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My Painful Misunderstanding of the Transition to Life After the NICU

During my baby’s three month NICU stay, I quickly learned the many adages that are passed around the NICU.  Some were aggravating such as “It’s not a sprint, it’s a marathon.” Others, like “Never trust a preemie,” were daunting. In addition to these, there were two unwritten rules engrained on my psyche that I unknowingly did not understand at the time. I would have been spared the sadness that came with losing yet another dream if I did. These rules were “Every baby is different,” and “Don’t compare babies.”

Essentially, they possess the same significance. I suppose the message is important enough to justify the need for two sayings. Nevertheless, the intended meanings were lost on me. This is how:

My baby arrived into the world the day she reached 26 weeks gestation. She weighed 790 grams and was 33 centimeters long. In addition to many other complex emotions, I was terrified.

gauzeI can not count how many times well-meaning people shared narratives of other micropreemies that “caught up” quickly and easily. Doctors often weighed in on the matter with stories of their past successes with similar babies. I had met parents of a 26-weeker from the same hospital that “caught up” in her first year.

Despite a handful of scares and terrifying discussions, my baby had a rather uneventful three month NICU stay. She did not come home on monitors, oxygen, or with a g-tube. I thought she would be another baby to escape prematurity unscathed just like every other 26-weeker I had been told about. I believed the preemie experience would quickly become part of our past once she came home from the NICU. I had no reason not to.

A year later, I feel stupid for thinking that.

My baby’s first year was full of surprises. There were new diagnoses, demoralizing readmissions to the hospital, and countless appointments arb1with specialists. It was far different from what I was led to believe it would be and it caught me by surprise. I went through the grieving process again over the loss of regaining the “normal” baby experience.

However bumpy the ride, it is our story.

I wish I understood “Every baby is different” earlier. To me it means an issue that is devastating for one baby may be minor for another baby and vice versa. Furthermore, countless medical concerns lie on a spectrum. The severity can fluctuate from baby to baby. Every baby, even those with identical diagnoses, has their own unique journey.

As for “Don’t compare babies,” I understand it to reinforce the futility of comparison. Progress is personal. A major accomplishment for my baby may be trivial to another parent. Everyone’s story unfolds differently. Sometimes, I find my own story confusing. Therefore, I can’t pretend to understand someone else’s nor compare ours to it.

Rather than dispense cliches like sanitizer, it would have been more helpful for someone to have a realistic discussion with me in the NICU. I wish I would have been prepared to deal with more than the best case scenario.  I’ve come to realize everyone’s future is somewhat unknown but it is even more so with NICU babies.

Rebecca Wood About Rebecca Wood

Rebecca Wood (VA) is a micro preemie mom. Her daughter, Charlie, was born at 26 weeks, weighing 1 pound 11 ounces due to severe preeclampsia. She has a few long-term issues due to her premature birth including, motor development delays, vision concerns, feeding difficulties, and speech delays. Since Charlie's birth in May 2012, Rebecca has been learning the ropes of the post-NICU world. In addition to embarking on fun adventures with her daughter, she's an animal lover, a reader, a hiker, and an enthusiastic volunteer. You may connect with her on Facebook, Twitter or her personal blog.

Comments

  1. Hugs to you, Rebecca. This is a great post!

    My typical response to a preemie post is to share OUR story, but that seems counterproductive to your whole point. BUT, I do want to say is that my 26 weeker is now 5 (and a half, she’d tell you), and I NEVER would have guessed, based on her issues at age 2 (not walking) and 3 (not potty-trained), that we’d be where we are today.

    I DO wish that people would knock off the whole “preemies are usually released from the NICU around their due date” lie. Addie was born in June, due in September, and released from the NICU in LATE October. Longest six weeks of my life, waiting for her to GROW so they could do the ileostomy takedown.

    • Melissa, thanks for your comment. I am not sure what the correct approach is. Everyone is different. However, I would have been OK with being told that post NICU life is different for everyone and given a range of possible outcomes. That would have been so much easier than being blindsided.

  2. Marie C. Taylor, RN-BSN says:

    Dear Rebecca,
    Thank you for expressing your feelings and thoughts about what would have been more helpful discussions during Charlie’s NICU stay.
    I have a rather direct and honest approach when talking about a premature infant’s long term prognosis. I would rather a parent tell me that their infant is doing better than expected; rather than, the parent’s being upset and frustrated with their child’s set-backs.
    However, many health care professionals are either uncomfortable with these conversations or do not want parent’s to lose hope in their infant.
    You brought up an excellent issue that I will share with my colleagues.
    Best Wishes to you and Charlie!

    • Thank you for commenting. It’s strange, even my husband and I prefer different approaches. It’s easier for me to deal with difficult news when I know that it is a possibility rather than have it come out of no where. The complications of post NICU life came out of nowhere. The worst part was that I noticed the issues first and because I was uninformed, I had no idea what was happening. All I knew is that it wasn’t how I was told it would be. I don’t know what the answer is… I just wish I would have been told more than the ideal.

  3. Very well said, Rebecca, and I can relate from pieces of our own journey.

    Our ST/EI shared a quote with me recently as I sat there in tears of frustration. I’d heard it before but wasn’t something I would have thought of without her saying it in the moment so I’ll leave it here:

    “Comparison is the thief of joy.”
    ― Theodore Roosevelt

  4. Summer Hill-VinsonSummer Hill-Vinson says:

    Hi, Rebecca.
    You are so right! Our 26-weeker has done great, but I was unprepared for how long the journey is. He’s 3.5 and just beginning to catch up to his peers in development (not in size, though!). My daughter, who just turned 1, is catching up faster, but she was a 29-weeker. I think sometimes we underestimate how exponential the difference is for every week of gestation–and how different babies really are in every respect. I struggle when talking to new preemie parents to strike a balance between being encouraging and being realistic. Even best case scenario, it takes years for tiny babies to catch up. By the way, your daughter is lovely. Thanks for the post!

    • Summer, the differences between babies (even of the same gestational age) are astounding. Unlike many micro preemies, my baby hasn’t had problems with her lungs other than an early diagnosis of chronic lung disease. She mostly struggles with motor and sensory issues. I have hope (and a feeling) that she’ll get there. It will just take time and a little TLC. Thank you for the thoughtful comment.

  5. Michelle HenselMichelle Hensel says:

    This is a great post! I think the doctors/nurses have a really hard job of preparing parents of what is to come when they really don’t know. There is a balance between giving realistic expectations, worst-case scenarios, and best-case scenarios. We, as parents, want to know what the future holds so ask questions non-stop. Sometimes we don’t like the answer that they simply don’t know.

    My son was inaccurately (thank goodness) diagnosed as having bi-lateral vocal cord paralysis in the NICU. The ENT was so abrupt when I asked how long he might need a trache if that was required. He told me “for life”. I remember feeling so crushed and devastated. I needed a gentler approach especially since he didn’t know. We saw an ENT out of the NICU and found out it was only unilateral vocal cord paralysis. He had a lot of feeding problems but never required a trache. Again, there is definitely a balance in talking to NICU parents and explaining diagnoses, outcomes, etc.

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