    http://stclairadoption.blogspot.com/

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  8. Praying, Praying for all of you. Our thoughts and prayers are with you and your beautiful family. Mila sure is a fighter and she will fight her way through this too. She has found her forever family and is such a happy little baby now. You can see it in her smile how happy she is. God will be with her the whole time.

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  9. Sarah,

    I just sent you an email. Please read it. I am hoping I gave you some advice that you will respond to ASAP.

    Love,
    Sheila

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  10. We have been praying for your angel, and we will keep praying for her. God is great, and He will see you all through this!

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  11. Oh, Sarah, I know what you feel! We've experienced all these feelings 2 weeks ago. It was HARD, I could cry again if I go back to my memories of that surgery day. But thank God everything was fine and my son recovered so quickly! There is no other way for Mila either, we will cover her in prayers!

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  12. You don't know how much she reminds me of my 8 yr old son Conor, when he was her age, not only in looks but with the whole aspiration issue.

    I am totally in love w/your little peanut! Wish I could babysit her so I could have my "girl" fix! I have two boys so I don't get to enjoy girly stuff.

    Anyway, I will be thinking of you and Mila in the weeks and months ahead. I'm not familiar with Pittsburgh's hospitals, but I do know that CHOP in Philadelphia and Hershey Medical Center (which we go to) are excellent with pediatrics in all specialties.

    Hugs to all of you!
    Tracey

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