Learn about Avery and Annie's NICU journey from their mother, Michelle.
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?
At my 19 week scan they noticed something was not quite right with Baby B. She was not growing. We went in for our scan and were excited to find out the gender. However, we left scared we may lose one of the babies or both. They referred me to a specialist for complicated twin pregnancies, and she saw me through the next few very hard weeks as we waited to see what was going to happen. At nearly 24 weeks I was admitted into the antepartum unit at Atrium Main, where I was monitored three to four times a day. During this time and during one of the scans they noticed a defect in Baby A’s heart. They were hoping for the girls to get a bit bigger before delivery so the heart defect could be addressed right away, but that was not the case. Baby B still wasn’t growing well but creeped along just enough to give us hope. At 27 weeks, they noticed distress and planned delivery. The girls were born on Feb. 2, 2017, weighing 1 lb 4 oz (Baby B - Annie) and 1 lb 11 oz (Baby A - Avery).
Share what you are comfortable with about the NICU experience for your baby.
At birth both girls were whisked away to the NICU. The next few weeks were a blur. We had several emergency surgeries and a battle with NEC, all along racing against time to fix Baby A’s heart condition. In total the girls had 16 surgeries, including multiple intestinal procedures, (including Avery losing her colon), three heart procedures, ROP laser treatments, plus countless blood transfusions. Both girls were given gtubes and ostomies. Annie’s was reversed before we left the NICU, but Avery came home with one for a year before reversal. It was a whirlwind. But thanks to the devotion of the NICU doctors, nurses, RTs, PTs, and OTs we made it through. It was a dark time for me emotionally. It was hard to communicate with the outside world. But my husband, Bruce, and I had a very supportive community and family praying for us and carrying us along.
When did you get to hold Annie and Avery for the first time? It was a month after birth that I was able to hold them for the first time. It was a scary experience. We had been through so much, and they had been so fragile for the first month I could only cradle my hands around them in the isolettes. I was able to do Kangaroo Care with each individually a few times at a month old, and it wasn’t until they were 3 1/2 months old I was able to hold both at the same time.
What was the biggest challenge that you had to face since being home?
One of our biggest issues when getting home was eating. Because they were both on the vent for so long, they missed the window for typical feeding. They both came home with gtubes. Although we tried and tried to get them to take a bottle, they never would drink more than 20-40 mls at a time. Most of their nutrition was supplemented through tube feeding. Thankfully, they have been able to learn to eat more typically, but because of their size we still (even at age 5) supplement twice a day with their gtubes. Another big challenge we have had is hearing. Avery failed her newborn hearing test, and after many follow up visits it was determined that she had little to no hearing. She became a candidate for cochlear implants and received them at 18 months. We thought Annie avoided the hearing difficulties, but at age 3 we determined she had profound loss in her right ear. She now proudly wears a pink hearing aid. Avery’s speech has not developed as most do due to apraxia, so we use ASL as a family. But she is working hard to become bi-lingal (ASL and English). We are so proud of what a hard worker she is!
When did you know that Avery and Annie would need extra therapies? We came home from the hospital with a list from the doctors of the therapies we would need. We have spent countless hours in feeding therapy, OT, PT, and speech therapy. We are thankful that insurance has covered most of these, however the extra speech therapies Avery has needed to get ready for Kindergarten were extensive enough that we were able to get a Bee Mighty grant to help cover some of the out of pocket costs, and we are so thankful.
How did you hear about Bee Mighty and what made you apply?
I learned about Bee Mighty from reading some of the fliers in the NICU. At the spring NICU picnic I realized I knew another mother who was a volunteer. She was someone I was put in contact with during our experience because she went through a similar experience 9 years earlier. I was so thankful for her help, care and guidance. I knew I wanted to do the same. I became involved with Bee Mighty when they were looking for someone to help with the website and marketing, since that is what I do professionally. It wasn’t until after being involved for a few years that we applied for one of the grants ourselves. I love working with this community and being a part of an organization that helps bring awareness and support for NICU families.
What does a typical day with Annie and Avery look like now?
The girls both started traditional Kindergarten this year. I had my fears about them being ready, but they have more than surpassed any expectations anyone ever had for them. They take dance, sing in church choir, have play dates with friends. They are reading, writing, drawing funny pictures, playing Mario Cart, making necklaces – anything a typical 5-year-old would do. Looking at them now you wouldn’t even believe how they started out. We still use gtubes and have speech and feeding therapies weekly. But that is just our norm. Preemies will amaze you and continue to amaze you.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
Don’t be afraid to reach out to other NICU families for someone to talk to. One of the hardest things is trying to explain the experience to others without seeming overwhelming. Other NICU families “get it” and you don’t have to explain. One of the most therapeutic things I did was just find someone who knew what I was going through. Every experience is different, but the emotions you go through are similar.