I’m So Grateful For My Daughter With Down Syndrome, But I’m Scared Too

When I was pregnant, Olivia possibly having Down syndrome didn’t scare me, or at least I wouldn’t admit that it did. The possibility of her having a heart problem scared me and still does. I did everything the doctor said and took it one day at a time because at this point we weren’t sure what her diagnosis would be, if anything. We didn’t know if she had Down syndrome, we didn’t know if her heart was okay, we just didn’t know. I started to do some research but kept myself from doing too much because I was confident Olivia would be born “just fine,” whatever that means, right?

Well, she was born just fine. She was tiny and beautiful and instantly the new love of our lives.

The few short hours after Liv was born were really scary. She was taken to the NICU because her oxygen levels were dropping drastically and the doctors didn’t know why. They were unable to give her oxygen due to the possibility that her oxygen issue could be the result of a heart issue. So the cardiologist we weren’t supposed to see for another week or so had to be called into the hospital right away.

We waited (not so patiently) by Liv’s side until he arrived to do his echocardiogram and check our new baby’s heart out. He did, and revealed that, although she had some small concerns, her breathing issue was unrelated to her heart and she could be put on oxygen. “Finally!” I thought. A solution. I remember feeling so scared and nervous, but standing by her side waiting patiently for more information and for answers, being strong and not crying even though I wanted to.

Courtesy of Jessica Ardolino

The oxygen was only a temporary fix; Liv would do great on it, but not so great off. It took some time to figure out that this issue was due to her tongue. Apparently “they” (babies with Down syndrome), as the doctor referred to her, are born with larger tongues, a fact I had missed in my lack of research while pregnant. So what did this mean? Basically it meant her tongue was blocking her airway and the only way to help this was by giving her oxygen and being mindful of how she was positioned. In certain positions she would do just fine on her own; in others, not so much. Over the course of three days she came off the oxygen, went back on, came off, and went back on. But eventually, she was off and doing great, and we were able to take our little girl home! 

I get sad when I think that her childhood will be different than the wonderful one her sister has, or that she’ll have a hard time making friends, or that she’ll get made fun of.

Our first few days at home were kind of hard. My husband and I were tired, of course, and I was in a little bit of pain, although extremely grateful for an easy recovery. We were both so nervous. We were sent home with no monitor (looking back, I wish I had known enough to ask for one!) and with nothing else but the directions to “watch the way she is positioned” so her oxygen levels wouldn’t drop.

So that’s what we did. All day, all night, we watched how she was positioned. Not sleeping a wink, worried this baby would stop breathing. I think all parents have this fear when they have new babies, but this was different; there was a very real possibility something terrible could happen.

In fact, just three days after being home we had a horrifying scare. Olivia was sitting with her older sister Haydenn taking a picture. When I picked her up from Haydenn’s arms, she was turning blue. Her color was changing and her tongue was stuck to the roof of her mouth. No change in position was helping this and she wasn’t crying. Off to the hospital we went. Luckily on the way we were able to get her tongue “unstuck” and get her back to normal, and after conferring with her pediatrician we decided to go back home. 

Periodically I’m overrun with emotion when I think of Olivia and her future. Sometimes it’s sadness, sometimes it’s fear, sometimes it’s encouragement and excitement.

We continued to watch her like a hawk until she learned to correct this tongue issue herself. Breastfeeding helped a ton, and within a month, I felt like we didn’t even need to worry about her tongue anymore. This was our first victory on this journey, and we couldn’t have been happier.

Courtesy of Jessica Ardolino

In the hospital, at the doctor, at home and online, I was overwhelmed with information. Information about Down syndrome, information about services for Olivia, things I should do or try, people I should reach out to. It was a lot. It was nice to have so much information coming my way, but I was unsure of where to start.

Early intervention was something I heard frequently and everyone raved about the results from their children having early intervention services, so I started there. After some meetings and evaluations we got Olivia started with a special instruction teacher, physical therapy, and a social worker (we’re currently trying to get a speech therapist as well). Olivia is just three months old, but so far so good! My husband and I are doing everything we can to get Olivia exactly what she needs; that’s all we can do. These three months have been amazing, and I’m so grateful for Olivia and her health and her happiness. 

Periodically I’m overrun with emotion when I think of Olivia and her future. Sometimes it’s sadness, sometimes it’s fear, sometimes it’s encouragement and excitement. I fear that she’ll have trouble hitting her milestones, or that she won’t hit some milestones at all. I get sad when I think that her childhood will be different than the wonderful one her sister has, or that she’ll have a hard time making friends, or that she’ll get made fun of. I fear she’ll develop some serious health issues or need surgery. I mean, the list is honestly endless. People can tell me not to worry, to take it one day at a time (which I do my very best to do) But none of us ever want to see our kids suffer, and we would do anything and everything we could to take away hurt or pain or fear from their little lives.

As a mother, I’m no different. I want what is best for Olivia, I want to give her the best life, and I want her to thrive. I know my husband and I will do a great job because we love Olivia so much. It’s going to be tough, and that’s okay! I just have to keep reminding myself it’s okay to be scared, it’s okay to be nervous, and it’s okay to talk about that. So, while I’m unsure exactly what this life with Liv will bring, I’m going to embrace each moment — good, bad, scary or sad — and share my wonderful little girl with the world.

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My daughter was born with Down syndrome, and has already faced challenges in her little life. I worry about how many more she’ll have to face.
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