Jun 19, 2010

The story of how Chris became Sky-Dad

I remember the very first Fathers Day for me pretty much like it happened yesterday. Or was it just one of some 90+ days sitting in the NICU (Neonatal Intensive Care Unit) at Rose hospital where Skyler was born? They all tend to run together, and yet the memories are fresh, if that makes any sense.

Kathy's pregnancy was uneventful, she was, as she is today, in excellent shape. There was nothing to worry about, and she had even had a checkup the day her water broke - 3 months early. She actually didn't realize what was happening, because it wasn't a gush, more of a trickle that just wouldn't stop. I was up in Idaho Springs visiting my parents when she called me. Everyone told her the same thing, call the ambulance. Finally, she agreed and I sped down the mountain to meet her at the hospital.

I was met out in the hall by a doctor Day, who grabbed my arm before I went into Kathy's room, and said "Your wife isn't in any condition to make choices right now, do we try and save this baby or not"? OK, nothing like pressure there, I just kind of nodded and whispered yes.

One simple sentence, or word starts your life down an entirely different path, where you used to think you have it figured out, to the course where you just hold on and hope it all turns out.

They stabilized Kathy, stopped the contractions and kept her on bed rest. She was at 24 weeks and change into her pregnancy. At the time that meant about 30% chance of a live birth. They wanted some more time, as much as they could get before he delivered. The problem with stopping contractions and having little to no amniotic fluid is that at some point you will develop an infection, or cause damage to the baby. It is going to happen, it is just a matter of time.

A 26 weeks and 4 days, Kathy started showing the signs that there was an infection. And that wasn't the time that they wanted, but it was all we got. So she was prepped for a emergency C-Section because a live birth at that small of a size would likely result in death.

You have all seen or experienced what goes on with a birth, lots of coaching, breathing, the general feeling of happy expectation that fills the room? None of that was present in this case. Four doctors surrounded Kathy while she was strapped down in the exact position of Christ on the cross. She was given an epidural that didn't take right, and was rotated back on forth trying to get things to go numb. Meanwhile, in the back of the room was a tiny ICU on wheels known as an isolete, with another team of doctors ready to take Skyler when he came out.

At some point, the four doctors all held out a hand over Kathy, and I thought this is weird. I learned later that they were seeing who had the smallest hand, and that would be the one to reach in and find Skyler to try and extract him the safest way. Skyler was lifted out, looking like a tiny lump of an old man. He had absolutely no fat, just skin and appeared like a chicken in some ways. The isolete team take him immediately and begins chest compressions, a breathing tube is inserted, and another tube is inserted into an artery at the end of the umbilical cord. This is used to administer blood, nutrients, and medicine. It is the only vein available on such a small body.

Skyler is rushed up to the NICU his home for the next 3 months or so. I go with Kathy back to her room to be with her, because the nurse tells me you really don't want to see what has to happen in the first few hours. I am grateful for something to do, even if it is just to sit and hold her hand. The next day we both go to see Skyler as I push Kathy into the NICU in her wheelchair. We look into the isolette and try and make sense of the mass of tubes and wires that seem to obscure him.

Alarms go off at a constant rate as nurses go from bed to bed to take care of the number of different problems that occur in the room. We watch as Skyler's alarm goes off, and a nurse runs over and opens his isolette and raps him on the chest. Even though he is on a respirator, you have to remind him to breath every now and then she says.

He is one pound and fifteen ounces.

The days turn in to weeks, which turn into months. You become accustomed to what alarms are important, and which ones you can just handle yourself. After a couple of weeks, you finally get to hold your son. You get to try and feed him what seems like a ridicules amount of formula, about 2 cc's. But that amount goes up, and progress is made.

Along the way there are setbacks. An infection, a collapsed lung, a surgery to remove an undescended testicle that could cause another infection, and other things that I can't recall right at the moment.

Friends and family stop by to visit, uncertain what to say or do. There is an awkward pause as they try to figure out whether to offer congratulations or condolences.

You make friends with the other parents who are in the same boat as you, and still remain friends to this day. It is somewhat like the friendship you make with a fellow soldier or sailor, somebody you have been to battle with. Nobody else understands, they haven't been there. You rejoice with them when they finally get to leave, and cry with them when they get the dreaded "ethics talk" about how it might be time to stop fighting and let go.

At some point, you even get laid off from your job, and have to try and figure out where you will get the money to pay Cobra. Because the cost of Skyler's care runs about 5000 dollars a day.

There was the day when they told us that his brain ultrasound showed some damage, but not too bad, so we won't know how much he will be affected until he grows up some more.

All those bad days, and even some really good days, but there comes that one day when you go into the NICU and the staff is smiling a bit more at you. Then they tell you it is your day, you have graduated and are ready to leave. Skyler is strong enough for the real world, and it is time for you to take that step away from all of the support and love you have learned to lean on.

