Original Text of an E-mail from Douglas to Family/Friends
My lovely daughter is two weeks old today. When we first engaged hospice our first questions were about their experience with children with Trisomy 18. Most specifically, how much time did they see people getting. Many did not make it home, so hospice was only involved to assist with grieving. Few had lived hours, very few lived weeks, only two lived months. None lived to a year. Kim’s doctor had never had a baby with Trisomy 18 survive birth. Both of the hospice nurses, the hospice social worker, and even the nurses at the hospital though said this: The time you get seems too often come in twos, if you get an hour you’ll probably get two… if you get a day you’ll probably get two, etc. We held our breath for the first minute, and we got two. We prayed through the first hour, and were granted another. We cried through the first day, and were blessed with two, then 7, then 14.
Kim and I see things differently… Kim feels that Alex is getting weaker, but I tend to feel she’s getting stronger. It’s only when I give her a bath and she doesn’t have a cocoon of diaper/pajamas/blankets that I see her frailty. I have found throughout our relationship that Kim and I are each other’s compliments. We balance each other out well, and we help each other see things the other doesn’t… we focus from different perspectives.
Hospice came by today and what we believed to be labored breathing does not appear to be labored to our nurse. She feels Alexandria is breathing more deeply, and it’s just the fact of her small size (and how her whole body is involved in the breaths now) that make it appear that way. That’s a good thing. She also gave us guidelines for her vitals and appearance so that we can be sure if she’s having an episode when the monitor alerts go off.
We’re collectively taking a breath now. Many people have expressed concern that Kim and I can’t keep up the pace we’ve been. My cousin summed it up nicely when he said “you may very well be in a marathon not a sprint”. We know we can’t keep up the schedules we have, but it’s just so hard to put her down. We don’t want to miss a minute.