The First Surgery

At about three months of age, we noticed Cullan had a small bump on the top of his head. Our doctor, who is very conscientious about missing even the smallest thing, sent us for an ultrasound to check it out. It turned out, he only had a little extra bone in that area, perfectly normal. We believe with all our hearts, God gave Cullan that bump so his doctor would be conscious of his head and careful to check it closely at each visit. Because, that is exactly what she did. Her careful attention was about to change Cullan's life forever.

In April of 2007, Cullan went in for his eight month visit, all was normal except his head growth. His head had not grown at all. Upon close examination, she found Cullan's front soft spot was completely closed. She sent us for a series of x-rays at our local children's hospital where they found Cullan's metopic suture was completely fused. He had a condition known as metopic craniosynostosis. Our skulls are made up of several sutures in the back, sides and front. Cullan's front (metopic) suture had fused prematurely. Complications resulting from this are deafness, blindness and brain damage. The brain has no room to grow in the front and the eye cavity remains small resulting in damaging effects for the eyes and ears. Intercranial pressure is another threat that can occur at any time if left untreated.

Whirling from the news that our child had a life changing and potentially deadly condition, we began to pray and enlist any and everyone we knew to do so as well. God had surrounded our family with an amazing support system through our church. Our Sunday School family reached out to us in ways beyond belief. God was so real to us through this time, it sometimes felt like we could actually feel His loving arms wrapped around us. He ordered each and every step we were to take in the following days.

Things were moving fast and decisions had to be made quickly. We had no idea where to go, or how to proceed. One morning, I was in the kitchen praying about what to do, and asking God to guide us where we should go, when the phone rang. It was a pediatrician's assistant whom I'd never met telling me, this doctor (whom we had never met and did not treat our son or know him in any way) wanted to see our son. He had a close friend's child whom he had treated with craniosynostosis as a child seventeen years ago. He had walked their family through the process and wanted to help us. This close friend of the doctor's worked with my aunt who had casually mentioned Cullan's situation at work. His assistant scheduled us immediately to see him on April 10, 2007.

This God sent pediatrician looked at Cullan's x-rays (skull series) and confirmed his diagnosis. He began telling us the treatments available to us throughout our state. He knew each surgeon who did the procedures that Cullan needed, personally. He gave us his opinions of our best options and why. He then educated us on the questions we would need to ask our surgeons and what the procedures were like. He got us scheduled that very afternoon for the ct scans we would need, as well as our appointments with the specialist we would see out of town. We were somewhat in shock with all the information we were trying to absorb, but we were very much aware of God leading us each step of the way, where we had not known where to turn only hours before.
 
Upon arriving at our local children's hospital, Cullan would not be still enough for his CT, so an iv sedation was necessary to get the pictures they would need. I held him in my arms as they started the iv. As they put the medicine in, his little body went limp in my arms. I will never forget how that made me feel as long as I live. I cried like a baby. I laid him on the table, and they had me leave the room to wait. The anesthesiologist carried him out to the waiting room to me about twenty minutes later, still asleep. I was able to hold him as he groggily awoke. The ct pictures were by far the best portrayal we had seen of Cullan's condition. It was very easy to see how the skull was fused in the frontal portion and the other plates were not. We had everything we needed to head out of town to see the team that came so highly recommended by people God just dropped into our lives.


April 18, 2007
We packed the car and headed out for our three hour trip with our not quite nine month old and three year old to see the doctors who would help our sweet Cullan.
When we arrived, he showed us the ct scans and explained exactly what he would do. Cullan would be sedated and monitored closely throughout the entire procedure which could last anywhere from six to ten hours. A neurosurgeon would make the incisions through the skull, then the craniofacial plastic/reconstructive surgeon would do the rest. A hole would be cut to make space in the top front portion of the skull to allow room for the growth of the brain. The forehead and eye cavity would be totally reconstructed since it was too small for all the growth that would need to take place. Blood loss was a factor with the procedure, and with Cullan being so small, he would need transfusions throughout the surgery. The family needed to donate blood with Cullan's exact type to prevent complications. We were told his little head would be shaved so be sure to cut a lock to save before bringing him in.

