Update- Friday

Amarie is still in ICU recovering. They have been having trouble getting her blood pressure and heart rate stable. She will stay sedated and on a ventilator until Wednesday. We miss seeing her awake and being able to hold her! I went home last night since she was sedated and there really wasn't anywhere to stay...it was nice to be home after being gone for a week (and especially nice to get some sleep after not sleeping for two weeks!) but it was so hard to leave her. We are so glad to have the surgery behind us and to be heading in the right direction. She will go back to the ICU for a day or two after they take the breathing tube out on Wednesday and then will go to the pediatric floor for a while until she is stable enough to go home. Thanks so much for all of the prayers and support!
~Corin

Surgery Update

Well Amarie's surgery went well. She only lost a teaspoon of blood, which is really good. She has a couple of rods sticking out of her head, which is hard to see, but I know it is for the best. She is recovering in the ICU right now and probably will be there for another 5 days. The doctor said she could possibly go home in 7-10 days. We will see. Thank you again for your prayers and support.

-Jason and Corin

Surgery

Well Amarie is going in for surgery today. She did not do well in her sleep study so she is going to have her jaw extended so she can sleep, breathe, and eat better. I am not too familiar with the procedure, but from what I can understand they are going to break her jaw and place some sort of vice and crank in there. This will help stretch and extend her jaw so she can breathe easier. She will be in the ICU for about 5 days after the surgery. The doctors here have been great and I've been told this procedure was created at this hospital. This has put her mother and my nerves somewhat at ease. There are some risks of infection and potential blood loss, but this is a risk with any surgery. The bright side is that after the surgery Amarie should be able to eat on her own and breathe with a lot more ease. We are very hopeful and we have faith that she is in God's hands. Thank you all for your prayers and encouraging words. God bless!

-Jason and Corin

Pictures

Update

We are still at Scottish Rite Children's Hospital and will be here at least until Wednesday. Amarie is doing well...much better now that she is getting tube feedings. She is on a monitor to make sure her breathing is ok and is getting fed breast milk through a tube in her nose. We are all doing well just sleep deprived! She was seen by two more doctors today- a craniofacial specialist and an ear, nose, throat doctor. The biggest issue that is causing her feeding and breathing problems is her small jaw. They are going to do something called a sleep study on Monday where they monitor her breathing while she sleeps. Since her jaw is small her tongue can fall back in her throat and block her airway. If she does ok on the sleep study they will probably send us home Wednesday on tube feedings and breathing monitors and then they will do surgery when she is bigger. If she has trouble during the sleep study then they will do jaw surgery and we will stay here for two weeks. Also, the ENT doctor said that he could not see an ear canal on her right ear so she more than likely will have hearing loss. Thanks so much for all of the support and prayers from everyone! Keep praying!

Love, Corin

Week 37 Back to the Hospital

OK, so I know a lot of you are wondering why we are back at the hospital all weekend. Well let me first say everything is ok and I'm sure it will get better. As previously mentioned in a prior note/blog Amarie was born with a syndrome known as Treacher Collins. This syndrome causes some physical abnormalities in one's facial structure. The severity of the distortions varies from person to person. In Amarie's case she has a recessed jaw. Meaning her jaw is small and it causes some trouble when she eats and tries to breathe at the same time. We have been feeding her every 2 or so hours, as one should do with a new born. Every time we feed her she snorts and sometimes the milk or formula protrudes from her nose. This is because she is not swallowing properly due to her recessed jaw. In other words it is difficult for her to swallow properly. We discovered this during our appointment with a lactation specialist. The specialist referred us to the pediatrician who referred us to the emergency room at Children's Health Care in downtown Atlanta. So we have been here since Friday night. Amarie is doing well. They had to place a feeding tube down her nose and into her stomach to ensure she digests the milk properly. The primary concern was the milk was going into her sinus and lungs, which puts her at risk of infection. We are going to see a geneticist tomorrow who can give us further counsel. Any prayers and encouraging words are greatly appreciated. Thank you all. 

-Robert J. Orean

for more information check out oreanfamily.blogspot.com