The Worst Day of My Life

Six years ago today our first child was born.  It was an emergency C-section.  I was twenty-six weeks pregnant.  We ended up at the hospital because I had spotting and intense lower back pain.  The nurse on the phone did not sound too concerned but told us we should go in and be seen.

I was almost fully dilated, forty minutes later when we arrived at the hospital.  Fetal monitors were hooked up and while the nurse went off to find someone to catheterize me (to get a blood free urine sample) my water broke.  Only I did not know what had happened, I just knew it was not good.  I grabbed Husband’s hand and in a voice filled with fear and panic I told him something happened!  Husband ran out into the hallway and called out something happened! and the fear and panic that was in my voice was clearly reflected back to me in his own.

There was a flurry of activity.  My midwife was there but so was some man I had never met, dressed in street clothes with a backpack on his back.  It was Easter Sunday and he was a doctor who was getting ready to go home to his family for the night.

They poked and prodded and declared our son frank breech.  I started to babble on about our birth plan and wanting a natural birth and couldn’t they just turn the baby.  I could not process what was happening, what was about to happen.  Then his heartbeat was lost.  They could not find it.  It was firmly and quickly explained that they needed to get the baby out, even though he was coming way too early, and we needed to get to the operating room right now.

The side railing went up and my bed on wheels was pushed.  They were running and we ran into the wall at least once while rounding a corner.  Husband was running along side and he was crying.  One of the very few times I have ever seen him cry.  I told him call my mom.  And then the doors were shut.

They draped a curtain across my body, midline as if my lower half needed privacy from my upper half.  The energy in that room was electric.  Something cold was rubbed on my stomach and people were leaning in, as if ready to cut but I was still awake.  The anesthesiologist was not there.  I actually asked you are going to wait for the anesthesiologist, right?  And then he was there with a mask and I became gone.

When I woke up there were nurses and doctors and they were trying to give me pain medicine.  I kept refusing.  No, no drugs, I don’t want any drugs, I wanted a natural birth.  I kept asking for Husband and only when he came would I accept their drugs, accept that nothing was right and everything was wrong, so very, very wrong.

The first time I saw my son he was in an isolette, the kind with the little doors on the side to stick your hands in.  There was a team of at least six people attending to him.  I was able to touch him, with one finger, for less than a minute before he was taken away and transported to a nearby hospital with a NICU level of care facilities he required.  I told Husband go with him, be with him, I am ok.

I was not ok.  I was shown how to use a hospital grade breast pump, the object of loathing and the source of pain both physically and emotionally for months to come.  I laid in my bed listening to new moms and the crying of new babies and I cried.  Husband came back late in the night with two polaroid pictures of our son.  He curled up on the bed with me and we just were.

Cody spend two months in a level three NICU where he had a total of five surgeries, one involving his heart, the others to address a severe brain bleed he experienced at 48 hours old.  It was not the surgeries that were the hardest, although those were awful.  It was the minutes in the day.  It was all the time his heartbeat would go too slow, it was the infections, the skin sores, the constant fear that one system or another in his body would go wrong.  He spent an additional two weeks at a hospital with a level four NICU after several nurses and one doctor hinted at the fact that we had a right to a second opinion regarding further surgeries that were scheduled to be done by a neurosurgeon we were rapidly loosing faith in.

Six years ago Cody was born at twenty-six weeks gestation.  He was two pounds one and a half ounces and fourteen inches long.  For many weeks we did not know if he was going to live.  Once we were fairly certain he was going to make it we did not know at what level he would function.  Would he ever be able to care for himself, live a normal life?  It was at least a year, maybe two, before we could could even start to breath easy.  I did not bond immediately or well with that little baby of ours.  Perhaps it was a defense mechanism on my part or post partum depression but whatever it was filled me with guilt and left me feeling like a lousy mother.  There were no indications that I was going to have a high risk pregnancy.  I took care of my health, read the baby books, and carefully planned to embrace this thing called parenthood.  No matter, for even today I still have lingering guilt and question just what I could have done differently.

Cody is not your typical six year old.  He has a VP shunt that allows his cerebral spinal fluid to flow from the area surrounding his brain down into his belly.  Without it the pressure would build up in his head causing brain damage and/or death.  We have been told that these basically have a 100% fail rate and so we are always on the lookout for symptoms of a shunt failure.  Cody has mild cerebral palsy, has balance issues, and walks with a notable gait difference (this is a nice way of saying he walks with a limp.)  When he gets sick, quite often he will have a seizure.  He is delayed in his fine motor and gross motor skills.

