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Don’t Mind Me, I’m Having a Prematurity Moment

preemie quote

Four years post-NICU and the triggers for PTSD (post-traumatic stress disorder) are still there.

I’d like to blame it on pregnancy hormones, and perhaps that’s what it is, but the moment when I think I’ve put it all behind me, the reminders rear their ugly heads.

Just last week, a friend posted on Facebook of how her four-year-old finally drew a person, complete with a head, arms and legs. I broke down and started crying. Fine motor skills, while improving, still allude Luke. Will he master them eventually? No doubt. Will he have the best handwriting in the class? Probably not. And I’m okay with that. It was just another reminder of something he has yet to overcome. Another mountain to climb. Another therapist to love (and boy, do we love her). I’m quite positive my friend didn’t sit down at her computer, post the photo and think, “I really hope this makes Kathryn cry.” No, I’m pretty sure she was proud of her child, and rightfully so.

But when the normal for someone else is your child’s nemesis, it’s hard to rein in your emotions. And when you’re pregnant all bets are off.

Then, a few days ago as we were traveling to yet another specialist visit I spotted the emergency transport ambulance. The same one that carried our barely breathing, very sick, we weren’t sure if he’d make it through the night, son to the local children’s hospital. I completely missed the left turn signal and had cars honking at me because I was just frozen. I couldn’t shake the memory of that scary evening. For me, that’s the big trigger. When I see that damn Acadian ambulance I have to take deep breaths and talk myself off the ledge.

I know this is normal. I know that I’m not alone. And, I also know that not everyone understands why it can be so hard to let those things go, to move on.

With every passing month, I remind myself of Luke’s little leaps forward that really are huge steps in his world.

Potty training at 4.

Eating solid foods without throwing up at 3.5.

Talking at 3.

Sleeping through the night (um, yeah, still working on that one).

From the kid who is missing half a colon and a fair amount of small intestine. The one who survived necrotizing enterocolitis not once, but twice. The one who has been in speech therapy for three years and feeding therapy for almost the same. For a kid who spent more time in the hospital than out of it his first six months of life. He has made amazing, and often referred to, astounding, progress.

His mom on the other hand? Some days I’m not so sure. I do know what gets me through the hard days. A phone call with a good friend I met during one of Luke’s hospital stays. A hug from his feeding therapist. A “we’ll figure this out” and other reassuring words from my husband. Time in adoration.

Every day I suppose I make progress, too. The joys outweigh the sadness. The accomplishments outnumber the obstacles. The peace surpasses the fear. Just as our NICU stay was a marathon, not a sprint, so is our recovery as a preemie parent. I won’t ever shake that title. I do, however, embrace the life lessons it’s given us.

20 Comments

  1. Anne on February 25, 2014 at 8:31 am

    Hang in there, Kathryn. My youngest (now 6) has also had issues. None as serious as Luke’s, but very challenging, just the same. Digestion and eating issues from Day 3 (ended up back in the ER on Day 3 — compacted bowels). Failure to thrive. Chronic constipation. Lead poisoning (never found the lead source). Delayed speech. “Recall” issues in his brain — takes him forever to get things into long-term memory. Fine motor skills issues. Gross motor skills issues. Sensory issues. But he is making progress. I just about smacked his preschool teacher when she told me he might not be ready for kindergarten because he “was afraid of the playground equipment.” Seriously? He knew all of his alphabet, he was starting to read, but she thought he should be held back due to movement/height avoidance issues? Hang in there. Now, at six, he is a happy homeschooled kindergartener who can read, eats well, uses a pencil and scissors just fine, and is just a little behind in gross motor skills. Does he still have some issues? Sure. But I firmly believe that God sent me this little one to help this control-hungry mother to just accept people for who they are and love them. You are doing fine. And so is Luke. He will be fine. 🙂

  2. Yvette on February 25, 2014 at 8:38 am

    Kathryn, we will probably never meet, but I am in tears as I read your entry today. Be the strong one of faith that you know you are.
    Luke has achieved more in his young life through courage and via the love of his family than most do in a lifetime.
    I cry whenever I see daffodils flower in March as that is when Daniel’s anniversary is, it is tough to move on, even after 11 years.
    Declan, like Luke has also progressed so much although where the autism will lead us next is an unknown.
    You are not alone, and it is ok to cry.
    God Bless you and the family.

