For Preemies.
This is my daughter, about two days old.
I don’t have many pictures from the early days, and those I do have little in them for scale, unless you are intimately acquainted with Neobars and nasogastric tubes.
So here is a link to a larger version of that photo, too big to fit here, but almost exactly life-sized.
Yes. Almost exactly life-sized. It doesn’t seem possible to me, either.
Because my book is about the NICU, I’ve been spending a lot of time remembering the baby in that picture above. I stumble out of my room at the end of the day, and it is so strange to see this instead:
To be quite honest, I have trouble believing that the baby I sat by in the NICU is the same baby I curl up next to at night. Sometimes it seems like it must have been some other baby, then, some sick and tiny baby who could not possibly bear any relation to Simone, Screamer of Screams, Hugger of Elephants, Stealer of Pens.
But of course it wasn’t, and in the late afternoon when I finish work and Simone bolts toward me, I swoop her up and shove my nose into her neck, so thankful that the baby I remember turned into this one.
You’ve probably seen other entries today about prematurity, more eloquent than I can muster after a day of reliving it on the page. This one, for instance, tempted me to simply post a link with the title “What SHE Said,” because she’s said it so well.
It exhausts me to know that just down the hill from my apartment, someone’s baby is in the NICU. Many someones’ babies. I’ve spoken before about the March of Dimes, and their tireless work on behalf of premature babies, work that is partially responsible for the transformation between that first picture and the second. We’ve been boundlessly lucky. If you can help increase the odds of others being so lucky, please do.
21 Comments
Wow, this virtual ink must still be wet if I am the first to comment.
It took my breath away to see that version of Simone when I absentmindedly clicked over to see how you all are doing.
I don’t know why, exactly, but I’ve been suddenly (as of Sunday night, 12:01am) able to “process” the events of the past two years in a COMPLETELY new way. There’s something about our pregnancy/birth/NICU/post-trauma experience that suddenly became available to me; yet without me re-living it, or merely remembering it. So, something clicked when I saw Simone’s picture. NOW look at her! I love her little bundled up toddler self!
(I suppose I should be writing this on my own bliggity blog.)
I’ve only been able to process the magnitude of what’s happened to my daughter and what, well, DIDN’T happen to her in bits and bites and blurbs here and there and when I stop and think about it all, I simply cannot absorb the magnitude of it all.
I think I’ll always feel that way. Mine wasn’t a preemie, but her odds were stacked way against her. And somehow…
I have not heard anything about the March of Dimes here for years – I know they are around (in Canada)but not well-publicized, perhaps it is time for them to change their name or freshen up the image, I would be happy to contribute to them I just find their image to be from the forties nowhere near current, and with so much donor fatigue in my area anyway, non-profits are competing for that donated dollar and they need a fresher message IMHO. I don’t think what they accomplish is well publicized either. Just a simple observation…..thanks!
It’s incredible how far Simone has come, well done little girl! My daughter was twice her size when she was born at 32 weeks, but it still amazes me that she’s taken such big strides in just over a year.
To Martha: I’m in Canada too, and contacted the MoD about volunteering etc. The Canadian branch doesn’t have a program for preemies (no awareness month or marches), their program here focuses on assisting children and adults with disabilities (many Cerebral Palsy-related) function in Canadian communities. They do things like provide mobility equipment, etc. The people I spoke to were lovely, but they made it clear that preemie-related issues were outside of ther purview. There doesn’t really seem to be a premature/low birthweight/healthy pregnancy charitable org in Canada (or Ontario, where I am), which is kind of a shame, but government and hospital-run programs are superb here, and many hospitals have their own support programs.
But it does makes it hard to volunteer/contribute, and we had to come up with our own ways – donating our daughter’s preemie clothes to the NICU, then making up “parent care kits” to donate on her first birthday, which we intend to do every year now.
