Thankful heart.

The day that Noah was born his pediatrician came in my room to give me his thoughts on Noah. Overall, he was a healthy boy and nothing concerned him -- except for the shape of Noah's head. He mentioned a couple things about it that bothered him, but said that he would revisit his thoughts on Noah's skull at our 2 month visit. Our sweet boy was delivered via C-section, but because he was bigger than the surgeon originally anticipated (coupled with Noah refusing to be born), she needed to use forceps, leaving Noah's face very swollen and bruised. Of course we thought this could be a reason for his misshapen head, so I brushed it off and left it at that.

After a miserable 2 stay in hospital for jaundice and countless visits to the lab to have blood tests done before Noah was even a week old, we were in the doctor's office again -- where again he mentioned his distaste for Noah's head. Regardless of whatever our doctor was saying about it, I was (and am still) convinced that he was the cutest baby. I went on thinking nothing of it, thinking that the shape of a baby's head is constantly changing and I wouldn't have anything to worry about.

Shortly before his 2 month visit, Noah came down with a cold. I called the doctor's office to ask what I should give him for it. Since a respiratory virus had just hit Utah, they thought it best to bring him in. A quick exam later and we were referred to a plastic surgeon at Primary Children's Hospital. The pediatrician was not concerned even remotely about Noah's cold -- he was, however, concerned about (surprise, surprise) his head.

So, a couple weeks later I was in, yet again, another doctor's office. A CT scan showed what his doctors were worried about since the day he was born ... Noah has what they call Craniosynostosis; sagittal, unicoronal, AND lambdoidal craniosynostosis to be exact (what they call the "Mercedes Benz). 4 of his 6 cranial sutures had fused prematurely, causing more pressure on his brain than any normal 2 month old baby. Though this condition can be as common as 1 in 3,000 babies, the forms that he has combined are not common at all and fairly serious. There I sat, holding my baby while 3 surgeons came together to explain what they were seeing on his scan, telling me that the reason he sleeps with one eye slightly open is not some creepy thing that he just does, but an effect of his condition, discuss what should be done, and reassure me best they could that they would take care of him so as to not let this result in developmental delays and eventual permanent brain damage. It was all so overwhelming, so much so, that at one point they asked if they should call someone to come be at the hospital with me since Kent was at work. They gave me phamphlets and information and talked about what I would be comfortable with. We came up with a plan and decided that this coming Monday, November 17th, Noah will go in for an endoscopic craniectomy where they will remove parts of his skull to relieve the pressure and give his brain room to grow. A procedure that will last about 3-4 hours and require blood transfusions and a possible PICU stay.

I have never felt so spread thin. My emotions are on a crazy roller coaster of anger, pain, anxiety, happiness, helplessness, frustration ... I feel like I had, in some way, failed my child before he was even born. But, in the ultimate stillness of it all, I have been able to find peace. Never in my entire life have I felt that our Heavenly Father KNOWS and LOVES his children individually with an assurance as I do now. Looking over the last year of our lives, I can see His hand in it all. Things fell into place as they were intended and I can testify that Noah was taken care of before he arrived here. There is no doubt about that in my mind. We are where we are supposed to be. I am no less angry or pained that this is happening to my poor baby, but I am not angry with God, I am angry with the situation. I have relied on my Heavenly Father for the support that I have needed to help get our little family through this difficult time. It could be worse, I know that, and I'm told that constantly. It could always be worse, but I am learning to be thankful for my trials, for the hardships in life that teach me just how strong I can be even when I am feeling my weakest. I am thankful for a loving and supportive husband who works long days, but still finds time to come home and read to Noah, play with the dogs, do the dishes and the laundry, and give me "mommy time" to be alone to work, walk around target (this is vital for my sanity), or take a nap. I'm thankful for this chance that I have to be Noah's mama; to learn, to grow, and to see the kind of person that I really am.

We are holding a fast on Sunday for our sweet boy. If you would like to participate in any way that you see fit, we would appreciate it.