My class was finishing up a unit on Genetics, and were learning about some of the most common genetic disorders. My students were fascinated with the unit, and, since I was 8 months pregnant at the time, they were naturally applying everything we were learning to Baby Marsh. We had already completed quite a few Punnett squares on what he might look like (pretty much a 0% chance he'd get my blue eyes).
This question about the sweet boy growing inside of me caught me off guard. I hadn't thought of Baby Marsh and Down syndrome since February. We had been referred to go to a follow-up appointment after his 20 week anatomy screening because of a little extra fluid around his heart. At the follow-up appointment, the fluid around his heart had resolved on its own. However, a genetic counselor unexpectedly appeared and informed us that his humerus was measuring a few days behind. Apparently, this is a soft marker for Down syndrome. We refused genetic testing... it wouldn't change a thing about how we felt about our son or change anything about the pregnancy. Vincent and I then pretty much forgot about the issue and told ourselves that there was no way Baby Marsh had Down syndrome.
I explained all of this to my students, and we went over other markers for Down syndrome. I told them of my experience working with a third grader with DS during my student teaching. We talked about how sweet she was, and how she read to me everyday. Kids with DS can do everything we can do- just at their own pace.
But, no, I told them, Baby Marsh does NOT have Down syndrome.
Fast forward 8 weeks to June 19, 2014....
"He kind of looks like he has Down syndrome," Vincent softly said as he examined our newborn son, Harrison.
"No," I replied, "Babies just look funny when they come out."
Again, the issue was dropped. However, the next day, Vincent, having completed his first year of medical school, kept examining Harrison's hands and shining light in his eyes looking for Brushfield spots as he anxiously waited for the pediatrician to come .
Our pediatrician finally arrived at the hospital to check out Harrison. We watched her as she quietly and thoroughly examined him. "When I first looked at him, I thought he had Down syndrome, but I'm not so sure now. He does have a few markers... I'm going to call the geneticist and have him take a look," she told us gently.
The geneticist said the same thing- he couldn't tell, thus he ordered a blood test for Harrison. The results would take 4-5 days.
4-5 long days of waiting. Waiting to find out which pathway we would be traveling with our sweet Harrison. Waiting to find out how different our lives would be from other families.
It was a long 4 days; Harrison was battling jaundice and had to be on a Bili blanket then transferred to the NICU to be put under the lights. Every time Vincent and I looked at each other, we would tear up; we knew what the other was thinking/wondering.
|Our Little Glow Worm!|
On that Sunday, we got to come home!
On that Tuesday, we had our first outing- the pediatrician's office. After we had weighed Harrison, and gotten settled in the office, the pediatrician told us the news.
Harrison has Down syndrome.
I was shocked and confused. I thought that only happens to older people! The rest of the appointment was a blur as the pediatrician explained our next steps in ensuring Harrison's health was okay in other areas. Lots of doctor appointments was all I heard.
We rode home in silence.
As soon as we got home, Vincent pulled out the Bible, turned to Psalms, and began reading. We read many different Psalms as we held our son and cried.
That night, we opened up a package one of the best nurses (we had some absolutely amazing nurses at the hospital) had prepared for us."Just in case he does have DS. Don't open it until you know for sure, though," she had told us.
We read about the challenges we would face, but also about the blessing he would be in our lives and to others.
Suddenly, a huge community of people I had never thought existed opened up for us. There are so many families going through what we are going through! I never considered this community before, and had only vaguely heard of these organizations. Now, these blessed organizations are going to be a major part of our lives.
"He'll be in the Olympics!" Vincent excitedly said. We laughed together, and got excited for Harrison's future athletic career in the Special Olympics.
The next day, we visited the pediatrician again to check on Harrison's bilirubin. A few hours later, she called us and told us to go to the ER at MUSC- Harrison's bilirubin was too high.
We quickly grabbed his diaper bag, and rushed out the door. The next few days were awful. Poor Harrison was hooked up to everything. When we had arrived at the ER, his temperature was low. This led them to do a whole septic workup, including a lumbar puncture. I couldn't watch any of it, so Vincent stayed in the room with him while I walked the halls.
|Vincent reading to Harrison while we waited for a room in the PICU.|
Harrison, unfortunately, had to stay in the hospital from that Wednesday to 2 AM Saturday morning. My mom, Vincent, and I did shift work. I hated leaving Harrison, but I knew I needed rest in order to function... I was beginning to feel too overwhelmed. I pumped while mom and Vincent took turns each night and let me sleep.
|Harrison's first fort!|
Harrison had an echocardiogram done on his heart while we were there. Great news! His heart is perfect. This news was very exciting- a lot of kids with DS have heart issues. We also had an ultrasound done on his lip (his droopy lip has nothing to do with DS); they weren't sure what it was, so they recommended us to go to a plastic surgeon.
FINALLY, we got to go home! They had stuck poor Harrison SIX times trying to check on his potassium levels and wouldn't let us leave until they could get a good reading.
Thankfully, we have only had to go to doctor appointments since then. No more hospital visits for us! The experience helped us become ok with Harrison's diagnosis. We just want him to be healthy in other ways now.
It has been AWESOME to see the support of our family and friends. Even people I don't know are calling me or Vincent to meet with us. The support and encouragement from others has been wonderful. God is truly in control.
We acknowledge that God is going to use Harrison in so many wonderful ways... not just in our lives but in others' lives, as well. I am truly looking forward to seeing all the different ways God uses Harrison!
This journey ahead of us will be challenging, but what journey with a kid isn't challenging?
*I will be continuing to post about our lives with our bundle of joy, everyday life stuff, and how God is growing our faith. Thanks for reading!*