No, he is not your typical six year old.  He has been through a lot and he has rallied.  He is smart and creative.  He is kind and empathetic.  He is inquisitive and logical.  He is sweet and funny.  He sometimes seems wise beyond his years.  He is perfect.

And so while the day of his birth was one of the worst days of my life, I think of his birthday as one of joy, reflection, and of what can be.

Happy birthday sweetheart.

Week 1 my hands

Week 1 my hand

Week one w papa hands

Week 2 papa hand

The first three pictures are when he was less than a week old (the top two are with my hands the others are with Husband’s hands.)  The last picture is from when he reached the two week mark and had already been through two surgeries.

I have written and rewritten, cut parts out and changed wording but still the words just cannot capture the experience of having a medically fragile baby.  Unless you have been in a NICU, have invested your heart and soul into such a tiny and delicate being, there is no knowing.  I don’t think any amount of words can portray how Cody’s birth has changed me.  Just as there is no way to get a true sense of the grandness of the Grand Canyon by simply looking at pictures or reading a book, there is no way I can fully share with you the grandness of this day of six years ago.

About Shoes

I am an elementary school teacher, a former microbiologist, a mom to a herd of two boys, and a grilled cheese sandwich and beer connoisseur.
This entry was posted in Little Feet and tagged , , , , , , , , , , , , . Bookmark the permalink.

76 Responses to The Worst Day of My Life

  1. That is one touching story. As a parent, I felt the hardship that you went through. But there is a light behind every dark cloud. And today, you can smile knowing a happy miracle happened and everyday is a blessing filled with love and joy.

  2. Jodi Stone says:

    This post was so beautifully written, it made me cry. How very brave of you to share such an intimate, heart-wrenching experience. I

    Happy birthday to your miracle boy.

  3. The Waiting says:

    I really cannot begin to imagine how hard that day and the months following it must have been for you and your family. Cody really is a miracle and the amount of love you’ve shown him is inspirational; many people would not be up to it. It takes a special person to raise a special needs child with joy, optimism, and the knowledge that the child is absolutely perfect the way he is.

    • shoes says:

      Thank you. When I get impatient with him or find myself getting caught up in the “well, typical or normal kids can do this or that” mentality, it helps me to think back to his tough start in life and to think of the changes we have witnessed in him – how far he has come. He is pretty darn awesome!

  4. As a fellow parent of a preemie, this post brought back so many memories. Beautifully written. Happy Birthday to Cody, your little miracle!

    • shoes says:

      There are a lot of us preemie parents out there with our own unique and special story. There were some parents we met in the NICU who’s story did not end as happy as ours has turned out to be. He is pretty amazing.

  5. christine says:

    Cody. Happy birthday to your beautiful little fighter.

  6. Alex says:

    My son was a preemie. By no means did I have to go through what your family went through. You have me in tears. I wish that we knew each other then, to provide emotional support.
    I am happy you have Cody and that he is amazingly perfect. I hope he has a fabulous birthday!

    • shoes says:

      I wish I would have known you back then too. We had very little in the way of emotional support – it was tough going there for quite a while as I am sure you can imagine. I was very apprehension about having a second child even though that was our plan all along. I just did not think I could make it through it again if we had another preemie (which we did but with far less complications).
      Cody had a great birthday and is looking forward to his birthday party this weekend when we get home.

  7. dbdaze says:

    Thank you for opening up and sharing this intense, intimate experience of your family life. We have adopted three children with disabilities and birthed four more but I have never experienced anything like you described. I truly appreciate your willingness to share. Like others, you brought me to tears. I am so thankful that Cody has made such improvement and brings your family such joy. Happy Birthday, Cody!!

    • shoes says:

      You sound like quite the amazing and loving mom for bringing into your lives and family children with disabilities. I am not sure I could be as brave. I learned that I have more compassion, more energy, more ability to be an advocate for my child then I ever thought I could.
      Cody has simply helped me to be a better me just by being his own wonderful self.

  8. mommysaidaswearword says:

    Your words and photos bring tears to my eyes. Caring for a premature child is an impossible task, it is something that my family was very familiar with, and for some reason people rarely talk about how hard it is. You write so beautifully, so honestly. Happy birthday, miracle baby (big boy).

    • shoes says:

      You are right – there are not a lot of conversations about the act of raising a preemie. I can find nothing to compare it to. You go through it one movement at a time because there is nothing else you can do, just hoping against all hope that the worst of the memories fade and you are left with a healthy and happy child.
      Husband and I kept a daily journal of Cody’s time in the NICU and every year around his birthday I skim through it and it always makes me cry. This was the first time I have really written about it.

