Coming to terms with “Almost”

I have to admit, the date has kind of crept up on me. May 24 (tomorrow) is the hardest of the anniversaries for me.  It’s the anniversary of Owen’s sickest day.

I guess, in some ways it’s good that I haven’t been focused on the date.  It probably means the wounds have started healing.  At the same time, I still wonder if I’ve really come to terms with that day.  Or, even if I should try to come to terms with it.  At the end of the day, we all know that Owen lived.  Honestly, sometimes even I (the trumpeter of not being “over it“) tell myself I should just move on and not worry about that day anymore.  Just leave it in the past.

I think I struggle with leaving it in the past, because in truth I wasn’t there when it was happening.  I was physically there and I hazily remember everything, but it was an out of body moment starting with the 8:00 AM phone call from the neonatologist.

The call woke me up and I wasn’t really understanding the magnitude of the situation.  Owen had been put on the oscillating vent the afternoon before, so I knew that he was sick, but when your child is already on life support to begin with, it’s not always crystal clear the difference between “sick” and “high concern for his chances of survival”.  Finally the doctor said, “he’s on 100% O2 and we’re having a hard time keeping is saturations in the 80’s”.   Oh!  It started to click. I then said, Kyle’s just in the shower and was on his way to the hospital.  She replied, “I think that would be best.”

That sentence did it… it officially clicked.  With the proverbial click, the rest of the experience became out-of-body.

There are moments that I remember like I’m still in them.

Kyle intercepting me at the NICU door and explaining that Owen would be needing emergency surgery.  They feared NEC.

Walking into the nursery and seeing the cover of the isollette off and the fellow and neonatologist setting up a bit of a home base at his bedside.  Owen’s color, everywhere, was black and he was so puffed up that he looked chubbier than a full term baby.  The vent was puffing so many breaths into him each minute that it looked like he was laying on some sort of shaking table.

The social worker, Rachael, finding Kyle and me in the family room and saying, “Dr. Ramel came to find me because she is very concerned for Owen.  Is there anyone I can call for you?  Is there anything I can do?”  She could see in my face that I was trying to speak, but couldn’t.  Simultaneously, she spoke and I sobbed the same word…”pray.”

Shortly after she left us, Chuck, the chaplain found Kyle and I in the family room.  We were each on our cell phones with family.  I saw him look at us being busy on the phone and backing out of the room.  I sighed a breath of relief because talking to the chaplain would have made it much too real.

Walking through the NICU hallway with tear streaks down my face and seeing the looks of pity on the staffs’ faces.

Getting the debrief from the surgeon and hearing him say, “this has to resolve itself tonight” in reference to Owen’s bleeding.  The neonatologist immediately following up with asking us if we can stay the night.

Getting our room and taking a break from the bedside to lay in the fetal position and plea out loud with God to “not let him die”.

At 3:00 in the morning, the fellow, who was staying bedside, told me she felt Owen was stabilizing and that I should get some sleep.  I was in the room for 15 minutes when there was a knock on the door.  Owen was back up to 100% O2 and they were afraid they may need to open him back up.  I understood that Owen wasn’t going to be able to tolerate another surgery that night and hoped it wasn’t the case.  What I didn’t understand until Kyle and I walked down the hall was that the entire operating team and all of their equipment was lined up in the hallway ready to go.  That hallway had been people free 15 minutes prior.  We rounded the corner into the nursery and the surgeon and the neonatologist turned to us with what Kyle describes as, “what the fuck just happened” looks on their faces.

Fortunately, it was a false alarm.  Owen’s catheter got plugged and so his bladder became full of urine, further distending his already severely distended insides.  His lungs had no room to open.  The catheter was pulled and pee went everywhere.  Owen still needed 100% oxygen for another 24 hours after, but they did not have to do the surgery.  Thank God.

I know it sounds like that is a lot of the day to remember, but I just told you every moment of a 48 hour period that I remember and even though, the memory is out of body…like I’m looking at myself experiencing the day.  I know the rest happened, and I know I was there, but I don’t feel like I was actively a part of it.

I assumes it’s my brain’s way of protecting me – making those days a haze.  There wasn’t ever a moment when he coded or when the doctors asked if we wanted to stop treatment.  We fortunately did  not get to that point, but when his surgeon last saw Owen he said, “that day traumatized me”  He’s not the type of guy to say that unless he meant it.

It traumatized me too.  I mean really, how do you come to terms with the fact that nightmare really happened?

I hear it takes time.

I’m still waiting.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

19 thoughts on “Coming to terms with “Almost”

  1. It must take time. The Tuesday after Thanksgiving, November 29, 2011, was the sickest day for our daughter, and really the only sick day she had. Her brother was all over the place with apnea and urinary tract infections, so we were used to his crazy roller coaster. Her course had been SO stable and SO positive that we almost started relying on her to be the “healthy” one. I went to the NICU like normal and a nurse we had never had but knew well said, “Look at her. You know her. Does her color look okay to you and is her belly always that puffy?” With one glance, I knew something was really wrong. She was gray, had a huge belly and our normally active little girl was listless in the warmer. They feared NEC but never told me that and just did ultrasound after ultrasound to monitor her belly. I don’t remember anything about that day except that interaction with the nurse and holding her hand through every ultrasound pushing on her tender belly. My husband doesn’t even remember that she was ever sick. If you figure out how long it takes to come to terms with these “sickest days,” please let me know when it is.

    • Thank you for sharing your story, Kelly. It’s funny how our brain has tricks to help us deal with this stuff. I’ll be sure to do a whole series on the manual of how long it takes, as soon as I figure it out 😉

      What I find interesting is that we always remember the date, the time of day and the nearest holiday. Owen’s was also a Tuesday – the Tuesday before Memorial Day weekend.

