Thank you for sharing Sadie’s story with us! Can you tell us about your family and first learning you were pregnant?
My husband and I got married in 2010. We had our first daughter, Hannah, in 2012. I found out just after her first birthday that I was pregnant with Sadie. We were surprised, but so excited!
Briefly what were a few highs and lows of your pregnancy and how long did it last?
The beginning of my pregnancy was very difficult. I had hyperemesis gravidarum and had to be hospitalized a couple of times and ended up with a PICC line to get fluids at home. We found out we were having another girl and were so thrilled! We picked her name that same day, Sadie Grace. Everything else about my pregnancy was pretty normal until we did a growth scan at 36 weeks. We were surprised to find out she was breech and measuring big. I was not prepared to find out she had some abnormalities in her brain.
Share what you are comfortable with about the NICU experience for your baby.
Sadie was a little unusual because she was a full-term baby in the NICU. The first week after she was born was one of the most difficult weeks of my life. She was very sick and the doctors were not sure what was going on. We weren’t able to hold her for 5 days. It was heartbreaking to see her on a ventilator not responding to the medicines the way the doctors thought she would. Several days in she was scheduled for a lung biopsy to check for a rare, incurable lung disease. The day of her scheduled biopsy she had a slight improvement, so she didn’t need the biopsy! She continued to improve over the next few weeks. When she finally came off all oxygen, she was not able to eat enough on her own. We had to make the tough decision to have a feeding tube placed so that she would be able to come home.
How long did Sadie spend in the NICU what was the hardest part of your time there?
She was in the NICU for 7 weeks. The hardest part was the beginning, not knowing how she was going to do. And also managing time with my other daughter when I wanted to be by Sadie’s side the whole time. There were so many emotions.
What was the biggest challenge that you had to face for Sadie since being home?
For us, the biggest challenge was relearning parenting. Even though Sadie’s big sister was really young, parenting Sadie was different. We were watching everything so close, waiting for something else to go wrong, adjusting expectations. It wasn’t until after her first birthday that I felt like I could breathe a big sigh of relief that she was going to be ok.
When did you know that Sadie would need extra therapies?
We knew from the beginning she would probably need therapy due to her low muscle tone. When she was 6 months old, she wasn’t close to sitting up on her own, so we knew that it was time.
What therapies have really helped her?
Without physical therapy I don’t know when she would have walked. Speech therapy was so helpful in getting her to talk and occupational therapy helped her get past some sensory issues. Therapies have been so great for her!
How did you hear about Bee Mighty and what made you apply?
I heard about Bee Mighty when Sadie was in the NICU, but it wasn’t until she was 3 that we applied. The clinic she was receiving therapies at created a preschool program that would flow well with the other services they offered. We couldn’t afford two preschool programs for her but thought she would really benefit from the additional program. It really helped her be ready for school!
What does a typical day with Sadie look like now?
Sadie just turned 7, and she’s in first grade. She’s learning to ride her bike! She loves to play with Legos, watch doctor-type kids shows, and she’s obsessed with koalas. She’s learning and growing so much! She just gets PT one time a week now. She’s busy, funny and amazing.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
Nothing lasts forever. You are more resilient than you know. You will adjust and you will grow. You’ll see life through a different lens, but you’ll appreciate the smallest things so much more! You are your child’s advocate, don’t be afraid to ask questions or speak up. My faith has been the biggest thing that has gotten me through and having people you can confide in on the hard days. And as she has gotten older, having a pediatrician who is willing to listen and take action when needed has made such a difference.