  9. Nancy says:

    Wow. Beautiful, scary, sad, heart-wrenching post. From your words, I can almost feel how awful that day was for you.

    • shoes says:

      It was a truly awful day. I was worried that I would get some flack for calling the day my child was born one of the worst days of my life but it was just that. We are beyond lucky he is doing so well.

      • Nancy says:

        I can see that. Although it’s nobody’s business how you define any of your days. You may be lucky, or you may just be giving him the right amount of love to keep him going 😉 Eleven years ago, a friend of mine had a little girl with enormous health problems at birth. The doctors said she wouldn’t live through her first week. My friend’s mother was determined to bring her grand-daughter home from the hospital to live out her expected short life surrounded by loved ones. That little girl is 11 years old now and, though she does have medical issues, she’s doing fine. We’re all convinced it’s the love. 🙂

  10. Maiya says:

    This is so filled with love it makes me teary eyed. Happy birthday to your miracle baby! Parenthood is a truely wonderful wonderful thing!

  11. ktlee says:

    Happy birthday to your little miracle. Thank you for sharing such an intense and deeply emotional story.

  12. Weeping…from one who has lived in a Ronald McDonald house and gone through both NICU and PICU, flatlining to defying prognoses and yes, the awful pump for months on end. I pray you have read the short poem, “Welcome to Holland.” It is the only way I have been able to make sense of we live each day and what you so poignantly described. Happy birthday to your precious miracle who makes the little victories the rest of the world take for granted, the biggest victories of all! Your gift to him with this on his day, is our gift – I thank you so dearly.

    • shoes says:

      Oh my, but must you know the pain that comes of children in hospitals, in medically awful situations. And that damn pump!
      I have not read the poem you speak of but will check it out.
      Cody has been having a great birthday, celebrating it with family in sunny Arizona and then again with friends when we get home. This is the first year that I have told him about his birth story and he has asked questions. It is pretty intense to have these conversations with him. What an amazing little guy he is turning out to be.

  13. Wow. What a gift. Life altering and beautiful.

  14. mimijk says:

    I too got to know the NICU when my second child was born. Though his stay wasn’t marked with surgeries and he is now a married man – the moments surrounding his birth and his powerful will echo in my heart as if it were yesterday. You’re Cody IS perfect and his introduction to the world certainly challenged all around him to watch his spirit. I wish him a wondrous birthday and his parents a loving celebration of the miracle they created.

    • shoes says:

      It is always good to hear about former NICU babies growing up and living lives as the rest of us do when they so easily could not have. Thank you for your kind words – he is a great spirit that I have already learned so much from.

  15. Such a powerful and touching story. Happy birthday to Cody!

  16. Hetterbell says:

    The sense of urgency, worry, fear and unconditional love you conveyed in your retelling of what happened had me thinking about situations I would have otherwise been ignorant of. As for you saying you felt you didn’t bond with Cody as you would have liked to straightaway, I would definitely think that was out of nothing other than fear that you might lose him – like you said, a defence mechanism. So I hope that’s not something you’ve beaten yourself up about. We can all tell that you love your boys very much. I’m so glad Cody survived his ordeals and I hope he has just celebrated a very happy birthday! 🙂

    • shoes says:

      I used to beat myself up over the lack of initial bonding especially when he was little and I was listening to other new moms tell about the love at first sight feelings I never had but I realize that it was a way for me to cope with the situation at the time.
      Cody has had quite the journey in his short life. He had a great birthday here in Arizona with family. He will be having a party with friends and more family this weekend when we are back home.

      • Hetterbell says:

        I’m glad you have been able to feel better over the years about how you felt back then. We have no control over our feelings, it’s just that a lot of new mums do talk about the love at first sight feelings, while any other feelings just don’t get spoken about so much. That doesn’t mean they’re not felt by many, though.
        I’m glad Cody had some lovely birthday celebrations and I hope he’s looking forward to his next treats. 🙂

  17. Beth says:

    Happy birthday to Cody, who brings his mother dandelions and smiles. Thank you for sharing the story of his birth.

  18. oh Shoes…I’m so proud of you for writing out Cody’s birth story. Both our boys born at 26 weeks both boys struggled and both are survivors in their own ways. I am so glad Cody is such a fighter I really hope I get to meet him and the rest of you one day!!!

    • shoes says:

      I hope we get to meet you too! It was really good to write this, to remember some of the details I had tucked away. It surprised me how much I cried while writing and re-reading this. Our boys both offer such meaning to our lives each in their own way.

  19. Holy Shit. That is all that comes to mind. Well, that and SO GLAD THEY MADE IT!!!

  20. Kathleen says:

    He is perfect. And you are a wonderful mother.

