Our Story
It All Started October of 2022
We were pregnant with our second child who we knew was going to be born via C-section due to complications from my first birth.
When Madison arrived, a flurry of activity ensued as the NICU specialist team was brought in to assess her. Madison has a rare condition called Epidermolysis Bullosa (EB) and was born missing large areas of skin. Neither of us had heard of this condition, or knew how it would change our lives forever.
We spent the first week of her life in the NICU learning about how to care for her complex condition and helping her catch up on weight gain. We were discharged, but quickly found ourselves back in the NICU when she started to show signs of poor weight gain.
We later found out she was silently aspirating and would require a g-tube to safely get the calories she needed to grow. We spent another month getting through the placement and recovery from this operation before we were able to officially take her home (picture of the day we took her home to the left).
Little did we know that we would spend the next year and a half in and out of the hospital anytime Madison got sick due to narrowing her airway caused by her underlying condition.
Once we finally thought we were 'out of the woods' we found out we were pregnant with our third child. We were excited, but nervous, there was a 25% chance she could also have this condition, but what are the odds?
The odds were not in our favor. We found out at 6 months pregnant that Kayley also had EB. Words cannot describe the feelings we went through as we relived what we had just gotten through and planned for what was to come. We had meetings, discussed birth plans, and partnered with the hospital to deliver her safely.
We were hopeful the condition wouldn't impact her the way it did Madison, but we were wrong. Kayley was born in April of 2024 and had major issues with inflammation in her lungs which caused her to have a NICU stay of almost 2 months when she was first born.
Similar to her sister, we found ourselves admitted to the hospital with any illness due to the increased mucus burden and issues with maintaining her oxygen levels.
During our numerous admissions, receiving meals and care items from our loved ones always gave our family a boost to get through that day. It was in receiving these acts of kindness I made it my mission to find a way to do the same for others once I was able.
It is my hope that in providing these resources, we will be able to support moms (and families) going through the emotionally draining, isolating, and unprecedented chapter that is their NICU stay.
If you're a NICU mom and you're reading this, you too will make it through this chapter. There will be hard days and days that feel like you won't, but you will. You can do hard things.