Monday, April 14, 2008
Baby Kate - Day 361
It's amazingly almost been a year to the day. Saturday, the 19th will be the "anniversary." Kate turned 40 months on Sunday. What a long strange trip it's been...
A quick recap: my wife (Kris) and I took our almost 2.5 year old daughter to get her tonsils and addenoids removed. She stood on the gurney and waved to us like a little princess.
Next day (morning actually), she was put on a respirator and later in the afternoon, she crashed, twice. Her heart rate was 5 or something. The second time the doctor came out and said he couldn't do anymore and the hospital chaplain showed up.
She spent the next 2 weeks on an oscillator (short quick bursts of air, about 300 per minute because her lungs couldn't handle a normal breathing rate), one week on a ventilator and finally came off of that. She was addicted to pain meds and had to be weaned off via methadone, my 2 year old addict!
Fortunately she made a full recovery. The only lasting scar was on her head; basically, her sat in her own spit for 2 weeks (oscillator, they couldn't move her head as they normally do). She now has a bald spot behind her left ear...she partly on her way to looking like her father! I know she would be OK when I saw this picture:
That gleam in her eye was back.
In August, she walked for the first time, in October, she walked into our bedroom for the first time.
She still doesn't talk, but I can't say I really care. It would be nice to hear her thoughts, but I don't need to, I'm sure I'll get enough of her in the near future.
In January she started school. They have a class for developmentally delayed children, I think it's called Early Learning Progam. She cried the first couple of weeks when Kris dropped her off, but it is less and less frequent now. She now takes the bus to and from school which leaves Kris a few hours to herself finally.
From all indications she is doing very well. She loves other kids (though she may pinch a little too much). We haven't received a negative report.
She's also great at impersonating an 18 month old. We still don't have to pay for her Disney tickets because she doesn't look 3 yet. That's a huge bonus. Which reminds me, she grown 4 inches in the past year (maybe 5?).
She continues to be the source of much joy. She has one of the best demeanors I've ever seen, especially considering all that she's been through. Her smile lights up the room.
Kris has finally agreed to consider [voluntary] surgery. Kate's hands still need a bit of work. After last year, we were perfectly happy with letting her make the decision when she turned 18. We wanted nothing to do with some sort of "voluntary" procedures.
This post feels very disjointed. I apologize for that.
I just wanted to say thank you again to everyone who has supported us. ¶ 4/14/2008 03:43:00 PM 2 Comments Links to this post
A quick recap: my wife (Kris) and I took our almost 2.5 year old daughter to get her tonsils and addenoids removed. She stood on the gurney and waved to us like a little princess.
Next day (morning actually), she was put on a respirator and later in the afternoon, she crashed, twice. Her heart rate was 5 or something. The second time the doctor came out and said he couldn't do anymore and the hospital chaplain showed up.
She spent the next 2 weeks on an oscillator (short quick bursts of air, about 300 per minute because her lungs couldn't handle a normal breathing rate), one week on a ventilator and finally came off of that. She was addicted to pain meds and had to be weaned off via methadone, my 2 year old addict!
Fortunately she made a full recovery. The only lasting scar was on her head; basically, her sat in her own spit for 2 weeks (oscillator, they couldn't move her head as they normally do). She now has a bald spot behind her left ear...she partly on her way to looking like her father! I know she would be OK when I saw this picture:
That gleam in her eye was back.
In August, she walked for the first time, in October, she walked into our bedroom for the first time.
She still doesn't talk, but I can't say I really care. It would be nice to hear her thoughts, but I don't need to, I'm sure I'll get enough of her in the near future.
In January she started school. They have a class for developmentally delayed children, I think it's called Early Learning Progam. She cried the first couple of weeks when Kris dropped her off, but it is less and less frequent now. She now takes the bus to and from school which leaves Kris a few hours to herself finally.
From all indications she is doing very well. She loves other kids (though she may pinch a little too much). We haven't received a negative report.
She's also great at impersonating an 18 month old. We still don't have to pay for her Disney tickets because she doesn't look 3 yet. That's a huge bonus. Which reminds me, she grown 4 inches in the past year (maybe 5?).
She continues to be the source of much joy. She has one of the best demeanors I've ever seen, especially considering all that she's been through. Her smile lights up the room.
Kris has finally agreed to consider [voluntary] surgery. Kate's hands still need a bit of work. After last year, we were perfectly happy with letting her make the decision when she turned 18. We wanted nothing to do with some sort of "voluntary" procedures.
This post feels very disjointed. I apologize for that.
