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The Handhold *or* When everything changed

2011 January 24

*backstory, circa January 2005*

It wasn’t when I felt that first gush through my legs at midnight, storm clouds knocking around the winter sky, when everything changed. It wasn’t even hours later, my pregnant body shivering in a hospital gown, awaiting the ultrasound technician’s precarious arrival through the quiet fury of a Colorado snowstorm. During those moments—my 24 weeks-pregnant belly pulsing with contractions—I still had hope. Dan and I even constructed, like a flimsy cardboard shack, the plan that once the docs released us back to our normal lives where pregnancies grow to term and healthy babies are born, we’d drive straight to our favorite diner, order whopping breakfasts and count our blessings.

My midwife entered the hospital room, neck wrapped in a colorful scarf, hair moist with snow and lips set to a frown. She knelt by my bedside, adopting the pose that would become all too familiar in the next week, as I was visited by a parade of specialists. Her voice had the slow, precise gait of an elementary school teacher giving a lesson on enunciating. “Your amniotic sac broke,” she parsed. “There’s no fluid left in your uterus.” Ever the optimist, I waited for the good news, the part about how modern medicine had a fix for this very problem. She continued. “Once your water breaks, labor is likely to start. We need to fly you to Denver immediately; if your baby is born here, we can’t save it.”

At 24 weeks a baby is mostly formed. This isn’t to say it can live outside of the womb without great assistance, but every organ is present and accounted for. Every organ except for the lungs, still nubby caricatures of their future selves. The alveoli—designed to grab oxygen from inhaled air—are winter-scarred saplings compared to the branchy canopy of full term lungs. At 24 weeks, the heart thumps, the bladder empties, but the lungs are still practicing their highly skilled work of breathing.

The EMT who rode with us in the back of the ambulance while we inched and spun towards our small town airport on snow-packed roads asked if we knew the baby’s gender (we didn’t). He told us about his own pregnant wife’s morning sickness as if we were at some cheery birthing class talking shop. I didn’t mention that the last thing my midwife said—her words pinging in my brain like a slow drip—was, “if this baby is born in the next 48 hours, I recommend wrapping it in a blanket and letting it die on your chest. The disabilities associated with babies born this early are tremendous and the life-saving measures can be cruel.”

Our emergency jet ride lifted us over the roiling snow storm where the skies were the depthless blue of a newborn’s eyes, the sun dizzyingly bright. I lay on the stretcher, oxygen in my nose, monitors beeping out data, feeling the pebbly place in my chest where the unyielding love and protection I already felt for this baby merged with the equally vast sorrow at my body’s failure to provide it a safe home.

The plane landed 350 miles away from home and another ambulance ferried Dan and me to the labor and delivery floor of a big city hospital. I had  landed in the foreign country of Pregnancies Gone Awry, and yet this was still not the moment when everything changed.

My sweet pregnancy was now a medical crisis. Every few hours a nurse checked my vitals and tracked the baby, who was moving lower and lower in my faulty womb. The doctors breezed through my room, their sad mouths spewing grim statistics. Babies born at 24 weeks had long hospital stays and multitudes of problems: blindness, deafness, cerebral palsy, feeding tubes, brain bleeds; words that change a parent’s life forever. Based on the teetering piles of frightening information plus my midwife’s advice, we were steeling ourselves to let the baby go.

With my amniotic fluid drained, I no longer felt the baby’s kicks and hiccups which were once like text messages reminding me “I’m here! I’m okay!” But my baby’s heartbeat, galloping like a wild horse through the desert of my womb, remained strong.

After several days of bedrest, Dan leaving for short stretches to roam the snow-grimy streets of Denver, we were visited by a new neonatologist. This was the very moment after which nothing was ever the same. Dr Gien, dark and handsome, announced that I had now held on for 25 weeks, which changed everything. “If your baby comes now,” this doctor said, “we can tell pretty quickly if it needs heroic life saving measures. Many babies take the mature route at 25 weeks and do okay.” This was our first handhold of hope, which we gripped until our fingers bled.

Our son was born 3 days later at 1 pound 12 ounces. He stayed in the NICU for 101 days and though he needed blood transfusions, IV nutrition, antibiotics, diuretics, steroids, oxygen, and my pumped breast milk tube-fed in doses of 1 tablespoon every hour, he is now a strong, bright six year old. Lately, days pass where his birth story—and the worrisome years that followed—doesn’t alight in my mind, but flits by like a captive bird finally set free. Most days I see a vibrant, loved boy riding his bike in the late afternoon sun.

