Read below as Mackenzie’s mom shares her story.
In the five years before we met Miss Mackenzie Rose, our journey including a wide range of emotions. We experienced two losses and multiple unsuccessful fertility treatments. It wasn’t until we decided to give everything a break that Mackenzie decided it was her time to shine. Finding out that we were expecting was full of excitement and fear considering our history to this point. Those emotions carried through the 9 months of pregnancy.
There were no issues during pregnancy, so we had not anticipated spending anytime in the NICU. Mackenzie was full term and she had a traumatic entrance into the world, which led to her time in the NICU. From day 1 in the NICU, we nicknamed Mackenzie Rose – The Irish Fighter.
The hardest day for both of us was by far Day 1. Mackenzie had to be highly sedated because she was having violent seizures that were constant. There is nothing more heart wrenching than seeing your baby under sedation with tubes and wires coming out of her. We thank God for the nurses in the NICU. They helped us get through that day. Also, having family in town for support meant the world
We always say that January 30, 2019 was the happiest day of our lives. That was the day we brought Mackenzie home and everything started falling into place. Just like any new parent, we were also very terrified of the responsibility. But unlike any new parent, we had skills in our back pocket from our time in the NICU. We were pros at temperature checks, diaper changes, bottle feedings, and routines. This made the transition a lot easier.
We have been extremely cautious during COVID. Both of us have been working from home and we really do not go out much at all. The silver lining is that we have been able to spend more time with Mackenzie.
During her time in the NICU, we advocated for her to get physical therapy during times when she was awake and alert. We knew the importance of early intervention.
CDSA’s support has been top notch. Our service coordinator, Jada Jackson, has been instrumental in getting what we call Mackenzie’s A-Team of therapists. They have all become family.
We heard of Bee Mighty through the CDSA, the North Carolina Early Intervention program. Our physical therapist and seating mobility rep were talking about this new car called The Explorer Mini. They brought it to the house for Mackenzie to test it out. Within 30 seconds, we knew we needed this car for. She started doing doughnuts in the middle of the hallway. Her smile and laughter could be heard from space. This was the first time we saw Mackenzie move under her own power. We had to get this car! Insurance did not cover the purchase and we immediately thought of Bee Mighty for assistance.
A typical day looks like mornings and afternoons with caretakers that make sure Mackenzie gets the proper nutrition safely. They spend time in between meals playing and working in therapy time. We are so appreciative for our wonderful team of therapists who work in person and via Telehealth to ensure our daughter is continuing to learn and grow. She loves music, toys that light up, and watching “Cocomelon” to learn songs about daily routines. Mackenzie is always good for a 2 hour siesta after lunch, which everyone is very thankful for. Mom and Dad take over after the nap and continue working in therapies and playtime. We spend our evenings having dinner together, FaceTiming family who live far away, and squeezing in as much fun as we can.
First, we acknowledge that being in the NICU with your baby is life-changing. You will find strength you never knew you had while you are there, but remember you do not have to go through this journey alone. We will never forget the family and friends who offered to help with meals and laundry during Mackenzie’s stay. Such small favors were a huge help when we were exhausted from worry and decision fatigue. Know that there are people in your corner who are ready for you to lean on them. Take them up on this.
Second, you deserve to celebrate every small step your baby makes, no matter how big or small. Whether that be little improvements in the NICU or making a huge leap in therapy, there is nothing better than taking a moment to acknowledge the progress your amazing little miracle is making. Celebrating those moments will help you get through the tough times. It will remind you that the rain doesn’t last forever – the sun will shine again.