Kaitlyn was born on June 11, 2005 at 36 weeks weighing 8lbs 4oz. She was early most likely due to her bigger size and my bi-cornuate uterus. She had been lying on her left side down my left side and head down for a long time now. Even in her ultrasound pics we could see the enlarged forehead. I remembered wondering if there was something wrong or was it just the ultrasound. I never voiced my concern. Kaitlyn’s birth was natural and quick. By the next day I saw her swollen ad somewhat twisted looking face. I had some concerns and remember asking Dr. Gray if there was something wrong. Was she deformed? I hated saying the words, but wanted to know. It was explained that it was in-utero positioning and labor that caused some twisting and swelling and it would go down.
We went to a referral appointment with the specialist, plastic surgeon, Dr Ross. We knew that we weren’t interested in any kind of surgery because Kaitlyn’s forehead was just a little out of shape because of inutero positioning, as we were told. We just thought maybe a helmet or wrap would help put it back into shape sincer her head was still growing and shaping. So, needless to say, we were a little blindsided with the news. When the first Doctor came in and examined her, I could see the look on his face and it just seemed like bad news without words. He then went to get Dr. Ross and when he walked in, his first words were, “I can see that you’re right,” nodding to the other doctor. “Right about what,” I asked.
Then, he sat down and began to tell us the news. That there was something wrong. The word ‘craniosynostosis’ was said. I don’t think I heard anything but listened to everything. I can’t count how many times he asked if he should stop and let it sink in and maybe discuss more later. I just kept saying, “No, I want to know everything and we can go from there.”
Surgery! The one thing we said we wouldn’t be doing was the only option now. Her head wasn’t still growing. Not properly. So what now. That’s it, surgery, on her head. My perfectly healthy, active, smiling, laughing, loving baby needed surgery. Now this is what I found to be the hardest part. Its our choice. Our choice? She’s healthy. She developmentally right where she needs to be, if not a little advanded. This condition isn’t life threatening. It’s mostly a cosmetic reason? There is a fear of complications later on if let go without surgery, but again, it’s mostly for looks. As society we’re this vain that surgery was needed. I kept thinking it was wrong of me to even this this way. A choice? A choice. It wasn’t really a choice. She would be deformed.
The website www.CAPPSkids.org and all the people a part of it gave us so much druing the waiting period and after. Information, support, experiences, stories, successes, preparedness, friendship, patience, kindness and a real connection. We were also in touch with other Manitoba families which was amazing. To talk to people who had the same doctors and nurses and in the same hospital made it a lot easier to put our faith in the medical team we would be handing our daughter over to for surgery.
We arrvived at the hospital shortly before 6:30am. Proceeded through the registration and on the day surgery to wait. The hardest part of all is the waiting. We had to see if her runny nose caused enough concern to stop the surgery. They checked her over and with no signs of a cold, cough, or fever, she was a go. Now, we waited to see if there would be a bed. We had a bed, but there was emergency neurosurgery needed on a newborn and they would take the 7:45am spot (our time slot). Kaitlyn would go in after that. We wait soe more We get the call to giver her the first needle that’ll dry her out (stop saliva production) for when she is intubated. She was making the funniest faces with her tongue and mouth trying to wet her mouth and lips. Poor baby!
We headed up to the OR waiting room. The Aesthesiologist met us there and talked a bit more about her runny nose and said they were ready to take her. We walke with her as far as we could, which was just outside of the OR doors. Gave her kisses and told her how much she was loved and handed her over to them. We were upset, but not as much as I though we’d be. I think the trust, faith, and confidence we had in Dr Ross and his team gave us that moment of calm. Kaitlyn was scheduled to be in the OR of 6 hours.
10:30-12:30am was prep (gas to sleep, IVs, head shaving intubation) They had a hard time getting her IVs in – chubby hand and feet… lots of pokes
12:30 started surgery and we waited in the PICU waiting room. We got updates every hour and half and they were always positive and reassuring
5:15pm surgery done and we see her as she goes by into PICU. She’s breathing on her own but has oxygen. Mommy breaks and Daddy is her rock
5:30pm settled into PICU. Doing well and resting comfortable
8pm pulling at her oxygen, levels at 100, so it’s removed
8:30pm first morphine since surgery. Check her hemovac drain – only 9mls and vitals are very good!
Our initial thoughts – her symmetry looks so much better, eyes are swollen, but looks great and even. Forehead and eyebrows impressed us immediately. We saw Dr. McDonald right after surgery, but Dr. Ross had to go straight to clinic so we didn’t see him on the 7th. We left shortly after 9:30pm
Day two she slept soundly through the night and had very little pain medication. Dr. Ross came to see her. She was able to open her right eye little, was looking great. Very little was coming from the drain, so he ordered glucose water and recommended release from PICU. She had her first drink of glucose water at 10:30am and tried formula at 12pm. She was given Tylenol to ease the pain and morphine if that wasn’t enough.
Kaitlyn said ‘mama’ when she woke up and tried to sit up. At 2pm we got the call that she had a private room.
Into the evening, Kaitlyn didn’t settle for the rest of the evening. Fussy, pain, teething, overtired, wants to sit up and get out of sling. She’d been drinking very good though the day. At 9pm she was given Tylenol, but it didn’t work so at 10pm, she was given morphine and a bottle. By 10:30pm she was finally asleep. We found a musical crib light that plays the same as her swing at home, YAY! Mommy slept in the room and took care of feedings, changings and moving her foot when the IV pinched and the machine beeped. Kaitlyn was up every 3hrs or so to eat which was back to her normal schedule.
By the morning of the 9th, Kaitlyn’s left eye was very swollen, but she could still open her right eye. Dr. Ross came to see her that morning. He took the bandages off and removed the hemovac drain from her head. She was put on 24hrs of antibiotics before she could go home. He says she’s looking and doing great. Kaitlyn gave Dr. Ross a high five! Her first high five ever!!
She started getting fussy, so we gave her a sponge bath, but it didn’t help. She cried uncontrollably for 20mins. She was given morphine to calm her down. Daddy came in and calmed her down and rocked her to sleep. Kaitlyn had a good day after that. Eating, sleeping, playing… She could sit up better now and be held easier without the hemovac.
On Feb 10th, Kaitlyn puled her bandages and hat off twice though the night. She was playing at 8am and began pulling the bandages off again at 8:30am. Once she knew how she didn’t stop trying. The left side of her face and head was very swollen, but her head had a beautiful round shape! The incision looked good, very smooth and clean. At 8:30am she had her last dose of antibiotic. Dr. Ross came in a little later and was a bit concerned about swelling and not being able to open her left eye and were asked to stay for a couple more hour and he’d come back to check on her.
One year has come and gone. Kaitlyn is doing fantastic.
Every follow-up visit confirms her head isn’t shifting back. She has a bit of a
twist in her nose that she may want o have repaired when she is older,
approximately 16-18 years old. We are now on our yearly visits with Dr. Ross
and Dr. McDonald. Developmentally, Kaitlyn is right where she needs to be. Her
speech is even a little advanced. I just think she needs to be able to argue
with her brother. :)
