Nine Years After the NICU

By Rebecca Hughes Parker

NICUI consider my daughters’ birthday to be in January. But I am the only one.

Their birth certificates read November 17, 2004 and that is the day they were hastily scooped out my womb, neonatologists standing by with oxygen. But, in my head, they did not fully join this world until January 2005, when the tubes and leads were removed from their tiny bodies and they were finally declared ready to breathe and digest on their own. The day they came home—a bitter cold day like the ones we have been having this winter—they were five-and-a-half-pound newborns. They looked and acted like two-day olds, but really it had already been two months.

We are lucky, so lucky. I know that. I know they are fine now. Better than fine. But I’m the one who was toting them around, slowly, inside of me at 29 weeks 5 days of pregnancy when my water broke in the middle of the night. And it didn’t feel so lucky then.

It didn’t feel so lucky when they were put in the more “intensive” part of the intensive care unit, with one nurse just for the two of them. I did not get to hold them when they were born. I was wheeled down hours later to their incubators so I could look at them. Look, but not touch.

It didn’t feel so lucky when I was told how much oxygen they were being given. When I was told that they each had a brain bleed. That one had a hole in her heart she would be given drugs to help close. That they needed caffeine-based drugs every day to stimulate them. That though they were relatively big for their gestational age, they were still far from ready to be born. We will “approximate the placenta” as best we can, they said, but the conditions in the NICU are not as good as the ones in the womb.

It didn’t feel so lucky when I peered at them through my tears and the thick plastic of the incubators. Lost in a web of tape, gauze and wires, their faces were hard to see. Their legs were bent in a frog-like position, common with preemies, I was told. What we could see, throbbing through paper-thin sheaths of downy skin, were their tiny, purple and stubbornly beating hearts. The lights overhead were harsh, the sounds loud. This was not the womb.

It didn’t feel so lucky when I had to pump breast milk eight times a day for babies who could not suck and had to be fed through a tube.  Or when one developed an intestinal infection and couldn’t have breast milk at all for weeks. Just “total protein nutrition” and lipids—predigested food through IV lines, IV lines that eventually caused her veins to collapse. They brought in the “IV specialist” nurse. She failed, her attempts punctuated by faint screams from the baby, now at least strong enough for her voice to be heard. The nurse shaved a bit of her hair and put the IV in her head. “It’s a good vein,” the nurse said sadly, “but we know parents don’t like to see an IV in their baby’s head.”

It didn’t feel so lucky when a phone call came late at night, four weeks in. Baby A is on a ventilator, the doctor said. She has two infections at once and her body has shut down. We were at the hospital as early as they would let us come. The head of the infectious diseases department and his interns stood around her incubator, taking notes. The tubes coming out of her nose and mouth were even bigger than they were at the beginning.

The sicker twin recovered slowly the next few weeks, the flood of antibiotics performing its task. The other twin still struggled to breathe on her own. She would go a day or two without an “episode”—when she started to turn blue and needed assistance, the numbers on her vital stats screen would cause the shrill beeping that rang in my head at night. She had to go five days with no episodes before she could be released. Those five days passed breath by breath.

We celebrate their birthday in November, of course. That is the only date that matters to the twins and to our friends and family. It is the date the NYC Department of Education used to determine that they should enter kindergarten at the (unadjusted) tender age of just 4 years 9 months old. The cutoff is December 31. To me, they were not even “here” on December 31. Now, they’re in school with kids who were a year old on that first cold day they left the hospital.

“They are tough,” my husband says whenever I voice concerns. He thinks that the NICU, while an awful experience for us all, had no long-lasting consequences for them. I know I’m being irrational and emotional, given my twins’ perfectly normal development after 18 months old, and the doctors’ shedding of the “adjusted” and “unadjusted” nomenclature at that point, but I’m not sure I’ll ever be fully convinced.

When the twins first came home, they had small dot-like marks all over their heels from the frequent blood tests. Every time I saw those marks I was reminded of the needles that pricked their heels all those days, days they should have been floating serenely in my womb.

As they grew, the marks faded. Recently, one of the twins was reading a book on the couch, her bare feet propped up on the arm. I saw a mark on her foot as I walked by and looked closer. It was a speck of dust. I blew it off. Her nine-year old feet, long and narrow like mine, were flawless once again. It appears that I may be the only one still scarred by the months in the NICU. There are no scars on their feet. Just in my head.

