I just want to start this post off by saying THANK YOU. Seriously, thank you from the bottom of my heart. I have felt so much love and peace through these hard times, thanks to amazing people like you.
I haven’t written a full explanation on what’s going on with Deuce yet. Why did I wait? First of all, because we were processing. Secondly, because I wanted to wait until we had all the answers (although, I’m learning we may never have all the answers). So I’m going to start at the beginning.
When Deuce was born, he came out sunny side up. We noticed that his head looked a bit deformed when he was only a day old. When we mentioned it to the nurses, they said it was most likely due to being born sunny side up and that it would go away in the next few weeks. So every day, we waited for his head to “become normal” with no luck. When he was three or four weeks old, I asked a good friend of mine (who happens to be a nurse) what she thought of his head. She said the same thing as the nurses in the hospital, but that if it wasn’t “normal” by 2 or 3 months to mention it to our pediatrician.
My husband and I knew in our hearts that something wasn’t right, and thought that worst case scenario… he would have to wear a helmet for a few months to help fix his head shape.
His two month well-check came and by this time, there was a huge bump on the back of his head, his forehead was protruding, and his head shape was long and narrow. At his check up, the first thing we asked about was his head. His doctor took a look, felt his skull and soft spot, took some measurements. Then she said, “Unfortunately, this is not normal. He will need surgery.” My heart literally sunk. My body went numb. My ears started ringing. The doctor continued on for a few minutes and I didn’t hear a word she said. She gave us paperwork referring us to a neurosurgeon. I asked her to write down his diagnosis on paper because it was such a long word and I knew I wouldn’t remember it. She told me she would only write it down if I promised not to google it. I lied and told her I wouldn’t. She wrote down sagittal craniosynostosis. As we walked to the car, I started crying. Through tears I told my husband, “I thought worst case scenario, he would have to wear a helmet. This is so much worse than I ever thought it would be.”
What is craniosynostosis? Cranio is a birth defect in which one or more of the joints between the bones of your baby’s skull close prematurely, before your baby’s brain is fully formed. In Deuce’s case, the sagittal suture formed too early, probably before he was even born.
We informed our family members and close friends of his diagnosis and asked for prayers. Our loved ones joined us in praying for a miracle. And I googled. I shouldn’t have, but I did. A few of my google searches ended in sessions of sobbing with my husband consoling me.
Fast forward to yesterday…
We met with Deuce’s neurosurgeon and he confirmed the diagnosis of sagittal craniosynostosis. He told us that Deuce will need surgery in the next 2-6 weeks. He said that because we noticed it so early, he would be able to receive the less invasive surgery (after 6 months of age, they have to do a much more invasive surgery that can be a lot harder on the baby’s body). He told us all the causes, the risks, the benefits of the surgery, the nitty gritty details. We asked a million questions and he gave us all the answers we needed. But the most important answer was this: Deuce will be okay.
Yes, he has to have surgery on his skull.
Yes, he will wake up and be in pain.
Yes, we will be absolutely miserable watching our baby boy go through all of this.
But, he is ALIVE. He is BREATHING. His heart is BEATING. He is BEAUTIFUL. And he is LOVED.
The next steps are 1) meeting with the plastic surgeon next week, 2) getting a surgery date – we will most likely know next week, 3) waiting for his surgery date to come and praying for peace until then.
Initially, I thought the worst case scenario would be Deuce having to wear a helmet. Then I thought the worst case scenario was him having surgery. But the truth is, worst case scenario… He wouldn’t be here with us anymore. I’ve read about all the horror stories, what can go wrong during surgery, what can go wrong after surgery. I’ve read the articles on how kids with this condition can experience late milestones and developmental delays. The FB posts of parents who say that craniosynostosis caused autism in their child. I’ve read it all. I’ve seen it all. And honestly? I don’t care. As long as my baby is here with me, we will be okay.
For those of you who have asked about donating to help with Deuce’s surgery, we so appreciate it (times a million). We set up an account for him that you can visit HERE. Once again… thank you, thank you, thank you.