Saturday, April 7, 2012

G is for... Genetics

I usually don't get too personal in my blog.. which seems odd to say since I bare my soul through my writing, but the soul that I share in my writing is mine only through creation. My writings are controlled and deliberate. I may not always be satisfied with them and there is usually quite a bit of editing that occurs after something is written, but nothing is included by chance, or by mistake.

That's not always the case in life.

My oldest child is my only daughter. She was born between my first and second years of Law School. My wife and I had been trying to have a child for a little over a year when we found out we were pregnant. I can still remember my Dad's response when we told him.. he was sitting on our couch after having come to visit us over the Thanksgiving break. We'd just gotten the 'positive' response from the test and when we told him he did a little 'yahoo!' cheer and actually caught air from his seated position when he thrust his arm into the air. I'm the youngest in my family, and I think my Dad just wanted to make it long enough to see some of my kids. He died a couple of years ago, but lived long enough to see 4 of my 5 so... that's pretty good.

We named my daughter after the Hawaiian word for "Beautiful," "Kanani". She came a little early that summer and weighed only 4lbs 14 oz, our smallest child by over 2lbs. Immediately she was whisked away from my wife and I because of 'wet lungs'. I followed the nurses with her at my wife's request and made sure she was safe and healthy.  All seemed good, she pinked right up and the nurses said they'd suction out her lungs and get her to us soon, so I went back with my wife who by this time was headed back to our room on the maternity floor. About an hour later we were told that our daughter had been moved to the Neo-Natal ICU.. but that it wasn't a big deal, just those wet lungs. They wanted to put her on some oxygen just to be safe.  It wasn't until about 2 hours later that we first learned of any sort of problem. A medical resident came into our room holding our chart, she started reading it and said the following, which has forever been etched in the recesses of my mind.
"Hiatt... Hiatt.. oh here we are. .. .. .. Oh yes, you're the family with the baby with the really rare birth defect. I've never seen anything like that before. Not sure how they're going to deal with it. I don't even know if there's a surgical procedure that can be done to fix the problem..."
We both melted, and the resident beat a hasty retreat. My wife and I clung to each other sobbing, not sure what to do or how to feel or where to even look.. looking at each other only hurt so we spent the next hour or so staring at the walls. The nurse came in and when she realized what had just happened, swore a very lively phrase about the resident and ran to fetch the pediatric surgeon to talk with us.  That surgeon, who would play a very prominent role in our lives for the next 4-5 years, soothed our fears. He told us our daughter had what was known as a Tracheoesophageal Fistula, that essentially her esophagus and her stomach weren't connected.. the esophagus just ended in a pouch about half way down, and that he saw this sort of thing around a dozen times a year. He said that 20 years ago she probably would have died, but that today the surgery wasn't a really big deal, (not like open heart surgery).. as long as the upper esophagus that she did have was long enough to stretch to the lower esophagus attached to her stomach.. which hers was.

Kanani had her the first operation of her life when she was around 10 hours old, but as would prove to be the case with her.. nothing went as expected. She became the first child ever in the largest Hospital in Boise, ID to have her esophagus perforated by a surgical probe. The tear resulted in an emergency thoracotomy to fix the tear.. and then another 3 days later when it was discovered that the repair had been incomplete and there was still a small hole that was leaking saliva and causing a massive infection in her chest cavity.

Kanani at 3, on her way to pre-school
The surgery and subsequent operations were painful and she suffered quite a bit for a newborn, 3 major operations plus nasty chemical burns where her vein collapsed but the NICU nurses didn't notice and the calcium they were giving her intravenously gave her 3rd degree burns on her legs.. but ultimately after about a month in the NICU, she was able to leave with us to go back to law school. All we had to do was learn to fish a NG-tube down her nose to feed her.  So that's how we left, we were discharged and drove immediately 300 miles north to the middle of nowhere (From Boise ID to Moscow ID) so I could start my second of three years of law school the next day.

We thought we were done.. that Kanani would learn to eat by mouth quickly, and that she was, after all of the drama, on her way to being 100% healthy. We'd had a bump in the road, but nothing we couldn't handle...

... oh how young and naive we were.

(To be continued with the letter 'H is for... Heart')









11 comments:

  1. Oh my. And I thought giving birth to my preemie who spent her first 3 weeks in neonatal intensive care was hard enough. I can't imagine how difficult that time must have been for you and your wife. But the picture of Kanani is adorable and I'm glad to see she's okay now.

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  2. Wow, what a dreadful experience for your family to go through, but it sounds like your little one is a real fighter.

    I stopped by on a quick A-Z fly-by, and read some of your other posts, as well as this one. Some good stuff here. Count me in as your newest follower. Good luck with the rest of the Challenge.

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  3. Oh Wow - how brave you have all been, she's a lovely girl.

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  4. Bless your sweet family. Really opens your eyes, doesn't it? So much hurt to watch these little ones suffer... And SO HARD as a parent! You're one special family. So I'm curious if she's your only girl if it's a genetic thing passed only through females? Prob not, but if so, good thing the rest were boys. I'm sure you were scared with your other kids having the same defect... Thanks for sharing, Kevin :)

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  5. Oh, I'm so sorry for her health problems. You write with such intense details. I will be back to read more. Thanks for sharing the picture and her story.

    Play off the Page

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  6. I was wondering what would be the next genetic evolution of the man. Is that possible?
    Do check out my G at GAC a-z.

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  7. I flew through this. My God, what you have all gone through. I will be back to read more.

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  8. Wow Kevin, you and your family have gone through so much, my thoughts are with you!

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  9. By sharing the personal, you have made me want to come back here...often. I love your blog and will be a follower, for sure. So glad to have found you on the A-Z.

    What an amazing and beautiful little girl, and by the sounds of it, an incredible family. Bless you in your continued journey and your endeavors.

    www.hammockinthehoneysuckle.blogspot.com

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  10. Talk about hard times! But I can tell you are all fighters.

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  11. Wow, that's hard. As a former quality assurance guy for a medical transcription company, I am aware of what the disease is.

    I noticed in my review of resident dictations that the residents were either the most careful (perhaps 10%), or arrogant doctors who mumbled through the audio file in a cold manner.

    I am hoping your lovely daughter is 100% well by the time I get through your A to Z challenge.

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