I will start at the very beginning. Eli was a scheduled c-section because I wanted to get my tubes tied. No more babies for us, Eli is our last! We woke up super early (like 4am) and had to be at the hospital at 6 to pre-register and get prepared for the surgery.
It looks like I am smuggling a basketball, but that is our big boy in there! The c-section went well and we had our baby boy before we knew it! He was a perfect little man! He had all 10 toes and all 10 fingers and didn't have any issues at all. We noticed during our stay at the hospital, that one of his eyes opened more than the other. The doctors kept on assuring us that he was healthy and doing great so we left it at that.
After the first week home I looked at his skull more closely. I noticed that one side was a little bit more pushed forward than the other one and one of his eyes was still opening more than the other one. I made an appointment with his doctor and then he suggested we go see a craniofacial surgeon. I called two hospitals by us, Beaumont and Detroit Medical Center, after talking to both we decided to go with Beaumont.
www.beaumont.edu
I had to get an x-ray done of his head before the appointment. That was rough and little man definitely didn't like it. We survived though! Then we went into the Ian Jackson Craniofacial Clinic and met our awesome nurse Jennifer and our doctor Dr. Chaiyasate. It took me forever to learn how to say his last name, now I am a pro. When we walked in there were dozens of people standing in the hallway. Come to find out they were all there to see Eli and take a peek at his misshapen head. All of the doctors there was quite overwhelming. We were hoping that our son had plagiocephaly, which would be from him laying on his back to sleep. All he would need is a helmet and he would be fine with no surgeries. When I first met Dr. Chaiyasate he had this look in his eyes that said it was more serious than that and he said "You will go through a lot with this, but don't worry its fixable." I already looked on Dr. Google and I had a feeling it was craniosynostosis, that statement confirmed it for me.
We caught it very early and I was hoping that all they would have to do is a simple surgery with an endoscope. There is less risk with that procedure and the healing time is a lot less. Unfortunately we found out that his was a little bit more detailed and he will have to have the full surgery. If you are wondering what craniosynostosis is, it is a condition where some of the joints between a babies skull closes early. It can be very serious and it can increase pressure in the head. If not taken care of it could cause blindness, seizures, brain damage, and even death. When he showed us the x-ray it was like time slowed down. On Eli's left side his sutures closed and it is going all the way to his eye so they will need to reshape by his eye. He said that he would have to do a surgery where they open up his head from ear to ear and actually have to remove bone and shape it.
http://weillcornellbrainandspine.org/condition/craniosynostosis/symptoms-craniosynostosis
That was terrifying for us. We were so overwhelmed, but the doctor and nurse were great. It was nice to hear our nurse Jennifer has a daughter that had craniosynostosis and had to have the surgery. She did great through the surgery and has no mental delays. It was really nice to hear that and its great that I have somebody there that can relate to me about it and help me not only understand, but deal with it emotionally. It was also awesome to know that Dr. Chaiyasate is a great doctor and he has even been in the news numerous times helping people. He has always been positive, but honest. I am able to know that he has a good prognosis, but prepare myself if the worst does happen.
That day, I refused to cry. I just told myself that there are a ton of children in this world that have a lot worse to deal with and that this is fixable. My husband still worked in retail then so he was at work a lot. He worked every other weekend too and he had to work the weekend after we found out. I think the first time I cried was during worship time at church. I cant even remember the song but it really made me think about stuff and let the flood gates open. I tried to hide it from other people ( I didn't want anyone thinking I was a nutter) but it felt right to do it then and be able to pray to God in his place of worship. So many people try to hide who they are when they go to church, but really that's a place where you should let it all out. Since then I really am trying to see the bright side, and staying positive about this situation.
http://theartistoflife.com/blog/design/craniosynostosis-onesies-t-shirts-cranio-kid/
Now a days we have been extremely busy. We take him to his normal doctor appointments but then we also have to meet with the craniofacial surgeon frequently and we have a developmental nurse that comes monthly. I also will have to meet with a hematologist (blood doctor) to prepare for the surgery and I have met with a neurosurgeon that will help with the surgery also. Sadly, our original neurosurgeon found out he couldn't do the surgery so I have to meet with another neurosurgeon soon and she will help Dr. Chaiyasate perform it. His surgery will be in January so we still have a little bit to go and prepare, for that I am thankful.
I pray for Eli daily, and our church is also praying for him. I really do believe in prayer and it seems to be working. Eli is registering at above his age at all levels. Dr. Chaiyasate told us that the best thing we can do for him is to put weight on him. We are doing that quite well! He is bigger than a lot of babies his age and almost as big as his two year old sister! They wear the same size diaper and Eli is an inch from growing out of his infant carrier! He is such a ham and loves to laugh and smile. I feel so blessed that he is in our lives and if this is the only difficulty we will have with our kids, I am okay with that. I will definently keep you guys updated with him and if you can take any time out of your day and say a little prayer for him I would really appreciate it.
Peace and Love,
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