Becoming Elliot's Mom

My journey into motherhood hasn't been easy. My first pregnancy ended in a miscarriage sometime around 8-10 weeks, right as the anxiety of impending miscarriage was starting to decrease. The data shows if a pregnancy makes it to 12 weeks, it will likely be a successful pregnancy. I never even got to hear a heartbeat. My first ultrasound was at 10 weeks and no heart beat was found. At that time, they weren't sure if I had truly been pregnant, wasn't as far along as I thought I was, or if I'd had a blighted ovum. Confirmation didn't occur until after I had a dilation and curettage procedure due to not passing all the fetal tissue on my own.

It wasn't until this miscarriage that I really began to think about my own fertility. As an adult with untreated ADHD, I had long been inconsistent with oral birth control. And yet, despite being sexually active for years, I'd only had this one pregnancy.

We didn't try for kids again for a couple years. The miscarriage left me feeling jaded and I also was fearful of another miscarriage occurring at that time. I started a graduate program in Nursing the following August, a program that I felt I was unqualified for and nearly didn't send in the application for due to my fears. In a cruel twist of fate, my Vanderbilt application was due the day before my D&C procedure. I'll always be thankful that my husband was my voice of reason in sending in the application that week. I think, left to my own devices, I would have just wallowed in self pity and not sent in the application. That program changed the course of our lives and has been instrumental in me feeling that I can be a great parent for Elliot.

It took us years of trying and the help of a great gynecologist for me to get pregnant. Through fertility appointments, we discovered that I wasn't ovulating consistently. I was started on clomid and just before our last cycle of clomid, I had a positive pregnancy test. We found out early, before I even missed my period, due to me testing frequently since I was on the clomid. On August 5th, I finally had a positive pregnancy test. We celebrated by going to Cracker Barrel that evening, and just as we left a small rainbow had formed after a small burst of rain. Finally, we were going to have our rainbow baby. It was a sweet moment, that was quickly ruined by a bout of nausea that caused me to lose my entire dinner.

Everything was going well overall with my pregnancy, at about 12 weeks we completed genetic testing which all came back negative and we were told we were having a boy. My pregnancy with Elliot was overall uneventful until my gestational diabetes test. I failed both the 1 hour and 4 hour tests and was started a medication to help control my blood glucose levels. At the same time, my OB diagnosed me with mild polyhydramnios. Due to these complications, I was getting frequent ultrasounds throughout the remainder of my pregnancy. At one of these ultrasounds, I was told that I was being scheduled with the maternal fetal medicine team (the high risk team), I assumed it was due to my gestational diabetes and polyhydramnios, and was given no other explanation for why. At my maternal fetal medicine ultrasound, the tech stated that we would be checking Elliot's feet due to suspicion that he had a club foot. I was shocked, no one had even mentioned this as a possibility. Thankfully, this was ruled out at this appointment and I no longer needed to see the high risk team.

As my pregnancy progressed, we completed ultrasounds frequently to watch Elliot's growth due to the gestational diabetes. At our 20 week ultrasound he measured around the 60th percentile, but as my pregnancy progressed he was measuring greater than the 95th percentile. Due to his size, my anatomy, and the risks associated with vaginal birth complications due to polyhydramnios we made the decision to move forward with a planned cesarean section birth. I was scheduled to have the c-section on the morning of March 27th, at 37 weeks and 3 days pregnant.

On the morning of March 27th, we got up early to be at the hospital by 5:30 am. Jack and I were both a ball of nerves. We updated everyone throughout the process. We were wheeled back to the operating room a little before 8 am, and at exactly 8am Elliot joined our world. As they finished working on me, Elliot was taken to the nursery to be checked over and within the hour we were reunited in the recovery room.

Here's where our hospital stay started to vary from what I assume the norm to be, I say assume because this is my only experience bringing a child into the world. Elliot's pediatrician, Dr. Fraser, came to discuss his newborn examination with us. He began to tell us he noticed some peculiar findings in his exam of Elliot. His blood sugar level was low, but this is often the case for newborns of women that had gestational diabetes. Dr. Fraser told us he noticed that Elliot had several birth marks, and although these are often benign, Elliot's were all around the midline of his body. Coupled with noticing Elliot's left side of his body appeared larger than the right, Dr. Fraser suggested these could indicate possible genetic disorders. He also told us he had bilateral hip dysplasia and laryngomalacia. Dr. Fraser explained to us that the difference in Elliot's body size was called hemihypertrophy and that it could be associated with tumors so they needed to further testing on Elliot. Before we even left the hospital four days later, Elliot had been put into a Pavlik Harness for his hips, had an echocardiogram, abdominal ultrasound, cranial ultrasound, upper airway scope, a tongue tie repair, and a genetic microarray serum test completed.

This is how our journey of parents of a child with a rare disease started and was our first step into truly uncharted territory.