Monday, April 30, 2007
We arrived the night before with both our mothers since we had an early appointment the next day. Monday was filled with all the pre-operative procedures. Checking his overall health, and blood work. We also met once again with the surgeons to go over exactly what they would be doing in the procedures. Cullan would be having four separate procedures done. For those who love knowing the technical side of things. I will list them: craniofacial reconstruction, bilateral canthopexies, bilateral temporalis muscle flaps, cranial base osteotomy.....what a mouth full!
We were able to look at pictures of other children to somewhat prepare ourselves for what to expect. We were aware there would be a lot of swelling as well as a drain tube connected to his head underneath the skin for the first few days. But, as many of you know, nothing can quite prepare you when it is your child laying there so helpless looking. Praise be to God for He is always sufficient and prepared even when we're not. That evening in the hotel, we played, we cut baby curls, we cried, and we prayed.......
 

May 1, 20007
The absolute longest day of our lives....Cullan was up at 1:00 a.m. The last time he was allowed to nurse before the surgery. Then off to the hospital by 5:30 a.m. We were back in the holding area with our sweet boy by 6:00 a.m. to wait. He played in the crib they had for him for a little while as we met each of the people on Cullan's "surgical team." The anesthesiologist, nurses, the surgical intern and again his surgeons. All were so helpful and reassuring. They assured us they would not take him away screaming. He could have some "happy juice" to make him drowsy for when they took him back. But our God was there we have no doubt and angels surrounded us the entire week. He is in the details, people, believe that! We lived it first hand! Our angel snuggled up to me and went to sleep. His nurse just carried him back and got his iv going with him none the wiser. We knew we sent Cullan with God to guide and watch over him. No, it still was not easy. But, we rested in the peace that He had brought us too far to desert us now.

May 2, 2007
All the surgical procedures were to begin at 7:30 a.m. He was back in the O.R. and by 8:30 they called the waiting area to let us know they had him asleep. 9:30 came and our surgeon came out to see us. My heart stopped. He let us know that they could not get an arterial line in his arm. This line was how they would monitor his vital signs through the procedures. The anesthesiologist wanted good readings, and they were not having any luck with his little arm. He informed us they might have to use the artery in his groin. They generally avoided that due to blood clots. They would let us know something in an hour. During this time, some close friends of our arrived and surprised us. They came all that way to wait with us through the surgery. Friends I believe God gave us for just this time. Their daughter was born with craniosynostosis just seven years before. We had gone to college together and were reunited at the church we attended one evening three years earlier. Cullan had not even been born at this time. They shared their story of what they had experienced with their daughter the night we "bumped" into each other. Little did we know how God would use them in our lives down the road....

Still no artery, he remained stable. At 12:30 the surgeon came out again to let us know they had called in a general surgeon to make an incision in his arm and they could see the artery. They felt like this was going to work. 2:00 came and the anethesiologist came to see us. The arm line had not worked. They could not get a return. They made an incision through the groin and sewed up his little wrist. He was losing blood and need more FFP (Fresh Frozen Plasma) he had already gone through the supply donated by our family. They would be using more from the blood bank. 4:30 Cullan is doing well, only a few hours left......5:15 Surprise! They finished sooner than they thought. Once they started it only took a little over 3 hours! Things went well. He would need to continue receiving transfusions for the next day. He was on a ventilator to help him breathe as well as to help him rest so they could watch the fluid on his lungs-all complications due to surgery. 6:05 p.m. Cullan was moving up to ICU and we could see him in an hour or so...! Finally, we would get to see our baby!

