PrettyLittleRanch

Hi there! I am Lauren Power. A teacher, turned counselor, turned counselor educator, turned play therapist, turned stay at home mom. I live with my husband and three boys on 6 acres in south Texas. My parents live behind us on 15 acres. We have the prettiest little south Texas ranch and a beautiful sisterhood of cattle (more on them later). I’ve been wanting to write about our little life here for a while, just had a hard time getting it going amongst babies and everything life has thrown at me lately. That being said, I found a place to start.

Carter was born September 13, 2018 via c-section and spent 2 weeks in the NICU. Since this little one came into the world I have have learned so much. I have learned to greatly appreciate modern medicine, I’ve learned the limits of my heart, and I have learned to be patient and trust God’s plan. I have also learned words like polyhydramnios, bradicardia, and the latest sagittal craniosynostosis. Don’t ask me to pronounce any of them.

Leaving the hospital empty handed after delivering Carter was possibly the hardest day of my life… That is, as of now. Carter was diagnosed with Sagittal Craniosynostosis and will be having surgery January 2nd. I’m certain handing this sweet baby over to the surgeon will top leaving him behind one week after he was born.

I want to share this process, his progress, and his story for a number of reasons. Awareness of Craniosynostosis is number one. I didn’t have any awareness of this condition and I know if I had, I would have asked questions much sooner. Craniosynostosis typically happens in utero, effecting approximately 1 and every 2000 births. I noticed something was a little different from the beginning. His little head wasn’t as round as his big brother’s. I assumed it was because of the excess fluid and/or the c-section. I trusted medical professionals to be knowledgeable; however, this was missed.

At Carter’s two month pediatrician appointment his doctor made reference to his head shape. She used words like “normal variant”, “cosmetic”, and encouraged me not to worry. She also told me that she knew another little boy with “this shape” and he was “very smart”. She said “a surgeon can do something about it, but a neurologist will tell you ‘nah”. After that I wanted to not worry, but that’s just what I did.

About a week later Carter was diagnosed with RSV and he ended up in the hospital. While in the emergency room the nurse examining him rubbed his head and asked if I knew his fontanels were fused and said “did his pediatrician talk to you about this?”… “Well… yes, she talked to me… but no, I didn’t know his fontanels were fused…” So, then I really did worry. He ended up being admitted for observation and suction for RSV and we spent two nights in the hospital. I asked the hospitalist about his head, she said his head would “normal out” by the time he was 18 months old. I still couldn’t feel settled about it.

I messaged a friend from high school that I knew was a nurse in neurology. She encouraged me to get a second (technically third) opinion, just to be certain. We followed up with the pediatrician the following week for the RSV, I mentioned his head-shape again. She said “you don’t want him to have surgery do you?”… “well, no, but…” I went home and worried and researched. I didn’t want him to have surgery, but if he needed surgery… I needed to be certain I was making the right decision for him. I found a news article about a little boy that’s head looked a lot like Carter’s. The article portrayed a more troubling portrait of this condition and it gave me a name: Sagittal Craniosynostosis. I did want any good millennial mom would do, I found the boy’s mom on Facebook and sent her a message and asked where her son had been treated. I also researched Craniosynostosis, that’s when I found the Craniosynostosis Clinic at Texas Children’s Hospital.

I called about an appointment, however needed the referral from our pediatrician. I took Carter in the next day, she felt his head and soft spot, said it was narrow, and said she would submit the information to the referral office. She call me a few minutes after we left and said she called a neurosurgeon she knew. He told her “I does need to be fixed” and she confirmed we wanted the referral for Texas Children’s in Houston. I was anxious, but relieved we were finally getting somewhere.

I followed up continually until I knew the referral was sent. I got an appointment for a month and a half out… The sweet mom from the article I found put me in the Facebook support group for families with children who have this condition. I began to read about other’s stories and I learned about the different surgery options. If Carter was to have surgery before he was four months old, as close to three months as possible, the surgery could be a less invasive endoscopic procedure. Now I was on a time clock, he was already three months old. I called TCH back to see if there was anything I could do to get a earlier appointment. I was given a nurses voice mailbox. I got a call back and a request to send pictures via email. The next day I got a phone call, and the following day he had an appointment.

They fast tracked him because of his age. At this point I was more anxious than I had ever been, because now it was real. Nick and I drove Carter up the next day. I researched like crazy while we traveled the 4 hours from Corpus to Houston, I read everything from medical articles to forum board. I learned this is certainly more than “cosmetic”. Left untreated, cranial pressure, headaches, developmental delays, cognitive impairment are all possible. Poor self-esteem, social isolation, and inability to find a helmet that fit are all certain.

His appointment and CT scan confirmed his diagnosis and surgery was scheduled for two weeks later. At this point I was in full delirious mommy mode.. worry, anxious, fearful, delirious mommy mode. I seriously didn’t know how much my heart could take. I had been in action mode for so long, now I just had to sit and wait for two weeks. Cue the search for the best possible coping skill: I could drink, but I’m a terrible drinker; I could exercise, but ‘nah’; I could eat (which I had already been doing), but that would just make my pants tight and make me feel worse… I decided to write.

So, here we are, in Houston for the third time. Carter’s surgery is tomorrow. I am less terrified, but we’ll reevaluate in the morning.

XO

Lauren