birth, Down syndrome, Ivy Joy, prenatal diagnosis, the lucky few, therapy, tribe

Ivy’s Health Journey – Part 1

I haven’t been very good about updating the blog over the past couple of months! My goal is to chronicle our experience having a child with Down syndrome. The past several months since Ivy’s birth has been a big learning curve for me, trying to balance being a mom of three, working full time, and all of the appointments and therapies. I’m hoping to be better about posting on here from now on! To start, I want to go through our health journey with Ivy since she was born. **I may shamelessly throw in a lot of pictures, because I just want to remember these days forever!**

When Ivy was born, one of my fellow Ds mama friends compared all of the possible health struggles and complications to a salad bar. She said all of our kiddos get some things from the bar, but not everything! Ivy was born 4 weeks early, but was remarkably healthy. They had to do heel pokes every two hours for the first day to make sure her blood sugars were good so her poor heels looked like a pincushion.

The day after Ivy was born, her bilirubin wasn’t going down the way they wanted it to (which isn’t uncommon for preemies) so she was put under the bili lights. Her low muscle tone made her really spread out her arms and legs, and so seeing her lay under what looked like a tanning bed while her eyes were covered by what looked like tiny sunglasses was just too cute!

We were able to bring Ivy home with us three days after she was born (5lb 2oz), but we had to keep her on a bili blanket full time to try and help her bilirubin levels come down. She was like a tiny glow worm all wrapped up. We went back twice for heel pokes, and finally after a few days, we got to ditch the blanket!

Ivy had failed her hearing test twice in the hospital, but the doctors weren’t concerned. They said that is common with preemies and that we should just come back in a few weeks to get it tested. Sure enough, when we went back for the BAER test (brainstem auditory evoked response) she passed in both ears!

When we went in for her one week appointment, Ivy had barely gained any weight. She was breastfeeding and seemed to be doing well with it, but our pediatrician sent us to an occupational therapist just to be sure her latch and suck/swallow coordination was there. After three appointments, she was doing great and gaining well, so she ‘graduated’!

Though Ivy is my third baby, that extra chromosome sure made me feel like a brand new parent all over again. Luckily, one of the Ds mama friends I had made was a former NICU nurse, so I was able to text her videos to make sure things were ok. Ivy developed some stridorous breathing after the first few weeks. She would make this high pitched, gasping for breath sound that sounded terrifying. The ENT told us she had mild laryngomalacia which is basically just a floppy airway due to her lower muscle tone. In more severe cases, this can require a surgical fix. Luckily, Ivy’s never compromised her oxygen saturations, so we didn’t have to worry too much about it. He said she would grow out of it in the first few months of life.

Other than extra appointments, our life was pretty much the same as it was before Ivy was born. We spent a lot of time during her first two weeks with Sam’s family. Two of his brothers and their wives were in town to visit. Ivy pretty much just ate and slept!

We traveled to Detroit several times to hang out at my parents’ lake house like we do every summer. It was amazing to feel normal. I had worried so much that this diagnosis would change so much, but it truly didn’t! Looking back, this was such a wonderful honeymoon period as we were able to relax and just enjoy Ivy and being a family of five!

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