heart broken

   I wish I could say this post was going to be happy and go-lucky and bring some type of positivity, but in all reality it won't. Many of you know we had a follow-up ultrasound with Maternal-Fetal today after our last appointment on Thursday where they noticed some areas of concern with the lungs. We met with Dr. Read today because Dr. Lipscomb was not in and she had actually wanted us to see him. Josh isn't too fond of seeing a different doctor every time but it doesn't bother me too much. They are all very well qualified and are very up to date with our case/chart each time we visit. We started the appointment like normal with them checking my stats and the ultrasound technician doing the initial ultrasound for the doctor to review before he came in and discussed what was going on. She didn't really say much but snapped some cute 3D pictures (I will post these later) and told us the doctor would be in soon. My mom was at this appointment with us again and we both discussed that we could tell the lungs had gotten brighter even from just looking at the ultrasound.
   Dr. Read eventually, literally like 45 minutes later, came in to talk to us and discuss what he was seeing on the ultrasound. He confirmed our suspicions that the lung issue from last time had gotten worse and gave us two possible diagnosis that were related to what he could see. The first was CHAOS and the second was tracheal atresia. CHAOS stands for Congenital High Airway Obstruction Syndrome. Both of these conditions are VERY rare, probably even more so than the already existing heart condition. There are no specialists in the South that deal with either of these conditions and they want us to go to Cincinnati, OH to have a MRI and discuss what the options for in-utero surgery would be, and they want us to go relatively soon - as soon as this week. Basically the heart condition already obstructs the airways from the swelling pressing on the bronchi and the intial goal (before the lung issue arose) was to let me go as long as possible to give the lungs the chance to develop. Now, with this very serious and rare lung condition there are limitations to his lung development which is why they do the surgery in-utero. I would go in to detail about the surgery but it is really even more than I can understand at this point and we won't know what all it entails until we head up to Cincinnati.
   We don't have to go to Cincinnati, and they gave us the opportunity to make the decision for ourselves. Josh and I both feel strongly that we should go because of the already existent risks from the heart condition. We also think this is our best bet of getting a qualified second opinion. Because this condition is so rare the Cincinnati Children's Hospital has only seen 3 cases, EVER. We have to call tomorrow to give our decision and we will let them know we have decided to go ahead and go up there. They will cancel my MRI here next week and just do the MRI up there instead. We are also going to see Maternal-Fetal again on Thursday, pending they do not want us in Cincinnati before then. Dr. Read seemed legitmately concerened that there was change in 3 days and he also called up there to get their opinion. To be honest, these doctors know way more than I do and we are trusting their opinion in regards to going ahead with the trip.

   I honestly don't even know what to think, say, or feel at this time because I am so overwhelmed. I am really struggling with the 'Why Me?' question and don't understand why our baby has to have TWO very RARE conditions. It also scares the living daylights out of me - all of it. The pending in utero surgery, the birth, and what he will go through after he is born. I love my baby so much already and it just breaks my heart to think of all that he is going through and he is just so little. I am asking that you continue to pray for peace of mind, our trip to Cincinnati, the doctors, our family, our baby, and our financial situation. I wish I had all the answers, I wish all of this would go away, I wish things were normal, and I wish that I didn't feel sick to my stomach 24/7.

Thank you so much for your continued prayers/support/words of encouragement because they all mean so much. Forgive me if I don't respond to you immediately, I am still working on processing all of this and trying to trust that the Lord does have a plan and he does all things for good. It's been a struggle the past month and I feel the struggle has just intensified to something I have never experienced before.

Love to you all,
Ashlyn