This article was originally published as a Facebook post on June 28, 2019 by NICU parent and WHA patient Joyell Hardy. Thank you to Joyell for sharing her emotional experience in such a candid way. Read her first post: Tips for NICU parents and the people who love them. Photo credit: Ericka Westmoreland
Having a baby is HARD work. Going through postpartum everything is hard. Doing it without your baby in your arms is an unnatural pain. You can probably anticipate a lot of what I’ll write here, but I’m writing it anyway.
Firstly, to the mamas who never get to take your babies home, you have my undying love and respect. I respect you for taking that next breath. And the one after that. And the thousands more to come. I honor your pain and sadness. I admire the way you forge a new path with a changed heart, mind and body. I love you.
To the mamas who DO eventually get to take your babies home, I speak to you and your loved ones now.
You will grieve. It is inevitable. Whether your baby is there for one night under lights or for 103 days, you will grieve. You will grieve “normal” things as well as “silly” things. Honor that.
My babies came on a Thursday morning by way of emergency c-section. I broke out the following Sunday. That Saturday morning while I was still in the hospital myself, there were two people from my twins’ care team in my room talking to me. I think it was a physical therapist maybe? And someone else? I honestly don’t remember. My phone was on silent, but I had an alarm go off. I immediately went to silence it to give my attention back to the care team. But I burst into tears when I saw the alarm “Baby Shower 1pm!!!!!!” They were so loving and understanding and opted to leave immediately and come back a bit later.
Is it “silly” that I cried (bawled) over a missed baby shower? Nope. I didn’t care about the stuff I wasn’t getting or the games I was missing out on. (For the record, I’d had a shower the week before for friends and family, this was for my husband’s co-workers which we ended up rescheduling. My husband works on the same floor of the hospital that my babies were discharged from. So we slipped away from the NICU for about an hour to his break room.) It genuinely wasn’t about the event or the things. I can’t fully articulate what it was. The closest I can come up with is feelings of failure and unmet expectations.
Feelings of failure. Oh boy. It’s so easy to second-guess yourself as a mom. Any mom! As a NICU mom, you wonder if you’d taken different vitamins or called the doctor sooner or not had that ice cream cone or not walked up the stairs or any number of things. I remind you once again: IT IS NOT YOUR FAULT!!! But in the moment, it FEELS like your fault. It FEELS like you’re not at your baby shower because your body sabotaged you and failed. It feels impossibly hard to believe that sometimes things just happen. In that moment, it was my fault I was separated from my babies who were fighting for their lives on another floor instead of safely in my belly being fed gluten free cupcakes.
Expectations are another difficult one. I speak as a woman who only ever dreamed of being a wife and mother. We had our babies two weeks after our 9th wedding anniversary and after years and years of treatments, prayers, and finally IVF. I speak of my own story, but even the mom who unexpectedly and even fearfully finds herself pregnant, I believe my feelings likely apply.
When I was 20 weeks pregnant, I had scheduled an appointment with a chiropractor who specializes in prenatal and infant care days (three, I think) before I was put on bed rest. I cried to the receptionist when I had to cancel that appointment. I cried when I emailed the photographer saying we had to cancel my maternity photo shoot and could we please apply those funds to a newborn shoot I hoped and prayed would still happen someday (it did and the pictures are pure perfection). I had HOPED to be able to do all the normal pregnant things: pictures, pampering, showers etc. My life is no worse because those things were delayed or canceled. But the unmet expectations hurt.
Moms will grieve that they aren’t getting those sweet pictures of a baby’s first bath and snuggling with mom and leaving the hospital a few days later. They’ll cry that the outfit in their hospital bag gathers dust as their child is hooked up to endless monitors. They’ll bawl over the fact that they are posting scary updates instead of “normal” new family pictures. They will have their hearts broken repeatedly as they sit and watch, unable to hold or comfort their child.
We all expect things to go a certain way. Whether it’s a “silly” thing or a genuinely gut-wrenching thing, it is real.
Do not brush off any sadness or grief you or a loved one are feeling. Do not think it silly that a mom is upset when a nurse puts her baby in clothes for the first time instead of mom getting to. Do not speak of “all the other firsts” she’ll get with that baby. If you want to start any sentence with “at least…” please stop immediately and go buy that mom some chocolate instead. She probably won’t eat it anyway as food isn’t allowed in NICU rooms/pods and she’s probably too stressed to enjoy it anyway. But the thought will be appreciated. Do not belittle or demean the feelings of a mourning, hormonal, anxious, loving mother. Just honor the feelings, hug her, text words of love and prayer, ooh and ahh over every picture she shares, and love endlessly. You can’t fix it.
When I say “honor” their feelings, what I mean is allowing them to feel anything and everything they are feeling without judgement. Those “at least” or “aren’t you glad” sentences undermine feelings, saying they should be grateful things aren’t worse. You don’t have to indulge thought, but you always have to honor them. “It’s all my fault, my body failed me and my baby!” You can still honor the deep hurt inside while reminding mom that she is in fact incorrect. “I cannot comprehend the pain you are feeling. I love you and am here for you to cry on. Clothes can be washed, so cry away my dear. But please remember, your body is the reason that baby is here. Your love is the reason that baby is fighting. Your body grew an incredibly beautiful human! Your body is a miracle that created another miracle. There is no fault to be had here, especially from you, sweet mother.”
Mothers may grieve the fact that their futures are unknown and may forever be different than they had planned. Some babies experience trauma that leaved them forever changed be that physical handicaps, scars, lifelong illness, brain injuries, etc. Some may end up with perfectly healthy children, but still grieve the possibility in the moment that they may not. Mothers are going to get scary news in the NICU and not know what to do with that information.
My babies were born at a hospital about 40-75 minutes away from our house depending on traffic. The hospital my husband works at is 20-30 minutes away. They were on divert the night I went into labor. When my babies were 22 days old, they were transferred to that closer hospital. I had been very ill and wasn’t allowed to even see my babies for about five days (talk about grieving!). They were transferred by ambulance one at a time to this new hospital late at night. The following morning, I was finally fever free and could go see them! I walked into a brand new environment with brand new staff. Pretty much all of that staff was in their room with baby B and alarms were almost continuously going off. Before we’d even finished washing our hands, Jody, the NNP came to talk to us. She told us Baby B had “frank blood in her stool” which is a potential sign of NEC (necrotizing enterocolitis) which is almost always surgical and often deadly to preemies. I was terrified. Baby B was ordered NPO (no food). They spent about 10 hours trying to get a line into her not-yet-up-to-birth-weight-body to start giving her TPN (nutrition directly into her veins, bypassing the digestive tract altogether). They put her on heavy duty antibiotics and ran blood tests and cultures. What if my baby is sick and dies? What if she’s sick and makes it but loses half of her bowel? What if, what if, what if. I wasn’t allowed to hold her at all that day. The blood cultures came back positive the next day (bad news) so they re-ran them and continued culturing the first to see what exactly it was positive for. It turned out to be contaminant (baby wasn’t sick, something just got in the culture). That was the 2nd time we’d had a positive culture end up being contaminant. Baby did not have NEC. They suspect the stress of transfer was just too much for that tiny little body. She was sick, but not with anything deadly. I could breathe again.
As I look back on that horrible day, I honor that it was an impossible day. Just because it wasn’t NEC doesn’t mean that it wasn’t just as scary as if it had been NEC. There was so much fear of the unknown.
Honor the fear, the anxiety, the grief, the loneliness. Honor these feelings, but do so with love.