How I worked to create confidence after my son’s 135 day long NICU stay

Guest post by Courtney O'Dell-Chaib
Photo by Dave Q, used under Creative Commons license.

After being married for less than two months my water broke one morning in the bathroom while I was getting ready for work. I was 23 weeks pregnant. After two terrifying weeks in antepartum my little guy rushed into the world as a 25-week micropremie. He was one and a half pounds and determined to be in this world for the long haul! Our NICU experience was beautiful/painful/terrifying/life-changing. Most of all it shook every conventional thought I had about the precariousness of life and what it means to be a mother.

After 135 days and three surgeries, we brought our son home with a feeding tube, an on-call nurse, three therapists, and five doctors. The NICU prepared me to handle any emergency. I knew what to do if my son stopped breathing or if his tube fell out. What I was not prepared for was how to deal with the overwhelming fear of caring for this tiny person outside of a carefully monitored environment. I was not prepared for the moments of panic every time I needed to leave the house with my son. I worried about him getting sick. I worried about strange looks from strangers as I fed my son through his tube. I worried about not presenting myself as completely confident and in control to every doctor/nurse/specialist/social worker/mother at the park. I may have plastered a smile on my face but inside I was completely falling apart in my worries.

My son is now two and a real firecracker! Eventually my spouse and I were able to create some peace through our daily routines but staying confident takes daily work. I try and fail more than I try and succeed but here are some things that work for me:

I made myself leave the house

In the NICU we received wildly different suggestions for when we could take our son out. After six months! After one year! After one year and only completely covered in a blanket and never to any place with more than just family members! I was terrified about leaving the house but after five months of basically living in a hospital I wanted so much to go to a coffee shop, out to dinner, to get some groceries. Most of all I wanted people to see my baby who worked so hard to be here. I wanted to experience the joy of strangers cooing at the perfect being we created. So one day, we went to lunch, and took the baby. I cried the whole time. But the next time we went out it was easier. Eventually I was able to take my son with feeding pump in tow wherever I wanted to go. It was important to balance health concerns for my son with concerns for the emotional health of my spouse and myself. I consider any strange looks we get when we feed our son through his tube an opportunity to educate others and if they ask I will tell them more than they ever wanted to know!

I stopped worrying about worrying

I think it is impossible to not worry about your child and especially when you have too much information about growth and development. I worried about my son’s progression and then worried about worrying too much! I kept trying to force myself to be more at peace but I ended up frustrated and disappointed. Now I let myself have some moments of worry (is he growing fast enough, will he ever eat, will the kids at school make fun of him) and then I try to do something else. I take pictures and I look at old NICU photos to remind myself how far he has come. We celebrate every milestone — his birthday, his gestational birthday, his NICU graduation day, as a reminder that the love we are giving and receiving is what really matters.

I listen to advice but also fiercely advocate for my son and myself

I think people love to give mothers advice, especially unsolicited advice. Caring for a child with certain special needs everyone seems free to advise me on best parenting practices. I appreciate others concern but often this advice will collapse my day into a full-on worryfest. Through hundreds of medical appointments I eventually learned to listen to advice but also choose confidently to do what I thought was best for my son and our family. It requires a lot of bravery to stand-up to medical professionals and speak your mind. Medical experts are a very important part of my sons care but no one knows my son and our family dynamic better than me. To be the mother I wanted to be for my son I had to learn to speak-up even if it meant disagreeing with what others thought was the best way to parent my son.

I allow my son to surprise myself and amaze others

The first few weeks my son was in the NICU I tried to consume all the information there ever was about micropremies. I bought books. I lurked on message boards. Ultimately, I made myself sick through survival statistics. I was very aware that my son’s chances of surviving and thriving were slim. But with every week and through every crisis my son kept fighting so I stopped reading. I realized knowing that information did not change one bit what my son was or was not capable of accomplishing.

Everyday now that he is home he does something that surprises me. He has far surpassed all the long-term goals made for him by others and good for him! Sometimes it hurts my feelings when someone at the park says “He is so small!” But then when he races past them to tackle that slide all on his own I allow myself a little smile at his pulling the rug from under them. I work hard to change the voices I hear that say “He may not…” to but he may also completely exceed all our expectations.

Comments on How I worked to create confidence after my son’s 135 day long NICU stay

  1. I love this post. We celebrate all my preemies milestones too. We just had a NICU discharge anniversary party and our due date party. Celebrating their 1st birthday was really hard for me (we’re only a year out from their birth so the emotions are still a little raw) so celebrating the other important dates has been a great way to acknowledge everything we’ve all accomplished.

    Also, great advice about getting out of the house. In the first few months after our preemies came home I had debilitating panic attacks at the thought of taking our babies out of the house. I finally had to just pull the band-aid off quick and do it. Also, like you I’ve taken to giving people more information then they’d like if they ask about our preemies size, health or breathing. talking to people about prematurity gave me the confidence to not melt when we got a side-eye or inappropriate comment or my anxiety levels got to high.

  2. Court, I already posted on your FB, but I have to say again that I love you and your little family so much. You’re my role model. I mean it when I say that I hope my girls can learn as much from me as your baby boy (toddler now!) will be able to learn from you.

  3. My cousin’s baby was born at 25 wks. I’m glad that she was staying with us at the time because she practically lived at the hospital for 5 months. My cousin bought a flip flop keychain and took a picture of it next to the baby’s foot. It was amazing to think that it fit. Now that baby is 7 years old and bigger than my almost 9 year old.

    Congrats on your baby! The NICU is a big learning curve. Your baby is lucky to have such a strong advocate for a parent.

  4. What a wonderful post! My cousin was also born around 25 weeks and it was recommended that she be put “in a home.” She had multiple challenges (CP, developmental delays, near total hearing loss, etc etc) but she was family and that’s how it was going to stay. Today she lives on her own in a home that we modified for her (very low countertops, sinks, etc, so she can scoot to them on her knees without needing to stand) and is doing fantastically!

    I was also a NICU baby, half of a set of premie twins. Today I’m continually amazed at my mother’s strength dealing with two kids on feeding tubes and one in a cast from her armpits to her toes. Someday your son will be SO PROUD of you and all that you did!

  5. I once met a five year old who was born at only six months. Like yours, he was quite the little firecracker, and he really made me smile 🙂 I’m so glad your son is healthy and that you’re finding yourself able to grow so much as a person and a mother.

  6. Yay for you! We just finished a four month hospital stay with our son (who was full-term, but had a number of heart defects that ultimately required a transplant), so I am right there with you. The idea of having this fragile little creature out in the world is petrifying, but much easier once we’ve internalized the fact that he isn’t actually made of glass, and that people around us really are willing and able to accommodate his needs. Your perspective and clarity are wonderful to read about.

  7. Where was this post when I was managing my preemie almost 7 years ago? What wonderful advice. I hope it helps some other parents of preemies.

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