Knowing Noah
Our story started out like many others do. We had been married for a year and a half when we decided we were ready to start our family. I tracked my fertility using an app, and we got pregnant right away. At the time, we had a couple different friends dealing with infertility issues, so we were especially thankful it happened so quickly. Around 12 weeks, we took a spring break trip to Dauphin Island. We decided the beach was a perfect place to take a picture for our pregnancy announcement.
The next 8 weeks were as typical as could be. I enjoyed watching my belly grow and following the size of Baby N on my app each week, growing from the size of a blueberry to a pear. When it came time for our 20-week ultrasound, we were so excited! We had not yet had the chance to see our baby and we knew it would be special. We had invited my mom and sister to come along to the appointment with us.
The day of the ultrasound, everything seemed to go as expected. The tech did have a hard time getting a good picture of our baby’s heart, but the little nugget was moving around like crazy, so we had no inclination that anything was wrong. We went back to the waiting room and waited to meet with our doctor as my mom and sister left to run some errands. As we sat there waiting, I excitedly sent pictures of the ultrasound images to our close friends and family. We were asking for their predictions on the gender since we did not intend to find out until Baby N was born.
We waited and waited. And then waited some more. Maybe we should have known waiting this long was not typical? Maybe we were so innocently naive? We sure did not see the intense dark cloud that was headed our way.
The doctor called us back and the first thing I remember noticing was the look on her face. Then I noticed a piece of paper on the counter with some things highlighted in yellow...after a closer look, I noticed the things highlighted said ABNORMAL. My heart sank.
Our doctor explained there were a number of things that were unexpected on the scan and we were referred to the U of I for a level II ultrasound to get a better look. At this time, all we knew was that there was likely something wrong with our baby’s heart and brain, but we didn’t know anything specific. We had no idea the first person to greet us at the U would be a genetic counselor.
The level two ultrasound, amniocentesis, and fetal echocardiogram that followed confirmed our worst fears. It was determined our baby had excess fluid in the ventricles of its brain (hydrocephalus) and a rare congenital heart disease (truncus arteriosus) due to a large deletion of chromosome 14. We were told there was little chance our baby would make it through childbirth and, if it did, would likely live for only a few hours to days. After being given all of our options, and without thinking twice, we made the decision to continue the pregnancy, knowing it was very likely we might never get to see our baby alive.
Since this was our first baby, we were very worried about whether we would have a genetic condition that would predispose us to a recurrence of this condition in future pregnancies. We were told this deletion likely occurred as a very rare sporadic event at the time of conception. Even though it was a huge relief when our parental chromosome study confirmed that the 14q deletion identified in our baby was a new (de novo) event, it did not remove the intense anxiety as we entered into the great unknown of the next 20 weeks. We quickly learned that you never know how strong you are until being strong is the only choice you have.
Our friends and family were very supportive, and we will forever be grateful for that. They helped us to live our lives as normal as possible, despite the fact we knew we had a lot of really tough days ahead. Some of the hardest times during those last weeks were the good-intentioned comments in the line at the store - “Oh my gosh, when are you due?! Do you know what you’re having? You must be so excited!” I always responded to those comments with grace (they had no idea what I was going through), but it always felt like a shot to the heart as I uttered a kind response through a forced smile.
Just a few days before my 30-week mark, my sister and I were at a Friday night county fair concert. I remember feeling Baby N dancing around in my belly every time the bass guitar played. The next day I didn’t feel as much movement, but I also didn't sit down all day. On Sunday, I again had a busy day but that night really started to worry about the lack of movement. I got out my home doppler and couldn’t find a heartbeat. We called our OB office and they had us go to the ER, where it was confirmed that Baby N’s heart had stopped beating.
They sent us home to rest and told us we would be admitted to the U of I the following morning for an induction. After a rather long, painful labor and beautiful, yet devastating birth, Noah Andrew made his silent entrance into the world on Tuesday, July 19th at 9:08 pm. We were comforted in knowing our little boy did not have to suffer and was at peace. All members of our family got to meet him, hold him, and get photos with him. This feels like even more of a gift after this last year, knowing many moms and dads had to experience their losses alone.
My motto throughout this entire experience was “Thy Will Be Done.” I truly believe this was all part of God’s plan. I hated every moment of the pain and suffering. I hated the utter bitterness and despair I felt. But I found strength and hope in Him and His promises. The name Noah means ‘rest comfortably,’ which was our one and only hope for him. In the Bible, God says to Noah, “The rainbow that I have put in the sky will be my sign to you and to every living creature on earth. It will remind you that I will keep this promise forever” (Genesis 9: 12-13). To this day, a rainbow in the sky is a Godwink that Noah is watching over us. Our rainbow babies (Jackson, 3 and Caleb, 1) will always have their big brother as a guardian angel.
IN HONOR AND CELEBRATION OF NOAH, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE NOVOTNY FAMILY, THANK YOU FOR YOUR GIFT.
