On my way to work this morning, I reflected on everything that has happened over the last 12 months. 2012 was a tough year for my entire family, and looking back I can’t figure out how we made it out alive. So let’s recap:
Sometime in January or February, I got the results of my quad screening. Jaxson was high risk for Trisomy 18, a syndrome that typically results in the death of a baby in their first year of life. After deliberating with Jayson and talking with the doctors, I opted to not do an amniocentesis or a blood test for further confirmation. No one saw anything on the ultrasound that showed he might have the syndrome, the blood test was really expensive, and I didn’t want to take a risk with an amnio only to find out that he was fine. I was going to love this baby for as long as he’d let me, no matter what the outcome was.
During those ultrasounds and discussions, it was discovered that Jaxson would likely have a heart defect. So sometime in March, a specialist from Children’s was brought in to review an ECG. While we were thinking that Jaxson wasn’t going to have Trisomy 18, now we were faced with the possibility of him being born with Hypoplastic Left Heart Syndrome. The defect requires three heart surgeries by the time a child is 3, the first surgery taking place in the first week of life. Arrangements began to be made to have Jaxson transported directly to Nationwide Children’s the day he was born so that he could be monitored in the NICU by specialists and neonatologists.
At an ultrasound in April/May, Jaxson was measuring small. I wasn’t surprised, neither Jayson nor I are big people and Jeffrey was a small baby too. But given everything we had already gone through, the doctors decided that I should undergo weekly growth checks and have non-stress tests twice a week to monitor Jaxson’s growth and his heart. I didn’t worry about the growth checks, but on the days when I had non-stress tests, it was tough. Some of those days the appointment went fast because Jaxson cooperated and gave the doctors what they wanted to see. On other days the test would take an hour or two because they would have to give him a jolt (place an instrument on my belly that vibrated) to wake him up and make his heart rate go up. Those were the days I got worried. But the doctors weren’t concerned as long as the heart rate did come up and stayed up for so many seconds before dropping back down.
Then came the hardest week of my life. Jaxson decided that he wanted to come early. On July 1st, I went to the hospital with contractions. I wasn’t dilated far, but the staff at Riverside determined that I was in labor at just under 37 weeks. The problem? There were no NICU beds anywhere in Columbus. If they couldn’t stop my labor, they were going to have to transport me to Cincinnati or Cleveland to have my baby because having Jaxson travel after birth was not an option. And Riverside stated that they were “not equipped to deal with a baby like Jaxson.” How reassuring. Thankfully, with the help of a drug used to stop labor combined with a tad bit of dilauded, my labor was stopped. I decided to stay home from work for the next two days because the contractions never really stopped. They just slowed down. So on July 4th when my contractions ramped back up, I took my time getting to the hospital. I wasn’t convinced I was back in labor because my contractions never stopped. At least, I wasn’t convinced until we dropped Jeffrey off at my parent’s house and I was curled up in a ball on the floor. These contractions were WAY worse than anything I experienced in the 36 hours I was in labor with Jeffrey. So we ended up back at Riverside and lo and behold I was 3-4 inches dilated. I have never seen a bunch of doctors and nurses move as fast as these people did. I got to the hospital around 1:30pm. Jaxson was born at 3:51pm.
I will never forget that day for the rest of my life. Of course, I will never forget the day Jeffrey was born either. He just HAD to come during a Steelers game. Guess it was inevitable that he would be daddy’s boy and a Steelers fan! But as I lay on the operating table, I was so nervous about how the spinal was going to affect me and what the neonatologist was going to tell me about Jaxson. When they pulled him out, it took way too long (in my authoritative mommy opinion) to hear Jaxson’s first cry. It was probably five seconds, but it felt like five minutes. I breathed a small sigh of relief. Jaxson was whisked to the other side of the room to be examined. Jayson sat by my head and held my hand as the doctor came over. They started the medication for his heart. His lungs were clear. The back of his head is flat. He has a hole in the roof of his mouth. He has low muscle tone. He was very matter-of-fact. I was stuck where I was, so I told Jayson to go see him. Tears rolled down my cheeks and the anesthesiologists nurse wiped them off with a tissue and patted my arm. She was so sweet. Jayson didn’t get any pictures because there was so much going on. Jaxson was taken to Riverside’s NICU until transport from Children’s came to pick him up. I was taken to recovery and wasn’t allowed in a room until I could move my legs. I remember fighting through the drugs, trying to get my body moving as fast as possible. My family came to see me and Jayson kept me company. It was only 45 minutes before I could move and they let me go to my room. The nurses were pretty surprised I got through it that fast. I just wanted to see my baby. I hadn’t seen him yet. Family and friends came up to my room to wait with me and about an hour later the transport team from Children’s showed up with Jaxson in an incubator. They pulled the side down so I could hold his hand, kiss his cheeks and stroke his head. I was not allowed to hold him. I only got about five minutes before they took him away.
I spent that day and the next day at Riverside recovering from surgery. After my second night, the doctor’s cleared me to leave. It’s the fastest they let anyone out who’s had a C-Section and the doctors knew my situation. They knew I had been moving around without a problem, forcing myself through everything to get out of there. They did everything they could to help me get out as fast as possible. I hadn’t seen Jayson since the day before because I wanted him at the hospital. Jeffrey had been with my parents, and I hadn’t seen him in 2 days either. My second mom, Mary, was nice enough to drive me from the hospital to Children’s so I could see Jaxson. My mom, Jayson and my best friend, Amanda were waiting for me. When I got there, I received the best news: I was allowed to hold him. No one had been allowed to hold him yet, but they let me.
I held Jaxson as long as I could. Jayson had gone to get food and everyone else had left us alone. Then it seemed that everything hit me all at once. I got nauseous. I had to get out of there. I didn’t want to leave Jaxson, but I knew he was in good hands. And there was a little boy at home who needed his mommy. So Jayson took me home where I ended up sick, but then Jeffrey cuddled in bed with me and we watched a movie. The next morning I felt more like myself and we started a routine of me going to the hospital in the morning for a few hours to talk with the doctors and come home in the afternoon to spend time with Jeffrey. Jayson would go early in the morning or late at night, whatever fit his schedule.
Somewhere along the lines (I’m not entirely sure when), it was communicated to us everything that was going on with Jaxson. I couldn’t deal with it early on, or maybe I just didn’t want to because I knew nothing was happening right away. We had to get through that first weekend. They took Jaxson off of the heart medication to see how he would do. He came through with flying colors, which meant no heart surgery. I still had a hard time going to see him with all of the wires, IVs and monitors around him. Not to mention the trip up to his bed. I was in a wheelchair for awhile before I could actually walk that far, so I couldn’t go by myself. Jayson was so amazing during those first couple of weeks until I could walk. He would take me there, wheel me up to Jaxson’s bed, and then go home to hang out with Jeffrey. Then he would pick me up or one of my parents would come to see the baby and take me home.
Since I started this yesterday and I have only gotten through half of the year, I’m going to stop for now. Look for part two of the 2012 recap tonight or later this week.
