7 Things I Wish People Knew About Prematurity
Five years ago prematurity happened to our family. Out of the blue, it sucker punched us. Looking back, there are lots of things I’d tell myself – accept help, take it one day at a time, buy more concealer. But, in honor of World Prematurity Day, I also wish people knew these seven things about the harsh reality of having a baby born before 37 weeks.
1 – The NICU stay? Yeah, that’s the easy part. When our son was first admitted to the neonatal intensive care unit (NICU), we received scores of emails and texts from friends and family offering to help. And, when he was emergency transported for surgery to the nearby children’s hospital, even more people checked in to assist. But after discharge, we were largely on our own. Everyone thought that because we had survived the NICU that we just picked right back up where all the other parents who brought babies home, did. We were normal, whatever the hell that means. Nevermind his additional six surgeries, his 12 specialists, his numerous hospital stays, worries over RSV and the flu, frustrating phone calls (so many I lost count) with billing and insurance offices and the hundreds and hundreds of therapy sessions we endured. For years. It almost broke us. It almost broke me. My spirit. My heart. The NICU stay? Yeah, that’s just the beginning. For most of us, it’s life after that’s the real test.
2 – My kid may not “catch up” as quickly as you think, or ever. At first the well-meaning comments of “Oh, your son will catch up in no time,” didn’t bother me. I just smiled politely and walked away. They didn’t know he threw up at every meal and multiple times in between. They didn’t know how much I cried in the therapists’ parking lot after another failure of a session. They didn’t know how I stayed up late nights wondering how we were going to pay for this “life-saving” therapy. They didn’t know. But their words still stung. You see, nobody knows for certain what my preemie will do. What he will achieve. Maybe he’ll catch up in a year, or five. Or never. All I know is that preemies are on their own schedule for development. I just have to love my son through them. Oftentimes that’s the only thing I do well. Love him.
3 – It’s serious. A cold or quick illness to your kid may be a major setback or even a hospitalization for mine. I stopped calling people back that quipped, “Can I come over? It’s just allergies!” No, no it’s not. Because when you sneeze, all I see are those thousands of germ particles hurtling toward my child’s face. And then I know that surely means a month of recovery. And, if we’re unlucky, a hospital stay. Please don’t judge when I cart around my anti-bacterial gel and douse everything I see with it. I’m just trying to survive and keep my preemie healthy.
4 – It’s expensive. But, just because we have thousands of dollars in medical debt doesn’t mean we can’t live our lives. Please don’t judge the vacation we take. It likely took tons of planning, a delicate balance of maneuvering airports and kids’ medication schedules. It might be the one thing that year that saves my sanity. Or, maybe we sprung for family photos. I know we took them as soon as possible because I had this rational/irrational fear that our son wouldn’t survive his next surgery and that photo would be all I had. Looking back on those newly snapped photos reminds me of just how far we’ve really come. We’re just trying to capture life, in all its beauty and failures.
5 – It’s likely crappy luck. More than likely, nothing I did caused our son’s prematurity. The specialists called it an anomaly. I have a different, non-family friendly name for it. It wasn’t the yoga I tried, the cokes I drank, the sushi I ate or the fitness program I used. It just happened. And, trust me. Shaking that guilt is the single hardest thing I do everyday.
6 – It’s complicated. Please don’t ask if we’re having more children or if it could happen again. Both are intensely personal questions. Maybe we’ll have more, maybe we won’t. But no matter what is decided I’m fairly certain I’ve prayed more about it than you may ever know. My husband and I understand the seriousness of that decision and there are so many factors for us to consider. And, when I opt out of a playdate or an outing, it probably isn’t because I don’t like you. Nope, more likely it’s that the ordeal of getting out is well, an ordeal. Some days I just can’t do it, but please don’t stop the invitations.
7 – There’s no contest to win. In fact, I wouldn’t wish this experience on my worst enemy. Nobody wins the “worst prematurity story” because, quite honestly, it’s the hardest thing for every family it hits. We all cope differently. Me? Mine was a mix of beer, counseling, spiritual direction, great friends and medication. Sometimes heavy on the beer, other times heavy on the spirituality. Every day I look in my son’s sweet blue eyes and thank God he’s mine. However long that may be.
Power to the preemies. And their moms and dads.
Wow, Kathryn. This is so helpful to read, especially as someone who hasn’t been in your shoes. Thank you for writing this. Praying God continues to bless you & your sweet preemie, Luke!
Great article. Thanks for writing it.
AMEN. This can be said for any NICU baby but especially preemies.
Thank you for this honest post. We had friends and a cousin each deliver babies at 27 weeks. I had no idea what to say or do…none. Didn’t know if I should offer to watch their other children or if my family was just a big ‘ol germ factory that could possibly harm their premmie? Or did the momma resent my strapping 10 pounder born around the same time. See, I was literally clueless.
