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You’ve come a long way baby

November 17, 2009

Today is Prematurity Awareness Day. Hundreds of bloggers have dedicated their cyber-platforms to the topic of prematurity today. This is our story:

I used to be scared of flying. The mysterious creaks and clatters of take-off unleashed a surge of adrenaline and the thought “that’s the airplane wing, detaching.” I learned to watch the flight attendants; surely if something was amiss, their faces would reveal it.

It was like this too in the NICU (Neonatal Intensive Care Unit), where my son Col (rhymes with soul) spent his first 101 days. The nurses were my barometer of safety. They knew Col better than I, and for much of Col’s time incarcerated in an incubator, it seemed he belonged partially to them and partially to some otherworldly force, like he was still tethered to the invisible weave of the entire universe. (My mom used to say to Col when he was a just a wide-eyed crumb of a human, “You’re so wise now. Soon you’ll be forget everything and become very silly”).

Col was born in the dark night of a new moon under florescent lights in a room containing no less than 14 people. Dan snipped his umbilical cord in a brief moment of normalcy before Col was whisked to the neonatologists table, where 6 angels in green scrubs performed modern magic on Col’s tiny body. After my clinging placenta was torn from my uterus by a resident who looked like she’d just graduated high school, I fell into a quick, dreamless sleep. It wasn’t until the next morning that I saw my firstborn; the child who—born at 25 weeks gestation—should still have been back-flipping through the salty water of my womb. This doll-sized baby, my son, had a ventilator plunged down his impossibly narrow trachea and an IV threaded into his bead of a bellybutton. Another IV was sunk into his arm, which was barely 5 inches long and the width of my pinky finger. His head was covered in slick hair of indeterminate color, and his eyes were not yet opened. Lanugo—that embryonic fur of the womb—covered his body. He was 13 inches long and 1 pound, 12 ounces.

I’m not sure how long I stood there, at his incubator, his body bathed in a perfect Hawaiian simulation of artificial heat, light and humidity. His nurse Allison urged me to “talk to him, he wants to hear your voice.” She opened the portholes of his plastic house, just wide enough to stick hands through without losing much heat, and I lay my palm like a blanket across his swaddled body. “Hi my son” I whispered. Col didn’t have a name yet, though a cheery, colorful sign was taped to his incubator, announcing: “Baby Boy Turiel; 800 grams.” “Hi, my beautiful boy. I love you, I love you so much” I managed through tears. Allison handed me tissues and pointed out how Col’s galloping heartrate slowed, hearing my voice.

That same day I found a journal left at Col’s bedside by Kami, the nurse on duty when Col was exhaled from my faulty womb. Kami wrote: “Hi Mom and Dad, I decided I couldn’t wait any longer to meet you, so I came early. I was just too impatient.” A long paragraph of medical details follows, then this, “I am a very feisty boy. I even tried to pee on my nurse in the delivery room! I had a pretty eventful night but have been such a good boy, they may try to take my breathing tube out in 5 days! I’m a tired boy, so that is all for now. Love, your baby boy.”

On Col’s third day alive he opened his left eye and peered up at his Daddy. That same day his brain scan came back normal, which came to be the loveliest and most reassuring word. And Dan and I moved into the Ronald McDonald House, where 30 other parents (is that what we were, parents?) with hospitalized children lived. On his fourth day, the nurses lifted the cover off Col’s incubator like it was some jazzy convertible and Dan and I kissed his downy head. On his fifth day, he had a serious of apneas (forgetting to breathe) and bradycardias (subsequent plunge of heart rate), which sent the nurses scurrying to his bedside to rub his back—big as a deck of cards—vigorously, literally reminding him to return to his body and breathe. (This was an utterly common occurrence, though scary enough to take my breath away). On his sixth day, his bellybutton IV was removed and I got to hold him for the first time. Extracting him from his incubator was a delicate and tricky procedure. I cupped his floppy body in both hands while a nurse lifted his sprawl of tubes and wires. This kangaroo care became my most potent medicine. On his seventh day Col started receiving my pumped breast milk through a feeding tube in his nose (his mouth already occupied by oxygen-delivering equipment). He got 2cc’s every 4 hours, slightly less than one tablespoon each day. Kami wrote in his journal “thanks so much Mom for your hard work on getting me my breast milk. I got some tonight and loved it.”

