And we wait some more...

Time went by VERY slowly today as I waited for 2:00 when I could call the doctor's office to see if they were able to do the surgery this Monday. My heart beat faster as 2:00 approached and my chest felt tight all day.

I called at 2:01. Dr.Siddiqi's secretary told me they were sorry, but it wouldn't be Monday. She said they had gotten an operating room, but that it didn't work for Dr. Riva-Cambrin, the neurosurgeon. I started crying on the phone.

After I hung up I cried for a bit, and then just felt totally calm. I haven't felt this for a while and it is really nice. I called Alan, my mom, and Alan's mom and then I took a little nap. I think my mind and emotions are glad for a break from all of this.

I know this respite is only momentary, but I'll enjoy it while it lasts.

Five weeks seems really far away, but when you have no choice you just have to take life as it comes. It would have been nice to get it over with sooner rather than later, but it all came so fast! Now I will have time to prepare myself and our family a little more.

And we wait...

It has been a rough couple of days. It will be a long month if we have to wait until April 30th for his surgery. I am not sleeping very well and I feel sick to my stomach a lot. I keep thinking of the moment when I will hand him over to the surgeons and hoping that I will be able to keep myself together.

I have been strengthened so much by all the people that love our family. Everyone is so willing to help and we can feel their prayers. It has been amazing. The Lord not only loves my sweet little Isaac, but he loves me as well. I know he is bringing me all this love and support because I need it.

I have been able to talk with 2 moms who have gone through this themselves. I didn't know either of them before, but we had an instant bond. Their boys had this surgery 3 years and 4 years ago, and they still remember strongly all these emotions and they cried with me. One told me "You are stronger than you think you are." She also said that she can only see her little guy's scar when she is combing his hair and to her it is just a reminder of how blessed they are to have him in their family. I know I will be talking with both of them more as I try to sort through all of this. One of them said that her brothers had shaved their heads when her son went in to show support. I think that I will have Isaac's brothers, Jeff and Josh, shave their heads with him. It will be a nice way to help them feel connected to this process.

I worry a lot about how Isaac's siblings will handle all of this. I am trying to have life continue on as usual even though I have a hard time thinking about anything else besides this surgery. It seems like our world is on hold until we know for sure when he will be going in.

I have been reading and re-reading this scripture a lot lately...

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14:27

First Meeting with Specialists

Above: What Isaac's skull should look like.
Above: What Isaac's skull does look like.

Alan and I went together with Isaac to his appointment with Dr. Siddiqi at Primary Children's Medical Center. I was sick to my stomach all morning. I knew he had it and I knew some of what the surgery may involve. I was just waiting for professional confirmation.

We met with Dr. Siddiqi, the pediatric cranio-facial plastic surgeon. He said he was confident Isaac had Sagittal Craniosynostosis, and sent us to get a CT scan. On the way we passed the pediatric neurosurgeon who said, "Oh ya, he's got it," the moment he saw him.

Isaac did great during the CT scan and we were soon back in the doctors' office. They showed us the result and you could see a smooth white skull where there was supposed to be a line. Dr. Siddiqi sat right in front of me, looked me in the eyes, and said, "Are you ready for me to tell you about the surgery?". I was ready because of all that I had looked up, but I guess many mothers aren't and they fall apart when he tells them.

A 5 hour surgery, one hour of which my baby will be without his skull. They will remove it in 3 pieces - his forehead, the top of his head, and the back of his head. They will then cut and reshape it, put it together with disolvable plates and screws, and put it back on his head. He will have a zig-zag incision across the top of his head from ear to ear.

He will spend 1 to 2 nights in the PICU and then another 3-4 nights on the regular floor. He will lose a lot of blood and will need blood transfusions. We asked about using our blood, but they told us that you can get a better match from the blood bank. He will have a tube coming out of his head behind his ear to drain out blood and fluid. He will be on Morphine the first day, but by the third day he will only need oral Tylenol.

Follow up care will be minimal and he won't need a helmet or any special post-operative care.

We drove home in a daze. I was able to call a couple people that night and send a few e-mails, and then I lost it. I cried the rest of the night. This thing I am feeling is hard to describe but it is a very real weight upon my heart.

9 Month Appointment

Isaac went in for his 9 month well child check up on March 12, 2012. Our pediatrician told me that he thought Isaac's growth plates in his head had fused too soon. He told me that it is only corrected through surgery. He said that it is not an outpatient surgery, but that the kids recover really quickly. He said he has seen a lot more of this lately and set up an appointment for us at Primary Children's Medical Center for Tuesday the 20th.

I went home and typed "soft spot closing too soon" into Google. That's when I learned the word Craniosynostosis. I spend the next days learning all I could about it. The more I learned the more my heart sank. He had all the symptoms. I looked back at the pictures that were taken the week before and noticed the "pinched temples" that I hadn't noticed before. I also took a few other pictures to compare to what I was seeing on the internet.

It was a long week as my fears grew. By the time our appointment came both Alan and I were certain he had Sagittal Craniosynostosis.

Our Sweet Baby Isaac

Isaac was born on June 16th of 2011. I had a rough pregnancy with low amniotic fluid, but I went into labor on my own and delivered him at 38 weeks. He was big and healthy and as sweet as can be. One of the first things I noticed about him was his elongated head. I figured that it was mis-shapen from going through the birth canal.

His head didn't round out over time. My brothers, who will tell you like it is, called him alien head. I knew it was an obvious difference between him and my other babies but I really just though it was his look and I had no worries about it.