About a month ago Ruby caught a cold. It was a snotty and painful and resulted in a barky cough. She woke up in the middle on the night on friday night/saturday am and by sunday it hd gotten much worse. We ended up taking her to the children’s hospital because of the sound of her cough. They diagnosed her with croup, gave her a steroid and sent us home. The cough got significantly better but she was still very sick. On tuesday night we tried to feed her but she didn’t have an appetite at all. I tried to latch her twice in the middle of the night and she bit me hard both times so I figured she needed to rest and to let her sleep. She was waking on and off every few hours after that. I ended up needing to pump because I was getting so engorged and she wouldn’t nurse. We spent all of wednesday morning on the couch where she was extremely lethargic, pale, and sleepy. She kept flopping her head on my shoulder and it seemed at times she was struggling to breathe. I was worried. I kept trying to feed her some pumped milk from a bottle (something we haven’t done in months) and she ate about 1.5 oz which, in and 11 hour time frame is just an unacceptable amount of nutrition. I called Health Link and they advised we take her right away to the children’s hospital again. So Cam finished up what he was working on, rushed home, and by around 4 we went to emerg. They took us in right away and started Ruby on and IV for fluids, blood tests, x-ray, heart rate monitor, and they stuck a bag to her vagina to catch urine for a sample (less invasive than a catheter) Ruby was PISSED. So mad. After a few hours of the fluids she perked up a bit but was still very sick. Her oxygen levels were great but her heart rate was very high and her lungs sounded “crackly”. Her x-ray came back showing possible pneumonia and so she was treated for it with an antibiotic. They ended up transferring us to Peter Lougheed at around 2:30 am. They blocked Ruby’s IV and allowed us to drive her there ourselves so we didn’t have to wait for an ambulance. On the way there though Cam started to feel sick. He had to pull over to barf, and if any of you know Cam well, you know that he’s a big puker and this isn’t completely out of the ordinary. He was clearly having a hard time and feeling so sick. I grabbed him by the shoulders and loudly said, “I’m sorry you don’t feel good but I need you to PULL YOURSELF TOGETHER! We’ve got bigger things on our hands right now.” And he did. He breathed through it and we made it to the hospital. I’ll add that we had been up all evening/night with Ruby and didn’t eat lunch or dinner so we both were starving.
PLC was great, they were expecting us and had a room ready. Once we got there and kinda settled, Cam and I decided it was best if he went home to get some rest since he was expecting to work the next day. Our room in paediatrics had a crib and a bed and that’s it so there wen’t room for all 3 of us anyways. I tried my best to get some rest with Ruby but it was difficult with nurses and doctors coming and going. I was scared and exhausted and having hard time keeping track of time and remembering everything that was happening to Ruby. By the wee hours of the morning I started to get stomach cramps. I frantically called a nurse in to hold ruby so I could run to the washroom. Ruby was still attached to an IV and I couldn’t bring her with me anywhere-not that I wanted to. I started to get super sick and I knew right away that it was the stomach flu. By about 7 am I called my mom and asked her to bring me some food/drinks/and a change of clothes etc. She ran to my house and saw that Cam was still in bed and phoned me, I told her to wake him and get him to work, thinking he had overslept, but alas, he had the flu too. He had been up all night barfing. Thankfully, my mom was able to take the day off work and come be with us in the hospital. She hung out with Ruby the whole day while I was sick in bed unable to move.
I’m telling this part of the story because of two reasons. First, I find it hilarious. It’s one of those events as a parent that you will remember for the rest of your life. By the time it was all said and done in the hospital, Cam, Ruby, and I all laid up in our bed moaning and groaning. It was a sight. My mom offered to stay the night that night and we didn’t even have the energy to respond. We were pathetic, sick, helpless people. It was awful at the time, but now looking back it’s freaking hilarious. The second reason is, if we hadn’t taken Ruby to PLC when we did, we would have never found out about Cranio Synostosis.
