Thank you for sharing Elle’s story with us! I know her journey has not been an easy one so let us start from the beginning, how did you find out you were pregnant? I woke up in the middle of the night and just knew I was pregnant. I took the test and went back to bed planning to surprise my husband the next day, but I left the wrapper out, and he asked if I was pregnant. Oops! We went to the doctor a few weeks later and found out it was TWINS!
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU? We knew Elle had some things different on our first anatomy scan. I was so excited to know boys or girls that I forgot the whole point was to assess health… We were really heartbroken to know she may have any challenges ahead.
Share what you are comfortable with about the NICU experience for your baby. The NICU stay was long, or at least it felt SO LONG. And I cried a lot. Cried for a the loss of a typical newborn experience and cried for her twin who was home without me and who couldn’t be in the hospital with us. We had to learn to grow and feed and it took a lot of speech therapy. Looking back I was so stressed I didn’t get to enjoy our kangaroo care as much as I would have liked.
How long did Elle spend in the NICU? What was the hardest part of your time there? One long month. The hardest part was not knowing how much longer she would be there and being away from her twin at home. I didn’t get to hold them both together for an entire month.
What was the biggest challenge that you had to face for Elle since being home? I hoped she would “outgrow” any issues, but she has continued to need therapy since we learned of her genetic disorder. Managing a new “normal” has been so hard for us. Juggling appointments, paying bills, and acting as her advocate has been extremely overwhelming.
When did you know that Elle would need extra therapies? From birth almost. We started ST in the NICU. PT started at home within a month or so. Speech continued soon after.
What therapies have really helped her? Oh my, all of them! We have used PT, OT, and ST. Our therapists have loved and cared for her and for us, and we have been grateful.
How did you hear about Bee Mighty, and what made you apply? I asked CDSA what options might exist for financial support. We were overwhelmed by all of Elle’s needs and the costs beyond what insurance pays. Also, I had to go part-time at work in order to ensure she got all the care she needed, so bills were going up and income was going down. We were so hopeful when we heard about Bee Mighty!
What does a typical day with Elle look like now? Honestly, a typical day is pretty typical! I love saying that. She gets up and eats breakfast with her brother and sister, and we dress and go to daycare. She plays and learns there and gets therapies throughout the day. When she comes home we read books at night. Lots of books. She is still non-verbal, so we work on speech a lot. She has lots of extra therapies, attention, and doctor appts mixed in, but otherwise she seems like a “normal” kid!
Any advice you would give another family going through the process? Anything that really helped you get through the experience? You and your child are on your own path. I used to hate when people told me my kid would be fine because their kid who experienced similar things was fine. I felt like they were ignoring what we were going through. Embrace whatever that is, but it’s also okay to grieve the loss of the newborn experience or parenting experience you thought you were going to have. With time you will come to find peace with your own unique journey. For me, meditation, journaling, and a daily gratitude practice have helped tremendously! Also, let people help you. Meals, laundry, date night, whatever. You need help as a parent. It’s a fact. And you’ll be glad you accepted help in the end.