I had seen pictures of babies post-cranio surgery in my research and (mental) preparation for the procedure. I have seen people after they have received significant amounts of pain medication, when they are so still that it is almost frightening. But nothing really prepared me for seeing my baby, my own flesh and blood, shortly after having surgery for his craniosynostosis.
To see his eyes which were filled with joy just a few short hours before, now barely open. Peaceful, but yet, so lifeless. To see him partially unaware of what was happening around him. To see the various cords attached to his body and tubes with various fluids connected to machines. To see the fresh stitching down the center of his head. The bulging and stitching, although neat, so much lengthier than I expected. Nothing can prepare you for that. My heart was broken.
A part of you is so grateful that your child has successfully made it through surgery, but the other part of you is overwhelmed. You start to wonder when and how your child is going to “go back to normal’. What you can do to make it better for them. You feel stuck because you know that it is mostly time that they need to get better.
After about an hour of being in the recovery room, they brought my son upstairs to the PICU. We were placed in a room with 3 other babies where there was assigned 24 hr nurse surveillance (this wasn’t an insurance thing, just a hospital policy, I guess). He was a bit cranky in the room, but once he was able to be held and nursed he was a bit better. I was committed to literally nursing my child back to health. In the transition, even with assistance, the IV came loose and blood started to splatter everywhere. They were able to manage it and get things cleaned up before moving the IV to his arm (later, after taping and creating splints over and over unsuccessfully, they realized that the arm was an issue and returned the IV to his foot).
I was completely shaken, here I was trying to help, and I was making things worse. I felt like a complete screw up.
I was told that nursing (successfully) would be a sign that his appetite was returning and that he was recovering, so I was going to get the baby fed as much as I could. I also heard that holding him upright would reduce some swelling, so we tried to do some of that too. During this time, his pain was managed with a morphine infusion as well as a rotation of painkillers. Swelling had started and didn’t seem too bad, but they let us know that it gets worse.
The first night was long – really long. I slept on a reclining chair beside the bed as monitors beeped and signals went off every time a baby made a move that disconnected or indicated a change. The room was dimmer than it had been earlier, but still so bright. Although the curtain could go around my son’s bed for privacy, it didn’t do much for me. Every now and then as he slept, he’d startle himself awake, and it could take him a while to settle again. He woke up to nurse at one point and wouldn’t go back to sleep… just looking around at all of the lights and the monitors, playing with his blanket. After that feed, there were some coos and some babbling, some bouncing and I got a smile…just a small slice of his personality returning.
My husband came to join us early the next morning. Sleep had been pretty miserable for him too, but we were determined to be the happiest parents that we could muster for him. At about 8 am, he was removed from his morphine drip. The IV, however, remained in. He was swollen all over, but his face was particularly puffy. We spent the rest of the day trying to entertain him when he was awake, whether that meant singing, reading or playing with him. At only 5½ months, there is not much that you can do to truly entertain them, but you do your best.
His grandparents came to visit so that we could get a break and get out of the room a bit. I don’t remember a lot of details of being at the hospital, but I do remember desperately wanting to get out of the room and clear my head. I really don’t like hospitals (I don't think most people do) and I was starting to feel suffocated in that room. I decided to take a walk/go on a little adventure (as I had no real clue of how to get to where I was going) to the coffee shop in the adjoining hospital. The walk was long, as I went up and down elevators and through winding hallways, but I just needed time.
My thoughts were muddled, my head was cloudy and I needed to not look at my child in that state for a few minutes. I needed to get myself together before I fell apart in that room.
So I did. And I went back a bit better than when I had stepped out. Ready to act happy, cheerful, and be positive for my son. Apparently, kids feed off of your energy, so if you act uncomfortable and scared, they start to do the same. I wanted to exude all things positive, so that he could hopeful, no matter how nervous I really felt.
That evening, at around 9 pm, we were informed of the possibility of going home the following day. His head had not swelled as much as anticipated (sometimes the head can swell very round like a balloon or a ball) and the blood work that had been ordered looked good. The night was not that great (again). We were still in the room with the lights, noises, uncomfortable chairs and little privacy. However, we had hope that the following night we would be in our own bed. I had expected that we would at least be there until Monday (we were told that we might need to be there for 5 days), and although I was pretty decent at sleeping in less than ideal situations I was exhausted on all levels and wanted to be home.
My son’s sleep was not great that night either, in fact, he was up most of the night, which meant I was too. I was exhausted. My husband also slept poorly. At some point, my son did fall asleep, and looked so peaceful, a definite improvement there at least. We were all smiles that Sunday once he woke up. It was so good to see his sunny personality again. I had heard that surgery could change a child, and I was hoping and praying that it would not be the case with our little one.
The nurses prepared us for the very real possibility of going home that day. His vitals were good. He was feeding better and his mood was improved. During the night, he was also not showing a lot of signs of pain. By 10:30 am he was removed from his scheduled painkiller rotation of Advil, with Tylenol as needed. The rest of the time we were at the hospital he did not need an extra dose. He was also able to be removed from his monitors during the day if one of us were with him.
By 12:45 he was removed from everything. Earlier, the neurosurgeon called in to the hospital to find out how he was doing, and the neurosurgeon at the hospital (the one whom we had seen initially for assessment), came in to see him and said that he was doing great. Before 2 pm, we were officially discharged! It was such great news. My kid was indeed a warrior.
They say that kids are resilient, that our cranio warriors can soon go back to normal, and it is like nothing ever happened. I would say that was mostly true. We left the hospital with some instructions and an appointment date with the orthotist. You see, surgery is just one part of the treatment for Sagittal Craniosynostosis when treated endoscopically. There is another crucial part to the treatment. Helmet therapy, which was scheduled to be for a year (more on that in another post).
We were elated, feeling so blessed to hold our child in our arms again. Getting to sleep in our own bed again, use our bathroom again, and settle in to our old life and routine. Except that things did not go back to normal. Things were different. And different takes a lot of getting used to…
"Once you've been through tough times, you can only become stronger" ― Alesha Dixon