When we found out we were expecting our second baby, we were definitely shocked since we had just delivered our first baby three months earlier, but were still very excited to have been given another miracle from God. I had a healthy pregnancy and an uncomplicated scheduled C-section. When Zachary was born, we noticed that his head looked a little different from his older brother’s head, but we assumed it was just the way God made him. We took him home and for three months never thought anymore about his head shape. Christmas time came and we had gatherings with family and were enjoying our time with them after having been on the road traveling. While visiting with my side of the family, my cousin, who is a mom of five, mentioned that we should ask the pediatrician about Zachary’s head since it did not look normal. I was admittedly a little shocked to hear her say that, and part of me dismissed it as ‘her opinion,’ but I wanted to be sure.
I made an appointment for Zachary and while waiting for the appointment day to come, I of course used Google. That is where I first learned of Craniosynostosis. After seeing many pictures of other babies, I noticed that Zachary looked like some of the photos, but his head was barely noticeable. When the time came, we took Zachary to the pediatrician, and I hardly had to say anything. We left the office with a referral to a neurosurgeon and notes on the referral saying possible Craniosynostosis.
The next opportunity I had, I called the neurosurgeon’s office and scheduled an appointment though they did not have any openings for a while since this was all over the Christmas holiday. Waiting for the appointment to come, I again employed Google. I found all of the support boards, all of the blogs created by moms of babies with cranio, and all of the photos and videos. It was almost an obsession. I had to know everything there was to know about his possible condition thinking that if he was officially diagnosed then I would be able to handle it better. We also in the mean time were sent for X rays on Zachary’s head that the pediatrician ordered. I was not able to go in the room since I was then pregnant with our third baby, but it went relatively well and the x-rays came back normal. Though I had done some research, we kind of relaxed since the x-rays did not show anything abnormal.
Day of the neurosurgeon appointment came in January 2011 and after a short visit, the doctor confirmed that Zachary had craniosynostosis. The suture between the bones in his forehead had fused to early causing it to form a ridge down his forehead and make his forehead have a triangular appearance. However, he said that it was a mild case and that though surgery was the normal form of correction to prevent pressure on the brain, the doctor wanted to see how Zachary developed and that he may not need surgery. He wanted to see us again in June when Zachary was almost nine months old.
At our appointment in June we were required to have a CT scan first. This was admittedly a scary experience. I was able to stay in the room this time, but there is just something about seeing your baby strapped to a bed and going into a big machine. He was calm though and the CT scan was done without sedation. Afterwards we went upstairs to see the neurosurgeon who said what I had feared, Zachary needed surgery. I held back tears while I heard all of the details of the procedure but left the office knowing that God was in control!
The next few months were very busy with deputation meetings for us but we nailed down a surgery date for the end of September. We also met with the plastic surgeon that the neurosurgeon would work with and were confidant that Zachary would be in skilled hands. We also knew that the hospital, Egleston in Atlanta, GA, would take good care of him.
Starting around July 4th, Zachary developed a nasty ear infection. We were in Texas, but were able to get him treated and the ear infection went away, we thought. In two weeks he had another ear infection, and then another. We began thinking that Zachary might need tubes but we were focused on his cranial surgery first. We celebrated both of my son’s birthdays a few days early due to Zachary’s surgery and had a great time with family and friends. We also met with the ENT who discovered Zachary had again another ear infection, confirmed that he needed tubes in his ears, and started him on antibiotics. Then it came to the week of surgery.
A few days after being on antibiotics, it was obvious that the ear infection was not responding this time. After a trip to urgent care we started a new type of treatment (that was supposed to be faster). As of the Wednesday before the surgery, Zachary still had a fever, and the surgeons decided to postpone the surgery to let him get better. I was absolutely crushed! It seemingly took forever to get the courage up to go through with everything and now we were going to have to wait even longer. Still we put it in God’s hands and knew it was for the best that we wait for the surgery.
After seemingly thousands of phone conversations with the scheduler we set a new date of October 28th. Everything was ultimately fine except for one thing, I was due with Sara, my third baby, on November 8th! The surgery was scheduled for two weeks before I was due to give birth and I was horrified at the idea of going into labor early. Regardless, we had no choice and just trusted God.