Rebecca Hughes Parker lives in Manhattan with her husband, a stay-at-home dad, and three daughters (including twins).  She is the Editor-in-Chief of an online legal publication about anti-corruption issues.  Previously, she was a litigator at a large law firm and a broadcast journalist.  She writes at rebeccahughesparker.com. Follow her on Twitter or connect with her on Facebook.

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  • http://www.amandaroseadams.com Amanda Rose Adams

    YES YES YES! This is what the NICU life is like and surviving it in real time happens with a nice rush of adrenaline. Surviving it in retrospect provides no such comfort, only the stark reality that it all happened, it wasn’t a dream. When your motherhood begins like this, it is always part of your journey. We’re almost eleven years out from the first of several ICU stays, and even though we’re almost six years out from the last overnight hospital stay, there were so many weeks and months that I mothered at a hospital bed side, that I can never pretend it didn’t happen. Happy both birthdays to your twins!

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      Thanks so much Amanda. It is true, it is always part of the journey…

  • http://www.omnimom.net Lauren Apfel

    Such a poignant reflection on what was no doubt a heart-wrenching two months and it does go to show how perspective is everything. Nine+ years ago you were not lucky, no, you were living day to day, unsure of what the future would hold. Now that you are on the other side of it, with your girls healthy and wonderful, it looks different. But, you are right, that doesn’t erase altogether the trauma of what went before. I think those kind of experiences live on with us in ways we don’t quite understand.

  • Jessica

    I know. 31 1/2 weeks I was when I delivered my b/g twins. My daughter was 3 lb, my son 2 lbs, 13 oz. My son came home after 6 weeks at 4 lb 6 oz. my daughter, after 8 weeks, the day before my due date at 5 lb 8 oz. I was due August 12, I delivered June 12. They’ll be five this June, but like you, June has never felt quite right. Then again, neither does August for them either…so I’ve come to accept it. These are the numbers and stats that have never faded, are still very prevalent for me. Every week someone tells me that they are “just fine” as if I didn’t know. As if I would change who they are in this moment. I wouldn’t. But the NICU changed me. We were very lucky and I do recognize that when I think of the scars. But there are scars nevertheless.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      Jessica – “Just fine” – I too hear that all the time! It is true, and sometimes it is nice to hear it but like you say, still, neither birthday is “just right”.

  • http://www.vaersaagod.com Becky

    Happy birthday to your daughters … and to you! My daughters turn 10 the end of next month. They were born at 29 weeks, too, and spent time in the NICU. I still have been unable to write about that whole experience, so thank you for writing about yours. It was much the same. *hugs*

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      Thank you so much!

  • http://Www.mybetterdoctor.com Denitza Blagev

    Beautiful reflection. We heard and read numerous stories through The San Francisco parents of multiples club of parents of twins in all stages of that journey. I still have PTSD (I think ;-)) from my neonatal twin experience And it didn’t even involve the NICU. healing for parents (and kids) is important and your kids are two among the thousands who have a harrowing beginning and no lasting detriment, which is, as you say, lucky, and so much more.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      Thanks Denitza. Yes, so lucky! And yes to the PTSD for twins even without NICU!

  • tami

    Thank you for sharing your reflection. Beautiful.
    I can so relate to your story. I thought it was
    interesting, my water broke in the middle of the night
    at 29 weeks 5 days. (as moms we know to count
    those days, as each one is precious in the womb :)
    My son is 8 now. And I still see those little scars on his heels.
    You are the first person that has mentioned that. Those little
    scars jolt me and brings back the pang of those 2 months in the NICU.
    But like you, I see those big feet now, a little grown person, happy and
    laughing, and I smile, remembering how I would just want him to grow
    an ounce every day in the NICU.
    Happy Birthday to your miracles. :)
    Tami

  • http://rebeccahughesparker.com Rebecca Hughes Parker

    Thanks so much Tami – yes every ounce in the NICU was important! I also had not heard many people talk about the little foot scars, but like you say, such a poignant reminder (and thankfully not so many others – so glad he is a “little grown person”, love that!)

