Mommy to a Cranio Baby

23Jan2013

Mommy to a Cranio Baby
By Stephanie Bell, The Beautiful Mommy Blog

http://blog.beautifulmommyclub.com

My first son, Nathan, was born in a dramatic fashion. He had the cord around his neck twice and once around his foot. It was 18 hours of labour, and 10cm, later that they realized he was stuck and went ahead with an emergency c-section. When Nathan was born, he had noticeable frontal bossing. For the first month, we were told it was because he was stuck in the birth canal, and just had an odd shaped head. The doctor assured us that it would be fix itself. At his 2 month well being appointment, it became noticeable that his head shape wasn't going to fix itself. Our family doctor diagnosed Nathan with craniosynostosis. She explained chances were he would need surgery to fix it. I was in shock. This perfect little man, hitting all his milestones, would need surgery to reconstruct his skull. Here is our little man at birth (his head was already too long for hats):

Craniosynostosis</a> is a condition where the baby's sutures (soft spots) fuse too early. This causes the brain to grow in whatever direction it can. In Nathan's case, his was growing out the front and back. As a result, he had an extremely large forehead with pinching on the sides. You can view a video, from the Mayo Clinic, for more detailed description: http://www.youtube.com/embed/P_MhDiUdLo4

Three weeks later we had our first appointment at Sick Kids Hospital in Toronto. As soon as the craniofacial surgeon, Dr. Phillips, saw him. He confirmed that Nathan, did in fact, have sagittal craniosynostosis. He also confirmed that Nathan would need surgery to correct it. I just wanted to sit there and cry. I knew that it wouldn't make a difference though. It was what it was. We had to decide if we would go ahead with the surgery or not. This was not causing any development issues, but his head would continue to grow long and narrow. His forehead would remain very prominent. They also couldn’t guarantee there wouldn’t be any developmental delays.

Many questions ran through our minds. How bad will the kids tease him? Is putting my son through this, really worth having a perfect head? What if there are delays? What if hhe is in pain? So many questions, with no answers. Ultimately, we decided we wanted to give Nathan every opportunity in the world. We were going ahead with the surgery.

When we received the call for Nathan's surgery date, my whole world came crashing down. This was really happening. Did I really want to go through with this? Did I really want my son's head to be cut open and his skull remoulded? I just gave a deep breath and let it out to the various web forums I post on. I never did share it with my husband or my family. I don't know why I felt I had to be strong, everyone would have understood, but I had to be strong. What other choice did I have? Unfortunately, the stress of the whole situation did get to me. After two and a half years of being seizure free, I ended up having a break through seizure. My body made me acknowledge how worried and stressed I was. Once I accepted it, I began to relax. We had to go through with it. His forehead was definitely getting bigger as the time went by. Here he is the day before his surgery.

Finally the day of Nathan's surgery came. It was one very long day. When we finally got in to see him in the PICU, there was a lot of chaos going on around him. Nathan was still bleeding. They had to give him another transfusion (this was his third, he had 2 during surgery). That helped to slow the bleeding, but it didn't stop it completely. It was how amazing his head did look. Even only a few hours after surgery! We were so shocked. Even with all the research we did before hand, we had no idea it would be that perfect. Here he is Thursday evening (the swelling was starting to begin, especially since he was favouring the one side):

The first night was a very long night, but we managed to get a few hours sleep in the waiting room. The nurse convinced me to go lay down around 2 in the morning. I didn't want to leave Nathan, but she said I would only be good to him if I was feeling ok. My mom was also telling me I needed to get some sleep, we did not want another seizure.

In the morning, they told us we were ready to move us to a regular room in 8C, even though Nathan had developed a fever overnight. It was a big relief! As we were getting ready to go, the doctor came in and told us we couldn't go. We had to stay in the PICU. Nathan needed another transfusion and vitamin K to help stop the bleeding. If this didn't stop the bleeding, it would be off to surgery again to find where the bleeding was coming from. This is the last thing you want to hear. I'm pretty sure I almost had a panic attack when I heard the word surgery again. Early in the afternoon, the vitamin K did the trick and slowed the bleeding to the point we could move into a normal room. We were able to move to 8C! Finally my husband and I could shower, and have a comfortable place to sit. We could semi relax.

