Well today sure threw us onto a new path we weren't expecting to venture down. We had Mila's airway evaluation today at CHP. The doctor is FABULOUS in every way possible and I am so thanking God right now for this doctor/surgeon and that our ENT here at home spent enough time with Mila to know she needed further evaluation. We have one, possibly two new diagnoses after today's scope.
She definitely has LARYNGOMALACIA, which is somewhat common in babies, but hers is pretty severe and the doctor said by this age it should not be this bad. It is causing her to have retracted breathing in her neck and chest when breathing in and it is causing her airway to be partially blocked, thus the horrible sleeping position to keep it open.
The other likely diagnosis is LARYNGEAL CLEFT Type I. It is a very rare congential abnormality that can allow food/drink to pass from the esophogus to the airway causing severe aspiration. So rare in fact it occurs in 0.1% of the population. Can my girl catch a break here? The good part is that Type I is the best case scenario for Laryngeal Cleft (hey I'm grasping for good today). To fix this, they would use a gel to fill in the space that should be closed already. The doctor told me he is not 100% certain this diagnosis is correct, but he feels that it is likely. He will get a better look when he does the surgery on Monday.
Yes...this Monday Mila will be undergoing surgery to fix the laryngomalacia and possibly the laryngeal cleft as well as to take a further look to make sure there is no narrowing or her airway further down. Mila was in ICU in Ukraine for 2-3 months with a severe case of pneumonia. The ENT we saw today said it is likely that she was intubated during part/all of that time in ICU and that could have caused some narrowing of her airway further down. If this is the case it could complicate her recovery from open heart surgery even further. The cardio team said this airway "stuff" needs to be addressed before her open heart surgery on December 19th....so if all goes well we will still keep the 12/19 open heart surgery date as well. They will be keeping Mila in the PICU for at least a night after the procedure on Monday to monitor her breathing.
*I'm adding this part in because I forgot to mention it. There is a silver lining....the airway specialist said that these issues COULD be making her pulmonary hypertension and heart worse.....so we are praying that once the airway is fixed we will see an improvement with the pulmonary hypertension...that would be just amazing!!
I am so thankful for our ENT here in town who noticed the red flags (that the cardiologist did NOT) and sent us back to Pittsburgh. I can't even let myself think about what would have happened had they not discovered these issues prior to her open heart surgery. God is revealing to us why Mila did not have surgery in Ukraine....why Laina's adoption fell through.....why He led us to Mila so quickly...
And we stand in awe of God's miracles thus far in Mila's life. I had no idea how fitting the name "Mila" (meaning 'miracle') would be, but we just felt led to that name. The fact that she has fought through this laundry list of conditions as an orphan is beyond my comprehension. There is no worldy explanation for her survival thus far. According to all statistics and human calculations she should not be living and breathing at this moment. God has given her a fighting spirit and we pray that He continues to hold her and protect her though both of the huge upcoming surgeries.
Please PRAY for Mila and for strength for us. If you have a prayer list at church please add her name. Please ask all your friends and family to pray for our sweet girl too.
And if you are thinking to yourself, as I've heard recently, "Wow they must be so strong to deal with all of this." You're dead wrong. You'd do the same thing if it were your child. God would give you the courage and strength to fight just as hard....to fight through the tears and worries, the sleepless nights and frustrations. We can't take credit for acting like superstars here because we're soooo not! Without God we are nothing. So don't tell me you think I'm strong because inside I'm quivering while I turn to God to carry us through this.
We are so appreciative of all your love, support, and prayers. We may have chosen this path, but just remember that doesn't make what we're going through with Mila any easier. It doesn't make us any stronger than the next set of parents who are unexpectedly dealing with unexpected health issues in their children. We need you and your support and prayers.
She definitely has LARYNGOMALACIA, which is somewhat common in babies, but hers is pretty severe and the doctor said by this age it should not be this bad. It is causing her to have retracted breathing in her neck and chest when breathing in and it is causing her airway to be partially blocked, thus the horrible sleeping position to keep it open.
The other likely diagnosis is LARYNGEAL CLEFT Type I. It is a very rare congential abnormality that can allow food/drink to pass from the esophogus to the airway causing severe aspiration. So rare in fact it occurs in 0.1% of the population. Can my girl catch a break here? The good part is that Type I is the best case scenario for Laryngeal Cleft (hey I'm grasping for good today). To fix this, they would use a gel to fill in the space that should be closed already. The doctor told me he is not 100% certain this diagnosis is correct, but he feels that it is likely. He will get a better look when he does the surgery on Monday.
Yes...this Monday Mila will be undergoing surgery to fix the laryngomalacia and possibly the laryngeal cleft as well as to take a further look to make sure there is no narrowing or her airway further down. Mila was in ICU in Ukraine for 2-3 months with a severe case of pneumonia. The ENT we saw today said it is likely that she was intubated during part/all of that time in ICU and that could have caused some narrowing of her airway further down. If this is the case it could complicate her recovery from open heart surgery even further. The cardio team said this airway "stuff" needs to be addressed before her open heart surgery on December 19th....so if all goes well we will still keep the 12/19 open heart surgery date as well. They will be keeping Mila in the PICU for at least a night after the procedure on Monday to monitor her breathing.
