Austin – Lambdoid

On 2/22/2008 we tested positive for pregnancy.  After just going through a blighted ovum (pregnancy where the sac developed and the baby did not) we waited to share the news with everyone. Finally after plenty of blood tests and a six week ultrasound showing a baby we got excited! We had a due date of 10/31/2008. I was hoping for an uncomplicated pregnancy….not so much lol. We had a scare with Cystic Fibrosis and another chest issue. Both turned out to be just scares. Two bullets dodged.  Around 28 weeks, the Pregnancy Induced Hypertension started. Lead to a hospital stay at 30 weeks where I received steroid shots in case the contractions from the blood pressure didn’t stop. After that, pre eclampsia was the next scare. So they induced me at 10/9/08. (Thought it would be an awesome birthday).  22 hrs later my son was finally born. Austin Douglas Leon Grace was born a healthy 6lbs 13 oz and 19 ½ inches on 10/10/08. I had pushed for 3 hrs and he was a vacuum birth. Last chance before they resorted to c section, so of course his head was abnormally shaped. We stayed 2 days in the hospital then it was time to start our life as a family.
The concern with Austin’s head shape was always brought up with the doctors. Every time we’d have a checkup we would mention how it was still misshaped. They insisted that it was from the traumatic birth and would one day reshape. They suggested positioning him differently to help. We tried it all. Still no change. I guess when you put full trust into doctors, it’s not always bright.  At 2 years we finally got a referral to the neurologist.  After assessing Austin, he said that his head shape wasn’t that bad and follow-up in a year if it wasn’t round. He too thought positional plagiocephaly. Unless you looked as his head from behind or in the mirror, you couldn’t tell anything was wrong. Even some of our closest friends and family couldn’t tell the difference. Well his 3 year check up came along and his head still wasn’t right.  He noticed his left ear was pulled to the back. Finally the Neurologist did a CT scan on 11/17/11. We sat wondering what would become of it. Then on 12/1/11 I got a call that changed my life. Austin had Craniosynostosis. His left lamdoid suture had closed prematurely. We were being referred to a NS in order to surgically correct his head. My world fell apart. I felt like a failure as a mother.  I had medical training, I was a nurse. Why didn’t I know about this condition? Why had none of the patients I had seen in my 2 years of training and 3 years working ever had this? Why? Why? Why? If I would have been more pushy, insisted it get checked out sooner, maybe my poor baby boy wouldn’t have to endure this! Come to find out surgery would have been inevitable either way didn’t help!
I was crying hysterically on the phone to my hubby trying to explain what was going on. I was googling it all and trying to make sense. The doctors office had already set up a consult at CHOC. Well come to find out with our insurance we couldn’t go. Yes we have a PPO but because it is out of state some of the providers don’t take it at all. So the search began. I was on the phone for hours with the insurance company. They were no help in finding a hospital and neurosurgeon in the area. They said if we could get names then they could help. Finally I researched it and found out UCLA had a Craniofacial team. I called and got a hold of a wonderful lady names Gina. She said she’d do her part to see if it all would work. The next day she called me back and said it was a go. The PS wasn’t in network so we’d have to pay a little but everything else was covered! Such a relief! She set the date of the consult for the 14th and the Surgery Thursday the 15th of December! I was so overwhelmed! At this time I found all the lovely Cranio support groups!!! It made me feel not alone!! I spent hours on end looking at pictures and reading stories. I was referring family to them so they too could understand what was going on. Time was slowly moving. His consult got moved up to 12/6. That’s the day when it became real. The doctor explained exactly that he had to do to Austin. I held it all together until my husband was donating blood for surgery and I talked to family. Explaining how they were going to cut open his head, cut and rearrange his skull and fracture bone made me want to vomit! But it was reality.
After all this, it was time for surgery! The hospital was over 100 miles from home so we stayed close with family.  Getting to the Dr’s castle, as he called the hospital, I was an anxious mess! Pre-op was hard, he didn’t know what was coming. But the child life specialist helped up through! He had his play-doh! A whirlwind of Doctors, nurses, anesthesiologists and students came in. I was trying to remember names, ask questions and keep my mind on straight. It was time for them to take my boy to surgery. In a drugged state, he gave us kisses and waved goodbye as they whisked him away (7:30am).  He didn’t know, nor care what was next. It was relieving and scary. That’s when my husband and I broke down crying. Some student asked if we were ok (I wanted to yell at him “no dummy” lol) but just nodded and headed to surgical waiting. We had a great support group there. It made all the difference. We talked, tried to laugh and sat in silence passing time. At 10:30 am we got an update. They had made the incision at about 9:05 am and all was well. More tears and sighs of relief!! Then about 1:00 pm we got the news. Austin’s surgery was a success! They were glad they did it now rather than later cause there was thinning of the skull and the brain was running out of room to grow! They were closing up and we could see him soon! HE was officially on the other side!! More tears and hugs!! The next hour was hard. Finally around 2:00 pm they said we could go to the PACU and see our boy. Only one at a time! My husband let me go first! One of the hardest times of the journey is when you first see your child post op. Tubes, bandages and beeping machines. This is where all the time, medical experience and research came in handy. I knew exactly what he was going to look like. It was still hard walking in on him moaning mommy and crying uncontrollably. Once I was there he settled down and just wanted to have my hand on his chest. The staff was wonderful and let my husband come back too. He had a look of shock on his face and cried. He didn’t know what Austin would look like.  After about an hour it was time for him to go to his room in the PICU. After we got settled our nurse actually let both sets of Grandparents come up and see him. He was awake at times and asleep at times. They stayed on top of his pain meds and it helped tremendously. When they would wear off he would have fits and start pulling at tubes and wires. At a time they talked about restraints. Luckily it didn’t resort to that.  Around 6:30 that night was the first time I left his side. Family made me eat since I hadn’t all day. So easy to lose track of time and your appetite!  After that we were back with him and I didn’t want to leave again! That night we took turns at his side. He wanted mama most of the time, so there was little sleep. But we didn’t care! The next day he was sitting up playing with play-doh. The doctor took a picture of him because it was some of the least amount of swelling he had seen. Probably cause he’s a stubborn 3 year old and insisted on having the head of his bed up. He was only eating a little but the morphine was upsetting. By day 3 he was trying to jump in bed!! His bandages came off and we saw his new head and stitches for the first time. And his JP tube came out (yuck).  He requested hot dogs for lunch and dinner and we didn’t complain! He was off the morphine! Day 4 at noon they said it was time to go. He was doing way better than expected! We were so blessed to have an awesome staff to help up through this time!!!! The doctors and nurses were some of the best we ever came across!! That’s a lot coming from an ex nurse and EMT! If it weren’t for their compassion, I don’t think we would have made it through so easily!
We were so happy for it all to be over!!! Even though his head isn’t perfectly round and he may have surgeries in the future, I’m happy with his progress!!  After a week if you weren’t able to see his incision you would have never known he had major surgery.  He is now 5 weeks post op and doing awesome!!!