  3. Tabitha Ward on February 25, 2014 at 8:39 am

    As a NICU nurse, your story amazes me! Your little one has accomplished so much in his life already! I just want to say thank you for being a wonderful mommy and doing everything you can to help your little boy! We teach you parents how to do things, and it is so rewarding when you see how well the parents have done with their child(ren). Thank you again for this amazing story! Hang in there Luke will catch up! Sounds like to me he’s doing great!

  4. Laura on February 25, 2014 at 8:58 am

    I could have written this post. Many of PuddinPie’s challenges are the same, although he did not have NEC. I have recently had people tell me to get over the NICU or that I was “too sad” about my niece’s passing because she was a NICU baby too. But… they just don’t know, do they?

    I going out to dinner with some preemie moms in a few days and I am so excited because they will understand my feelings!

    And… you are not alone. Your feelings are normal and valid. I know you know this, but it bears saying. You are normal, your feelings are valid and you have a right to feel however you want. It is not wrong. It just… is.

  5. Kelly Kaczmarczyk on February 25, 2014 at 9:21 am

    You’re a strong woman, and a good mother, and you have a lovely family.

  6. Cindy15905 on February 25, 2014 at 9:21 am

    So ironic to read this today. Our youngest has been in some type of “intervention” since he was 2 – Speech, Early Intervention, OT, etc. He is now 8 and, to the outsider looking in, he seems “normal”. I guess I look normal, too, but I still have that unease in my heart that shows its ugly head from time to time.

    After I put him to bed the other night, I was standing at the kitchen counter going over his IEP for school I had received that day. It had over 25 pages- single spaced- of skill after skill that he was “low average” in. As I flipped pages, my mind raced ahead to questions of what his adult life would look like. About how hard everything seems to be for him. About what appears simple for other kiddos can seem to be out of his reach. It was at that exact moment he shouted down from his room:

    “Mom! Mah- ah-ahm!”
    “Bubba, you are supposed to be asleep. Go to bed, little man.”
    “I know! I just wanted to say- I LOVE THIS FAMILY!!!!”

    Message received, Lord <3

  7. Audrey on February 25, 2014 at 10:10 am

    My 9 year old was not a preemie, but he was diagnosed at 20 weeks gestation with Spina Bifida and Hydrocephalus. The next 18 weeks were full of specialists, ultrasounds, tests, etc. That doesn’t even touch on the mourning that we went through as a couple when you’re told that your child may never walk, talk or attend a traditional school. After his birth and initial repair surgery, he spent 7 days in the NICU. Every time we return for normal check-ups at Children’s Hospital of Philadelphia, the smell of the hand soap takes me right back to that NICU and all the visits that led up to it.

    Ben just turned 9, attends public school with some Learning Support for Reading and Math. He uses a wheelchair, but can walk with braces and a walker. He has had some type of therapy weekly (OT, PT or speech) since he was 6 weeks old, but those therapists have been a lifeline for us, especially in the first 5 years. We went on to have 2 more little boys after Ben. That does help shake some of the ptsd, but it is always subtly under the surface.

    Luke is already on the road to the same great successes- good job Mama! Thank you for sharing your experiences with us!

  8. verdina on February 25, 2014 at 11:10 am

    God bless you, Kathryn! You are an amazing woman… an amazing mother… an amazing wife… It’s ok to have those feelings (you can’t help your feelings, only what you do about them). Your sharing helps so many. I feel so blessed to know you.

    Love you!
    V

  9. Amy on February 25, 2014 at 11:36 am

    Hello,
    We had twin boys who only lived a few days and although 11 years later it still takes my breath away, I know that God sometimes allows us to go through difficult times to grow closer to Him & He will carry us through :). Keep praying & I will add you & your sweet family to my prayers. Hugs!

  10. Bonnie on February 25, 2014 at 6:02 pm

    I wish I could give you a great big hug. It’s all terrifying I know.

    • Kathryn on February 25, 2014 at 9:33 pm

      I’ll take that hug on July 25 🙂

  11. Jill on February 25, 2014 at 9:24 pm

    Dearest Kathryn,
    I must tell you that I relate. Not that I have ever gone through the exact struggles. Not that I spent any time in a NICU unit. Nope. The circumstances are so different, and still I relate. Mine is a 17-yr-old whose struggles are of his own making, and yet I am still a left-turn-signal-missing mom with my baby boy on the brain. Sometimes I can’t let go of the pain, either, and it’s hard. I guess the Lord allows us these things to keep us on our knees. To keep us realizing and knowing where we stand–or fall–without him.
    I prayed for you today.
    Love and miss you,
    Jill

    • Kathryn on February 25, 2014 at 9:35 pm

      I love you, Jill, and I know your cross is heavy too. I’m so thankful you’re in my life even though it has us in different states. You are a gift!

