Jessica Ardolino

@jaherbert17 | contributor
My name is Jessica I have two beautiful daughters. One age 9, and one 3 months. My 3 month old baby has Down syndrome. I’m looking forward to sharing her story and connecting with others.
Jessica Ardolino

'Outstanding Olivia' Book Teaches Kids About Down Syndrome

Most parents don’t think about talking to their children. They just do it. They teach them to talk, what words to say and not to say and in time their children speak to them. As a parent, it is natural to have fears for your child, but one of them is not usually, “Will I be able to communicate with my child?” I was no different. Even after knowing Olivia might have Down syndrome, it never crossed my mind that we wouldn’t be able to communicate with her. Even after confirming that Olivia had Down syndrome at birth, it never crossed my mind that we wouldn’t be able to communicate with her. However, that is a very real struggle my family faces every single day. Olivia is going to be 3 this year and although she is still very young, her ability to communicate verbally is not there. We as a family are learning how to talk to Olivia using sign language. It is new and challenging but interesting and exciting. We teach each other new words as they come up and learn to use them in everyday life, especially when communicating with Olivia. My oldest daughter Haydenn, who is 11, was teaching Olivia how to sign “I love you” and I was amazed watching them. Olivia couldn’t do it correctly, which was not surprising because a lot of her signs are what we call “approximate,” which just means the sign she’s doing is close to the actual sign. I was inspired by their interaction to write a story about Olivia and her sign language. I wanted to teach people, especially kids, that children with Down syndrome can and do struggle with the ability to talk, but that this doesn’t stop them from learning to communicate with their families. And in no time, “Outstanding Olivia” was born! My Olivia is outstanding to say the least, and so the title came easy to me. I included my whole family because we are all in this together and we work hard to help Olivia. I have high hopes of writing more books someday soon and always including signs in the books to teach kids. For now, I want to share this book with as many people as I can to raise awareness for Olivia and kids just like her! You can buy “Outstanding Olivia Says, ‘I Love You'” on Amazon.

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Life with Liv

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 Livs side until he arrived to do his echocardiogram and check our new babies heart out. He did just that and revealed 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.

The oxygen was only a temporary fix, Liv would do great on the oxygen but not so great off the oxygen. 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 either giving her oxygen and watching her positioning. In certain positions she would do just fine on her own, in others not so much. Over 3 days she came off the oxygen, went back on, came off, went back on and eventually was off and doing great! We were able to take our little girl home! I was so grateful that she was okay and doing well, I couldn’t wait to get her home!

Our first few days home were kind of hard. I was tired of course and a little bit in pain, although extremely grateful for an easy recovery. My husband was tired and we were both so nervous! We came home with the instructions to “watch her positioning”, now if you remember what I said Olivia did great in some positions but in others her oxygen would drop. We were sent home with no monitor (which looking back I wish I knew enough to ask for one!) and with nothing else but the directions to “watch the way she is positioned”. 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 horrible could happen. Just 3 days after being home we had a horrifying scare. Olivia was sitting with her older sister taking a picture and when I picked her up from Haydenn’s (big sister) 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. Olivia was fine! Thankfully. 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.

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. I was grateful for all the information coming my way but I kind of didn’t know 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 (currently trying to get a speech therapist as well). Olivia is just 3 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 3 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. The sadness and fear is so real and I’m trying to learn not to ignore it. I fear that she’ll have trouble hitting her milestones, I fear 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 as mothers we just want what is best for our children. As mothers we don’t 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 not 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 I’m unsure exactly what this life with Liv will bring but I’m going to embrace each moment, good, bad, scary or sad and share it with the world!

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