*I'm adding this part in because I forgot to mention it. There is a silver lining....the airway specialist said that these issues COULD be making her pulmonary hypertension and heart worse.....so we are praying that once the airway is fixed we will see an improvement with the pulmonary hypertension...that would be just amazing!!
I am so thankful for our ENT here in town who noticed the red flags (that the cardiologist did NOT) and sent us back to Pittsburgh. I can't even let myself think about what would have happened had they not discovered these issues prior to her open heart surgery. God is revealing to us why Mila did not have surgery in Ukraine....why Laina's adoption fell through.....why He led us to Mila so quickly...
And we stand in awe of God's miracles thus far in Mila's life. I had no idea how fitting the name "Mila" (meaning 'miracle') would be, but we just felt led to that name. The fact that she has fought through this laundry list of conditions as an orphan is beyond my comprehension. There is no worldy explanation for her survival thus far. According to all statistics and human calculations she should not be living and breathing at this moment. God has given her a fighting spirit and we pray that He continues to hold her and protect her though both of the huge upcoming surgeries.
Please PRAY for Mila and for strength for us. If you have a prayer list at church please add her name. Please ask all your friends and family to pray for our sweet girl too.
And if you are thinking to yourself, as I've heard recently, "Wow they must be so strong to deal with all of this." You're dead wrong. You'd do the same thing if it were your child. God would give you the courage and strength to fight just as hard....to fight through the tears and worries, the sleepless nights and frustrations. We can't take credit for acting like superstars here because we're soooo not! Without God we are nothing. So don't tell me you think I'm strong because inside I'm quivering while I turn to God to carry us through this.
We are so appreciative of all your love, support, and prayers. We may have chosen this path, but just remember that doesn't make what we're going through with Mila any easier. It doesn't make us any stronger than the next set of parents who are unexpectedly dealing with unexpected health issues in their children. We need you and your support and prayers.
Well put and a good reminder to pray pray pray! I know we will be praying on Monday for Mila and for you for peace and strength that only comes from Jesus.
ReplyDeleteYou don't even know me, but whenever you post pictures I call my husband over to the computer to show him Mila's amazing progress. :) What a miracle she is!!
Your WERE meant to have Mila. God chose you all to be a family. He will help you carry your worry and I'll keep reminding Him in prayer that you need His strength. Kiss those sweet girls and try to enjoy the joy of this season.
ReplyDeleteI am praying for not only the four of you, but for every single person that comes in contact with Mila in the medical profession to do so through the hands of God. To treat her like the perfect little girl she is and to heal her.
ReplyDeleteI want to thank God for bringing your family to her. She would not have survived where she is from and now, now she is part of a beautiful family of love.
It is okay to be a mess and it is okay to say why me. It is okay for you and your husband to crumble into each other.
Nancy
www.tinypieceofheaven.blogspot.com
Praying for Mila, sweet friend. I have 11 hours on a plane today, you can be certain I will be lifting your precious girl and all of you up in prayer.
ReplyDeleteI AM PRAYING!!!
ReplyDeleteMila was meant to be your daughter and we will continue to pray for her to sail through the surgery with no extra problems!!!
ReplyDeleteWhat a miracle that the doctors were able to find this. God is leading them all to help Mila. Such a beautiful baby. Our prayers and thoughts are with all of you. God has such beautiful plans for Mila and Zoya. Our prayers and thoughts are with you guys.
ReplyDeleteLove you guys and praying for Mila.
love,
Aunt Debbie
I am spreading the word for prayers for Mila while spreading THE WORD of God's amazing love!! He will see you through this. He understands your fears, your worries, your concerns. But he also knows the love you have for his precious little daughter, the one you committed your hearts to! Rest in His peace and take this one step at a time...he's right next to you! (((BIG HUGS))) and many many prayers!
ReplyDeleteAnne B.
I will continue to keep your family close in prayer as well as the doctors and medical staff who will be caring for Mila. She is a miracle, your whole adoption story is such an obvious tale of how God works miracles. FAITH is what you have to be strong in right now and nothing more, and your words show that you are. I can't imagine how scared you must be as Mila is so tiny and like you said you must turn her over and trust her to someone else. I know God has great plans for your family though and I can see His will being done in each step of your journey. He is holding your family so close, take comfort in that!
ReplyDeletePraying for comfort and health for sweet Mila, for you and your family, and for wisdom for the doctors. You are so right about people assuming we are superhuman for dealing with these types of things. I have also had to tell them that it is God that is giving me the strength! I cannot imagine trying to go through these types of things with a strong faith.
ReplyDeleteI am really beginning to wonder if we should get Joshua checked out by an ENT... Right now, he's been dealing with bad congestion. The pediatrician today said he has some chest retracting going on. I read your links and definitely believe he has laryngomalacia. He sounds SO raspy now w/the congestion, but sounds that way all the time. The cardiologist said "it's just floppy airways". He also is back to taking a long time to drink his bottle. Hmmm. Something to bring up w/the pediatrician, definitely.
I'm sure this wasn't the December you were expecting. But I am so thankful that Mila's airway issues were discovered before her OHS. You all are always in my prayers.
ReplyDelete