      • My pregnancy turned into a series of “too soon” holidays. When we found out my due date was January 16th, the doctor said, “Well, you can deliver any time after Christmas. You really need to make it past Thanksgiving. Worst case scenario, I want you to make it past Halloween.” They were born 10/27. Instead, we held them the first time on Halloween, we had Thanksgiving dinner in my hospital nesting room, and spent Christmas with a respiratory therapist dressed up as Santa. Luckily, though, the NICU faces downtown Austin, on the top floor of the hospital, so we watched New Year’s Eve fireworks with our babies.

        • What an amazing memory watching NYE fireworks with your babies. We also had some special holiday moments. He was born the Thursday before Easter, I held him the first time on Mother’s Day and he extubated himself (and it stuck for a week) on Father’s Day.

    • Yes there was so many times I went to see Giovanni and couldn’t get in because they pefoming surgery on a baby. My heart would sink becuase sometimes you didn’t know if it was your baby of not. I seen you and Kyle go so much more with Owen than what Giovanni had to endure. Me and Eddie would pray for Owen and all the other babies in the NICU. I admire you do much. Your are a great mother and friend. We were our own support team in nursery 2. It was really hard for me when we got switched to another nursery. I felt I was losing my friend. Luv you. Be strong. Owen had come a long way.

      Dina

      • I felt the same, Dina. You, Bre and Joanna were my first friends in the NICU and so important to my sanity throughout. Thank you for sharing. xoxo

  2. Such stark and frightening details seem unimaginable. So hard to believe Owen (and all of you) had to endure such a dark trial. And look at him now! Triumphant, wise and full of life’s promise— an inspiration for all of us. Happy, happy Memorial Day to Owen and his family.

    • I hope you guys had a great memorial day, Joey! And yes, it’s very inspiring to see how far he has come (bringing his monkey “bainy” everywhere he goes).

  3. I have lived every moment you described. It’s what I can’t bring myself to write about (or really think about in depth) just yet. Just reading your post brought me back. It’s sad yet healing. I hope you are able to spend the day celebrating Owen!

  4. I want to thank you for writing this post. I am nearing the one year anniversary of our little man’s sickest day, June 10th and I am already anxious about my emotions on that day. I have so much guilt surrounding that day. I had finally given in and allowed my friends and family to plan a baby shower for us. My husband and I were registering and I was happily dreaming about bringing him home. He had been doing so good that we could finally start to see the light at the end of the tunnel. I received the call from our neo in the middle of the store. I am sure people stared as I tried to keep my legs under me as I melted into a pool of tears. I could not breathe. Parts of that day flash thru my memory and I know exactly what you mean about it seeming like an out of body experience. We have pictures from that day and the days following that i cannot share with others. just the thought of the look on their faces is more than I can take. And I wonder will I ever be able to heal from that day.

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  7. How is it that those days of being told that the silken thread of life is taut to the point of breaking become completely etched in your head?

    Watching my daughter stop breathing (twice in unit, once at home) ….watching the red button being pressed on the wall and staff running into the the room (and me running out and running in and then running out again like some loon). Not having a red button at home (the danger of an ordinary life)

    I can literally play most of the tough times through in my head as a series of slow bright distinct black & white stills. Not sure of the Freudian (!) significance of the distilling of these memories into black and white but that is how they sit in the archive of my head.

    The NEC days are greeted by staff with an aura of doom that fills one with dread and fear, an honourable, well-founded fear at that.

    Who ever coined that phrase “family room” ….for me it was a room I never wanted to go near and I hated seeing the Chaplain, Imam or Rabbi as they, for me, were usually the harbingers of bad, bad news.

    I do remember one moment of levity when a Rabbi pitched up with a horn (I think) or something of significance in a Malborough Duty Free carrier bag. Even in the darkest of times some black humour lurks. If the neonatologist doesn’t ruin your life, fags might!

    Thanks for an insightful, thought-provoking post, reminding us of those near, near misses, almost x

    • Helene, Thank you for sharing your perspective. It’s interesting to me that we all have our own name for the way these memories are etched into our head. I often refer to mine as my techno-color memories. The ones where I remember every detail of all 5 senses and I’m almost always watching myself go through it.

      I also love your memories of the moments of laughter. Yes, yes, yes. There are definitely moments of tense laughter in the NICU.

  8. Tatum, I just read this and I want to tell you how sorry I am that this happened. I cannot begin to imagine how completely frightening and shocking all of this must have been for you and your husband. I always wonder how a human’s heart can endure so much pain and anxiety over a sick child without breaking. But I know that these moments leave scars that will never fully heal.
    I am so glad those days came to a good end. Owen is such a wonderful child and you are a wonderful mom!
    Sending lots of hugs!!

  9. We had “that day” too. Our entire family and extended families were allowed in to say goodbye. The rules were even bent for our 4 year old to meet her sister before she died. I always tell people that doctors don’t have to tell you when they think your child isn’t going to make it. The look on their face says it all. After she pulled through one by one Doctor’s and nurses told us how sure they thought she would die that day and how none of them are exactly sure how she survived. One of the Fellows who watched her rapid decline and amazing recovery admits to being traumatized by it as well. I love the expression on their face when they see her now, a tenacious 16 month old who is trying to walk, talk and do almost everything they said she may never do.

    • Victoria, thank you for sharing your story. You gave me goosebumps when you wrote “…doctors don’t have to tell you when they think your child isn’t going to make it. The look on their face says it all.” So true. The nurses too.

      I love to hear that your daughter is doing beating expectations today. It’s hard to walk out of a NICU not believing in miracles.

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