LARYNGOMALACIA - collapsing of the soft tissue of the upper larynx

Sophie has been holding her breath from time to time until she turns purple which has been worrying Amanda and I. This morning Sophie's nurse spoke with the doctors and told them that something did not sound right when she was breathing. The doctors took a look down the back of her throat and noticed that tissue in her throat was constricting and not allowing air to pass through. The doctors decided she would need to be on a ventilator, a machine that opens up her airways and allows her to breath. The doctors first step to trying to fix this issue is to put Sophie on a steroid medication in hopes of decreasing the inflammation. They plan to check her airway again in about 48 hours to see if this has helped. If this does not work then the doctors are going to go in with a laser and trim some of the tissue down in hopes of opening up her airways. Lastly, if neither of these steps help then Sophie will have to have a tracheotomy (check spelling). Amanda and I were pretty upset about this news but we have each other and know that everything that is done is to help her out. Thanks for reading!

Hello everyone I just wanted to update everyone on the status of our little Sophia. She was born on December 27th at 8:54am. After they took her from mama’s belly and were beginning to clean her up the nurses noticed that she was not crying properly as if she couldn’t breathe. As I watched the nurses clean her I felt helpless as my little one tried to cry but couldn’t, instead her body turned dark purple. The nurses covered her with the oxygen mask and whisked her up to the newborn intensive care unit (NICU) before Amanda or I got a chance to hold her. Amanda’s heart rate dropped because she was scared that something was wrong with the baby. The doctors quickly gave her something and I was right back by her side letting her know that everything is going to be okay and that I love her.

About an hour later at the NICU they informed us that Sophia would need to be taken to Riley hospital for children and see an ear nose and throat pediatric specialist. Sophia and I were life lined by ambulance to Riley where the put Sophia on oxygen and kept her in the NICU there.

Later on around 6:00pm my Dad drove me back up to Community North, where Amanda still was. We received word that they were going to transfer Amanda to IU hospital, which is connected to Riley, so she could be closer to Sophia while she recovered from her C Section.

Sophia is now in stable condition and should be just fine. She has whats called (check spelling) Choanal Atresia in which the nose openings in the back of the head are almost closed by fused soft tissue and bone so she is unable to breathe through her nose and is also on a feeding tube. On Tuesday Sophia is scheduled for an operation in which they will drill or laser through her nose openings and put stints in them and hope they do not grow back together.

Amanda and I are staying at the Ronald McDonalds house in Indianapolis and they have been more than generous to us. If everyone can do me a huge favor and send Amanda a message or write on her wall and let her know that she is a trooper and she is soo strong for staying tough right now. She was unable to see her baby for almost a whole day and has been feeling absolutely helpless because she has been to weak to do the mundane tasks with her new baby. If everyone can do that I would really appreciate it.

Now to me! Johnny Rhodes is doing great! I get to hold Sophia for 5-6 hours a day and sing to her any song I want and she doesn’t care if I don’t know the words. I kiss her everyday I see her and not a night has went by that I haven’t dreamt about her. Thanks everyone for being there for us. We have great family and friends and Sophie is 1 lucky girl to have friends and family like all of us. Thanks Again