Hand to Hold's Official Blog: Written by Parents for Parents

Five Things I Wish I Would’ve Known About Post-NICU Motherhood

My preemie gives his sibling-to-be a kiss.

My preemie gives his sibling-to-be a kiss.

I’m the mom of six—teenager to newborn. No, I’m not certifiably crazy, but there are days I wonder.

Two of my children were born premature. One skated home two days after delivery with zero problems, the other? Well, a 44-day NICU stay, seven surgeries, countless therapists and specialists and a very scary touch-and-go surgical case of necrotizing enterocolitis later, I’m a different mom.

I often measure my motherhood years as pre-NICU and post-NICU. I’ve finally learned the one universal truth of NICU moms: we’re all just faking it.

Some Facebook statuses should not be read. You know the one where your girlfriend whines because her kid has to get ear tubes or your best friend shows off her fancy labor and delivery gown? Yeah, those sting. I wanted to yell, “try brain surgery” or, “if only my biggest worry was what I was wearing during labor and delivery.” And then I remember the living hell we endured. The monitors, the specialist visits, the late night calls from the NICU, the 4am pumping sessions and the scars on my sweet boy’s hands from all the PICC lines. I don’t wish that on any mom. So, while I yearn for others to have perspective, I recognize that mine was hard fought. In short? We all have a cross to bear. There’s no competition for worst birthing story.

Never pay the first medical bill you receive from a doctor or hospital. After spending a half hour or more on the phone, I shudder to think how many times I’ve heard, “Oh, that was a billing error. Just disregard the bill.” Lessons learned? Let the insurance claims sort themselves out. Don’t be scared when a billing office says they’re sending you to collections if you fail to pay within 30 days (it’s often a scare tactic to get you to fork over money). Never talk to the first billing person that answers the phone, you’ll just end up repeating yourself to the supervisor. And, by all means ask for a discount if you pay in full!

Let other kids be your inspiration, not your comparison. We spend our days trying to get our kids to achieve developmental milestones as quickly as possible. Is this therapist, or that one, better? This toy, this activity, this outing will all make my child “normal.” And, when our kids struggle, we find ourselves in a dark corner with a Kleenex. Never pretty. In the early days, I obsessed over the growth chart, searched Dr. Google for answers, stalked Facebook support groups and found myself in awe of other preemie moms I knew who seemed to have it all together (all while their NICU baby met milestone after milestone). I’ve learned to play up, to surround myself with strong preemie moms who get it. In my darkest days as a mom, the best thing I can do is call a NICU mom and get practical advice, not wallow in self-pity about my failures and my child’s struggles.

You have a life. And it doesn’t always include your kid. Before I entered the NICU, I loved designing, decorating and making things pretty. When our youngest was born premature, it was my God moment. Life was automatically reprioritized and I finally realized I could jump on the train or cry at the station. I chose the adventure. I’m learning to cultivate my own gifts and in doing so, it’s helped me see the beauty of motherhood and weather her challenges. If all you do is live life for your child, you forget about the beauty of your own. Go on that girls’ night out, see a movie with your spouse, go get yourself a pedicure, join that fitness class. Life should be about living, not waiting for the next shoe to drop.

You’re doing enough. As much as I love my son’s specialists—all 12 of them—I sometimes leave their offices feeling dejected. I worry that if we don’t do this therapy, enroll in this outpatient clinic or run this test, I will have failed my child. And you know what? I’ve learned to trust my instinct. To lean on my love. I’ve learned to tune out the extraneous and hone in on the things that matter. My protective momma bear instinct has never failed me. I’ve pushed, asked and questioned when needed and I’ve ignored, nodded and moved on when necessary. In the end, it’s how much we choose to love, despite the odds, that makes all the difference.

Happy Mother’s Day!

Kathryn Whitaker About Kathryn Whitaker

Kathryn Whitaker (TX) is the mother of six (including two 36-week preemies).  Her fifth child was diagnosed with IUGR (intrauterine growth restriction), born at 3lbs. 9oz. and then developed a severe surgical case of necrotizing enterocolitis (NEC).  He has various medical needs as a direct, and indirect, result.  On her personal blog, Team Whitaker, she writes about what she knows: big families, carpool, kids activities, faith, her beloved Aggies, specialist appointments and sanity checks with her husband.  You can follow her on Twitter, Facebook and Pinterest.

