Some part of me will always worry about this little butter bean.
“Oh the pain they have caused us. The evils which have never happened.” This quote from Thomas Jefferson hits me in the face like a blast of air when you open the fridge. Preemie families seem to have an extra helping of worry, don’t we? In the NICU, the worry is like a fog. It surrounds you constantly. It fills the air around you. You breathe it in and out every single minute of the day. Will my baby eat? Will my baby come off the vent? Will he live? Will he get NEC? Will his PDA close? What if he gets an infection? What if he has to have a shunt? How many surgeries will he have? What about his future?
During our 151 day NICU stay, I lived in constant worry that my phone would ring. You never, ever want the hospital to call when your baby is in the NICU. The call is almost never for a good reason. Even today-if my phone rings and I see the 3 number pre-fix of the hospital, my heart drops to the floor.
I have always been a bit of a worrier. Usually though, I could reason my way out and put the worry aside with this little gem, “Heather, stop worrying. The odds of {insert worry here} happening are so slim”. Then, those slim odds? They found a GPS and navigated right to my house and parked. For quite a while. “Only 10% of couples have unexplained infertility.” Don’t worry. “The odds of you having another miscarriage are really low.” Don’t worry. “The baby looks great!” Don’t worry. “The chances of you having this baby before 26 weeks are so low-only about 5%.” Don’t worry. It seemed as though the slim odds were singling me out.
Worry is part of the journey. There’s no way around it. And your worry isn’t without good reason. The fact that your baby is (or was) in the NICU is a clear indication, that for you, the odds didn’t work in your favor. The bad thing that wasn’t supposed to happen, the thing that was such a small chance of happening? Happened. To you, and to your sweet baby. In fact, your baby is the manifestation of slim chances. So now? The promise of a small percentage does nothing to ease your anxiety. The term, “it’s such a slim chance” doesn’t make you feel better. The “what if’s” follow you even after you come home from the NICU. What if he stops breathing? What if he never eats? What if he never walks? What if he can’t communicate? What if his shunt malfunctions? What if he has complications?
When we brought our 24 weeker, Tucker, home from the hospital he was on oxygen and an apnea monitor. We were so worried he would stop breathing, we scheduled our nights into 3 hour segments so one of us would be awake with him for 24 hours of every day. This, even though he was hooked to a monitor at all times. That would have seemed insane to me, before we had him. Then again, before we had him, we had never seen a baby stop breathing and turn pale and gray. Tucker had shown us that trick more than once in the NICU. And so we worried. Still do, 16 months later.
The anxiety has thankfully eased somewhat, the longer we are removed from the NICU. But there were days, even after we came home, when it was overwhelming. There are times now when I wonder if the worry will ever subside altogether. When he walks? When he goes to school? When he talks? Probably not. This experience has changed me in that way. I have however, found a balance. I understand that worrying about things that may not happen can get in the way of being present. It can rob me of the triumphs of today. It might even put unintentional limits on Tucker’s capabilities and his experience of life. Or worse, it could create in him a spirit of worry or anxiety.
There are preemie parents who can logically think about their child’s circumstance separately from the potential hardships, and so, over-worrying isn’t as consuming. There are preemie parents who have had far worse experiences than we have. Those situations where the hits just keep coming, without mercy. I have watched those parents and with each valley they have somehow learned to tame the worry roar so they are able to focus on the here and now. I have learned great lessons from those parents about being present. In those lessons, I have found some ways to keep anxiety about Tucker’s future from overtaking our life.
If you are an over-worrier, like me, here are some things that I learned along the way that might help you keep your worry in check:
- Your worry isn’t without validation. You experienced some scary things.
- Every preemie is unique. Let your child show you all that he can do.
- If you are in the NICU and have preemie books and resources, try to only read the chapters and sections that are pertinent to your baby, right now, in their immediate circumstance.
- Live and think in the present.
- Limit or avoid internet searches based on “it could be…” or “what if …” scenarios
- Connect with a network of preemie parents who are a year or two removed from the NICU experience. They have great perspective.
- Seek out support or a counselor if the anxiety is overwhelming all the time.
- For me, faith and prayer was a big part of the equation-find that perspective for you.
I won’t say by any stretch of the imagination that I am worry free. I don’t think any parent, preemie or otherwise, can be. In fact, it will be an awkward moment when we move Tucker into college and I break out the under-the-mattress breathing monitor. I will say though, that when I begin to get worked up with worry about something that may or may not happen with Tucker, I have been able to find perspective. I realize too, that my friend Tommy Jefferson was right. Many of the things I worried over, never happened. Maybe the slim chances aren’t out to get me after all.