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48 Responses leave one →
  1. January 24, 2011

    Oh R, tears are streaming down my mama cheeks. Through your pictures I see that same bright boy you just described. Strong & beautiful. Such a heartfelt raw moment to share…. *hugs*

  2. January 24, 2011

    holy smokes. holy, really. good for writing, good on you.

  3. January 24, 2011

    Doing some crying for you here. Amazing story, definitely a miracle!

  4. Ellen permalink
    January 24, 2011

    When are you going to write that book about your experiences? I think the world is waiting for it.

    Thank you for your luminous writing.

  5. January 24, 2011

    It’s not just the tears you inspire. It’s this shared motherhood we all feel. The words of your midwife, the blanket and your chest are all just so much to take in. Yet there are very few of us that don’t know someone who has had to spend time in the NICU and know the torment of beginning a life there.

    Your life makes more sense to me knowing this story. How you pour yourself into salves and chickens eggs. You come to it with a yearning heart. That is why I’ve always felt such healing when I peer into a saute pan of yours that is filled with chopped vegetables.

    Your children are lucky. They have you drawing them toward life.

  6. January 24, 2011

    Oh Rachel, I’m crying too. I too had a difficult birth and had to deliever early. I was induced (albeit at 38 weeeks) due to a very rare condition that, had I gone full term, could have resulted in a stillbirth and a liver transplant for me. My liver was failing. However after a difficult birth and almost losing my babe I left the hospital three hours after he was born…and I never had to deal with an aftermath of complications. You are one amazing mama and woman. And Col is a beautiful little boy.

    Thank you so much for sharing your birth story. The sharing of such power and strength is so empowering for women. I’m honoured to have read yours. xo

    http://debbiedas.wordpress.com/2010/07/29/giving-birth/

  7. January 24, 2011

    Oh Rachel, I’m crying too. I too had a difficult birth and had to deliever early. I was induced (albeit at 38 weeeks) due to a very rare condition that, had I gone full term, could have resulted in a stillbirth and a liver transplant for me. My liver was failing. However after a difficult birth and almost losing my babe I left the hospital three hours after he was born…and I never had to deal with an aftermath of complications. You are one amazing mama and woman. And Col is a beautiful little boy.

    Thank you so much for sharing your birth story. The sharing of such power and strength is so empowering for women.
    I’m honoured to have read yours. xo

  8. Growing Flowers permalink
    January 24, 2011

    A beautiful depiction of an intensely frightening birth. I am so happy for you and your family – happy for your little boy. I am curious as to your relationship with your Midwife now. Are you or were you upset with her for her advice, or were you grateful that she didn’t give you false hope? If you feel like sharing more about that, I’d love to hear it. lots of love, Kiersten

    • 6512 and growing permalink*
      January 24, 2011

      Kiersten, Thanks for asking. I was very upset with my midwife shortly after Col was born, but I think I understand now where she was coming from. It is rare for a baby born at 24 weeks not to have some big issues along the way. However, once you’re dealing with your own baby, the issues sometimes shrink in relation to your child’s big, wonderful life. We decided to move to sea level when Col was 18 months old because he couldn’t get off oxygen here at 6512 feet. It was a really big deal for such rooted people, but at the same time, it was just what needed to be done, so Col could run and play and grow without being tethered to oxygen.

      I think it’s important for parents of preemies to spread the success stories. I wish someone had told me, when Col was in the NICU, that there were 25-weekers who ended up just fine. The nurses often didn’t know how children did once they left the NICU. Expectations weren’t high. No one thought Col would ever exclusively breastfeed (he did). I know Col is a very lucky boy to have had so few lingering complications of preemiehood, many are not so lucky.

      Ultimately, it’s a tricky business for health care practitioners to give such advice. Each baby is different.

  9. January 24, 2011

    You have a living miracle that you can touch everyday. You have been blessed.

  10. Steph permalink
    January 24, 2011

    I still can’t believe what you went through! The part about letting the baby die on your chest just breaks my heart in a way that I cannot describe. First time motherhood is heroic enough, but your efforts and strength were superhuman!!!

    Lots of love to you and that beautiful little boy, who is a living testament to the will of the human spirit!

  11. Audrey permalink
    January 24, 2011

    Sending you all my love! What a brave, strong, loving family!

