Friday, January 30, 2009

Please Pray!

I received this letter from a dear friend this morning regarding the loss of her 6 1/2 year old daughter, Keren, earlier this week. It's long, but it's definitely worth reading. Please join me in praying for her and her family. Keren was a very special little girl and will be greatly missed.

Dear Friends and Family,

I have been wanting to write an update about a year now.... To update you with all of our great news of the year starting with last February when we moved into our new home. Life being what it is, though, VERY status quo, busy, and full of joy, I've not taken the time to write. Our three girls have been growing like weeds. The younger girls, Clare and Evvie (3 1/2 years and 22 months) have been keeping Kraig and me on our toes with everything they've been learning (and testing us with!).

Keren (6 1/4 years, Trisomy 18) has been growing so much physically and in every area. She's been thriving at school, and losing her baby teeth like mad (and getting some new ones). Driving us crazy with some silly self-stimulations like poking her eye or gouging her gums, but for the most part full of huge hugs and squeezes, accompanied by laughs, squeals and sloppy kisses. ...And we've been gearing up to announce to everyone our crazy, happy news that we're about 13 weeks into expecting number four!!!

And then Wednesday of this week, January 28, the unthinkable, unbelievable happened: We lost our Keren-girl....

She'd come down with one of her typical bug/colds Sunday--fever with some congestion. Her norm with a "bad" one is that she'll have the fever and cold for a few days, then it turns into sinusitis of an infection of that sort, she goes on antibiotics, end of story. I guess God had different plans this time. Her fever was manageable, but constant from Sunday on, but though the congestion seemed to clear up Monday Keren kind of slept non-stop Monday-on. That was a bit strange. I talked with the doctor's office Tuesday afternoon (third day in) and the nurse and I agreed that since the fever was controlled by meds, we'd just set up an appointment for Wednesday and bring her in if the fever hadn't broken.

Wednesday morning I got Keren up from bed to get a bath and as I washed her, I noticed her breathing change--really labored and awful, almost obstructing, but she wouldn't cough anything up (very unusual for her....). I quickly got her back into bed with her cpap/sleep apnea machine, and that improved her color, but she was still just breathing through her mouth (had been doing that). Called the doc's office and they said, yes, bring her in now, but if anything changed to take her immediately to emergency. My sister was able to get over within ten minutes to watch the younger girls, so I packed Keren up, along with her cpap (we have a power inverter in the car) and took off.

Wednesday here was one of our snowy days--it was going like fury (of course). I quick called my OB's office to cancel what was to be my 12 week appointment that morning, and canceled one other appt. Keren was to have. Throughout, I could hear Keren's labored breathing. We were less than a mile from home when I realized that I didn't here her any more. I got off the road, and got to her, and she was completely unresponsive. My brain was frozen--I could hardly think enough to figure out if she had a pulse, and I didn't want to take the time. I just laid her down on the floor, hoping she'd breathe better that way, turned the car toward our nearby urgent care and called 911.

They had paramedics meet up with us before we got to urgent care. Amazingly swift. After a few minutes of working on her in the ambulance, they told me which hospital they were taking her to. I had the choice of going with her or driving myself, and I chose to drive. Isn't it strange. It's one of those choices that I think is probably vastly different for each of us. I think I knew I'd be in the way in ambulance, that I needed space to think, pray, call Kraig, etc. I wonder now if it was mostly because that strange, unresponsive little girl they had taken from my car was NOT my Keren. I think my Keren was already gone...

As I drove to the hospital (don't worry, I was a good girl and didn't try to keep up with the ambulance....), I kept praying, "Lord, please don't let this be it," but at the same time I had an unshakeable peace that if this WAS it, God was with us and Keren, and had us in His hand.

When I got to the hospital, the doctor and nurses were with me in minutes. They explained that they had been administering CPR, meds, and ventilator on Keren for a full hour by that point (can an hour be so fast?), and she had not responded once. The diagnosis was a respiratory arrest, that went into cardiac arrest. I was basically faced with the words, "Within minutes we need to stop. There's nothing more we can do...." Tried to process it all--even asked point-blank if any of this would be different if she wasn't trisomy. They hadn't even had her medical history as they worked on her.

I called Kraig and he was already on the road from work, and my brother-in-law was there right as they took me to Keren. My bro-in-law has done EMS work, and got to talk to the EMS workers right there, confirming for us that they had done all they could.

So that's it. I got to weep on my girl. Kraig arrived, then more family and close friends, pastor from church, were all there with their arms around us. It's been like that since. We came home to more food already than we could imagine at the house, with my sister and close family friends doing laundry and running herd on our little girls.

