My daughter was born exactly 25 weeks and zero days into my pregnancy, when they wheeled me into an operating room and cut her from me precisely and swiftly to save her. It was nothing like what I expected when I was expecting.
She weighed 1 pound, 8.6 ounces and was thirty days old before I was allowed to hold her. I learned a lot from that experience, about diapers smaller than credit cards and the right way to insert a feeding tube and how to uncover hope in the middle of traumatic circumstances.
I also learned that people say some pretty outrageous stuff to you when you deliver a baby fifteen and a half weeks before your due date. I mean, you’d think that people would say comforting things but no.
They say things like “At least you get to sleep through the night!”
After spending 156 days in the NICU, I heard my fair share of such cringe-worthy remarks. In my heart I know that most people are well meaning and that they just don’t know what to say. So here is a helpful list of the things you definitely should NOT say to the mom of a baby in the NICU and the one thing that you absolutely should.
1) “At least you get to sleep through the night!” – This one always surprises me because who thinks that a mother with a child in the hospital is sleeping well? In reality, nighttime was the worst for me because our hospital did not allow parents to stay overnight which meant that I had to be away from my baby every single night during the time she was the most critically ill. It was excruciating to be separated from her and I lay awake worrying all night long.
Plus, most preemie moms have to pump milk just like they would for a newborn. So that meant that every two hours throughout the night an alarm would sound and I would strap myself to a breast pump while I called the hospital to get a status update. Sleeping through the night was not “a thing.”
(Actually, it’s still not a thing. Someone please send me some coffee, stat.)
2) “Aren’t you worried that all of those heavy medications are going to mess her up?” – Um, well no, I wasn’t until you said that. I was mostly focused on how they were, you know, keeping her alive. But thank you for that. That was super comforting and did not at all give me yet another thing to fret about while my baby is extremely sick. Oh my gracious.
3) “You’re being overprotective, kids need to be exposed to germs!” – Actually, children with compromised immune systems should definitely not be exposed to germs. In fact, they are basically the exact group of people who should stay away from germs. Like, scientifically and all that.
But I will cop to being overprotective. There is an incredibly difficult transition from the NICU to everyday life. I spent six months watching my daughter struggle to live and took her home with a warning to be vigilant about keeping her away from possible illnesses. For a long time my life was entirely consumed with keeping her alive and it is very hard to shift out of that mentality.
Plus, after experiencing so much trauma I am honestly unsure which of my fears are from being a first-time mom and which ones are the residual effect of a long-term NICU stay. It means a great deal to me when a trusted friend kindly tells me “I think you might be struggling with something left over from your NICU time” versus someone shrugging off my worries with a callous “You’re so overprotective.”
4) “You’re so lucky that you didn’t have to deal with the 3rd trimester!” – Missing out on the 3rd trimester is kind of what landed us in this whole mess. So I’m not feeling super grateful for that particular scenario. I’d give anything to know what it feels like to carry a pregnancy to completion and the peace of mind of knowing that my baby was safe inside my womb instead of in an isolette on a ventilator.
5) “Is she going to be normal?” –While it is true that babies born very early have a high risk for developmental disabilities or delays, there is no way of knowing what might happen. But asking a mother if their baby is going to be normal is an insensitive question. I understand the curiosity but this is better left unsaid. I think we can all agree that even if issues did arise, none of us would ever love our children any less.
6) “I could never do that” – For a long time this phrase made me feel angry and I wanted to bite back a retort, “Well, I don’t really have a choice, do I?” But time and hindsight has softened me a bit. I think it is born out of a deep-rooted fear, one that whispers to us that we aren’t strong enough to handle the hard things. From the outside looking in I am sure it does look like something that we could never handle but on the inside, in the living it out, you learn that you can. And that you will. Because your child needs you. For me, it made a tenet of my faith all the more real: “For when I am weak, then I am strong.” (2nd Corinthians 12:9)
The thing that I appreciated the most was when people simply said, “I am sorry that you are going through this.” I found comfort in an acknowledgement that this situation was unbelievably hard. It also freed me from having to carry the emotional weight of tough conversations when I was already barely keeping it together.
And when you just aren’t sure what to say, a simple “I’m thinking of you” will always suffice. Sometimes it just helps to be remembered.
Kayla’s first book, Anchored: Finding Hope in the Unexpected, is available now. Don’t miss it!