Maelee was born at 33 weeks gestation and spent the first 39 days of her life in the NICU. Today she is a beautiful, loving, amazing 11-year-old, and we couldn’t be prouder of her! She is truly our miracle.
Maelee was our first born, so we didn’t really know what to expect during pregnancy. During the last few weeks of pregnancy I just knew something wasn’t right. The last week of pregnancy I spent many days at appointments and being monitored to be sent home on a Friday to complete some testing at home for preeclampsia. On Saturday morning, 5 minutes after the testing was completed my water broke and, in that moment, we realized we would meet our daughter 7 weeks earlier than planned.
During Maelee’s 39 days in the NICU she split her time between two NICUs. Maelee initially struggled with breathing as her lungs were underdeveloped. They said her lungs were that of a 28-week preemie so many medications and medical interventions had to be used to stabilize her. Maelee suffered heart failure at 28 days of life and was transferred to another NICU for higher level of care, this was the original day she was to go home with us. We are forever grateful for the amazing team who noticed the change and acted quickly. To this day no one can explain why she got so sick or how she recovered as there was no known cause. The doctors were perplexed, and I will never forget them saying we don’t have an answer, but God does.
Maelee was diagnosed with Cerebral Palsy when she was 10 months old, and that conversation was filled with all the things she would more than likely never do. We were told she would not walk on her own, talk, participate in her daily life, and possibly struggle with feeding forever.
Maelee must have heard that and found that preemie power again. She has shown the world that you cannot tell her what she will do. Maelee does use a wheelchair at times but can walk, loves to eat by mouth, talks nonstop, and is now learning to read despite her other challenges her life has been filled with miracles.
When Maelee was 6 months old, we knew we needed more help. She was stiff and would cry for hours with no answers. She began receiving services in the form of private PT and OT at 6 months and with the CDSA at 10 months following her CP diagnosis. Maelee began ST at 18 months old. Maelee was diagnosed with autism at 3 years of age and since then has received therapy services off and on for that as well. Maelee has other diagnoses that we do not openly discuss as that is a personal part of her story. With all that has been thrown her way she is rocking the life she was given and celebrated for each milestone she achieves.
Bee Mighty is an organization we had heard about while in a waiting room for a doctor’s appointment but never thought we would need the assistance. We are forever grateful for their assistance in providing her ABA therapy, educational therapy, and a few other services throughout the years. Without Bee Mighty we truly do not believe Maelee would have achieved
So many milestones and with continuation of services has been learning to read!! Educational therapy has been a blessing and without Bee Mighty we would not have been able to afford it as it is not an insurance covered service.
Today, Maelee participates in school virtually and while delayed, she is really learning to shine and show the world what she is made of. She participates in therapies weekly and ABA daily. She does require medical interventions throughout the day, and we are lucky to be home with her and have an amazing village to help meet her needs always. Now that she has gotten older, and the medical appointments have decreased she is really learning to advocate for the things she wants in life.
My best advice for any family new to the preemie world would be find your village, research, and never let anyone tell you what your child will or will not do. They do not know, and these precious preemies are filled with determination unlike anything else. You will find your village in places you never imagined and the support of organizations like Bee Mighty are there to help, never feel bad for asking for help!
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