And the fun is just beginning.

Thank you Skyler for 19 years of Fathers Days.

26 comments:

  1. I loved this!!! Especially your last sentence because, no matter how hard the road is, the journey is worth it.

    Happy Father's Day, Skyler's Dad!!!

    "There is an awkward pause as they try to figure out whether to offer congratulations or condolences."

    Well said! My parents know this too.

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  2. Wow Chris, I really do love you. My god....you really brought back a lot of things for me when Babyzilla was born at 4 lbs 12 ozs. The NICU & PICU, losing my job, trying not to love her entirely because I wasn't sure if she would make it, the "angel nurses" who answered every call & question, and so much more. But you & Kathy went through more; not even 2 lbs? whoa. God bless you all, and Happy Father's Day mate.

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  3. Chris - your experiences humble me and, you're one helluvan amazing dad! Enjoy your special Sunday with Skyler and Kathy - love to you all.

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  4. incredible story. Have a great Father's Day. You deserve it.

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  5. Wow. Incredibly moving account of what really happens. I am a pediatric CNA and got the pleaseure of caring for infants just like Skylar after they went home. From all the terror and pain of waiting in that hospital to the joy and love you have with each other today. A true gift. Happy Fathers Day!

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  6. Oh man, that experience must've made you 20 years older in an instant. Skyler's a feisty little fighter. Think of all those hot weather girls he'd miss out on if he wasn't. He's a great kid (well, young man now I guess!) and lucky to have you guys as you are him.

    Also, if this story isn't a call for some sort of free health care I don't know what is. %5000 a day to save a child's life? That shouldn't be allowed.

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  7. Dude. Happy Father's Day.

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  8. I cried my way all the way through this one.

    Maybe that's just because I saw Lynnie today--he was thrilled to see me and okay when I left, after spending a little time outdoors on the big swing they have out back.

    Or maybe it's because you're such a great dad.

    Happy Father's Day, Chris.

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  9. Wow. Thank you, Skyler's Dad. xoxox Happy Father's Day!

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  10. Awwww, that's a great story. Thanks for sharing. I hope you had a great Father's Day!

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  11. If anyone can spin a tale to leave me sobbing, it's you, Sky Dad. That was the most moving thing I've read in a long, long time.

    HAPPY FATHER'S DAY! :-)

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  12. Awwww, that was so sweet...you made me cry.

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  13. A day late, but I hope you had a great Father's Day. All the best, my friend!

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  14. Awwww. You are such a great dad and Skyler is so lucky.

    Do you ever read "Jew Eat Yet?" blog? He just went through a similar experience last year with his son Charlie.

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  15. A day late but Happy Fathers day. I can think of nothing to say that could convey the way I feel about this story - touched? I guess would be the best. Rock on man. Rock on.

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  16. Happy Father's Day :) !

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  17. Best. Father's Day post.

    EVERRRRRRRRRR.

    And now I'm crying for the third time in as many days.

    *shakes fist*

    *but not really*

    *bear hug*

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  18. GREAT post! My nephew was born at 24 weeks and looked like a Barbie with a large head. He "died" too many times to count. But he's 8 years old now and just amazing.
    My own twins were 4lbs, but that was NOTHING compared at Skylar and my nephew.
    Wonderful post.

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  19. This was the best post ever!

    I hope you had the best father's day ever and please know you must be so special...Skyler wouldn't have chose you for his dad otherwise.

    You are all so lucky to have each other...

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  20. I Love you on so many levels. You have challenges that still make me shake my head after all these years. You are a tremendous Father a great husband and above all my for mr my brother. And I say onto you "GEEEEE"

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  21. I've said it before and I'll say it again. You deserve the Father of the Century award. Happy Father's Day. Here's to 19 more.

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  22. The tears are still flowing as I write this comment. Sweetpea was only 4 weeks early..5lb 9oz...but the same, no fat, chicken/wrinkled old lady look. No taking her home for a few days. I can't image your fortitude in the months following his birth. Every child is a joy...we just get different shades of joyful moments to capture. You have endeared me to you, Kathy, and of course Skyler...forever!!!

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  23. Okay, did anybody not cry reading that post?

    Happy Father's Day to you. As someone who had to deal with the results of piss-poor parenting as a teacher for 15 years, I truly wish that there'll be a day when you are the gold-standard in parenting. Then we'll have, as the noted parenting expert H.I. McDunnough said in "Raising Arizona," that world where "all parents are strong and wise and capable, and all children are happy and beloved." Bless you for doing your part to bring about that world.

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  24. Thank you all so very much for the kind words!

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  25. Thanks for sharing this. You're a good man. I've often wondered what it must be like to go through something like that, and how much work it must be to raise a child with special needs. I don't know if I could do it. They say the lord won't give you more than you can handle, and there must be some truth to that.

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