I just wanted to say thank you again to everyone who has supported us. ¶ 4/14/2008 03:43:00 PM 2 Comments Links to this post
Thursday, October 4, 2007
Night of the Walking Kate
Since the birth of Kate in December of 2004, things have been rather difficult. First she had to be rescucitated and when they went to bathe her, we discovered she had syndactyly. While still in the hospital, she had a "seizure" and was sent to a Level 1 NICU (Neo-Natal Intensive Care Unit). She was placed in a phenobarbital coma for essentially six weeks. Lo and behold she was just twitchy, Benign Sleep Myoclonus of Infancy. We almost AMA'd (against medical advice) her because they said she couldn't eat on her own. It's rather difficult when she's only ever been fed through a tube.
With all that, the syndactyly was trivial. She's already had two surgeries to fix one of her hands and she's got at least two more to go.
Earlier this year (April) we went to remove her tonsils and addenoids and put tubes in to prevent the ever present ear infections. She stood on top of the bed waving like a little princess as they wheeled her into the OR.
All went well with the surgery but afterwards it was obvious that she was having trouble breathing. No big deal, we planned on staying overnight. She'd also been diagnosed with asthma, had a bout of RSV and had numerous emergency room visits for her breathing difficulties.
Kris stayed with her and I went home. Around 4:30 in the morning I get a text from Kris, "She's crashing." Then another, "they're bringing in the crash cart!"
I got in the car and raced down to the hospital, not really knowing what to think.
By the time I got there, they had gotten her stabilized. Whew.
Later that afternoon, she coded, twice. The second time the doctor came out and said he had done all he could, that was just before the chaplain showed up...
Somehow she pulled through. We like to say she gave the reaper the finger, Kris suggested it and I thought it was the most appropriate visual. She's a tough little girl.
The next month was spent at the hospital recovering, and recover she did.
This past August, she finally walked:
She's done remarkably well since the surgery, minus the almost dying part. She no longer snores. She gets a cold and doesn't have to go to the hospital. She talks (well, her mother says she does but it's all gibberish to me, I can make out "Daddy" though). In short, wow!
(And finally to the point)
Last night, her brother "snuck" into our bed around 1:30 or so. I told him to go get his pillows because I wasn't sharing. He came back in (throwing the pillows on his mother) and said that Katie was standing at her door.
Me: What?
Me: You're dreaming right?
LC (Little Chet): Nope.
I went to get up and I see this tiny silhouette by the door. It's Kate.
I just started laughing. This was the first time she had ever done such a thing. So the four of us shared the bed last night. LC got kicked a lot by Kate (ah, sweet revenge) and I hardly slept, but it was well worth it. Probably one of my favorite moments of being a Dad.
I'll always remember The Night of the Walking Kate... ¶ 10/04/2007 11:31:00 PM 5 Comments Links to this post
With all that, the syndactyly was trivial. She's already had two surgeries to fix one of her hands and she's got at least two more to go.
Earlier this year (April) we went to remove her tonsils and addenoids and put tubes in to prevent the ever present ear infections. She stood on top of the bed waving like a little princess as they wheeled her into the OR.
All went well with the surgery but afterwards it was obvious that she was having trouble breathing. No big deal, we planned on staying overnight. She'd also been diagnosed with asthma, had a bout of RSV and had numerous emergency room visits for her breathing difficulties.
Kris stayed with her and I went home. Around 4:30 in the morning I get a text from Kris, "She's crashing." Then another, "they're bringing in the crash cart!"
I got in the car and raced down to the hospital, not really knowing what to think.
By the time I got there, they had gotten her stabilized. Whew.
Later that afternoon, she coded, twice. The second time the doctor came out and said he had done all he could, that was just before the chaplain showed up...
Somehow she pulled through. We like to say she gave the reaper the finger, Kris suggested it and I thought it was the most appropriate visual. She's a tough little girl.
The next month was spent at the hospital recovering, and recover she did.
This past August, she finally walked:
She's done remarkably well since the surgery, minus the almost dying part. She no longer snores. She gets a cold and doesn't have to go to the hospital. She talks (well, her mother says she does but it's all gibberish to me, I can make out "Daddy" though). In short, wow!
(And finally to the point)
Last night, her brother "snuck" into our bed around 1:30 or so. I told him to go get his pillows because I wasn't sharing. He came back in (throwing the pillows on his mother) and said that Katie was standing at her door.
Me: What?
Me: You're dreaming right?
LC (Little Chet): Nope.
I went to get up and I see this tiny silhouette by the door. It's Kate.
I just started laughing. This was the first time she had ever done such a thing. So the four of us shared the bed last night. LC got kicked a lot by Kate (ah, sweet revenge) and I hardly slept, but it was well worth it. Probably one of my favorite moments of being a Dad.
I'll always remember The Night of the Walking Kate... ¶ 10/04/2007 11:31:00 PM 5 Comments Links to this post