  12. ike permalink
    January 24, 2011

    Now that my tears have slowed down and I can see the keyboard more or less clearly i have to write a few words. I feel so grateful to all the doctors and nurses at Denver Hospital for the amazing care they gave Col when he was born. It was like this band of angels in green gowns appeared out of nothingness, broke into two groups-one to aid in Col’s birth and the other to quickly take him to another room to do whatever needed to be done to save his life. Rachel and Dan you were both awesome-love you both.
    Baba

  13. Anonymous permalink
    January 24, 2011

    oh, this is simply beautiful. he is an amazingly little man and, well, you know how i feel about you. my heart aches when i think of you and dan flying to denver with those words of advice spoken to you floating around in your sweet heads. i know your midwife was trying to support you, but man, i don’t know what she was thinking? i am going to be carrying those words around in my heart, and it has been nearly four years since i have been pregnant and about to go into labor. thanks for sharing this part of your life with us. xxooxox kathleen

  14. Melissa permalink
    January 24, 2011

    Somehow, after just seeing the title, I had to wait until my coffee brewed before I sat down to read this, my almost 8 month old asleep while Avi is at school–and I agree with the person who said you should write a book–there are so many families going through something similar that could benefit from your words (no pressure or anything!).

    Your writing is so powerful and your process so true.

    I also struggle with medical professionals adding their 2 cents to a parent’s ordeal–each person has to decide what feels right.

    Oh, and I have to say that this weekend I hated working in the ICN. I couldn’t even look at the babies while I was there. I don’t know how long I will make it on that gig–too much sadness for me right now. It’s fucked up.

    Thank you, as always, for sharing your story so beautifully.

  15. January 24, 2011

    wow i cannot imagine how terrified you were at that time. this also gives me perspective on how you become such a truly grateful mother, you probably would have been no matter how cole arrived- yet you seem not to stress about little things with the kids. I think that is super! It has to be awe inspiring to see cole grow from such a tiny frail person to the boy he is now must make your heart sing.

  16. Ami permalink
    January 24, 2011

    What a tremendous story. Your boy came into the world in his own way, to bring his own lessons and challenges. Thank you so much for sharing these words, at the least, to remind me of my own simple blessings. The ease with which my son has always breathed, for example…
    You are a courageous and brilliant mother! I feel honored to know you and to read your sweet stories. This one, so obviously rooted in the deepest of primal feelings is a testament to the depth and meaning with which you live your days!

  17. January 24, 2011

    I cried. I don’t know how you could even breathe after your midwife’s comment. I was holding my breath even here, on my couch, at my computer. It’s amazing how laid-back you seem as a mother despite facing such life or death challenges in your baby.

  18. January 24, 2011

    Rachel, thank you for this and I’m so glad you shared your experience. Having known other mothers of premies, I know how intense and miraculous the birth stories can be, and I was very curious about yours. I utterly broke down when I read the advice from your midwife. I understand what she was saying, but I know babies who have survived at 5 and 6 months premature…some with complications, others without, and her words seem unnecessarily cruel. Bless Dr. Glen and his hopeful vision. And blessings to Col and his bright spirit, and blessings to your body which *did* turn out to be just perfect for your children. Much, much love to you and your family.

  19. January 24, 2011

    Your stories have made me laugh out loud so many times. Your stories have even left me feeling a little off toward raw meat. This story just made a few tears come.

    I loved how you described it at the end…fliting by like a captive bird set free. As long as I’ve been following along on your blog, I’ve thought Col is one pretty amazing little dude.

  20. January 24, 2011

    I had to read this in little bursts, for fear of completely losing it at work. Because I know the story of Col in the NICU, and know that he is a vibrant little boy, it was a bit easier to get through. But Rachel, hearing this part of the story…there are no words, and yet, you find them and share them with us, your blessed readers.

    I agree that this is an important story to share – not just for hope, but for awareness. There are still too many unknowns surrounding prematurity (and why it happens), and I fear the repercussions, especially in terms of the increase in multiple births.

    I know you must hug Col (and Rose) many times a day, but please give him one for me and everyone reading his story, and feeling love in our hearts for a boy (most of us) have never met.

  21. January 24, 2011

    Oh, that is so scary! What a wonder 1 week and 3 days makes…and what a wonder that he’s that vibrant 6-year-old. It’s heartbreaking to imagine the alternative ending to this story.

