PrettyLittleRanch

I have received a few messages from families with babies recently diagnosed and awaiting surgery. The fear and anxiety around this process is incredible overwhelming. I remember not being able to eat, sleep, think, or even function. I would tell Nick, “ask me after January 2nd”, Carter surgery date. I remember reading one father’s comment “someday’s I forget he even had surgery”, and I remember thinking “How is that even possible”… While I certainly haven’t forgotten about Carter’s surgery, the emotions around the surgery have subsided. I am at a place of gratitude for God’s grace, family support, and compassion from everyone who as prayed and sent well wishes. Because of this, I’d like to update on our sweet little warrior.

This has become our new normal. The trips to Houston, the helmet, people that stare, and the kind and curious ones that ask. I don’t mind people asking, I want people to be aware of his diagnosis for the future mother, fathers, and babies that will go through this. I want people to know, he’s doing great, I want people to be aware of Craniosynstosis, and I want families on the other side of surgery to feel supported.

Dr. Lam told me after Carter’s surgery “treat him just like a normal baby”, easier said than done considering he had quite the new soft spot; however, that is what I have strived to do.

Carter’s appearance changed immediately after surgery, we knew to expect that. The ridges and bumps made me glad to get the helmet, not to mention, the fear of big brother getting a little too close or too rough. When the surgeon released the fused bone the brain immediately expanded causing his shape to be more rounded. The helmet is to insure he continues to grow in that pattern and to protect his now quite large soft spot. The change since then has been slow. We were told to expect him to be in the helmet 6-8 months.

We picked up his first helmet January 10th and his second March 20th. The time has flown by and we are beginning to see the light at the end of the tunnel. As I am writing this we have about a month left in the helmet, fingers crossed. His head shape today is dramatically different. He looks just like a “normal baby” and I know his brain has ample room to grow.

I’d like to revisit the concept of “cosmetic” and the idea that this was “elective”. I have thought a lot about this over the last few month, and truth be told, am just now solidified in my peace with it. Going into the first appointment after surgery, Carter’s pediatric asked “and they asked you if you wanted the surgery, because its just cosmetic”… there was that word again. After all we had been through “just cosmetic”. I took this as an opportunity to educate her about the potential for pressure on this brain that could cause anything from headaches to developmental delays, the fact that he would likely never be able to were fitted hats or helmets, and the absolute fact that KIDS ARE MEAN.

We had the potential to correct something early and minimally invasive what would completely change his life. I read the storied of families and children that were not so fortunate. While I whole heartedly believe in teaching our children to see people for who they are and that our differences are what make us beautiful, I also remember being teased for being overweight as a child. KIDS. ARE. MEAN. And the years in school with peers are a large factor in who you will be come. So, if I had the ability to correct a defect, in a minimally invasive way, that Carter would never remember, absolutely I am going to do it. Y’all, he left the hospital the day after surgery with Tylenol and a smile, and while the helmet is an annoyance, it is also his protection from his brother!

Getting past the fear related to surgery was by far the hardest thing I have ever done. When I hear from other families my heart breaks for them and I know what they are going through. I am writing this in part to help bring some light, and because I want to pay forward the support and knowledge I was given on the other side of surgery.

Thank you for those of you that check in on him. Please let me know if you have any questions, I am an open book about his diagnosis and progress.

Lauren