Meet Mighty Christopher as his mom, Kerry tells their story and journey during and after the NICU.
For those reading that may have never had an experience with the NICU, can you explain what it was like learning your child would be in the Neonatal Intensive Care Unit?
It was extremely difficult to learn that my child would be in the NICU and they had no idea how long he would have to be there. I cried a lot. That is, until I saw how strong he was and each day spent with him in the NICU watching him fight was such a motivation for me. But imagine carrying your child and then having the hospital tell you that you needed to go home but your child couldn’t go with you and they weren’t sure how long he would have to stay in the NICU… heartbreaking!
When did you first learn you would be spending (a lot of) time there?
At the hospital when I went into preterm labor. Christopher arrived 3 months early. He weighed 3 lbs 3 oz and he needed specialized care to thrive.
Tell us about the birth of Christopher and meeting him for the first time.
The birth of Christopher was both scary and amazing at the same time. I wanted to hold him but they told me they needed to rush him to the NICU, but they did give me a few seconds with him before taking him.
A lot of times you may not be able to hold your baby for a period of time right after they are born. When was the first time you were able to hold Christopher and what was what experience like?
I really didn’t get to hold him until maybe about 24-28 hrs after him being in the NICU. I just remember being so scared that I might hurt him because he was so tiny! But I remember doing our kangaroo care and the way he felt on my chest. I cried as I held him and I held him as often and as long as I was allowed to. He was so tiny I could fit him in the bra part of my camisole. And he would lay there all day until I had to go to the bathroom. We did this for about 1.5 months until he could no longer fit in my shirt lol my baby spent 2.5 months in the NICU! He came home Memorial Day weekend. He was due June 9th.
When did you know that Christopher would need extra therapies and which ones have been the most beneficial?
my husband and I knew that he was going to need therapy before he was discharged. He needed feeding therapy, then OT and PT due to delays. He also had regular follow up with a developmental pediatrician due to NICU stay.
What was the hardest part about the day-to-day in the NICU? How did you and your spouse manage time at home, work, and the NICU?
The hardest part was driving the 30 minutes each day back and forth and still having to go to work. So I started staying in the NICU with him. Showering in a hospital shower was no fun. Then there’s sleeping. I slept in a chair right next to him with my hand in his isolate so I could hold his hand and he’d know I’m there. There was no sleeping, really. NICUs are noisy with all the machines and nurses making their rounds. But I didn’t let that stuff bother me as long as I was able to stay with him that’s all that mattered. My husband would manage the day to day at home so I could be at the NICU. Then there were times when we would alternate so that I can go home and get a decent shower.
Tell us about those angels on earth the NICU doctors and nurses did they help you through the NICU experience?
Tthey were, most of them, amazing! One nurse in particular would take extra care of the kiddos. She would cut they’re bandages into cute shapes like hearts, etc. and she was always so detailed in delivering the good news. She looked out for me so I could be there for Christopher.
Do you have any suggestions or coping suggestions for other Moms in your position?
Honestly if you pray, do that. Having a strong support system helps. Envision where you want you little one to be and focus on that. If you can, spend as much time with your child in the NICU just to make sure he’s getting what he needs. In addition, don’t forget to take care of yourself. I got sucked in and forgot about me, luckily I have a loving husband and family support who would stay with him so I could get a break or sleep in my own bed instead of the chair in the NICU. But remember to take care of yourself. If you can pump! Pump often to get your milk production up. The first thing that comes out is really important (colostrum) this is really good for the baby. There may be times when it seems like there’s nothing coming out but don’t give up. When I first started pumping, I would get like 1ml or 2ml but luckily being that he was so premature that was good enough. But I kept pumping until I really started to produce that milk by about week 2 or so. I was pumping 28-32 oz/ day sometimes more. But I knew that he needed it. It’s healthier than formula. A lot of the NICU babies were getting sick from the formulas because their premature systems couldn’t process it. Drink lots of water before and during pumping. It helps. Lastly, enjoy your wins as your little one makes progress and take the set backs in stride. You’re both fighting and you’ll both be ok.
What was the biggest challenge that you had to face for Christopher since being home?
His developmental delays were challenging but he was diagnosed with ASD around age 3, and that had presented some new challenges.
How did you hear about Bee Mighty and what made you apply?
I found out about Bee Mighty through Kids with PossAbilities. I applied because there’s a specialized camp that addressed Christopher’s ASD issues and insurance didn’t cover it. At the time, my husband had just gotten laid off so money was really tight and the grant really helped us out. He was able to attend the camp.
What does a typical day with Christopher look like now?
Never a dull day! He wakes up every morning moaning about going to school and wanting to take a day off lol he loves to run, jump and pretend to be a dinosaur. At times he has meltdowns when he doesn’t get his way or if he’s asked to do something he doesn’t want to do. Eating is particularly difficult because he doesn’t eat a lot of foods. He tantrums that it’s not fair that he has to eat everyday. Lol he is an avid participant in the Special Olympics of NC. I love to see him participate and thrive in this environment.
We absolutely love his quirks. I wouldn’t have him any other way. He cracks me up most days. We just love our little Christopher.