  22. January 24, 2011

    This brings back everything from the day I was admitted to the maternity ward at 23 weeks, through the 11 days I “held on” until my twins were born at 24 and 3/7ths. We were told that the 24-week mark was significant. At that time (1991), babies born before 24 weeks didn’t survive.

    Every mother remembers the birth of each of her children. We carry those stories with us, like badges of honor, and tell them over and over again. But for moms of preemies, it’s more than a story. I can’t tell you more than scant details about what happened yesterday, but I can recall every blink and bleep of the machines on the NICU, every rising hope and nauseating dip of fear. That was 19 years ago.

    We are so lucky. Our twins are happy and healthy and on the road to building their own lives. I’m glad you found us at Mike&Ollie: 24-Weekers Who Beat the Odds. Thank you for sharing your story and our best wishes as you get the joy of watching your preemie continue to grow.

  23. January 24, 2011

    Okay. Now that I have let my breath out, and taken a ragged one in as I get the tears under control…

    Oh my gosh, Rachel. I cannot even imagine the fear, likely outright chest-crushing terror, you felt on that flight into Denver. What a wonder your Col is! Clearly, yes, vibrant! It shows in every photo. He kinda glows with vibrancy. How amazing we humans are! And oh, are those the times that I am deeply grateful for the medical age in which we live. Not a big fan of allopathy, but when it’s what’s needed… boy oh boy, am I glad it’s there!

    And to echo others… yes, this is such an important story, probably more so even for those of us who have not gone through this experience. To understand more clearly what it is to be IN it is truly priceless. Thank you so much for sharing such a personal and intense story.

  24. January 24, 2011

    I can’t believe you have the clarity and calm to write about this, even now. My heart breaks, over and over again, when you write about Col’s first few days, weeks, months. Wow, Rachel, you are amazing!

  25. January 24, 2011

    Rachel, I have shared your birth story on my FB page because I think your story is so inspiring and heartbreaking. Your power with words capture so eloquently the raw emotions, and the scene as alien as that must have felt to be in the Denver Hospital. Thank you for sharing your story!

  26. January 25, 2011

    Amazing. You, your son, your family story. I read this hours ago, but still cannot get your midwife’s words out of my head. For some reason I find myself wanting to defend her, to justify her words, but can’t. I can *almost* understand her advice, but then I see your bright, vibrant 6 year old boy….

    Something I’ve often wondered: how did Col’s birth affected your pregnancy with Rose? Mentally and physically?

    • 6512 and growing permalink*
      January 25, 2011

      I did a lot of prevention in my pregnancy with Rose, both “natural” and allopathic. I had a few scares of preterm labor close to 28 weeks with a very short period of bedrest, but mostly the pregnancy was healing and joyous. When I hit 25 weeks with Rose I was horrified that that was how far I’d made it with Col. I didn’t have the perspective with Col, but with my 2nd pregnancy I saw how truly awful and dysfunctional it was to release a baby from your womb at such an early date. I had plenty of moments of fear and anxiety but mostly I was thrilled to be pregnant all the way up until the very end and would parade around the house flaunting my gorgeous belly and delighting in my normal pregnancy.

  27. January 25, 2011

    Goodness Rachel. Because of your words, tenderness and poignancy, this post is beautiful in its horror. I held my breath and reread what your midwife said several times before moving on. Wow. Hard to imagine. I appreciate the reader who asked if you were upset with her and your response. Just wow. Even though our experiences differ greatly my body sucks into that terror when you talk about Col. I remember Ruby’s experience so well but mostly don’t think about it much…sometimes I wonder if it will crash down on me. But, mostly, like you, I just see a kid about to walk getting four new teeth.

    xo

  28. January 25, 2011

    Rachel, I couldn’t take it! Whew! Look at him now :o) Ginny

  29. January 25, 2011

    Oh my heart. Rachel, I’m at 22 weeks now in my pregnancy and even though I know Col is fine and is in fact doing remarkably well, I was white-knuckled and breathless, devouring your every word here. I just can’t imagine what you must have gone through.

    On another note, I second/third whoever who said you need to write a book – you have such a way with words. The beauty of your prose and the power in your story-telling are truly remarkable.

  30. January 25, 2011

    Wow. Just, wow. I think I held my breath the whole time I was reading that story. An hour ago I was re-reading what I wrote a year ago about a miscarriage I had and the trauma that ensued after that. I am struck by the similarities and differences in each woman’s birth story. Each baby is so unique, and each birth is completely different from any other. Thank you for sharing your story. Was there something that prompted you to write this now?

