But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

19 responses to “But She’s Healthy Now, Right?

  • Heather L

    This is a tough one! So many outside of our experience look at our children and assume health. In our situation, Jack appears healthy. Guess it depends on one’s definition. I don’t necessarily consider needing three therapies (OT, SpT, PT) and multiple specialists and a chronic illness (CLD) healthy…but to others, because he doesn’t have an active illness (cold, pneumonia, etc) they seem to consider him healthy despite all that. It’s hard for others to understand that prematurity in itself is a chronic condition.

    Liked by 1 person

    • Rebecca Wood

      Precisely. She isn’t on oxygen or in a wheel chair. So she appears healthy. However, she doesn’t talk, eat, and struggles with motor skills. Like Jack she’s in OT, Speech, and PT.

      She looks healthy and because she’s a flirt… strangers assume she’s healthy. I haven’t figured out what to say. But what you wrote “Prematurity in itself is a chronic condition” has given me something to think about in terms of a better response.

      Thanks! 🙂

      Like

  • steevbeed

    I always feel a bit guilty tagging onto your posts as my son isn’t preemie, but – when people ask me about him (“poor thing” “Bless him” “It’s a shame”) I usually say he is ‘robust’ – I find this is usually vague enough to end the conversation without having to go into ins and outs of his condition.

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    • Rebecca Wood

      I really appreciate your comments. I wonder now that she has passed her second birthday… if we relate better to the special needs parenting community than we do the preemie. Especially since she doesn’t have many of the usual former preemie concerns such as respiratory troubles.

      I like the “robust” comment. 🙂 I may have to borrow the tactic in the future.

      Like

  • Little Miss Moneybags

    I was just wondering about this in a different context – the recent Time magazine article about preemies. Their chart shows rates of death, survival, and “survival with complications” for preemies at various gestational ages. But it doesn’t define “survival with complications” and I wondered where do we fit in on the chart. Clearly, my 25-weeker survived, and I would initially say that she doesn’t have complications – because I know of 25-weekers who are still on oxygen, or who are blind, or who have cerebral palsy. We don’t have those issues. But my daughter requires a feeding tube and can’t walk or talk at nearly two, and I know parents of typical children would certainly consider those things to be complications. What’s even more confusing is that I know our situation is temporary – my daughter will eventually catch up, even if it takes a decade, and she won’t need a feeding tube forever. So do I count us as in one category now, and another later? Or just consider us free from complications since that’s where we’re heading?

    My daughter is healthy in terms of illness vs a condition, and I’m proud of the fact that we have kept her *healthy* – no respiratory illnesses to date. But I don’t want to overlook the trials she’s been through and what she still has to face, even if it’s to someone as nameless as a cashier. I really like Heather’s comment that “prematurity is a chronic condition” and may start using that to let people know that we’re doing well but the differences didn’t end at discharge.

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    • Rebecca Wood

      You raise a good point… where do we fit? Charlie has been diagnosed with CP. However, I don’t think that it automatically makes her not healthy. In fact, in the micro preemie realm… she’s doing well. If she does eventually catch up, is she still a preemie with complications? Very good question.

      Like

  • Theresa

    That sounds like a fantastic answer.

    Like

  • A Miracle In the Works

    Being in a similar boat as you – she looks totally fine – I generally say she’s doing well but still needs to catch up as she has some developmental delays. If people press for more, I give up more but generally I leave it at that…We are still trying to figure out what her “diagnosis” is…

    Like

  • Laura Maikata

    Ugh! I hate this question almost as much as “How old is he?” I’m totally following this for the various answers! My son’s disabilities are hidden, but his size is so small. In a news feature designed to encourage giving blood, one of the first questions from the reporter was “what are his long-term prospects? Will he be healthy and normal?” I gave a vague-ish answer about how by the time he was in kindergarten, people probably wouldn’t be able to tell that he was a preemie when they see him. She rephrased it in the news piece to say that “according to medical doctors there will be absolutely no way to tell he was a preemie by the time he’s five.” and I had to cringe. It’s what people want to hear, but it’s not true. Medical doctors ESPECIALLY will know how different his life is because of his preemie issues. He’ll always struggle with learning new things because of loss of white brain matter (PVL). But that’s not the “miracle” story people want to hear. To me it’s a miracle, but a complicated miracle. Where’s the room for complicated miracles in today’s world?