On October 10th, Zachary had tubes put in his ears. This was like a preparation for his cranial surgery. I was by myself at the surgical center and I stayed with him the whole time except for the actual part of the surgery. I was surprised I even held it together until they put him asleep. After I was escorted from the OR, I went into the bathroom and lost it. I could not imagine if it was that hard to leave him for such a simple out patient procedure, how could I ever get through a major surgery! I did manage to compose myself, the tubes went in beautifully, and Zachary was amazing through it all.
The week of surgery came and I admittedly had a roller coaster of emotions that week. I think I cried at least once a day. I was not worried about the outcome of the surgery. I knew Zachary would be ok in the end, but I worried about the little things. I wondered if he would be scared, I did not want him to see me upset before he went back, I was scared of going into labor since I was already making progress, and I was worried that he would not look like himself after the surgery.
The morning of surgery, Zachary woke up at 3am wanting to play! We had not gotten much sleep the night before because we were anxious and stayed up making sure all the preparations were ready. It still was a sweet time to be able to spend with Zachary before his surgery. We played in the floor and laughed a bit and then headed to the hospital. All of my fears of him getting upset because he was hungry and crying all the way there proved to be silly.
We had several people there with us even before the surgery so Zachary saw all of his grandparents and enjoyed playing with them. Our pastor and field director even came and prayed with us prior to the surgery. Before long it became real. We had to change him into a hospital gown, the nurses gave Zachary some ‘happy juice’ to help keep him calm, the surgeons came in to talk to us, and just like that, we kissed him and anesthesia took him to the OR. Zachary being in such a great mood that morning made it so much easier to not be upset about the whole ordeal, but seeing him being carried away, even though he was calm, I definitely had to fight the tears. I made it out to the waiting room and into the bathroom and there had my moment where I let it all out. But God still gave me a peace that everything was fine.
Through the surgery we had lots of visitors that were there to keep us company and to hear how Zachary was doing. It seems like time went by fast and before we knew it, we got the call that he was out of surgery. We were briefed by the surgeons who said that the surgery was definitely necessary and that he was having some inter cranial pressure on his brain, but things went wonderfully.
Next came the hardest part of all, seeing Zachary for the first time. All of the research, all of the waiting for a surgery date, all of the waiting the day of surgery, was all leading up to this moment. We were escorted into the PICU and when I saw him, I could not control my emotions anymore. It is never any fun seeing your baby in a hospital bed and hooked up to things that you do not recognize. I think my tears though were more of a release of emotions though than being upset about how he looked. I actually think he looked peaceful. He looked like he was getting the best sleep he ever had! He actually even woke up for a little while and sang with me (I was so happy he opened his eyes right away) and then was noticeably in pain. He spent the next 24 hrs on morphine.
There are no words to describe how hard it was to watch his face swell and his eyes swell shut and listen to him only whimper every time it was time for new pain medicine. My heart ached to hold him, but I knew rest and time was what he needed. Late Saturday, after his surgery Friday morning, Zachary scared us to death! Out of nowhere, and after over a day of lying in bed almost motionless, he suddenly flopped over in bed. Not only that, he started pulling off all his monitors and his head wrap. Zachary was back to his feisty self! I knew after that that the worst part was over and thanked God that he had given us an overall peace through it all! We were quickly moved into a regular room and little by little we saw improvements. I was able to hold Zachary, he began to eat, and even smile though his eyes were swollen shut. He actually did so well that we were discharged two days earlier than we expected. I breathed a sigh of relief knowing we had gotten through it all, even with me nine months pregnant with our third baby, and that God had taken care of it all.
We delivered Sara on her due date and it did not interfere with Zachary’s surgery. Hallelujah! Zachary is now almost three months post op and you would not think anything has happened to him. He is now walking, talking, and he roughhouses with his older brother. He is amazing. The whole experience definitely taught me how strong these babies really are and how we really have a great God! God supplied through it all. We had prepared for an experience that was much more terrible than how it ended. Though the road leading to the surgery was long, the results have been worth everything.