Bringing Home Ryan

Our sweet Ryan was the best kind of surprise we've had in our marriage. With our struggles to conceive and our preoccupation as new parents, we never gave it much thought that we could have another child so easily. I found out I was expecting when Isabelle was about 3 months old. I was a new mom, pregnant again and a full-time graduate student. Talk about busy. Thankfully, it was a very easy pregnancy. I had no morning sickness unlike with my first. Instead, I had horrible heartburn but thanks to science that is manageable these days with over the counter meds. He was a much more active baby and the kicks were strong and regular. The pregnancy went pretty quickly since I had my hands full and even though I was busy, I wasn't stressed with work issues or anything.

Ryan was a week overdue and my doctor's thought we were heading down the same road with him being a large baby. So, we went ahead and scheduled a c-section. I was a bit bummed ahead of time but when we arrived at the hospital another woman was in labor and literally screaming at her husband and moaning/groaning and I thought well, I'm glad that isn't me. It's a bizarre experience to walk into an operating room without having been in labor and knowing that soon you are going to have a baby with very little transition from being pregnant to mother of another little angel. This c-section was perfect. I didn't feel any pain like the first, just pressure and discomfort. Ryan was quite handsome, lots of black hair and very dark eyes! His features reminded me of Isabelle and hearing his cry was just as amazing. It's an instantaneous feeling of joy and shedding tears the minute your baby is delivered and you hear his first cry. By all accounts, Ryan was healthy. I remember the first time I saw Ryan, I asked if he was okay and if he was healthy several times. John asked what the deal was and why I was worried. I said I just felt like something was wrong. Everyone around me reassured me that he was perfectly healthy 9 lb. baby boy.

So, we went back to the room and my mom and sister brought Isabelle by to meet him. Ryan started nursing just fine. It was a great first day. I had thought that I had seen him discolored at times but nothing I could understand. At night, I was encouraged to sleep but I didn't trust myself to fall asleep with Ryan or for him to be unsupervised. This is completely uncharacteristic of me but I followed my instincts and told them to take him to the nursery. I was nursing every couple hours so he was never gone long. The next morning, I laid him down on the bed in front of me to check his diaper and he turned blue. I immediately pushed the call button and told her my baby is turning blue. There was no verbal response just a group of nurses running in, swooping him up and sprinting down the hallway to the NICU. I've never seen nurses move so fast in my life. I can still feel the silence in that room when it was all of a sudden just John and I. We had no idea what was happening and our mind took us to very dark places for the next week.

I wasn't able to see Ryan for a few hours until he was "stable." There was a team of neonatal doctors that would come and update us regularly. Ryan had a lot of tests from metabolic to MRIs to cat-scans and eventually EEGs. They had given him anti-seizure medication that first day per the neurologists evaluation. But, no one could really figure out what was going on with him for more than a week. It was maddening. About 24 hours after my surgery, I was walking the hallways every 2-3 hours from my room to his in the NICU. I thought it was the only thing I could control and the only way I could really help him. The nurses and doctors didn't want me holding him too much and even when I did he had to stay hooked up to all those wires so it was a challenge. There were moments during that week that I just can't verbalize. I don't know how to explain what it feels like to watch your infant struggle and wonder if he is going to survive. I remember the first night Ryan spent in the NICU, I was in so much pain physically and emotionally and thoroughly exhausted that I had to have help showering. Under any other circumstances, I would have found that embarrassing or feel like a weak mother but in this case those thoughts didn't even register at the time.

Time passed in a sort of fog that week. I spent every minute I could with Ryan. My nurses usually had to come find me in the NICU for my meds. I had a long hospital stay with a c-section and was given an additional day because of Ryan's NICU stay but after that, they kicked me out. I had the room until midnight and I think I stayed until then or later. I had to make sure Ryan had enough of my frozen breastmilk at the hospital for when I was sent home so I was still pumping every couple hours at home. Once I was home, we started a new routine where John would take me to the hospital at about 6 am. He would go to work and I would wait until the NICU opened and spend the day there. He would come pick me up for lunch and pick me up after work for dinner. My mom and sister were watching Isabelle at home and cooking meals and taking care of everything I couldn't. After dinner, John or my mom would go back to the hospital with me and stay there until about 11 pm. I was only able to be with Ryan for so much time because I had people who were taking care of me. Otherwise, I doubt I would have eaten anything and probably would have insisted the rules of bringing other siblings to the NICU didn't apply to me. (I could never get away with that. Getting in and out of the NICU required a high security profile and I couldn't walk down the hall for water or the bathroom without signing in and out.) In all seriousness, there were people who showed me such love and support and prayers for my son, that it made a huge difference. There are people who unexpectedly touched our lives and I will never forget it.

Ryan was given a 24 hour Video EEG after he was off any medication to study his brain and nothing unusual was shown so the EEG was to be continued until something was spotted. Everything else the medical professionals could think of had been eliminated so they believed it was his brain. 48 hours into this Video EEG, I call the hospital because it was a weekend morning and we were driving in. I couldn't wait another 20 minutes to find out how the night went. He had another "episode" and it was caught on tape. You never want your child to have an "episode," which was the medical term these folks used up to his point, but he couldn't be treated or come home until he had one. The neurologist was called once we got there and he came in for his weekend morning. He went over the EEG and kept Ryan hooked up while we sat there together. As we were sitting there, Ryan went into a full blown seizure. The neurologist would not let anyone intervene with medication or oxygen. We were terrified and powerless to watch his little body convulse. But, he came out of it. I said it out loud, "he came out of it." The neurologist looked at the nurses and said this is why I didn't want you to intervene. This mother needs to take her child home without thinking if she walks away for a minute or if the baby is in his crib that he can suddenly die. We now know he's having seizures and he will survive. Finally, someone looked me in the eye and said he will survive this. Complete relief.

In order to leave the hospital, Ryan had to be seizure free for 3 days. So, he was started on anti-seizure medication and we were able to bring him home by the end of the week. Bringing home Ryan was an amazing day. It took me a long time to make that drive back to the hospital without crying along the way. Ryan's seizures are still undiagnosed to this day which is a great thing. As far as brains go, mysteries in children are typically better than a diagnosis. He's been seizure free since he left the hospital. He's been off his seizure medication since he turned 7 months old. He's hit all the major milestones, walking was a big one. He's now starting to talk. Once he is 3 years seizure-free, we can say he no longer is considered to have epilepsy. I couldn't have asked for a better outcome from where we are standing today. Ryan is a huge joy and an easy-going, sweet child.