I do not comment much, but I have become a loyal reader of your blog. Four years ago, my little boy was the big, healthy kid in the NICU for a week-long stay (born at 35 weeks due to placenta previa). Even though our little boy was/is healthy and our stay was short, that NICU stay profoundly affected me. Your number 5 & 6 particularly struck me this morning. Oh the mommy guilt…isn’t it just awful! I am currently 20 weeks pregnant with our fourth child. This pregnancy was a surprise, and it has been such an emotional roller coaster after my preemie. I appreciate the things that you have shared in this space. It is nice to know that others have been there!
I am with Kelly S. My 35 weeker was the big kid in the NICU, and he had a short stay. But when he couldn’t figure out how to breathe or how to eat, oh, how guilty I felt. I felt like I had failed him. My boy is 10 now, but when he was younger, I jokingly asked him why he came out so early. He simply told me that he was “ready to come out and meet all the people.” Hugs, Kathryn.
I love that you assembled these tips. I certainly cannot imagine the intensity of a NICU stay. Absolutely POWER to the Preemies and to their parents.
Such a great post! As a premie parent to twins at 28 weeks, I to struggle with the questions of when they will catch up. I find myself “comparing” them to others but realize that they are their own and have their own agenda. It’s hard to have friends/family that don’t fully understand what it’s like to go thru the NICU and multiple surgeries.
I agree it’s hard to have friends who have babies that didn’t have the Nicu experience. It’s so hard to explain to them the reasons why you can’t leave the house or why you can’t always go on playdates.
Thank you for putting this out there for everyone to read, preemie parent or not.
You are one fantastic and strong mama, Kathryn!
Thank you for your article. I have two children a girl and a boy who were born premature. It is very hard and stressful. My daughter was born at almost 30 weeks. I was a single mom. I try to follow the rules to have a healthy pregnancy. I did not take the prenatal pill as often or drink water like I should but when my baby was born early I thought I had did something to make this happen. She stayed in the NICU for a month and 5 days. The last week she was in the hospital she had to have a blood transfusion. She was in God’s hands. I had to go back to work two weeks after having her because I did not have enough time at work. The NICU nurses did not let me spend extra time with my baby when they closed at 5:30pm and I got off work at 5:00pm to drive across time to visit my baby. I was so heartbroken to be away from my baby all that time. I was able to spend 3 weeks with her after she came home from the hospital. I heard the same thing about your baby will catch up and I was wondering if that is true. I just want to say that my daughter is 9 yrs. old and she is doing awesome in 3rd grade this year and she is ahead of her class in some subjects. The doctors stated if I have another baby they will be premature. I got pregnant again with my husband. We took all the precautions to have a full term baby by getting shots. However, it was not in cards because my son decided he wanted to be born at 35 weeks (4/2/14). I was very confused and sad because I did not want to go through like my daughter. My son stayed in the NICU for a week and once he got home he started getting healthier and stronger. Moms and dads of preemies….You rock!!! God will give you everything you need to make it through your journey. Thank you for your blog, Kathryn. You are a breath of fresh air every morning.
This post brought tears to my eyes Kathryn. My entire pregnancy I was so scared that I might harm my baby or cause her to be born premature. I can only begin to imagine what actual prematurity means to a mom, to a family and of course to the preemie. You are so strong! I have a friend who had her daughter a day after mine, but she was only 32 weeks along. Thanks to your post I have a tiny little insight in what she’s going through and maybe I can be a better friend to her that way. Thank you!
I have been reading your blog for a while. My preemie got a helmet like yours and I learned a lot from your posts on that process. Anyhow, each one of these rings true. It is nice to read honest posts from a strong, humble and brave woman. May God continue to bless you and your beautiful family.
What a sweet thing to say, Beth. I’m glad you’re here!
I couldn’t of said it better myself. My daughter is 7 months old and spent 9 weeks in the NICU and every single one of your points made me cry because they are the exact feelings/statements I have. It was nice justification for me to read this and to know that I’m not alone and these are the reasons I feel the way I do and it’s ok and normal that my family is not 100% just because we left the NICU. The battle apparently never ends. Not many people will fully understand this or things us preemie moms go through daily.
I’d like to add that every time I hear a woman say she is ready for her pregnancy to be over or she hope the baby comes soon or before it’s date, it makes my stomach turn. They have no clue! I wish I could have kept my daughter in to her due date or beyond. They come in their own time, in God’s time. And when they are ready! Don’t push it because you really don’t understand the consequences.
That is so incredibly hard to hear, Amanda.
I wish everyone knew just how hard it really is I’ve had 2 premis and 2 miscarriages and not being able to hold and barely touch my babies for 2 months was so horrible all the surgeries, then constantly being sick and hospital stays over and over its a big deal. Now I’m pregnant I’m 22 weeks I’m hoping and praying I can make it past my 25 week mark. These past few weeks have had me completely stressed and worried. Thank u for sharing this post. I’m emotional over here! God bless you!!
It is hard, Roxie. I pray you make it to 25 weeks – and beyond!
I’m on baby number two to be born at 28 weeks. I’m really tempted to share this article. People are being so supportive of us, last time I didn’t know what the future was going to look like but now that I know what the long haul looks like I take all the help I can get!
Keep the faith and know that lots of us know the road you’re walking.