Two of Kraig's three siblings are right here in town, and were over most of the day. Amazingly, Kraig's dad is here this week from his work overseas, and my youngest sister is home from grad school out east. My other sis and her husband were supposed to be in Maryland by now for a new job, but the process has been slower than expected, so they're still here.

My parents had just left on vacation Sunday, and flew back immediately, and Kraig's mom is flying in from overseas. His other brother and family arrive in the morning. Our church, within hours, had set-up a meals and child-care coordinator, and the love has been overflowing. The hardest phone call that I wanted to make myself was to Keren's teacher to let them know.... Oh, that was awful. I think that's one of the hardest things--letting all those who have known and loved Keren know that she's gone....

I'm in process mode, or something like that at the moment. I'm finding I want to just keep moving and planning, and talking the whole thing through. I'm letting the emotions come when they come, and avoiding the "what if" game with a vengeance.... Keren's pediatrician called us Wednesday night, and it was so reassuring to talk it through with him and here him say we had done everything that could have been done, and what would we have done differently?

I slept horribly Wednesday night--not surprising. I was doing much better tonight, but Ev was crying since she crawled our of her covers, and after I tucked her in, my brain wouldn't shut off. I've been wanting to write all this down, and now seemed ideal.... Kraig's hanging in there. Keren was so much her girl--he's been wrapped around her finger since she first grasped his in the NICU six years ago....

The little girls are coping in their ways. Evelyn isn't too phased, but the first night she kept pointing at Keren's bed going "Sissy! Sissy!" Finally I put her on the bed, and she immediately grabbed Keren's pillow and crawled under the sheets. That's where she wanted to sleep.

Clare has been going through the round of emotions. I can't imagine how hard it must be for a 3 1/2 year old to process this. Keren has always been in her life.... On the one hand, Clare is thrilled that Keren can now walk, and talk, and have her new house with Jesus (a concept that we've built on a lot since we moved into our new house a year ago. It connected with a Bible story we read about Jesus making a new home for us in heaven, and when it's ready, he calls us there.

That's made a lot of sense to Clare, though she often has said, "But I don't want to die! I like THIS house." Can't argue with that logic!). On the other hand, she hits those awful moments where she breaks down and wants to know when Sissy will be home, and says, "But I want TWO sisters!" Oh, I couldn't agree more....

Phew, sorry, this is a long one. I know many of you have heard this news via my family or through church, and my mom has written some incredible stuff, but I had to write and share with her. I know there are so many questions. The hardest thing for Kraig right now is, "God was using Keren to touch SO many lives.... Why does it have to stop now? What about all the people who have never met her?"

I will REALLY try to keep you posted. Please feel free to write or call--ask any questions you want. Please DON'T walk on eggshells! It helps us to talk. I can't tell you how much your prayers and support have been to us over these past six years.....

Much Love,Loren for Kraig, Keren Elyse (T18, 9/27/02~1/28/09), Clarissa Joanne (7/17/05), Evelyn Ruth (4/26/07) and baby due (EDD 8/6/09)


Terri Lynn Brearey / Founder & CEO said...

I received a Goggle notice about your Blog this morning. I can barely type this back to you as my hands are shacking and my eyes are watering. This touches such a spot in my heart. I do not know the whole story of your friend, but I have gone through the whole thing of the sleep apnea and the respiratory issues. We almost lost our son at 5 weeks. I picked him up and he just stopped breathing. My heart and prayers go out to them. I would love to talk to someone. Sometimes it just helps the process. Here is my email if you would like to contact me I started an awareness foundation to bring awareness and education on sleep apnea and pulmonary issues. I am just so heart broken over this, when I hear a story like this it makes me want to push on harder everyday. Thank you for sharing your story, I hope to hear from you. Until then may god keep you and your family safe

Sarah said...

I will be praying. It is so hard to loose a child. It is encouraging to know that they know God and can receive peace and strength from Him. I remember When my little nephew, Casey passed away. He was 11 years old and also had disabilities. He got a fever and wasn't feeling well, then passed away at home. It takes awhile to realize that they are gone. It is comforting to know that they are with Jesus and no longer have to struggle in this world though. I'll be praying. Thanks for sharing their letter.

Megan said...

I've been thinking and praying for this family since I received your note on Facebook earlier this week. My heart breaks for them and tears stream down my face as I read this letter.
One thing that struck me was near the end when she said, "Keren has been reaching so many lives...why does it have to end." I just immediately thought that even through her death she is reaching so many more. I will continue to pray for this family.