Premature Parenthood.

by Alexa on March 10, 2013

Today is Parents of Preemies Day.

Five years ago today, Simone was a little over a month old, and I posted a letter I’d written to her for the occasion, about her first failed extubation.
Hand
In the letter, I wrote:

It seems impossible, but someday your breath will be effortless, unnoticed. Someday we’ll both take it for granted.

It was less a prediction, really, than a plea. It was an excruciating time. I remember secretly wondering whether Simone would ever learn to breathe on her own, secretly worrying that, in fact, she would not. (Spoiler! She did.)

I am extraordinarily grateful to be able to say that most days, now, I DO take Simone’s breath for granted. But even five years later, I still have days where I cannot. In almost all respects, my time in the NICU made me a less anxious parent, but Simone’s respiratory system remains the one exception. I may be sanguine about fever, about injuries and assorted childhood hurdles, but when it comes to breathing, I am incapable of reason. Simone had her adenoidectomy a little over a week ago, and in the days leading up to it, I was jittery and unsettled–not because of the surgery itself, but because she would be intubated again, because I worried about her airway and the anaesthesia and how her lung damage–the price she paid for the ventilator that saved her life–would affect it all. When Simone has a virus and her asthma acts up, I lay awake for hours at night listening to her cough. I wonder whether, when she is grown up and living on her own, the sound of her cough over the phone will have the power to make my heart skitter and my stomach swirl. I suspect it might.

I think a lot about other parents who have children in the NICU right now, who are still far from confident they will bring their babies home at all. It is difficult to communicate just how emotionally taxing it is to love and mother a baby that might die–not in the abstract, in the sense that “nothing is certain,” but rather with sickeningly immediacy, as in “within the next few weeks.” I have always maintained that it is excellent conditioning for acceptance of the more pedestrian contingency, the nothing-is-certain that is present for every parent, but it is a grueling, even cruel, way to arrive at that acceptance.

I’m co-hosting a Twitter chat this afternoon (and THERE is something I never thought I’d type) for Parents of Preemies Day. There are Parents of Preemies events in several cities around the country, but parents of current and ex-preemies who are either not in one of these cities or are, like me, averse to leaving the house, can join me to chat from 2-3pm EST. If you register here, you’ll be entered to win a signed copy of my book, but you certainly do not need to register to join the conversation (hashtag #parentsofpreemiesday).

The Internet is more or less closed on weekends, so I’d imagine there are only a handful of people reading this. But if you are reading this, and you know someone who has or had a preemie, today might be a nice time to bring them a some coffee and a pastry or two.

I’d also like to give away another two signed copies of my book to current NICU parents, so if you know one, or are one yourself, tell me in the comments. We can all take a minute to send encouraging thoughts to those parents and their babies, and I’ll randomly choose two (parents–most babies cannot read) to receive books on, say, Wednesday.

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{ 17 comments… read them below or add one }

Mary March 10, 2013 at 11:33 am

I am a NICU nurse spending today with preemies and parents of preemies at work in our NICU. I have plenty of preemie families that I know, but I also have a library of resources for families that could really benefit from a copy of your book. Could our NICU be entered into your drawing?

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Alexa March 10, 2013 at 11:39 am

Mary, I would love to send a copy to your NICU outside of the drawing. (I wrote it because I couldn’t find anything like it to read when Simone was in the NICU, so I like to get it into as many NICUs/Family Resource Centers as possible, and I have a couple of extra copies…)

If you email me (alexaflotsamATgmail) the name of the NICU and your address, I will personalize and send it off right away!

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Mary March 19, 2013 at 12:05 pm

Just emailed you…thanks so much!

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Shelly March 10, 2013 at 12:51 pm

I am also a NICU nurse, and have been following Simone’s story since her birth. I’d love to have a copy of your book to share with families that are going through a similar experience!

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Melissa H March 10, 2013 at 1:36 pm

We are sitting at our baby’s bedside in the NICU celebrating Parents of Preemies Day and participating in the Twitter chat. We’re thankful for your encouraging words and we’re thankful for our tiny baby!