Amendment to my comment: I’m pretty sure Abigail was much more than twice Simone’s size, now that I think about it…
She is so beautiful, in both photos. I don’t know why I love to read updates on how Simone’s growth, but it makes me elated to see her thriving. Thank you for sharing her with us!
amazing. i understand why it takes your breath away when you see simone now and you think back to the NICU.
Last night, my daughter’s boyfriend’s nephew was born, at 25 weeks gestation, weighing 1 pound, 4 ounces. It’s because of your story that I am able to offer the family some actually useful support. Thank you, again, for so freely sharing such an amazingly personal and traumatic experience.
I think of Simone and of Ames today. How amazing that the MoD and the NICU was able to save Simone, and wishing we could do even more, so that no mother ever loses another Ames.
It IS hard to believe that little booger is so big and strong! Thank the Heavens above eh? You sit back and wonder…How did I ever make it through that first year? I commend ALL you NICU Moms for all of Your strength and courage. I really DON’T know how you did it. I would have probably lost my mind. Hell, my kids gets the sniffles and I am losing it. You are the the shit people, let me tell you…and so you baby girl!
Alexa,
Thank you for sharing your story and garnering our support. You are an amazing and inspiring women, writer, and mother.
And if I may be impertinent, after thinking all of that, my brain could say no more than “That hat! That HAAAAAT!” when greeted with Simone’s adorable toddler visage. :)
…woman. You are an amazing woman. In all fairness, I have not yet started my job as a line editor this morning. :slinks away quietly:
Dear Alexa: On behalf of the March of Dimes (United States), thanks so much for sharing Simone’s story. And of course, it’s your story, too!
We appreciate your helping us spread the word about the problem of premature birth. With help from you and others, we are working toward the day when all babies in all countries will be born healthy.
With best wishes,
Pam
March of Dimes
Every time I look at my son and my (full term!) daughter I’m reminded that neither would be here with out the research the MoD promotes.
It’s one organization that I’ll be supporting for the the rest of my life.
Long time lurker here.
I come from the other side of this issue – I work in medicine and take care of a lot of pregnancies that are complicated in one way or another. So I love hearing about you and Simone – it gives me a lot of hope for some of the women I take care of who are going through the scariest times of their lives. And March of Dimes helps support a lot of the work I do. So glad they’re getting a little love back; between you and Julie, I have a feeling things will never be the same for their fundraisers again :)
gravitycircus.blogspot.com
That first photo of Simone takes my breath away. What a juxtaposition with the second! I am still so happy when I come here and I see Simone here, in your arms, so alive and happy. Love you both…and heading over to MoD right now.
I wanted to say thank you for this. Unlike many of your readers, I’m not a mother. But I was a preemie, and while I as far, far luckier than many and had few problems, your blog has really made me think about what my parents must have felt when I was born. They’re overprotective, and as annoying as it can be, I look at pictures like that and begin to realize why. So, thank you, from a different perspective.
I can’t even imagine….I am so lucky to have had a daughter avoid the NICU and hopefully will again. I don’t doubt that NICU parents have PTSD after an ordeal like that -as written about in NY TIMES. Glad you all are thriving, girlie.
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On a lighter note-my big-headed baby (90%), Cate, has that hat too. I love it. When she wears it-her little friend calls her Catie Dog.
Just a update – my daughter’s boyfriend’s nephew did not make it. He died this morning.
Jason here from BloggersUnite. Thanks for being part of the BloggersUnite event, sharing your story and helping to raise awareness for the March of Dimes and all they do.
I just wanted to comment on this entry, as I usually just lurk. I read this the day you posted it, and then at 7:30am on Saturday, November 21st, my water broke. I delivered my twin boys (Hunter and Parker) at 26 weeks gestation less than two hours later, and they were 1 pound 12 oz and 1 pound 15 oz.
Last night we lost Parker. Hunter is still fighting, and our hope for him is what makes our loss of Parker a little easier to bear.
I had no idea when I read this entry that I would soon be so thankful for the staff of a NICU, so grateful that there are such caring and compassionate people to save my babies lives.