  • Amanda

    Thank you for your words. It’s about 20months for me and I keep wondering why everything is so fresh still. Maybe I should give my self at least nine years.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      It does stay fresh for a while – I remember two years later going to the same hospital to visit a good friend who had just had a baby and the elevator doors opened on the NICU floor on my way to her room and my stomach just dropped seeing that waiting room…. But it does fade….

  • Lorie

    My guy came home on 11-17-2006. He was born at 28 weeks and we spent 69 days in the NICU. I spent everyday trying to be grateful that he was alive but it was so hard waiting and watching. I am still scarred too in my head and my heart. I thought I could talk about it without losing it but had a gargantuan meltdown over it a couple months back and just didn’t realize how traumatized I was still from the problems with my pregnancy, delivery, and his long stay on the NICU. It was horrible to live through but I do feel grateful everyday now that both of us are here and we survived it and life is just a little bit sweeter for me because I almost didn’t get to be his mom. That horrible experience, in some ways, magnifies the joys of being a mom. I am grateful for that.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      So true about magnifying the joys – the NICU gave me a sense of perspective afterwards. I worked at a law firm and just thought that nothing this partner was going to say to me could matter as much now that I had been through the NICU…

  • Clarissandra

    I gave birth to my b/g twins at 27 weeks. We are still not out of the nicu. It’s good to read encouraging nicu stories thank you for sharing. This was beautiful.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      Thank you – hang in there!

  • Angela M

    Our 4th baby was born at 28 weeks. He spent 14 weeks & 1 day in the NICU. He had a PDA & a brain bleed which required 4 brain surgeries and eventually a permanent shunt. He’s only 7 months/ 4 months adjusted but doing well. We’ve tried to put our NICU stay (& my hospital stay which was 6 weeks prior to delivery) behind us. But at times it all comes screaming back. Everyone says thank goodness he won’t remember any of it, but I always well and those memories have left scars on my heart much deeper than the scars on my body from his delivery. Battle scars. I find that Every time I share our story or read someone else’s I heal a little more. Thank you for your healing words & for sharing your heart. I look forward to the day when I can say it’s been 9 years since the NICU. All my prayers and well wishes to you & your girls.

    • http://rebeccahughesparker.com Rebecca Hughes Parker

      So glad he is doing well, and that I could do a tiny, little part in helping you heal.

  • KellyS

    I don’t usually comment, but I had to this time. My son was born at the end of July and was due on Halloween. I too feel like his birthdays don’t fit. He left the hospital on election day. We’ve reached 5 years, and I’m still stunned.

  • http://writingariver.blogspot.co.uk/ Yvonne

    This brought back memories for me. My daughter is 14 now, and yet, like you, I still think of her age in terms of when she was due rather than when she was born at 26 weeks and 3 days. She didn’t have the brain bleed, but did have 2 life-threatening illnesses so we had those scary phone calls too!

    The scars on her feet and hands were also a source of emotional pain for me for many years. Hers haven’t faded completely, but I actually think mine have. It took a long time, especially the guilt. But she is proud of herself for surviving and told me some time ago that there was no reason for me to feel guilty – she believes her early birth helped her to be emotionally stronger. That helped me a lot, and writing about it has also helped, so I hope that writing this was healing for you.

    I also found what you wrote about your children having to go to school young interesting. In the UK (where I am from) there seems to be more flexibility and some doctors have recently suggested that schools should be made aware of children born premature because of possible learning difficulties, especially with concentration. I worried about this when my daughter was younger, but as she’s grown up she has done better and better at school. I think the scare stories are a bit exaggerated, since if babies do fine they aren’t followed up. Our daughter was discharged from every specialist by 2. And did you know that Einstein was a premature baby?!

  • http://www.peckedtodeathbychickens.com/ Susan Maccarelli

    I was riveted by this! While I didn’t come near to experiencing what you did with your twins, I did have a 5 and a half pound baby — at 38 weeks when they told me they needed to induce early because of my gestational diabetes and her being too big. She was so tiny. The foot marks take me bac to my son having jaundice and being on a billy light at home for several weeks and those daily trips to outpatient to stick his tiny foot and check his numbers. If I magnify these tiny issues times 1,000 I think I can relate to what you went through. Even though they got better, I’m sure the traumatic memory of it will always be fresh for you. Thank you for sharing.

  • Courtney

    Thank you for writing about your experience, it helped me.