  12. Stacy Duval Woodruff on February 26, 2014 at 9:11 am

    Girl, you know I’m in that boat with you. As both a preemie parent, and an autism parent, I get where you’re at. I can’t even drive in the vicinity of Dell without getting anxious. We’re up to our ears in therapists, and I’m constantly reminded of how far we have to go. But sometimes they give me reminders of just how far we’ve come. From the tiny baby with NEC, who we weren’t sure would live, to a little girl who will try any food you offer her, Alanna has come so very far. My boys have, too. My kids are happy and smart, and while we struggle with fine motor skills, and potty training, and social skills, and communication, there is so much they CAN do. I mean, really, they have all been able to READ since they were 2.5! So what if potty training is taking longer. We will get there eventually. Every kid has strengths and weaknesses, whether they have special needs or are typically developing. It’s sometimes a struggle to remember that, but every now and then they give us reminders.

  13. Deme on February 26, 2014 at 9:34 pm

    Kathryn, I just love and appreciate your beautiful heart. Jack was actually a twin and we lost the other baby early in pregnancy. While we don’t have the daily, long term struggles you bear with your particular cross, I definitely have those “triggers” that immediately reignite that grief…that deep pain of loss. Jack’s birthday is the day after Christmas, which is a really hard time for me. Wondering what she would have been like at that age…how every moment of his would have been a milestone for her too. This year it hit me that it will always be like this. I won’t ever go through a Christmas or a milestone in his life and not think of this. Sometimes I get mad at myself for not being able to put it aside and simply celebrate Jack’s moments. I’m sure the process of grief will change my perspective over the years, but some wounds just won’t be fully made whole on this side of heaven. Yet, I know that God is so close to us in those moments of utter frailty….reminding us that He is with us, sustaining us, and wants to use all of our pain and struggle for something beautiful. Prayers and virtual hugs for you today, Friend.

    • Kathryn on February 27, 2014 at 5:36 pm

      True, true words, Deme.

  14. jen on February 26, 2014 at 11:30 pm

    My 29.5 weeker will be 5 on April 7th and he’s an only child because there is so much fear about what will happen if I have another one as my next pregnancy could theoretically kill me. (Preeclampsia is evil and my risk of developing it is 2-3 times what it is for a normal woman.) He’s got developmental delays, autism, and has almost died from RSV… but none of this fazes him and he is a happy boy who daily gives me reasons to smile. I’m so thankful to be his mom and wouldn’t trade my journey with him for the world.

    Don’t give into the fear. Shiz could happen but your next wee bairn could be just fine.

  15. Katy on February 28, 2014 at 2:01 pm

    I had a somewhat opposite experience to you, though relateable, I think – my 9lb, 14oz daughter (born via planned c-section 5 days early!) was quite healthy! However, a few hours after a seemingly “normal” delivery, things quickly went south with me. I ended up back in surgery for 6 hours, with the docs giving my husband 50-50 odds I’d make it out. Spent the night in the ICU and a full week in the hospital. Needless to say, my new daughter spent more than the average amount of time in the nursery, especially for a perfectly healthy baby!
    Upon leaving, my main nurse made of point of mentioning how in all her years in the maternity ward, whenever she’d had a mom in trouble, the baby was totally healthy and thriving. And for every baby that needed extra care, there was a strong mama there to fight for him/her. She felt it was God’s way of making sure people could get through things! So you must be a very strong mama for all you’ve gone through. And though I have absolutely no lasting physical effects, and my 6-year-old remains very healthy, I still get tears thinking about what might have been, bad flashbacks of alternative endings to the story – so I get you there!

  16. PreemieMomma on May 11, 2017 at 12:22 am

    My little one’s father and i were separated and one different sides of the country when she was born 2 months early. He scoffs at me when I get the emotions talking about my helicopter ride and the 24 days in the NICU with no one. Not even the other half that created her. 4 years later, mwe are together, coparenting, she has… mostly.. “caught up”… but he will never understand… he never watched her stop breathing. He wasn’t rushed out of the room for intubation… the scoffs kinda hurt..

    • Kathryn on May 15, 2017 at 9:59 pm

      I’m so sorry you’re experiencing a disconnect. That must be so hard.

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