Comments

  1. Preach it sista! I so needed to hear this today. Thank you for the reminder that I have a life. Now excuse me while I go schedule myself a massage.

  2. Well said, Kathryn! And congrats on your new baby girl!

  3. Very well said! I just want to add your premie is perfect! My son is almost 3. He’s very little. That’s just how he is. (Most shorts he needs a 9 month) I get so tired if hearing people ask if I ever feed my child. (Of course I feed my child. He is constantly eating) It gets frustrating. I used to constantly think I was doing something wrong, but I’m not. My son is perfect just the way he is!

  4. Thank you so much for sharing your story! My only little one is a 32 weeker and I get so sad and jealous when I see the giant belly pictures or read the complaints about being so big. I want to yell at them to be grateful for all the extra time that their baby has to grow and develop.

    • It’s so hard not to be jealous, Sara. I just try to remind myself that my scars are different than theirs and I wouldn’t wish my difficult journey on anyone else. I hope your 32-weeker is growing and thriving!

  5. Ginnie Briguglio says:

    All 3 of my surviving children came early (26, 34, and 30 weekers) Also have 13 angel babies to miscarriages. My children are adults now, but those feelings never quite go away. Sometimes the memories and fears come flooding back at the strangest times. My oldest just gave birth to a full term and perfectly healthy baby boy a few months ago. I was in the delivery room and was holding one leg, while her husband had the other and I looked down and saw all the scars on her heel/ankle area from ABG draws. I started to cry, as this woman that was giving birth is the same child that my husband and I had been told to institutionalize, as they said she would never be able to walk, talk, or feed herself. What would have happened if we had listened to them? Our daughter graduated High School with honors, attended college worked to support her husband while in medical school and is now a stay at home mother. I learned 33 years ago that doctors do not know everything. In fact I think that they are wrong more than right. To trust my inner voice, and to smile and nod when I hear women complain about the simple things, as they have no idea how complicated it can be…

    • WOW, what a “life comes full circle” moment for you Ginnie. That birth must have been incredibly healing and affirming for you. What a gift!

  6. Thank you so much for this article. I just stumbled upon it, and I really needed to read this. My son was born 5 weeks ago, at 27 weeks and a day. He is my first. I am now starting to understand that it’s okay not to spend every waking minute at the NICU, and that I have a life to live. It was the hardest thing because I felt so guilty. And I love that you mentioned some statuses shouldn’t be read! I had to recently unfollow one of my friends from high school because she’s also pregnant with her first boy and whenever I see a baby bump picture, it devastates me. I’m so happy for her! But, I’m also jealous. I was really looking forward to another 12 weeks with him in my belly! And I miss that more than anything. That’s honestly the only thing I can’t come to grips with. He was with me all the time and I knew he was safe. We had a bond that he only shared with me and I wasn’t ready to share him with everyone else just yet! But thank you again for this! You have made me feel more sane about how I’ve been feeling.

  7. Linda Merritt says:

    Thank you for posting this. I am not only a NICU nurse but a NICU mom. I thought I knew what it was like until I had my son at 32 weeks. I wish I had been told in my training about the struggle we moms face after the baby goes home. My son has had to have food therapy because he is such a picky eater. I have read how other preemies also face this struggle. My question is why are nurses not trained about this to help parents cope after the NICU. My hope is to someday expand the nurses’ knowledge of the struggles parents face during and after the NICU experience to make them even better nurses than the majority of them are

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  1. […] the circumstances as best I could even if I didn’t like them. If it had not been for this article that I read yesterday, I don’t think I would have bounced back. It spoke to me on so many […]

  2. […] any NICU parent and they will tell you that having a baby in the NICU changes you. Some of us measure our lives as “pre-NICU” and “post-NICU.” Others, like myself, started our parenting journey in the NICU, not getting the opportunity to […]

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