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.