Where to start? (word of warning…as the first post, this might be a long one!)
I guess it all started when we got pregnant! We were very newly wed, and a little nervous about getting pregnant so quickly. The nervousness soon gave way to anticipation and excitement as we eagerly awaited the arrival of our new little one. We decided not to find out the gender, and to be surprised in the delivery room at our first glimpse of our first born. We did the doctors appointments, ultrasounds, and everything else typical for an expectant mother. At one of our doctors appointments, it was recommended that we get an extra ultrasound, as our baby was measuring quite small. “Just as a precaution”, everyone said.
We had an ultrasound on Friday, May 13, 2011, and were told that the doctor would come in and discuss the results right away. We anxiously waited in the consultation room, feeling as though the world was on-hold for the moment. The doctor came in, and sat us down (never a good sign). He explained to us that our baby was not growing properly anymore inside the womb, and that this could be caused by any number of factors. He went through the options, including chromosomal abnormalities, but ended by stating that he thought it was most likely a problem with my placenta. He did, however, advise us that we were to go directly to the Foothills hospital, where I would receive two rounds of steroids (to help the baby’s lungs develop) and then I would have my baby by c-section (the baby was presenting breech) on Sunday, May 15. He reassured us that this was the best course of action for the baby, and that sometimes it is better for the baby to continue growing out of the womb than to stay in it. I was 33 weeks and 2 days along at this point.
Shocked, Curtis and I went home to collect the things I would need for my hospital stay. As we began to wrap our mind around what this would look like, I had the nagging feeling come back to me that had been there since very early on in my pregnancy: “something’s not right”. I couldn’t shake the feeling that there was something wrong, and my emotions were on edge.
The next two days were a blur of steroid shots, ultrasounds, fetal heart monitors, and more ultrasounds. On Sunday, May 15, 2011, the nurses told me that my c-section would be taking place that night. Relieved to have some resolution, I tried to relax before the surgery, but found myself unable to do so. Part of it was the nervousness over having to have surgery, and another part of it was the nagging feeling of an impending life-altering moment. Finally, after what seemed like an eternity, they took me up to the operating room. The team prepped me for surgery, brought in Curtis, and before I knew it, Curtis was watching them deliver our first born, and excitedly delivering the news to me that it was a baby boy!
Our precious little guy was whisked off to the NICU right away (Neonatal Intensive Care Unit) and I was stitched up and wheeled into recovery. I met our little boy a couple of hours later, and Curtis and I decided to name him Jake William. He was 3lbs 5ounces, and looked so tiny in his little isolette in the NICU, attached to tubes and monitors of all kinds. Exhausted and still unable to move my legs, I was wheeled into my hospital room, and tried to get some rest.
The next morning, as I was getting ready to go and see my little Jake, a doctor came into my room. She sat me down on the bed, and with no warning, explained to me that they needed to do genetic testing on my son, because they suspected that he had Trisomy 21, also known as Down syndrome. I remember that moment so clearly. I was speaking to her calmly and rationally, however I felt as though I had an out-of-body experience. I could see myself looking down at myself talking to her, and I couldn’t believe this was actually happening. It felt like a nightmare, and I kept anticipating the moment in which I would wake up and sigh in relief as I came back to reality. That moment never came.
I called Curtis, who was at home, and as soon as I heard his voice, I lost every remaining thread of composure that I had. Everyone tried to tell me not to worry until the tests came back, but I knew. I knew they were positive. The karyotype confirmed the diagnosis a few days later, and we were left reeling with the news that our precious little miracle has Trisomy 21, or Down syndrome.
The first few days were hell. I cried and cried and cried. Not for what Jake is, but for the grief over the loss of how we thought his little life would end up. I am not going to say it was easy. It was the hardest thing that I have ever gone through in my life (and am continuing to go through). I think, however, that if it is possible, I love our little Jake even more! As I sat in the NICU, holding my little guy against my chest, I fell in love. His diagnosis simply ceased to exist, as I just held him and rocked him and looked at him as my child. My beloved.
He is the light of our lives. He is so precious, he is such a little miracle, and I just love him to pieces! After a LONG 6-week stay in the NICU, which included many episodes of Jake’s oxygen levels dropping, his heart rate dropping, his inability to eat for one month, tube feedings, a brief stay in isolation, and a hernia surgery, the day finally arrived for us to take Jake home. It felt so surreal to walk out of the NICU with baby in hand, since we had been forced to walk out so many times before and leave our little miracle with the nurses. What a great day for us as parents!
Life is good. Our lives have been turned upside down in the past two months, and we recognize that our lives will be completely different than we ever imagined. But we are pretty excited about the journey we are on with baby J. I recognize that it will not always be easy, but then again, nothing that is later categorized as “epic” is easy! So, this blog is meant to be a glimpse into our lives, as we live the day-to-day moments that will comprise our epic story as a family. If you are interested, join us!!