When Col was two weeks and had dropped to 1 pound, 8 ounces, we met with a social worker who asked what our desires were for Col’s future. Dan, my husband, said “to start to feel the blessings of the Earth and the smells of our home.”

Col was feisty. At 1 ½ months—and almost 3 pounds—he’d tear off his C-PAP (device which delivers oxygen while keeping the lungs inflated) and hold it up in his tiny hands like a hunter displaying his kill. And yet, he still slept about 23 hours each day—alone in his incubator with a ragtag zoo of stuffed animals—except those 2 one-hour periods we were permitted to hold him. At 3 pounds, he looked positively chubby to us, and indeed, he was finally sturdy and fat enough to take his first bath, another delicate and tricky procedure, requiring the quick shuttling of his wet, toweled body to a warming table as if he were a lump of rising dough. After weeks of painfully slow growth and breathing setbacks, Col was hitting his stride. His physical therapist, Frieda—whose work mostly centered on recreating the womb-pressure preemies miss out on, causing floppy, hyper-extended muscles—increased his reps from 3 to 6. A veritable workout! Though if Col so much as yawned, grimaced or had an apnea, Frieda cut the session short, declaring Col too tired or stressed to continue.

And then like the high-stakes board game that is preemie life (Col grows two ounces overnight, jump forward three squares! Col needs a blood transfusion, return to start), Col developed an infection at 2 months and went back on the ventilator, back into the high-care room with the just-born preemies, these impossibly tiny humans and their bewildered parents, struggling to fasten the tiniest diapers on their children’s sad, limp bodies. For more than a week we couldn’t hold our son; he was taken off my breast milk and put on a synthesized cocktail of “nutrition” via IV. He received blood draws, x-rays, blood transfusions, antibiotics, steroids, diuretics and he lost precious, hard-earned ounces. After five days the nurses agreed to let me hold him but minutes later they rescinded: his apneas and bradycardias were firing like a fireworks finale.

It has been almost five years since that January new moon; those days are written in my heart and mind like a collection of oversized books stacked on a shelf. If you opened Volume two you’d see that at 17 months, Col ran and jumped and swooshed down slides with an oxygen cord parroting his every move. He also breastfed and grew as slow as an alpine daisy battered about by mountain winds. Flip through a little further and we’ve left our beloved Colorado home for the oxygen-rich seaside in Humboldt County, CA. And there’s that McKinleyville doctor barking at us “do you know the signs of respiratory distress?” while a feverish Col gulps oxygen at warp-speed while lying motionless in my arms.

And then check this out, Volume 4: Col is riding a bike and working 64-piece puzzles. He’s an uncannily cheery and resilient boy who says, when his sister pulls apart his lego ocean liner, “that’s okay, I can build another one.” And then slam, ER visits twice last winter, his tender lungs soothed by a stream of oxygen piped into his nose, the way I’d be revived by ice water on a scorching day. But look! There’s that camping trip at 9,500 feet last summer where Col scurried around for three days like a small animal who had finally found his home, who truly knows the blessings of the Earth, as his father wished for him so long ago.

I think of Col’s first night in the world, after those six neonatologists huddled over his brand new body, each of them playing a crucial role in making Col’s body compatible with life. And Kami, his night nurse settling in to pen these words “…it’s been an eventful night…” I bet if I could have seen her face, I would have known that despite the rattling clanks and creaks of Col’s take off into this world, there was no reason to be alarmed.

Col and his adoring father

Three pounds and positively chubby. Right?positively chubby at three pounds. Right?

The low tech medicine of kangaroo careMy favorite low-tech medicine

Col's first diaper

And now...

** Infinite gratitude to Col’s compassionate, wizardly nurses Allison Phardel, Stacy Gieg, Kami Hanchett and Julie Query.


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35 Comments leave one →
  1. November 17, 2009 4:08 pm

    *sniff* *wipes a tear* This is not the first post that I have wept over today nor I image will it be the last. Thank you so much for joining our Fight for Preemies event and sharing your story. It is beautifully written.

