Pierre Robin

As many of you know, Carter was born with a cleft palate. This was discovered right after he was born. While we were in the hospital in Kirksville, the ENT came to see Carter, and thought he might also have Pierre Robin Sequence. This is a group of conditions that is seen with the cleft palate. We were set up with an appointment at the Children's Hospital in St. Louis to have Carter evaluated. While we were still in the hospital in Kirksville, Carter decided to turn blue on us a couple of times. This was super scary, and no one there understood why this was happening. Tim and I decided to do our research on the Internet, and realized that yes, we did think that Carter had Pierre Robin. Carter has three things that you see with this sequence: a cleft palate, a recessed tongue, and a small lower jaw. The reason he turned blue was because his tongue would fall back into his mouth and occlude his airway.
The Children's Hospital was so good. We saw two doctors and were very impressed with them. We did not feel rushed and they just sat there and watched Carter breathe for minutes on end. They said they usually do the cleft repair at about 1 year of age, so we have lots of time to prepare for that surgery. Their main concern right now is his breathing. Carter sleeps on his tummy, and I constantly watch him to make sure his is still breathing. He is scheduled for a sleep study at the end of February to make sure we are not missing something at night. They said that in most cases, the lower jaw will grow out on its own. We hope and pray that this is the case with Carter, because we really don't want to do that surgery.
I must say it was the worst feeling when we were told that something was wrong with our child. I spent 9 months praying that everything would be just perfect with our little man. To us Carter is perfect, and I would not change a thing about him. There are days where I blame myself, and days where I am so thankful that there is nothing else wrong with him. Carter can not breastfeed, and this has been one of the worst realizations for me. It was something that I was looking forward to doing, and the fact that I can not do it is very disappointing. I am pumping however, so he still gets his mommas good milk.
I know we will make it through this bump in the road as a family. We have decided that moving to Denver is now the best place for us due to the hospitals there, I am sure God had it in his plans the whole time. We are so proud of Carter and love him to pieces. He has given us more that we will ever be able to give to him! We love you all and thank you for all your thoughts and prayers!! Blessings!!!