A TinySuperheroes story from a Super Mom’s perspective:
This is a bit of a long story so bare with me! We live in Texas. I have three rambunctious boys, ages 9, 3, and 3 months! I’m 28 years old, and my husband is 27 years old. So, here is our story about Super Dax (the youngest of the boys!)
My nine year old was found completely deaf in his right ear and almost completely deaf in his left. He had two tubal ear procedures by the age of five, which ended up not working long term. So, his pediatrician referred us to Dallas to a plastic surgeon for reconstructive ear surgery… Come to find out the whole inside of his ear was deformed!
Six months later we go in for Super Dax’s brother’s surgery (Super Dax is three weeks old at this time), and met with the surgeon again to go over the procedure process. Well, when he walked in, he immediately asked about Super Dax’s head. We had noticed it was oddly long and narrow, but it was never brought up by our pediatrician only by the lactation nurse who said, “Oh, it’s normal for babies. He will grow out of it.” Nope, that was definitely not the case! The surgeon then proceeded to ask me if Super Dax was premature, which he wasn’t, and if we had been told about his head, which we hadn’t.
He then began to tell me that my three week old baby had Saggital Craniosynostosis. That means the top skull bones were fused together during pregnancy creating a ridge where the soft spot should have been. He then said that there are some cases where it corrects itself, but unfortunately this was not the case for us.
Since he was about to do my oldest son’s surgery, he typed in his website on my phone, so I could read about Craniosynostosis while waiting. Mind you I’m there already worried for my oldest son, and then I hear this about my brand new baby! I didn’t show it, but I was a major wreck inside. His website spoke a lot about surgery before four months of age and how the surgery would be done. What I was thinking would only be a 3 hour surgery felt like a lifetime while reading all the information the surgeon had.
When we finally got home, I informed my husband, and he instantly got mad. He honestly thought the surgeon was just after money and took me for granted. When we went for the first consultation with the surgeon and he went into more depth of our baby’s condition and heard all of the horrible risks if we didn’t do surgery, my husband began to understand how serious his condition was. We were told without surgery our son would not only have a deformed head, but also possible blindness, very low IQ, as well as other defects. So surgery it was.
After several appointments to check on the severity of the skull, blood work, developmental stage, and overall wellness, we finally had a surgery date. April 16, 2019: the scariest day of our lives.
Surgery was scheduled for 7:30 that morning. My husband and I were very close to saying no and going home. It started to feel more real once they started preparing him for surgery. We finally said our goodbyes and gave Super Dax kisses and let him go with the nurses while trying not to cry. We waited for what seemed like all day even though it had only been 2 hours. The nurses finally said the surgery was over, and they were preparing Dax for the ICU while the surgeon wanted to talk to us. The surgeon told us that Dax had done wonderfully with no complications of any kind! And just as a safety measure to keep his vitals up, they gave him a small amount of blood.
We finally got to go to ICU, and let me tell you, we were happy for a moment. Once we got into the ICU room to see Super Dax it was so hard not to ugly cry. We were so happy he had pulled through, but it was so heartbreaking to see the way he looked and to hear him crying but couldn’t do anything except rub his back and talk to him. We were informed that he did not want to wake up from the anesthesia, so they had to give him a reversal. It ended up wiping out all of the anesthesia, so he was feeling everything! So, they had him morphine every 15 minutes to try to stay on top of his pain, which was another hard thing for us.
The surgery procedure consisted of the surgeons making two 2-inch incisions on his head. One at the top and one at the back of his head. They were going in to remove the ridged part of his skull and then cutting wedges into the side pieces of the skull to allow his brain to expand like it needed to. Our baby was laying in that hospital crib looking nearly lifeless even though he was far from it. After about 4 hours of being in ICU, he was finally able to come down off of having morphine every 15 minutes. It turned into every 2 hours to every 4 hours. On top of Tylenol in between.
My husband and I were so scared to leave him even though he had his own nurse that would stay with him the whole time that we weren’t in the room. The first night was rough. The only way he was allowed to breastfeed was if he could handle Pedialyte and keep it down. He managed to keep a 20ml bottle plus a half of one down. I was still super scared to try and hold him to breastfeed, but I did it! And it was after us holding him that he started to perk up and get better!
We got moved to a regular room after his arterial line was removed, and when we did it was so much better! Everything was so much better! He had minimal swelling which we were told was amazingly good compared to other babies who have had the same surgery. He was eating better as well! He was nowhere near as fussy; he did have his moments though. And we could finally breathe as well!
He does have to do helmet therapy, ( he received his helmet a week after surgery.) That was definitely rough as well! But here we are now, two months post op and Super Dax is doing wonderful! The surgeon told us at our last follow up that he is well above the healing curve for this stage of post op!! And our orthotist said his head looks textbook perfect!! We are so glad to be on the other side of things!! And so so glad our little Super Dax is doing so great!!