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Cara March 10, 2013 at 5:15 pm

I haven’t had a preemie, but we’ve had a similar story. My nephew was born full term following a completely normal pregnancy and birth only to spend the next five weeks in the NICU due to HIE. He came off the vent at 9 days, and 3 days later had an MRI that showed such severe brain damage they couldn’t even explain how he was breathing on his own… He’s 5 months today, and I got to spend the day with him. He’s having a really fussy day, but as I watched his strong body twisting with normal muscle tone and coordination, as he looked at me with definite recognition and communicated his needs I kept thinking about that MRI and what a miracle he is. We have so many hurdles still ahead, but oh God the beauty of being able to take for granted that he will not only live but have a life… Anyway. I know it’s sort of off-topic, but you so exactly described those emotions and my nebulous thoughts today. Thank you.

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MJ March 10, 2013 at 6:30 pm

Not a NICU parent – my heart goes out to all who are – but wanted to wish Simone a speedy recovery (maybe she’s already recovered?) from her adenoidectomy. I hope all of you are, so to speak, breathing easily.

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Rachel March 11, 2013 at 12:49 am

A friend and colleague of mine just got to hold her preemie for the first time – 12 days after her birth. So far, all is going well! What’s the best thing to do for a parent who is going through this? I’d like to help, but I don’t want to intrude or be more of a hindrance. My Scandinavian-from-Iowa upbringing says “make a casserole” or “make jello.”

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Alexa March 19, 2013 at 12:00 pm

Rachel,
All of my very best advice for NICU parents and those who are fond of them is here:
http://alphamom.com/your-life/postpartum/the-nicu-you-when-you-go-home-before-your-baby/

I hope that helps…

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Rachel March 19, 2013 at 12:04 pm

Yes, thank you!

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Mert March 11, 2013 at 6:22 am

I am not a NICU parent, but my close friends are about to become a set. They are unable to have children on their own, and have been pursuing Foster to Adopt. However, they very recently got the news that they could adopt a newborn baby girl in 8 weeks. Only, apparantly it won’t be 8 weeks, as the baby appears to be coming early. She was only 3 pounds at last guesstimate. It’s not anything compared to what you have gone through, but my heart still aches for them, and I am wishing so hard for a healthy first (and likely only) child for them. I would love a copy for them. Thank you for bringing awareness.

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Issa March 11, 2013 at 10:25 am

I have an online friend who had a micropreemie a week ago. So far he’s a strong little dude.

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Deborah March 11, 2013 at 10:37 am

I’m glad you told us about this. I’m a parent of a preemie, although not as early as Simone (born at 35w3d, 23 days in the NICU). Sorry I missed the twitter chat.

And Rachel – yes, casseroles, absolutely!! And if they have older children, babysitting! One of my biggest stresses was finding people to watch my son so I could go be with my daughter.

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Joyce March 12, 2013 at 1:25 pm

Or oatmeal lactation cookies! And anything to support the mother’s physical recovery, which sometimes gets ignored. Also, I’m off to order a copy of your book for my daughter’s alma mater NICU.

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Jen C March 14, 2013 at 12:55 am

My adopted son’s birthmother has just had a baby girl. At 22 weeks. She herself is still a teenager. We are very close and I have shared your site with her after being a reader for a few years. I started reading your site when our shared son was in the NICU because he was born with HIE. Thank you for what you offer other moms!

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Taylor H. March 19, 2013 at 5:36 pm

I am a Parent of a Micro Preemie. Jen C, commented about me below, she adopted my son. I had my daughter, Addison on jan 29th 2013 at 23 weeks. She was 1lb and 10in. when she was born. She is now two months old and weighs 2lb 4oz. Shes been off the ventilator for 2 weeks now. She is doing amazing so far. Thank you for sharing your story, it gives parents like me hope.

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Pam March 22, 2013 at 1:01 am

I’m looking at that picture and I just can’t believe it’s been five years. And now you have TWO gorgeous women-in-training! I’m sure that gives a lot of people hope.

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