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    • Rebecca Wood

      Love, love, love the “complicated miracle”. That is precisely how I feel. It’s complicated. It bothers me that people only want to hear the good news and don’t know how to respond to anything but good news. Thank you so much for your thoughtful comment!

      Like

  • Janet

    Project Sweet Peas posted your post, and I had to come read – we have a former 27 weeker (now 6) and a former 28 weeker (now 3). Health is such a funny word, don’t you think? Neither of my kiddos talk, though my older one is making progress. My younger is hopefully getting her tracheostomy out this summer, and yet she’s mostly “healthy” in the grand scheme of things – but she mostly eats baby food. Both have mild CP. Both have heart defects. Both came home with trachs and ventilators (and my older got his trach out at 3). Caught up by 2? hahahahahahaha….

    My answer these days is that they’re complicated, but doing far better than they would have without intense therapy and medical help. Their photos show happy, smiling kids who are in love with life and who make the room light up, and showing those photos is usually enough to stop the really awkward questions.

    Like

  • Kathleen

    I get this question all the time. I never know how to answer it. My son is about to be five. He just got off TPN last month and is still tube feeding. He will have lifelong nutrition problems. But, he has come so far and yes, I consider him to be healthy. People don’t understand. They never will. Not even my family understands. When he got his broviac out we showed a family member the scar. The family member said, oh there was a tube there? No matter how many times I try to explain all his health conditions, not even family understand. So, when people ask how he is doing, I say good. I have a son a year younger than him and when strangers ask if they are twins, I smile and nod. It gets tiring to explain it all the time

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  • Melanie

    My daughter was born at 26 weeks too. She will be two in July, and I get the same question/assumption. She is doing very well for being born so early but she has a lot of unresolved GI issues and feeding difficulties. She appears tiny but very healthy so it’s hard for others to understand including extended family. I just tried to explain some get some don’t I have mostly just gave up. I don’t post anything on Facebook I just fill in family and close friends on her progress. It is frustrating that people don’t understand how fragile she used to be I think it’s just hard to understand unless you experience it.

    Like

  • Sarah Macey Kubus

    My son is almost 2 1/2 now, born at 25 weeks. He spent almost 4 months in the NICU and came home with a feeding tube and a heart monitor. He’s made amazing progress, but still has difficulty drinking thin liquids without aspirating. People will then ask if he will grow out of it. I say that he is making progress, but that no one can tell the future.

    Like

  • Rachel Bartos

    It indeed is a very hard response. I struggle sometimes as the mother of two preemie daughters born 17 months apart, my oldest daughter was born at 27 weeks now at 3 has been diagnosed with PVL, mild CP, Sensory Processing Disorder and has a seizure disorder. My other daughter just turned 2 on the 19th, is now having to be followed by a GI because she’s so tiny- they don’t understand why she can’t gain weight, also been diagnosed with mild CP and also has vision problems that we believe are from when she somehow contacted Meningitis in the NICU at 3 weeks old. My youngest was born at 31 weeks. Its very hard, to answer this, I find myself often hesitating to give an answer. They aren’t always sick, but I don’t know if you could classify that as particularly healthy either.

    Like

  • He is as ok as he can be. | Mommy Meets World

    […] I came across a blog that really hit home. A fellow mama posted a link to it. This mama and I live states away but […]

    Like

  • lovelifeandpugs

    I came across your blog from another NICU mama. It really struck a chord with me. I know this all too well. I wrote a post and hope you don’t mind!
    http://lovelifeandpugs.wordpress.com/2014/06/28/he-is-as-ok-as-he-can-be/

    Like

  • Kristi Campbell - findingninee

    In response to my son’s developmental delays, I had somebody at work ask me a similar question – making it seem as if, because he’s healthy, that the other issues are not issues if that makes sense. He’s not a preemie, but I relate to this and think your answer was perfect.

    Like

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