  2. Tiffany permalink
    November 17, 2009 4:33 pm

    Love it love it

  3. November 17, 2009 5:06 pm

    Very touching! Yes I teared up. Blessings to you all~

  4. ghrelin permalink
    November 17, 2009 5:55 pm

    Thank you for sharing this. I’m so glad for your wonderful outcome.

  5. Johnette permalink
    November 17, 2009 6:19 pm

    Love hearing how our miracles started!! His is such an amazing boy!!

  6. Caraway permalink
    November 17, 2009 9:48 pm

    Rachel, Col is the best. He’s such a bright, radiant star. Thank you so much for sharing this– your writing, as always, is brilliant and moving. Happy National Prematurity Day, to all of you!

  7. Diane Howe permalink
    November 17, 2009 10:06 pm

    Rachel- I’m present to the miraculous. Thanks for sharing this story about Col, the boy I know as a feisty child!

  8. Steph permalink
    November 17, 2009 10:54 pm

    Wow, thanks for sharing Rach! I learned some very touching details of Col’s birth and first few months that I had not previously heard about! I still can’t believe what you guys went through- you are amazing, all of you!!! xoxo

  9. Julie permalink
    November 18, 2009 12:06 am

    Thanks for reminding us all how precious and dear our little ones are to us. We all benefit from seeing the strength and happiness in Col. XXOO

  10. November 18, 2009 11:24 am

    Beautiful story. Thank you for sharing.

  11. Tanya permalink
    November 18, 2009 12:18 pm

    WoW! That was a beautifully written story about quite a life changing experience. Does make you tear up and realize how precious they are. Thanks for sharing!

  12. KathySmith permalink
    November 18, 2009 12:18 pm

    A beautiful story,beautifully written. Thanks for sharing, may we always be grateful for life, love, family and friends.

  13. Blake Crouch permalink
    November 18, 2009 12:42 pm

    Thank you for writing this…such a lovely testament to yours and Dan’s fierce love for your son, and Col’s tenacity. He’s gonna do great things.

  14. sweetmumma permalink
    November 18, 2009 2:08 pm

    What a fabulous little boy! Thank you for sharing. It has brought back so many memories of my own little one’s arrival (12 weeks early – what a pickle!) almost exactly a year ago. It is truly amazing how tough these teeny babies are. And also amazing are the dedicated staff of NICUs and SCBUs – angels! x

  15. Michelle Bonanno permalink
    November 18, 2009 2:11 pm

    Now at 21 weeks pregnant, I simply cannot imagine my baby leaving the safety of my womb in only 4 more weeks. This story is filled with so much bravery… from all three of you.

  16. Ellen permalink
    November 18, 2009 3:49 pm

    We made the mistake of reading this in a restaurant ( on a blackberry) and so had tears running down our eyes as the waiter was bringing us the Thai tofu curry.

    I hope this gives hope to other premie parents that their sick little patient will one day be sitting in a class with 10 other preschoolers, eagerly discussing moonrocks, lunar volcanoes, and the stardust from which we all come (as Col did today during an astronomy lesson).

  17. November 18, 2009 4:29 pm

    Your writing is divine.

    I’m a first time visitor to your blog (saw your link in Jane Roper’s comment section) and am officially in awe. My twin girls spent a fraction of time in the NICU (21 days) compared to Col, but the experience changed me. In fact, it was one of the factors that propelled me to start writing again, after a very long hiatus. I’m ashamed to admit that I didn’t realize yesterday was Prematurity Awareness Day,
    but here’s my recent post about my NICU experience: http://taooftwo.blogspot.com/2009/09/isolets-and-isolation.html

    You might also get a kick out of this one about preemies: http://taooftwo.blogspot.com/2009/10/cabbage-patch-preemies.html

    Your son is absolutely beautiful, not to mention a miracle.

  18. November 19, 2009 3:53 am

    good article as usual!

  19. November 19, 2009 11:34 am

    I admit I can be resentful sometimes of the medical establishment and its tendency toward heavy-handed interventions with women, especially related to birth. But your family’s inspirational story is a reminder that medical professionals at their best can be selfless guardians of the gift of life. Thank you so much for sharing.

