Dear NICU Parent,
Almost four and a half years ago, my husband Shawn and I sat where you are today. Our daughter, Avery, was born 14 weeks early, weighing 1 lb., 5 oz. — and we had no idea what her future would hold. But 234 days after giving birth, we were finally able to take her home on oxygen and with a feeding tube (G button).
Everyone’s NICU story is different, but we want you to know you’re not alone. Whether your NICU “journey” (are you tired of that word yet?) is a few days, a few weeks, or a few months, there is something that bonds all of us together: You have a baby whom you haven’t taken home yet. That’s a terrible feeling that NO ONE should feel.
Nothing can prepare you for being in the NICU, and I’m sure you have received tons of advice — much of it being unsolicited and not necessarily very helpful, even if the intentions are good. I’m here to share a few things today that helped us get through some of our toughest days in the NICU.
- Think of ONE good thing that happened each day before you go to bed. It could be ventilator or oxygen settings being lowered, no desaturations during a diaper change, taking an extra 15 mls. of milk or formula, or maybe just that you and your child survived the day.
- Take it one day (or one hour) at a time. Try not to get ahead of yourself. There can often be way too many possible outcomes for your child’s situation, and the possibilities can often be overwhelming.
- Don’t compare your child, or his or her NICU “journey,” to anyone else’s. This was a hard one for me, but you have to remember that every child is different.
- Connect with other NICU parents. They are truly the only people who could potentially understand what you are going through.
- Speak up for your child. A parent’s intuition is a powerful thing and should be trusted. Develop a relationship with your child’s doctors and nurses, and learn to feel comfortable speaking up.
- Give yourself permission to be sad. A good cry can be just what the doctor ordered — an acceptance of the sadness you are feeling and yet a freeing feeling of letting some of the sadness go.
- Try to let go of any guilt you may have. I will admit I am still working on this one.
- Take care of yourself. Another one that I struggle with. Try to do something, once a day, for yourself. Even if it’s just taking a short walk around the hospital or grabbing a snack nearby.
Hopefully this is helpful. Hopefully at least one of these pieces of advice will resonate with you.
Our NICU stay changed me forever. It shook me to my core, made me reevaluate everything I once thought was important, and I will never EVER be the same person again. But I’ve learned a lot. I’m a better person for what we endured.
So, to all the NICU parents out there who may be reading this . . . I’m sending you love and prayers of strength.
YOU CAN DO THIS.
This is our daughter today; she continues to be my constant reminder of hope and courage.
We are, forever and always, Avery strong.