Our Story
Our son, Brooks, was born on October 10, 2018.
He has a beautiful big sister, who is almost 2 years older.
Born via cesarean section at 7:55am. The day seemed perfect! We were able to snuggle him, feed him, and introduce him to a few family and friends. We just couldn’t stop looking at his beautiful face, but there was something that we didn’t feel right about. His color seemed off, he seemed a bit blue. But when we mentioned it to the day nurses they said “he was just born, his color will even out”. My motherly instinct still didn’t feel right.
When the night nurse came in she did a well check on Brooks and noticed he had low oxygen, in the 70’s! (this is where his blue color had come from) They took him directly to the NICU.
A local specialist came in and they discovered he had a heart defect. Brooks got the next plane ride to Children’s Hospital in Omaha. When we arrived at the hospital shortly after him. It felt like we had just sat down, and we were told he would need heart surgery ASAP and they were testing him for Down syndrome because of his specific heart condition. We had no prenatal signs of either of these diagnoses.
I remember praying, I hope he doesn’t have Down syndrome. I wasn’t even sure what Down syndrome was, but I was too scared to look it up. I remember feeling so overwhelmed, it felt like the walls of the hospital were closing in on us. I was finding it hard to breathe. Why us, why Brooks?! Where did our perfect baby go? Why can’t we just take him from the hospital like we did with our daughter? How could we help him? We felt so helpless, and now we were in a city almost 3 hours from home, 3 hours from our daughter; who thankfully, was being cared for by her grandparents.
Three days after his birth, Brooks was diagnosed with Trisomy 21: Down Syndrome.
Our Story
Our son, Brooks, was born on October 10, 2018.
He has a beautiful big sister, who is almost 2 years older.
Born via cesarean section at 7:55am. The day seemed perfect! We were able to snuggle him, feed him, and introduce him to a few family and friends. I just couldn’t stop looking at his beautiful face, but there was something that we didn’t feel right about. His color seemed off, he seemed a bit blue. But when we mentioned it to the day nurses they said “he was just born, his color will even out”. My motherly instinct still didn’t feel right.
When the night nurse came in she did a well check on Brooks and noticed he had low oxygen, in the 70’s! (this is where his blue color had come from) They took him directly to the NICU.
A local specialist came in and they discovered he had a heart defect. Brooks got the next plane ride to Children’s Hospital in Omaha. When we arrived at the hospital shortly after him. It felt like we had just sat down, and we were told he would need heart surgery ASAP and they were testing him for Down syndrome because of his specific heart condition. We had no prenatal signs of either of these diagnoses.
I remember praying, I hope he doesn’t have Down syndrome. I wasn’t even sure what Down syndrome was but I was too scared to look it up. I remember feeling so overwhelmed, it felt like the walls of the hospital were closing in on us. I was finding it hard to breathe. Why us, why Brooks?! Where did our perfect baby go? Why can’t we just take him from the hospital like we did with our daughter? How could we help him? We felt so helpless, and now we were in a city almost 3 hours from home, 3 hours from our daughter; who was being cared for by her grandparents.
Three days after his birth, Brooks was diagnosed with Trisomy 21: Down Syndrome.
We were only able to hold Brooks once a day, if even that, so when the news was delivered, by the grace of God, I was blessed to be holding sweet Brooks. The geneticist said, “The test results are back, your son has Down syndrome”. I looked down at Brooks, cried, and said “I’m Sorry” for what felt like hours. As was too overwhelmed to learn what this diagnosis even meant for Brooks, I was eager for him to have a successful heart surgery and then we will tackle this next diagnosis of Down syndrome. I wish I could tell you I was accepting of his Down syndrome diagnosis immediately, but I wasn’t. I didn’t understand it, and I wasn’t strong enough to learn at that moment.
When Brooks was 1 week old he had open heart surgery to repair a Coarctation of his Aortic Arch & an Atrial Ventricular Septal Defect. Dr. Hamel and Dr. Ali compared his heart to the size of a strawberry and the valves of his heart were like thin tissue paper. They said they would do their best, while also making us aware of any and all complications that could happen. We handed our precious new son over to 2 strangers that day, and what they did next was a miracle. After a 5 hour surgery Brooks and his doctors won the fight! Brooks was born again, and this time with a fully functioning heart.
Brooks’s strength and resiliency seemed to be something magical. Something we never imagined a little baby would have to endure.
There’s a 24-48 hour window after heart surgery that they warned us about. Around the 20 hour mark Brooks started going into AFIB, his heart rate would shoot up over 220, monitor alarms going off constantly. It was yet again another scary and helpless moment. But Brooks would just lay there, peacefully asleep every time. This happened that whole day. The doctors and nurses would set his pacemaker and slow his heart back down. We were all glad when that day was over.
We spent just under a month total in the hospital with Brooks. Even celebrating Halloween there. After surgery Brooks was on oxygen and a feeding tube. He worked really hard, and we ended up only needing to come home with the feeding tube. That only lasted a month, as home was the medicine & strength he needed!
On November 3rd, we took Brooks home, and we were officially a family all under one roof!
Brooks is a happy, strong, loving, unique individual and a true blessing to our family. He makes our lives better every day! This world is truly a better place with Brooks in it!
Did I mention he gives the BEST snuggles!
While this news of Brooks’s Down syndrome diagnosis came with a lot of tears of concern for our son, and so many questions on how we could be better parents for him, we quickly learned this was simply a diagnosis, and not a definition of his life. In the time following getting home from the hospital I received a few children’s books written about Down syndrome. In the hospital they gave us some reading material but I found that too overwhelming. The children’s books seemed to be just what I needed, less words and more vibrant and happy pictures; but still plenty of content to learn from. Maybe if there was more access to these children’s books on Down syndrome, and other uniqueness’s people wouldn’t be so surprised or upset upon receiving a diagnosis.
Maybe what seemed so different about having Down syndrome, wasn’t really that different at all?!
A year later, Brooks’s Bookshelf was born.
Brooks’s
Bookshelf Locations
Brooks’s
Bookshelf Locations
Brooks’s Bookshelf was created in celebration of our son, Brooks.
This bookshelf is a way to share the joy of reading and also spread awareness of Down Syndrome and other uniqueness. We handcraft and fill bookshelves throughout our community, and surrounding communities. Each bookshelf will include books of all interest with specific books focused on kindness, inclusion, diversity, and understanding individuals with unique differences.
Take a book with you today!
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The more we learn, The more we know!
Blog
The more we learn, the more we know!
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