At an early ultrasound, we were told because of the thickening of the neck and the possible heart problems, our baby had what they called “soft signs of Downs”. We did not know much about Down syndrome at this point, but quickly learned all that we could read about. At our 20 week ultrasound, the signs were still there and the doctor felt pretty certain that our baby had Down syndrome. We also found out that this bun in the oven was a boy - our third boy!! We were excited about that. (Rowen originally was not; he cried over the fact that he’d have another brother! Ethan was excited for another boy; however, now he doesn't always admit that Liam is his brother!). We opted to take the Maternity 21 test, which is a blood draw from mom and it looks for genetic abnormalities. We were looking for T13, T18, or T21 chromosomal issues. 13 and 18 meant a short life for our child, maybe only hours or days; in fact, the doctor used the term “lethal” to describe those two. T21 indicated Down syndrome. We were rooting for that one! And we were lucky enough to get that result a week later, which was by far the hardest and longest week of our lives!
Shortly thereafter, we delved into the world of Down syndrome. We joined the DSAW - Fox Cities group and were immediately welcomed with open arms, even when our baby wasn't here yet! We found out as much as we could possibly know so we were ready for our little Liam when he chose to arrive!
From continued ultrasounds we knew Liam would need surgery to correct an omphalocele when he was born, which is where some of his intestines were sticking out where his belly button should have been. This surgery could only be done in Milwaukee. We also were concerned about a valve defect in Liam's heart and he could require surgery around six months old for that issue. We had a scheduled C-section in Milwaukee so mom and baby could recover in the same hospital together after he was born, but, Liam decided to arrive one week early and was born in Appleton and not Milwaukee! Liam received a ride to Milwaukee via ambulance when he was only a few minutes old. Mom had to stay in the hospital in Appleton for 24 hours, while Liam and Dad were in Milwaukee waiting for her!
Liam had surgery at one day old to correct the omphalocele. During this surgery, he had his intestines rotated and tucked back in, his appendix removed because it was on the wrong side of his body, a testicle removed because it was up by his liver, and his very own surgeon-made, custom (read: really expensive) belly button, which is undeniably cute. Through a fetal echo-cardiogram, we also found out that he only has two small holes in his heart that are barely of any concern to his cardiologist. We are hoping that he will grow enough to where these holes will just close up on their own and he won’t require any open heart surgery. We spent sixteen days in the NICU before given the okay to fly to coop. He’s a trooper, has taught us all so much already, and we just love him to pieces!!
DSAW has been an invaluable source of information, comradery, love, acceptance, and home to some really fabulous people. We are so happy to be involved in this walk to raise money to support people with Down syndrome and their families to be the best that we can all be. Without this group, we wouldn’t have had the positive outlook and frames of mind that we did when Liam joined our family, making us complete. Donating to our team will help thousands in this way: speakers and workshops, grants for those with DS, information for new families, programs to bring families that have members with DS closer together, scholarships for educational opportunities for those with DS, summer speech programs, purchasing resources for all families to share/use, and the list goes on.
We are completely honored to help represent this organization because of all the love, support, and hope they spread. We appreciate YOUR support from the very deep, soleful, grateful, and warm bottom of our hearts.
Love and hugs,
Courtney, Bob, Rowen, Ethan, and Liam
Legs Up! Let's Get Walking!!!