Can you tell us about your family and first learning you were pregnant?
Before Maddox was born our household consisted of me, my husband Dominick, my oldest daughter Sadie who is 6 now and Sienna who just turned 3. We also have two dogs Jaxson, a Doberman and Coco, a Pomapoo. I found out I was pregnant with Maddox right at the brink of the Covid pandemic. He was a surprise for sure. I had to go to all appointments alone, which was very difficult. Around 16 weeks, the ultrasound was showing his brain missing the corpus callosum so we did an in utero MRI which came back fine and we were in the clear. At 20 weeks, the ultrasound tech stepped out and said she was getting the doctor. When the doctor came in, she brought several more doctors with her and began the ultrasound and whispering around me. I was scared. She mentioned they suspected Apert Syndrome. I had no clue what she was talking about. She told me she had not seen a case in over 20 years so she too was going to have to brush up on her facts and call me later. I did my own research and found out apert is very rare (1 in 80,000 births) and something that happens in utero and is a genetic anomaly. Needless to say, I knew this was not going to be a typical birth or hospital experience.
Share what you are comfortable with about the NICU experience for Maddox.
We had a great experience with Maddox at the NICU. The Nurses are amazing and really care about our babies. In a situation that we knew nothing about and we were learning along the way, I think the nurses were to with Maddox. He had an OG tube because his nasal passages were to narrow for an NG tube. It was tough not having him at home but we knew he was safe.
How long did Maddox spend in the NICU what was the hardest part of your time there?
Maddox was there about 2 weeks. The hardest part was holding him. He had a ton of wires and tubes so holding him was tough because we did not want to pull something out or mess it up. However, with his syndrome comes a lot of hospital time so we are getting used to all the wires.
What was the biggest challenge that you had to face for Maddox since being home?
Feeding was our biggest challenge. He did not come home on any feeding tubes and he continued to lose weight. The first 6-8 months of his life, he teetered on failure to thrive. However, the second he could eat baby food/real food we have not had a problem with weight since.
When did you know that Maddox would need extra therapies?
While we were in the NICU they informed us of all the things he would need including therapies. A social worker came around on discharge day and made sure we had everything we needed.
What therapies have really helped?
All of his therapies are crucial in his development. Physical therapy has helped him walk and stand up on his own. Occupational Therapy is helping him eat with silverware on his own and hold things like bats and balls. Speech has also been crucial. We recently found out that Maddox aspirates thin liquids every time he drinks. Speech has helped us figure out the right thickening consistency to prevent that. She is also working with his speech development. He has a high palate, which makes some words difficult to say. We were told Maddox would be delayed in almost all aspects of development. He is to some extent but really only by a few months.
How did you hear about Bee Mighty and what made you apply?
We have an amazing coordinator through the CDSA who has been tremendous with recommendations on how to help us pay for Maddox’s therapies. Maddox is seen each week by all his therapists and our insurance does not cover the cost of all that he needs so applying for Bee Mighty has been a lifesaver.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
Having babies that need extra medical care can be difficult and expensive. But just remember that there are people and avenues to help your family through tough times.