I had another blog that I recently let expire. The domain name didn't feel fitting to our family anymore and I was ready for something new. But reinventing my blog and having a fresh start seemed overwhelming... what should my premier post be about? Well, since I've already made it clear on my About the Hive page that I'm not some super mom who is here to impart my wisdom on the world, I thought, let's just give a snap shot of our lives. One particular area of our lives has taken maybe not a lot of my time but a lot of my brain power, emotional strength etc.: Truman's head.
Truman was born with a very long head and we affectionately began calling him Egg Head. It was no biggie in the beginning. Lots of newborns have weird heads. My husband had a pretty big head as a baby too. But by 2 months it still looked abnormally long and I began to worry. I was assured at his 2 month well child visit that a long head was not a symptom for anything I needed to worry about... 4 month checkup was approaching and it still looked... long. So, I called my doctor's office and changed Truman's appointment to see the doctor instead of the nurse practitioner we had seen last time who's opinion I was beginning to doubt.
Before I could even address my concern my doctor noticed Truman's elongated head and said he was going to send me in for an Xray. He said he was probably fine but we wanted to make sure that the plates in his head hadn't fused together too early. I didn't ask any questions... I was too shocked. (Also the rest of the Hive was at Lucille's dance center and I needed to pick them up... this appointment lasted over 2 hours, not because of his head, just because we were waiting to be seen that long.)
2 days later Truman and I went in for his Xray. That's when it started to feel real. Having to give my 4 month old to Xray technicians and listen to him cry as I stood behind a lead wall shouting out "it's okay baby, I'm right here. I'll be right there to hold you. You're okay, I promise. I'm right here." Was heartbreaking. It probably lasted 2 minutes but it felt like an hour.
4 days after that I got a call from a nurse at my doctor's practice. The Xray was suspicious for sagittal craniosynostosis. We needed to do a CT scan.
The outcome was not surprising to me. I had researched online to try to determine what they were looking for in my son, what possible outcomes would be, etc. Needing a CT scan made sense, in fact, as I did further research I realized we probably should have done the CT scan in the first place as Xrays are pretty much always inconclusive.
It was horrifying nonetheless. The only cure for craniosynostosis is surgery.
I scheduled a CT scan for 3 days later. I was told they would have to sedate Truman . Then I was told they wouldn't sedate Truman but wanted him sedated, so I was supposed to pick up a sedative to give him myself. I drove to the pharmacy to pick it up the day before the scheduled scan. It wasn't ready. Then they decided it was such a small dose, they didn't feel comfortable making it. (Why did they wait to decide this until I was standing at their counter waiting for it when they had been given the prescription a day and a half ago... I don't know!) This led to an afternoon full of phone calls trying to figure out my next step and finally a call from my doctor at 9:45 pm telling me the radiologist at the hospital has agreed to give Truman the sedative and the CT scan would go on as scheduled. In the morning a nurse called and told me to arrive an hour early for the sedative, no problem.
We get there at noon for our 1:00 appointment and were told our doctor (who is now on vacation) never sent in the prescription for the sedative but maybe I can nurse him to sleep and they will still be able to do it? I mean... I can try.
As you've probably guessed, at this point I'm very unimpressed with my doctor's office. However, one of the CT scan technicians totally turned everything around. She made sure I was comfortable when feeding Trumy, explained he just needed to be still a few seconds, got materials rounded up to swaddle him. She was fantastic. I found out after the scan her 9 year old son had sagittal craniosynostosis. She told me Truman's head looked a lot like her son's. She showed me pictures of her son now and told me all the ways he was excelling. I feel truly grateful to have met her.
I did successfully feed Truman to sleep, but he woke up when I laid him down. And cried. Luckily, all swaddled up, he stayed still, but I cried the whole time he cried. My husband thought I was crying because I was afraid he'd move and we'd have to do it again. I was crying because I could feel his fear. How scary to wake up, see your mom above you for 2 seconds saying "it's okay bud, you're okay" and then she disappears. You're being swaddled by strangers, sent through this strange, cold machine... he had no idea what was happening.
I was a wreck. Thank god I brought my husband with me this time. The thing is... it was a CT scan. People go through so much worse with their kids every day... how do they do it?
4 days later a receptionist at my doctor's office called to say that the CT scan revealed Truman did not have sagittal craniosynostosis. I asked her if that's a permanent diagnosis (lack of diagnosis, I guess) or if his head remains abnormally shaped if we'd need to check again. She didn't know. Nor did she know if there were any other things I should be concerned about if craniosynostosis is indeed ruled out. She said my doctor mentioned discussing the next steps with me at his 6 month well baby checkup in December.
So... we're not sure if this chapter in our lives is closed or just being put down for a moment. We're switching doctors. The communication through this process has been a joke. (Plus this same practice messed up 2 of Lucille's vaccines, and both Lucille and Lennon's lead tests.) I have so much confidence in the doctor we are switching to and I'm so happy she is currently accepting new patients.
I have done research online and know that sometimes a normal CT scan doesn't catch craniosynostosis and a 3D one is needed. I know sometimes all the sutures are open at 4 or 5 months but may still close a few months down the road. I know there are other skull conditions that can be fixed with helmets. I hope none of these apply to Trumy, but I am doing everything in my power to know for positive.
Anyways, there it is: my first rambly blog post about what's going on with our hive. I'll update the blog when we know more and I promise to try to make future blog posts more organized and concise. My thoughts and feelings on this issue make it impossible to communicate in a sensible way.
