Eisley – Metopic

Eisley King came into the world kicking and screaming on January 13th 2012. He was so tiny yet a very strong 6 lbs 2 oz. He was beautiful! Don’t remember a whole lot after that, they knocked me out so I wouldn’t feel anymore pain. The placenta was sent off for testing and found out later that it had only been functioning at 3% and was less than half the size of a normal placenta, talk about a miracle!!! When I came to, I got to hold my sweet boy for the first time. I was in heaven. As I began recovering and caring for our son I couldn’t help but notice his head still had a funny shape to it, and I was concerned. So the hospital decided to give him an x-ray when he was 1 day old, totally freaked me out but I knew it was what needed to be done. Tests came back inconclusive and his pediatrician said she thought that it might just be some fatty tissue and that we could “keep an eye on it”. So I decided to follow her recommendation and just enjoy him. 2 1/2 months later, not much had changed with his head shape so, again, I became concerned and began researching head shapes in infants. I came across metopic cranio synostosis and immediately I knew that was what my son had. I called the pediatrician’s office first thing in the morning and asked for a referral to see a pediatric neurosurgeon to get a second opinion. Our pediatrician, concerned as well, agreed and immediately set up an appointment. We were seen a week and a half later. The moment the neurosurgeon walked into the room he knew right away that my son had metopic synostosis without even ordering our CT scan yet and went into detail what we would need to do in order to surgically correct it. I was in shock and disbelief. I thought at the very least we caught it early enough to have the less invasive endoscopic procedure done and here this man was saying we would need major surgery done on my baby’s head! Yeah, I pretty much “checked out” at that point and thank goodness my husband was there because I couldn’t recall a thing he had been telling me. We went and did a CT scan then left the office, our hearts heavy with grief. My entire family broke down and cried for days when we revealed the news to everyone. The most heart wrenching of all was telling our 10 year old daughter Chloe… no mother should ever have to witness their child break down like that. 2 weeks went by and we were seen by the plastic surgeon, who then submitted our case to our insurance. Then we waited, and waited, and waited. Finally, 7 weeks after our journey with this began, we were granted approval for his surgery. He surgery was scheduled for June 22nd at 7am at Children’s Hospital in Omaha, Nebraska. His plastic surgeon and craniofacial surgeon was Dr. Jason Miller and his neurosurgeon was Dr. Mark Puccioni, both of whom came highly recommend. The night before and morning of his surgery was very hectic. My husband and I were desperately trying to keep our heads clear enough to know what to pack and make sure everything was taken care of and that we arrived to the hospital on time. Above all this we were still trying to keep him happy and as comfortable as possible. Eisley was allowed to nurse 4 hours before his surgery, so he was beginning to get hungry again. After we arrived, we met his surgical team and discussed the surgery one last time, then when the Drs were ready the nurses took him away and we went out into the waiting room. Eisley had a full cranial vault reconstruction with a frontal orbital advancement. The surgery only lasted 2 1/2 hours total. There was an issue with getting things started, though, because the anesthesiologist had a real battle with trying to find a viable vein for his IV line. It took over an hour and 32 separate needle pokes before they were able to begin, he also had to have a blood transfusion. Other than that hiccup, his surgery was a success. He was in the recovery room for almost 2 hours before we were able to see him, but when we did it was a huge relief. He looked very peaceful and his pointy little head was gone, he was perfectly round, his surgeons really did a fantastic job and we were very pleased with the results. I was able to nurse him again and he was eating very well. As he progressed into the night he began to swell, it wasn’t until the evening of his 2nd day post-op that the swelling got really freaky. I can attest that no one, not a single article, picture, etc can fully prepare you for that. Eisley had a little bit of 3rd spacing and some pitting edema. I didn’t even recognize my own baby. He was having issues with his hemoglobin levels as they were dropping rapidly and getting dangerously low. All of his IV lines had to be removed due to them leaking. So I began to panic when the Drs said he would need another blood transfusion. I just couldn’t imagine them poking him all over again, this time with him being fully awake and experiencing it, so I begged the Drs to try and give him an iron supplement instead. The normal range for the hemoglobin to be at is between 10-12, Eisley’s was at a 6.1. Anything below 7.2, they want to give a blood transfusion, anything below 6.0 is extremely dangerous and risks putting extra stress on his heart, which his blood pressure got as high as 225 at times. I stayed up all night feeding him, but he wouldn’t eat, so the nurse and I took turns feeding him with a 2ml syringe in order to keep him hydrated. In the morning, after many strong prayers were said, Eisley’s swelling had begun to subside. By the late morning, he was able to crack open an eyelid and peek through his swollen face. He saw us and immediately was smiling and was happy once again. He even sat up on his own for the first time! It was one of the best days of my life and such a huge relief knowing he was finally coming out of it and on the mend. We stayed in the hospital for 5 days, once his hemoglobin levels were improving we got to go home. By the end of the first week home, his swelling was almost completely gone. I kept him on his pain meds for about 2 weeks, just giving it to him as needed. Now it’s a month later and he is doing great! His head looks great and his personality has just blossomed. He’s talking all the time and enjoys bouncing around in his jumper. Looking back, the whole situation feels like a bad dream, but I am so grateful we had the surgeon’s we had and that the hospital was less than 10 min from our home. I’m glad we went through it when we did and that it is all behind us now.