How to Support a NICU Family
Warning: This post contains emotional content and photos that may be triggering to those who have had a premature baby, lost a baby or experienced a NICU stay. I normally don’t like to share things that are so personal, but I felt the need to share this in the hope that it helps another family. This post goes out to all the parents out there who have experienced a NICU stay with their baby whether it be one day or 100, they are the strongest people I know.
When I got pregnant, I never imagined that after giving birth my baby would need to spend time in the neonatal intensive care unit (NICU). I had a very strong feeling throughout my pregnancy that Callie was going to arrive early, but my prediction was a lot closer to a week or two early, not almost six.
There are a lot of emotions that come with having a baby that needs to spend time in the NICU before coming home. I was envious of all the sleep-deprived parents who got to bring their baby home right away while I was leaving mine at the hospital each evening. I was angry that I never had the chance to moan about how uncomfortable the ninth month was. I was sad that I never had the chance to get the baby’s room ready and “nest”. I felt guilty that my body failed me and my baby. At the same time, I was so grateful for the amazing care from the nurses and doctors in the NICU who cared for Callie during her stay. Especially the nurses that fielded my 12:00am, 3:00am, and 6:00am middle of the night phone calls with patience and reassurance when I woke every three hours to pump the milk I’d bring my baby every morning.
I was extremely lucky to have another Mom (shout-out to Julie!) in my life who was an incredible support person throughout our whole experience and reminded me that it was OKAY to feel all the feelings. She was there to just listen when I needed to vent and encourage me to think positive thoughts. “Nobody fights like a preemie and their Mama,” she told me. “Callie will be home before you know it.” And so, after the longest two-weeks of my life, Callie did come home.
While everyone almost always means well, there were a couple of frequent comments and questions that we’re hard for us. I thought I would share them here with the hope that it will be helpful for those supporting other families who are going through the same ordeal.
“At least you didn’t have to have those last XX uncomfortable weeks being pregnant.”
This is one of the most commons things we heard, but it’s one of the most hurtful things a NICU Mom can hear. Yes, those last few weeks of pregnancy are uncomfortable for the Mom, but they are some of the most critical weeks for the baby’s development. It’s when a baby learns how to suck, swallow and breathe at the same time. It’s when they gain weight/fat to keep them warm and the body learns to regulate its own temperature without help. It’s when their lungs finish developing. My baby didn’t get a chance to do those things and I would have gladly traded being a blimp, so she could have had those last few weeks.
“Now you have time to recover before the baby comes home.”
No Mom cares about this when they have to leave their baby every night at the hospital. In addition, in the United States there is no mandated paid maternity leave policy so many moms are obligated to go back to work immediately while their baby is in the NICU so they can begin their leave once their baby comes home. In my opinion, this is such a cruel policy and one I hope the U.S. changes within my lifetime. No mother should have to separate from her newborn baby because they don’t have the support to take time off from work. While my company has a supportive maternity leave policy, I still had to take extra unpaid time to accommodate having a premature baby. Not to mention all those families with other children at home which complicates having a premature baby even further.
“Wow she/he is so small!”
Yes, I know my baby is smaller than most. I am VERY aware of it that she may not be even in the first percentile until she’s 6 months- (1 year-, 2 years-, etc) old. It’s just not necessary to state the obvious. Instead tell the parents how my baby looks strong or point out something the baby is already doing on their own (ex: breathing, feeding, etc).
“Nesting and finishing the nursery isn’t a big deal.”
Being a type-A person, it was really important to me that everything have a place and the room ready for the baby to come home to. When she was born her room still had our old box spring and mattress, we had zero newborn clothing purchased, and postpartum supplies for me were almost non-existent. I was also spending 12 hours a day in the NICU which didn’t leave a lot of extra time to decorate and get her nursery ready. This really caused me anxiety and having someone brush it off like it wasn’t a big deal was hard for me. Instead, offer to help clean and organize the baby’s room while the Mom/Dad spend time in the NICU.
“When is your baby coming home from the hospital?”
Most of the time in the NICU, parents don’t know when their baby is coming home until just a few days before. It’s a frustrating question because they want that day to be today. This was also the case with Callie. One day she went 24 hours without her feeding tube and the very next day they said, she’s going home tomorrow! It’s natural to want to ask the Mom and Dad when their baby is coming home, but it’s a sensitive question that tends to make them more aware that their baby isn’t with them. Instead, point out how each day is one step closer to them bringing baby home without asking the pointed question.
“Don’t be so paranoid, germ exposure will help their immune system.”
Our pediatrician essentially told us that we couldn’t bring Callie anywhere in public until she was 8 weeks old and had her first round of shots. Premature babies have underdeveloped immune systems, so something as small as a common cold could be life-threatening for a preemie baby. Please be patient with the Mom or Dad who has asked you to wash your hands five times before touching their baby and be respectful if they’re not ready to have you hold them yet. There will be plenty of time to snuggle their babe in the future!
“I never loved the newborn stage.”
Many NICU parents can’t snuggle their newborn baby without cords and tubes attached for several weeks or more and so to complain about something like that can be very hurtful to them. Sometimes in the middle of the night when I feel myself getting frustrated with her for waking up yet again, I remind myself that I am LUCKY that I get to wake-up to feed my baby and hold her close when there are families out there that didn’t get to take their baby home from the hospital. There are Moms out there who had to say goodbye a child too soon and others who yearn every day to be Moms. Yes, the newborn stage is tough, but the fog will eventually lift and it’s impossible to get those days back.
Today, we have thriving, smiley 4-month old baby girl who is doing just great! She is silly, stubborn and loves to give and get kisses. She’s a fan of being outdoors and listening to music just like her Mama and Daddy and we are so proud of how far she’s come.