Enjoyed reading your post. I am the mom of a 26 week old baby boy who I still currently in the NICU. Its been 3 months and I am scared of the future. Still we’re trying to take one day at a time not knowing what will happen tomorrow is so scary.I pray that my little one will get to go home soon and healthy.
The one day at a time is a hard thing to do, keep trying. So much of that future is unknown. Rest in what you know today. I promise you, your child is going to surprise you. My preemie does it every day!
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Amen sister. Nicu was the easy part. After we took our preemie home at a whopping 4.12 pounds, the endless feeding cycle began and I became a zombie mom…thanks for your post
Kathryn, I seldom ever comment on others blogs, but your post is so real to me I feel compelled. Thank you for so gracefully explaining so many of the comments from well intended individuals that make me want to smack them in the head! I am the proud mama of 2 preemie boys born in 2 years. My first little superman is a 28 weeker (2013) who I truly believe prepared me for my little iron man who is a 24 weeker (2014). The paths between the two has been so different, and yet the emotions and unhelpful comments have paralleled each other.
The NICU absol
Kathryn, I seldom ever comment on others blogs, but your post is so real to me I feel compelled. Thank you for so gracefully explaining so many of the comments from well intended individuals that make me want to smack them in the head! I have taken a much more terse approach with often negative results.
I am the proud mama of 2 preemie boys born in 2 years. My first little superman is a 28 weeker (2013) who I truly believe prepared me for my little iron man who is a 24 weeker (2014 and greatest unplanned blessing). The paths between the two has been so different, and yet the emotions and unhelpful comments have paralleled each other.
The NICU absolutely is the easy part! Over a year later and I still find myself checking BOTH my boys multiple times throughout the night just to ensure they’re breathing! The NICU nurses and doctors after 2 extended stays at the same hospital have become the extended family we never asked for, and yet would never have survived without and are now on speed dial for when we need an IV in the ER and our guests at birthday celebrations, due date celebrations, and ‘gotcha’ dates (the day each was able to come home from the NOCU
Both my giys receive multiple services and therapies, and we often take 2 steps forward to take 3 steps back. You’re exactly right, my little men have their own schedule and timing for all their accomplishments; my husband and I live in their world not the other way around. Patience is truly something I can say we are experts in and not by choice. We celebrate all the little victories; sitting, standing, talking, eating, surgery, walking; all the things parents of full term babies often overlook. Our family practices lock down during RSV season and still havent been able to avoid hospital stays for infections, dehydration, and breathing difficulties. The immine system of my little fighters just isn’t the same of their peers and the common cold sends them into a whirlwind of other complications and in explainable long term health struggles.
However, I have found that my little guys have taught me the most important and beautiful thing about being their mommy – celebrating life every chance we get as with my 24 weeker he truly beat the 50% odds that were stacked against him. We stop and smell the ALL the flowers in the grocery store even when we don’t have time to allow the highly sensitive sense of smell to engage with their world, we jumo in ALL puddles because we need to practice our gross motor skills, we read yet another bedtime story just because we’re thrilled to have them with us to read to, and we walk slowly through busy stores and malls during the holiday season as others rish around simply so we can see all the lights and decorations that are so ‘cool’. I would never trade the beautiful way my boys have taught me to observe and experience life and our world, no matter how long it takes us to get to the ‘finish line’ or caught up with their peers.
Thank you for your article. I appreciate your view on this. You know what though, as an NICU Mum that was there with a “non” premmie baby but went through all of this and more I get so frustrated that everything is about the premmies. My daughter will pay the price along with our whole family for the rest of our lives. We had to worry about germs because of the damage to her lungs and how long she was on life support. She had two nurses and a doctor watching her non stop for the first two days. I really wish NICU in general forgot about the other babies and families that suffer in there. I wish you the best for the future.
Sorry did NOT forget about the other families
In my experience with preemie/NICU moms, I’ve never seen a distinction in “well mine was a preemie, therefore my experience was harder than yours” to the non-preemie moms. I hope and pray you feel supported. A NICU stay is a NICU stay – they all stink, no matter the circumstances that bring you there. One of my dearest friends is a non-preemie NICU mom and never once have we charted out who had the harder road. We’ve simply supported one another along the journey.
Thank you for that. It is certainly never a completion and I have great friends from NICU. It is just here all fund raising and support services work on babies being premmie. Good luck with your journey.
Thank you so much for posting this! My son was born at 28wks. I had a normal pregnancy…no complications. All of a sudden he wanted to come but 12 wks to soon. He was a healthy 3lb baby! He stayed in the NICU for 53 day…..and everyday of those 53 days I coiulnt help but feel the guilt of what did I d wrong. It took a long time to realize I did nothing wrong. Sometimes it just happens. Now, he is 9yrs old, bright and healthy!
As a NICU nurse, premature babies are the strongest people I know. I love caring for them. Thank you for writing this so I can see what the “after” looks like for parents. Now I can tell them that when they take their baby home, it isn’t all going to be magically fixed. We know it’s difficult, but sometimes we never really see the things preemie parents go through. Lots of love and encouragement!