  21. moonsprig says:

    Wow. Bless you for being so strong. We were in the NICU for just a couple of days with both of our girls after having home births, and those couple of days were so very hard. I cannot imagine what you have been through. What an amazing miracle your little sweetie is. Your writing involved me straight away and I felt pulled along with you in your experience.

    • shoes says:

      Thank you for your comment. It was a crazy rough time and I am still not sure how we made it through, six years later. Being in the NICU environment for as long as we were and seeing the things we saw I feel truly lucky to be standing on the other side of that with a relatively healthy little boy.
      Hope your girls are growing, growing, and doing great!

  22. shoes says:

    Reblogged this on Shoes On The Wrong Feet and commented:

    Today is Cody’s seventh birthday. I wrote last year about his birth story, of being born way too early, of doing so much more than surviving, and of changing my life forever. If you have not read it, please do. It is, he is, a little piece of my soul. In the post, simply replace any references to his age of six, with seven. Time. It marches on.

  23. Annie says:

    Such an amazing, strong, and beautiful story. Time does march on. Experiences like this change a person forever. When my 3rd child was 5 years old (He’s now 8) we had an incredible health scare, and it has forever changed me.
    Wonderful writing. 🙂

    • shoes says:

      Yes, the medical scares we face with children are life changers. I have become a stronger, more patient, hopefully wiser person because of my boys and the experiences I have been through with them. On Cody’s birthday we often look at the clock and recount the moments, what we were doing, how Cody was doing, those short years ago. Then we look at him now and shake our heads at how wonderful and perfect he truly is.

  24. jensine says:

    My brother has been sick from the day he was born, he has severe asthma and exema. He was always small for his age, couldn’t run because he’d lose his breath and was in hospital (intensive care) 24 times before he turned four. He was weak, and sick and because of it bad in school … his first teacher said he was too stupid to learn. Now he is 35, a tall man (186cm), broad shoulders, married to a beautiful woman, has a baby son and is working on his PhD. He still has asthma, he still has skin issues but he lives a full and very happy life. AND I THINK WHEN MY MUM LOOKS AT HIM SHE SEES A MIRACLE

    • shoes says:

      It is good to hear of those who defy the difficult situations they are born into, instead of letting those hardships define them. Cody, and so it sounds your brother, have risen above and rallied over the tough times. They have grown strong and they live life to the fullest.

  25. Oh my how teeny he was. Happy Birthday Cody!!

    • shoes says:

      He was incredibly tiny, born with his eyes still closed like a little kitten. It was so scary. And now he is a sweet and wonderful seven year old boy with the most beautiful golden flecked eyes you could hope to see.

      I am glad you stopped by and left a comment – welcome to my little piece of life!

  26. Wow! Thank you for sharing this story again because I never saw it before! An absolutely breathtaking, gut-wrenching experience that I can not fathom. What an absolute blessing he is to you!

  27. Thank you for such a lovely blog, but let me tell you, I HATE crying this much this early in the morning!

    That being said, it is amazing that he survived at only 26 weeks. I don’t really believe in miracles, but I can see how anyone would consider this one.

    My daughter will turn 7 in 2 weeks’ time and although she’s always been a healthy child and we have had the normal health scares that come with growing up, I can’t even begin to imagine what those first years must have been like for you or how you managed to get through it, seeing as I have to make significant efforts to keep it together when something happens to my daughter.

    I honestly admire parents who have had to see their children suffer or endure sickness or any type of hardship because that, in my opinion, is the toughest test you can put any parent to. As parents, we’d rather take away our child’s pains and suffer them 10 times worse ourselves.

    The fact that your little angel not only survived, but is basically a normal kid in spite of the odds is proof that whatever you guys did/are doing is fine.

    Happy Birthday, Cody!!!

    • shoes says:

      Oh – I am sorry to make you cry!! I am not one for miracles either, but I have not come up with another word that really describes Cody and how well he has done.

      My feelings towards myself have softened over the years but I had a very hard time trying to figure out what to do with all the emotions that came with that experience. I did not have nice pregnancy. I did not have a baby shower. I did not get to have a birth story that I could tell to the mom’s in my mom group that was fluffy, funny, or touching. People cringed or gave me pity when I explained the events of Cody’s birth and the subsequent years when I did not connect, did not want to connect, with my little baby. I did not think I was cut out for it and I felt I was going at it all wrong. And mostly, I convinced myself that somehow, I was the one at fault. I have allowed myself to cave, to cut myself some slack and to accept that it was not my fault. I have stopped thinking about the “what ifs” and I am truly happy with how things are. I wish Cody was perfectly “normal” that he did not have seizures or a need for his VP shunt but he does and we manage. He is happy and so I can be too.