Ruby’s blood tests came back fine, she was septic which apparently was what they were worried about (??) She did have quite a bad ear infection so they sent us home with amox and wished us well. However, the paediatrician who was in duty during our stay came and chatted to me. He checked Ruby out many times and kept genie-in-the-lamp-rubbing her head. She was pretty pissed about this and made it known with screams and cries. he asked me if anyone has ever said anything about her head. I told her about her instrumental birth, the MRI for her hematoma, and her history with torticollis. He told me it appears to him that her two back skull plates have fused prematurely, meaning, as her brain and head grow, it will be restricted in the side/back. Her two front plates and the one plate at the very back were all separated like normal, but the other two were fused. He promptly asked if he could refer us to a specialist at the Children’s who would give us more answers. I agreed, though slightly annoyed. I asked if her head issue had anything to do with her being sick and he said oh no it’s just something he noticed. I Just thought, ok well thats being put on the back burner for now, I have more important fish to fry.
We had our appointment with he specialist who is a plastic surgeon. He took one look/feel of her head and agreed, she has Sagittal Craniosynostosis. He told us all about it. He said it doesn’t have any impact on her brain/growth/development/health. It’s purely an issue about looks. He couldn’t tell us what she would look like as an adult or even an older child, but said her forehead would be even more prominent and the back of her head will narrow and be pointy. He said this “deformity” is completely spontaneous. I asked if it had to do with her birth or her torticollis and he said no. It was most likely fusing while I was pregnant with her. He said theres no real explanation and it’s not hereditary or genetic. It affects 1 in 2000 babies and Ruby’s form is mild-moderate. That being said he recommended we do the surgery. He reassured us that he does about 4-6 of these surgeries a month and the greatest risk is blood loss, so they prepare with blood for a transfusion. Now the surgery itself is very invasive. They essentially cut her head from ear to ear, open up her scalp, the take off the top of her skull. He then physically bends and reshapes her skull using his hands. He may saw off a bit of bone in order to open up the plates again and make more space. He will also use dissolving plates and screws to help achieve his shape. This information is equal parts fascinating and horrifying. He reassured us that he’s been doing this for 9 years and hasn’t had one case of death or brain damage. The babies spend 4 hours in surgery, 1 day in ICU, then 5 days in hospital. Then they are sent home with tylenol for pain management. He said they bounce back incredibly fast. Their incision usually heals after 2 weeks and then hair grows back over the scar in time. isn’t that just incredible?!
We’ve debated and have made the hard decision to go through with the surgery. My greatest fear would be if we said no and in 13 years she comes home from school crying because some jerk kids made fun of her big funny shaped head. I would be heart broken. There is a window when it comes to this surgery and it’s closing fast on us. She will be 11 months old and the doctor said he doesn’t do the surgery on babies older than 12 months. So we needed to act quickly.
I obviously have a lot of emotions about this. Im terrified. I feel ashamed for some reason. I also feel lucky that we were at PLC the exact time we were and were given this opportunity. I always knew Ruby’s head was very large and a bit oblong, but I always figures it was from the damn forceps and in time would round itself out. All the doctors and nurses we’ve seen in the last 9 months have never mentioned anything about her head shape or her plates. We would never have known if it wasn’t for our hospital visit. So in ways I do feel thankful. But I am still so scared. I’m very worried. I feel confident about our decision and I do trust this surgeon, but this is my baby. She’s so brilliant and sweet and gorgeous and I don’t want her to go through this invasive surgery. I don’t want her to be in pain. This has been a very difficult time for me, emotionally, JUST as my self-care was great and my mental health was strengthening. I feel constantly knocked over by something. Ruby’s first year of life has been the most emotionally and physically taxing year of my life and I do wonder when we will ever catch a break.
I am not a religious person, but I do know some of my reader and friends are. If you pray and or even believe in the power of positive thought and energies, please, send them our way. I promise I’ll take good care of them with much appreciation.