  31. Linda Buckle permalink
    January 25, 2011

    Hi Rachel, I’m so touched how you expressed your feelings
    about Col’s birth, with so many thoughts and fears going through
    your mind and body. What brave, loving parents you were
    for Col! Noone is prepared for such an expereince, and you do
    what you have to do, when there is no choice but to go on. I agree with Ellen that you have a story to write so that many
    more people can read it. Keep writing! Much love, Linda

  32. January 26, 2011

    I can’t even begin to express how moving this post and the comments are. That situation is so impossible to truly understand until you go through it and your words are so illuminating. Thank you so much for sharing this; those are some powerful words and I wish more parents and caregivers in NICU could have a chance to hear them.

  33. Caraway permalink
    January 26, 2011

    Hi Rachel, how wonderful that you’re sharing some of this on your blog! You know I’ve always been so awed at how strong and dedicated you and Dan are and were as you weathered this ordeal. The way you both sat with him all day every day during those 101 NICU days, pumped freezers-full of magical breastmilk, and gave as much Kangaroo Care as the nurses would allow! I KNOW it made all the difference for Col, in his short- and longterm outcomes. You are such amazing parents.

    As a midwife, I also still wince at your midwife’s recommendation. At the time, I was already a practicing midwife and had encountered some very tragic second trimester losses in our patients–so I was familiar with the doom and gloom that she was thinking about. The part of what she did that made me so angry, though, was the fact that she gave you a RECOMMENDATION as to whether to try to save your baby’s life or not. That is a choice that should be made by the PARENTS at 24 weeks, not by a health care provider. The health care providers are there to give you the best most accurate information and the best medical care, but choices about whether to risk using heroic measures to save a premie or not are personal and individual, and I believe they are the right of the parents.

    I’ll bet she would be sad to think that those words still ring so clear in your memory 6 years later. I’m sure she had the best of intentions. I think she just overstepped some boundaries in making a recommendation, rather than just wishing you love, luck and godspeed in your journey!

    Anyway, thank you for the post. You guys are the best!
    Love, Caraway

    • 6512 and growing permalink*
      January 27, 2011

      I totally agree. I was vulnerable and impressionable and completely ignorant about prematurity and didn’t have any time or ability to do any research at that point.

  34. January 27, 2011

    oh, girl.
    *hand on heart*

  35. January 27, 2011

    haven’t quite caught my breath long enough to form words but wanted to start by saying thank you for sharing this.

    xo

    ~erin

  36. Jenna permalink
    January 27, 2011

    Your post brought me to tears and made me realize how amazing yet terrifying those moments in life can be. This past year, I was sitting copilot on the medical plane to Denver with my unconscious husband who had just had a traumatic brain injury. As scary as that time was, I have never felt so held by the universe and the people that care about us. Thank you for sharing!

  37. jojo permalink
    January 28, 2011

    Hooray Col!!! Hooray for Dan and Rachel!!!!! Thanks for sharing that triumphant story.

  38. January 28, 2011

    I guess I didn’t know the whole story. Thank you for being so brave to tell us. So glad Col is here!

  39. January 28, 2011

    Wow!

  40. January 31, 2011

    I have to add my voice, Rachel. That is an incredible, and incredibly painful story.

    I had midwives for both my children in Amsterdam, and have an enduring deep affection for them and the essential role they play. I know a (first-time!) mother under such circumstances is rendered highly impressionable in the face of such a specialist (with whom you’d already undoubtedly formed a bond). I also know that in emergency situations you have to make life-changing choices, sometimes without the luxury of time to research and evaluate. But when you’ve been gestating for weeks and weeks, the dream soldifies, takes very physical form, and then you hear this…words fail.

    You beat the odds, you proved her wrong, you have a vibrant, lovely, healthy child–two even.

    (Have you ever been able to pick up Bohjalian’s Midwives?)

    • 6512 and growing permalink*
      January 31, 2011

      Tammy,

      I read Midwives when I was pregnant with Rose. Gripping to say the least. Probably my favorite of his books.

  41. February 6, 2011

    on col’s birthday, i went back to your linked post and read through the stories of his years/birthdays. this, though, was kind of the missing piece. and even this digs deep while barely scratching the surface. you are just remarkable, and i so admire you. xoxo

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