In the evening, the surgeon came to check on Nathan. He told us that we would not have to have surgery again, that the vitamin K and the transfusion were successful. His bleeding was pretty much stopped. The nurse was able to remove the drainage tube! Oh my, what a relief that was. At that point, Nathan's swelling also started to get bad. His eyes were now swollen shut. It is a very tough thing to see, but was expected. Little Guy was still sleeping from the morphine and Tylenol he was getting. We couldn't even get him to wake up for a feeding. He was remaining on the IV. Here he is on Friday:

Saturday was not much better. He was very uncomfortable. He started to feed, but only 1-2oz at a time. Now where near his normal 6oz. He still had his fever, which had spiked to 103° overnight. Nathan had to remain on the morphine, Tylenol and IV. This poor kid was no where near feeling himself. I was kind of disappointed, and kind of worried. I had seen pictures where some babies were smiling with their eyes swollen shut. Not our little guy. :( He would cry whenever he was moved, and especially when we were changing his diaper. Boy was it getting tough, and emotionally draining. And this was only day 3.

Sunday morning finally came, and there seemed to be no change. Our surgeon's fellow came to see Nathan. And he was pretty certain we would be staying until at least Tuesday. That would be 5 days total. Thankfully, Nathan's fever had broken during the night, and no signs of an infection. He also had started to eat about 3oz. The nurse decided to take him off of the morphine and IV drip. This let us walk around with him and give him better cuddles. My mom sat with him in the rocking chair, by the window, singing to him for a few hours.

By dinner time he had one eye open! Before bed, he had a slit on the other eye. Things were starting to turn around, finally. Little Guy was still not a happy camper. He hated suture care, and his bum being changed. He was still very upset every time he was moved.

Nathan woke around 4am Monday morning. He was so unhappy. It took 2 hours, but I finally got him back to sleep, on me, while I rocked him. When the surgeon came in on Monday to take a look at him, he had both eyes open! The surgeon was also very shocked at how great his head looked. He commented "it already looks like a normal shaped head". He then told us since his fever had broken, he had both eyes open, he was feeding (they were not concerned about solids-which he was not taking), and had enough wet diapers (yes it was that big of a list), that if we felt comfortable we could leave that day! After 4 long days we were able to go home! A day earlier than planned! His turn around was amazing. He is a strong boy, that's for sure!

 

Before we could leave, Nathan had to be fitted for his helmet. This would help finish the shaping process. He was a very angry boy when he had to have the casting done. He screamed like he was being tortured. Which in his mind, he probably was!

The adjusting to home was probably been the worst of the whole experience. It was like bringing home a newborn! Even three weeks later, our routine was not back to pre-surgery. Nathan was back in our room, and had only slept through the night a handful of times. He cried whenever we changed his bum. It was been tough. However, we were lucky that Nathan's days and nights were never reversed. We tried really hard in the hospital to make sure that didn't happen. But, there were a lot of other changes. Nathan was up every few hours during the night. He got very angry very easily, and he refused purees (which may or may not be surgery related). He had also been fighting sleep a lot more than before. He was also very clingy. As I said before, coming home was definitely the hardest part of this journey. It eventually did happen, took awhile, but he did come back to the Nathan we knew. Here he is before he got his helmet:

 

The next step in our journey was for Nathan to have helmet therapy. Nathan didn't seem to hate the helmet, but there were times he was fussy in it. We painted it blue and put Mickey Mouse stickers on it. I begged my husband to have it airbrushed but he refused, so it didn’t turn out great, and the paint would rub off whenever Nathan pushed himself backwards. I guess we're just not DIY people. LOL. You can read about the epic fail, on my blog, in the post “Epic Fails Make the Best Blogs”. Here he is in his helmet:

He was to be in it for a few months, but he only ended up being in it for just under 2 months. By the end of it, he had an absolutely amazing Charlie Brown head! Was it worth it? There were times were it didn't feel like it, but when we took off the helmet and saw that beautiful forehead, it was definitely worth it!

Here Nathan is one year post-op:

One and a half years post-op, and his head still looks incredible. His eye sight is perfect. Development wise, he is doing perfect! I was so worried that he would fall behind. He has lots of attitude, and is definitely cheeky. And I pray everyday this continues. He has formed his own little personality. Here he is enjoying lunch with Buzz:

This journey was definitely difficult at times, and I hope we never have to experience it again. But, it definitely helped show how much strength I actually have. I won't lie though... I am so glad this journey is over!