  20. Chris permalink
    November 21, 2009 9:26 pm

    Oh Rachel! Your words bring back all the NICU memories. Sniff! I love hearing about all of our miracles’ early starts and to see how far they have come. Kangaroo care IS indeed the best low-tech medicine. That and Mama’s love. I hope to one day meet this tenacious boy of yours!

  21. November 22, 2009 9:43 am

    Rachel, this is so lovely! Thank you so much for sharing Col’s incredible story here. I look forward to reading more of your wonderful writing!

    All best,
    Kate
    Mother Words

  22. brigid permalink
    November 22, 2009 11:18 pm

    So wonderful! Your writing is moving and inspirational. thank you.

  23. Sage permalink
    November 23, 2009 12:18 pm

    Rachel,

    I think I came on the scene around volume 3 or 4. With nobody to fill me in on the past of the definition of “premature”, I believe I saw the truth. I looked at Col and was in awe about his intelligence and curiousity. Part of me simply wanted to be like him, a warrior for sure, perhaps a poet, and with the struggles he’s been given-a man of knowledge. Bless you and Dan for your integrity and perseverance.

  24. Ashley permalink
    October 4, 2010 9:50 am

    I sit here at my desk at work during a slow day and I read threw this beautiful yet heartbreaking blog post, I don’t know how you and Dan got threw this. You guys must be some of the strongest people on earth.

  25. Shannon R permalink
    October 29, 2010 11:44 am

    I loved Col’s story. I too had a very early 1st child. Jack was born at 26 weeks. Tiny little bird that fell out of its nest….
    He was 2.5 pounds… He is now 4 years old doing wonderful!
    I can’t express how much I love this child, he is my dream child. Little did I know that 4 years later after giving up on having any more children I would become pregnant with twins!
    My worry set in about having another preterm delivery, I was put to ease by many doctors that it was not likely to happen again… Bed rest at 15 weeks!!! eeek! and bedrest at the hospital at 24 weeks!!! I made it to 29 weeks, and our twins were born, and to our surprise Boys!!! Again, we were in the NICU for months…but somehow it was comfortable and so familiar, we had spent 3 months there years ago, and it was exactly the same as when we left it. Upon returning with our twin boys we had a welcoming like no other, the nurses were like distant family members that we had not seen or heard from for 4 years, only to become best of friends with some of them during our second stay…
    We are ALL home now, a house full of boys, a blessed house full of life and growth! Wow what a beginning to what life has to offer!
    Many blessings to you and thank you for your blog,
    Shannon

  26. November 2, 2010 6:46 pm

    Chest. ache. Col! You magical little trooper. I go cry on public transit now. Oy. (That Mama of yours sure can tell a story, eh?)

  27. December 20, 2010 9:04 pm

    What an amazing story! So glad he is strong and growing! And oy! I have been barked at by Humboldt County doctors. Mad River Hospital, not McKinleyville, but I can imagine.

  28. March 4, 2011 12:04 pm

    My daughter was born premature, too. Interesting that you came upon my blog yesterday, then, as I am looking at yours today for the first time, I see your story about your son. Valerie came 6 weeks early, nothing compared to what you went through, but very scary for me. As she gets older (almost seven now) those scary memories get further from the surface of my memory, but they are always there. It is good to share the experience. A wise friend once told me you have to tell your story 100 times…
    Take care!
    P.S. You can read my story here
    http://sara-sundries.blogspot.com/2009/06/birth-story-1.html
    and here
    http://sara-sundries.blogspot.com/2009/06/birth-story-no-1-pt-2.html

  29. October 19, 2011 8:11 am

    Oh my goodness! Brings back memories. My Jaia was born 13 weeks premature – Sitting and holding her/kangaroo care, was my lifeline. She was 1 lb 15 oz. Those first months were the absolute hardest of our lives. She’s now 8 1/2 and beautifully healthy in every way!
    Col is a wonderful, amazing little boy!

  30. November 18, 2011 12:56 pm

    Beautiful, Rachel. Please get going on that book project.

  31. HanaPipers permalink
    February 7, 2012 3:29 pm

    :)

  32. March 19, 2012 5:06 am

    Just read this. Beautiful. What a treasure. Your miraculous gift. So carefully given to you to hold. Just beautiful. xx

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