Happy 1st Birthday Selena!
January 16, 2020
Topics: Riley Kid Story
We checked in with Riley mom Emily and her daughter Selena. Selena spent the first six months of her life at Riley Hospital for Children after being diagnosed with central hypoventilation syndrome, which means she holds in carbon dioxide during sleep. Selena is home and doing well and will celebrate her first birthday on January 19, 2020!
Can you tell us what it was like the day you received Selena’s diagnosis?
The day we received Selena’s diagnosis we basically already had an idea of what it was before the actual results came back. We had a meeting with Selena’s team of doctors about performing a tracheostomy because of how confident they were for the results of her genetic testing coming back 100% they felt it was. Matthew and I were terrified. I was sobbing trying to get out all the questions I could think of for Selena’s future. We discussed it for what seemed like forever, wondering, “Is there another way?” “There has to be another way” “I can’t believe this is happening” “will she be normal” “will it cause any delay in her development”? I had a million questions running through my mind, I just couldn’t ask them all at once. We had to put our whole entire trust into Selena’s team. I couldn’t think straight days leading up to her surgery. I was just asking God “why is this happening to my little girl”? After Selena’s surgery I remember the doctors explaining to me that I wouldn’t hear any vocalization from her for a while until she healed. The first time she woke up and I saw her crying without a voice I absolutely lost it. I thought I would never be able to hear her voice again. It was one of the hardest moments of my life. I still remember to this day how I felt and that throbbing in my heart I felt and the way she looked at me. The pain in her eyes just hurt more than words can describe still wishing I could have been the one to have to felt her pain instead of her. I would do anything in the world to make this all go away.
Selena spent her first six months Riley Hospital for Children, what was that like for your family?
After Selena was Trached we had to learn basically a whole new way of life to keep her alive and healthy when coming home. We had to go through very thorough training and classes on everything that we needed to know. It was so much pressure having to learn everything. I felt like I wasn’t going to be able to do it, I was going to fail. I didn’t believe in myself. But, I had the staff behind me and they believed in me. Lots of physical and speech therapy we had to go through with Selena, we taught her how to eat and use her mouth again, because everything was harder to do with a whole new airway she wasn’t used to. She wasn’t learning as quickly as we wanted with food by mouth so she had to also have a G-tube put in to help her get her calories. So, there was another surgery she had to have, not as significant but still a big deal and there I was crying again, my baby had to have yet another surgery. My heart just ached. We were at Riley so long it’s been my second home. The nurses that cared for my daughter not only cared for her but for my family also. They did everything in their power to make sure we were as comfortable as possible. If it wasn’t for them I don’t know how I would have gotten through being in the hospital for 6 months basically alone most of the time with dad having to be at work most days. When I was finally able to leave the hospital (forced by the nurses) because I was driving myself sick not wanting to leave my baby girl. I felt comfortable doing so because the nurses and doctors loved her as if she was theirs, and I knew she was being well taken care of and getting a little bit of love when mommy wasn’t there.
What has been your favorite milestone to see Selena accomplish?
My favorite milestone Selena has accomplished would be when she started crawling one session after her physical therapy when we were home. This was my favorite because it really opened my eyes that my little fighter could do anything if she just had a little help and the determination to do so. My baby girl was going to be able to grow up without any delay and I couldn’t thank Riley enough for the tools and care to do so for that.
If you had some advice to give to future Riley families what would that be?
My advice to Riley families would be to not lose hope. Trust in the doctors because they want what’s best for your children as much as you do. Just remember that it will get better although it may seem like it never will. It gets better.
What does it mean to you when individuals or corporations donate to Riley?
When individuals or corporations donate to Riley, it means the world to our families. It means the world to us because of it wasn’t for those donations we wouldn’t have had the access to those crucial tools and classes to bring my baby home. Those donations give us hope and the nurses and every single doctor in that hospital to never give up. When you donate you’re not just donating money, you’re showing us your support and that you love our children as well. You’re giving the nurses the confidence and passion to help us succeed in getting to take our babies home. We feel that when you donate that you believe in miracles and that is the most important gift I think any of us could ask for.
We invite you to make a donation at www.bethehopenow.org to continue to help Selena and future Riley kids live their best lives.
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