      Cody had a wonderful seventh birthday and even lost a front tooth on that day. Always nice to get a visit from the tooth fairy. 🙂

  28. Shoes… the memories. Yowza. And that damned breast pump from hell… BJ wasn’t born via c-section, however, the feelings of overwhelming grief, dispair and confusion are the exact same. Our 24 week miracle is doing well and I’m beyond happy that your little miracle boy is doing well too. Children are so incredibly resiliant. It’s the parents who carry the pain for so long afterwards. Thank you so much for posting this. I agree there aren’t enough preemie/NICU stories out there. And thank you so much for reading mine and taking the time out to comment. Cheers to you and your little champion Cody!

    • shoes says:

      The memories are strange to revisit and I find that a lot of the details are lost in the fog of utter sadness and fear. I rather with I had been blogging at that time so I could have written my story, Cody’s story. I think it would have helped me through the process but I find that even now, all these years later, that it helps me to write about it. And that damned breast pump, indeed!! I had such great loathing for that machine. You are right about those babies of ours being so resilient – it is truly amazing! If only I was as resilient as my son, then I would have put the pain all behind me by now. I am glad to hear your early bird is doing well. It is nice to hear such things, truly.

      • I wish I was a blogger then too!! I did write him letters so hopefully those will suffice. Everyday after leaving the NICU I wrote him a letter… So I’ve got almost 120… Now I write him on his birthdays and milestones. I plan on giving them all too him when he has a child of his own. I’ve thought about having them published too.

  29. By the way… I’d love to share your story on my blog with your permission.

  30. It is a life-is-precious kind of a week, after Boston, isn’t it? Thank you for sharing this again. Ach.

    • shoes says:

      Yes it is. What are people thinking, I just don’t know. I just hug my little family a bit tighter with each and every event that chips away at the layer of kindness found on humanity.

  31. amomnextdoor says:

    Thank you for such a beautiful story. I started crying when you wrote about the hospital bed bumping into the walls, a detail that so vividly conveyed the urgency and terror of that moment. Even with two healthy babies, I have had similar struggles with guilt over my failure to always feel bonded to my children the way I think I ought to be. I imagine that Cody, and my own children, will also have doubts about themselves at times in their lives–about being different, about whether or not they are the people we want them to be, whether they have managed to “please” us. Yet somehow we parents and children manage to bring gifts to each other: premature, unexpected, incomplete, imperfect gifts of greatest measure. One of yours is the way you open your heart to the page. Thank you for writing, and thank you for posting the pictures of your precious Cody.

    • shoes says:

      What a touching comment you left – thank you. I often worry if Cody will wonder how things might have been (and if I would have loved him more) had things gone another way and he has been born a full term healthy baby. The truth is that I love him as he is, for it is a part of him and that part completes who he is. It is the whole of him that I love and I don’t think I could love him more than I do now.

      The bonding – that is another issue I have struggled with even though I love and bond with him now, I did not when he was a baby. There is a shame and guilt in that that I don’t think I will ever be able to erase. The writing helps to get it out there and it is good to hear your story that there are others who will admit to not bonding and being that all perfect loving mother from the very first moment.

  32. momnotsoperfect says:

    Oh, dear sweet baby. That breaks my heart to see, because we spent time in the NICU, too. It’s amazing how they thrive, though, isn’t it? 🙂

    • shoes says:

      The NICU is a world unto itself that an outsider can never fully grasp. I am amazing to hear about so many others who have been there and walked those halls, shuffling along with heavy hearts. And those babies how they can thrive! Cody is proof of that for sure.

  33. Mish says:

    Gosh shoes, I had no idea you went through this! My birth story is similarly harrowing (emergency c-section) and my little guy also had a brain bleed and spend time in NICU. Our little guys are amazing fighters. Lots of love to you! x

    • shoes says:

      All those little NICU fighters are amazing, aren’t they? Their strength, resilience, and courage give us something to strive for.

  34. Pingback: Birthday Marbles | Shoes On The Wrong Feet

  35. Heather W says:

    I can’t imagine how scary that day must have been. I am so happy for you that you have had such a jewel of a boy since that day. I’m so happy you have two jewels! Happy Birthday, Cody! 🙂

  36. Dirty Nappy says:

    Beautiful story, incredible pictures thank you for sharing it.

    • shoes says:

      You are welcome. It is cathartic to go back and reread the birth story of Cody. It has impacted more facets of my life than even I can’t fully realize.

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