No matter how many pictures we looked at with the awesome childlife staff could prepare us for how our child would look. All the preparation in the world still did not prevent me from stopping dead in my tracks as we stepped into Cullan's room in the ICU. As my breath was taken away at the sight of my sweet innocent little boy, Steven took my hand and gave me the nudge I needed to keep moving. That first night proved to be the hardest and longest of the entire ordeal. The ventilator helped make Cullan's breathing easier. He had a lot of fluid build up due to surgery, and had a very strong rattle sound. At that moment we became very aware of all the risks due to surgery that were explained to us beforehand. They were truly a reality now. There were tubes for fluids and plasma. There were wires to monitor his heart on his chest. Wires on his feet. Drain tubes in his little head, to drain blood from the incision. An overwhelming sight....No one ever said Cullan was in danger, but his nurse for the evening did not leave our room the entire night. And as she left that morning, she said to the nurse who took her place, "We made Cullan better!" We know "God" made Cullan better. But, how much we appreciated faithful nurses whose skilled care helped our son.

Day 2, much better than day 1. Day 2 finds us with a groggy little baby still very heavily medicated to avoid pain. He is still receiving iv fluids, and the drain will come out later on. No more respirator! In my opinion, that is a huge step in the right direction. There is something so intimidating about those things. Scary with a capital "S". Swelling is still not at its peak. The head wrappings remain for the morning but do come off later that day. As a note to parents...most major changes happen during shift change in that two hour period parents are asked to be out of the room. I did not really like this arrangement to begin with. As a parent, you don't want to leave your child's side even for a moment, but it was hospital policy and it did force us to get out, get some air, shower and eat. All good ideas since pulling vigils like these are exhausting in more ways than you can even realize at the time you are experiencing them. If this is a burden you plan on carrying alone, I don't recommend it. God's Word says in Matthew 11:30 "For my yoke is easy and my burden is light." If we had not given this burden to God and carried it His way, "God style" it would have crushed us and been impossible. He is there waiting to carry us through if we'll let Him, and not waste valuable time trying to blame Him or being angry with Him for "allowing" it to happen in the first place...Something to think about.

During the day 2 shift change, the drain was removed and Cullan's head dressing were removed to reveal the incision and of course "THE SCAR." The horror stories we had heard and read about preceding this surgery concerning the scar were numerous and looming over our heads. We discussed the incision Cullan would be having with his neuro-surgeon. The neuro-surgeon actually performs the initial incision. There were several options, the one discussed was just straight across from ear to ear, and because it held the least amount of risk for blood loss, was the one chosen. However, for whatever reason Cullan ended up with the wavy incision done. We had asked about that in pre-op meetings since it seemed to result in less complications down the road, but had dismissed it because we certainly did not want to risk blood loss for the sake of vanity. Obviously his doctors agreed on choosing this route for Cullan after all was said and done-- we just hadn't expected it. So we are unwrapped and unhooked to the point that is allowed for now, all that's left is healing, healing, healing.

Along about day 3, Cullan came down with a horrific gas bubble I guess would be the best way to describe it. He screamed and cried. That day proved to be long and hard, both for him to experience and for us as we watched. Mylicon finally worked its wonders and relief set in. Cullan's nurse was amazing to us, she situated him where he could nurse several times a day just by lifting him, cords, lines and all out of bed. We pulled the rocking chair as close to his bed as it would go, and managed just fine. That seemed the most comforting thing we could do for him besides rest our hand on his belly or stroke his arms and legs for that comforting touch. He was so swollen of course he couldn't see us. For a baby, that had to be a frustrating experience to feel pain and hear familiar voices, but not be able to see or communicate.

Day 4 brought swelling down, we continued on in our little routine of singing, listening to music, reading stories to Cullan, praying over him, for him, with him......day 4 brought with it light at the end of the tunnel. This was also the last day to receive plasma transfusions. He did get them all day of day 4, and removed them that evening. Some children need more to get their levels back to normal, some less.

"When you see his little eyes, then you can leave ICU." That is what our doctors had us watching for on Day 5, and at the very end of the night, we felt for sure his eyes would be open by the next morning. He was responding to us and being more playful. The next day, his eyes opened just little slits and a huge smile was on his face. We laughed and cried, and ran to get his nurse to let her know we could move! Yeah! Late that evening, we moved down to our new room. We could both stay with him in that room. He had videos he could watch, goodies to eat, and not much longer before we could go home. We sat and played and rocked and felt good to know that God was healing our Cullan, that He had not left us for a moment and that He would see us through this until completion.