Alexandria's Journey

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.

Alexandria 14 Days Old

Harry and Alexandria

Original Text of an E-mail from Douglas to Family/Friends

Today was a fairly quiet day.  Alexandria had a good morning, no episodes and she had a good night as well.  Things were stable enough that I actually went into the office in the afternoon for a few hours.  I am taking a partial FMLA leave from work, which means I can be at home when needed and also work a few hours here and there.  This allows me to spread my FMLA days out so when she does not have stable days I can stay home without worrying about losing my job.  It was not easy to leave the house, it was the longest time I was away from her since her birth.    Everyone at work has been very supportive.

Harry and Gretta arrived and helped us throughout the day.  After they arrived at noon is when I headed into the office, so Kim always had back-up support here.  Gabriel and Ethan were especially interested in her today, as the picture below shows.  Gabriel knows to be very gentle, Ethan, not so much… so we keep him at a distance.

Gabriel showing Alexandria her Snoopy with Ethan watching

Alexandria (10 days old)

Original Text of an E-mail from Douglas to Family/Friends

Alex had a good night, no major episodes and the day was fairly uneventful.   She did have one minor respiratory issue in the morning, but it only lasted a few minutes.  She drank well when she got up, but then wasn’t as hungry as the day went on.  A few people have sent notes about what “a lot” means and we have heard that one good nurse was worried she maybe was eating too much. J  “A lot” means she’s drinking 20ml (or a little more than a Tablespoon) in a few hours.  There are times when she won’t eat for 6 hours, then only drink 5ml, then maybe 10 a half hour later.  We’ve learned her signs for “enough” and are careful to make sure she doesn’t get enough so that she’d aspirate what she drinks.

We had almost everyone here on Monday, Mom and Dad Bash, Michael/Lisa and the twins, Bonnie, and Marybeth/Bob/Robby/Meghan (Henrys).  It was good to have everyone here, to see her, hold her, and share her life with us.   Mom, Dad, Bonnie and the Henry’s headed back before it got dark.

Michael and family will head home tomorrow.  I got the feeling that they were a little worried that the twins were stressful for us, but not at all.  Their kids were great and helped keep Gabriel and Ethan busy and happy.  I just hope the craziness wasn’t too much for them. 🙂

Hospice called this morning and we’ll have a visit with our social worker tomorrow and our nurse on Friday.

Alexandria and her cousin Meghan

Original Text of an E-mail from Douglas to Family/Friends

Dr. B called and came by around 10am this morning.  He looked her over and asked if her jaundice was getting worse, which it isn’t.  He couldn’t hear any murmur associated with patent ductus arteriosus and believes it’s possible that this may not be an issue later.  This was something the hospital and hospice staff believed would cause her cardiac and respiratory issues to return.  When asked if he though those episodes would return anyway, he said yes.  He believes that whether caused by her heart, her lungs, liver, kidneys, etc, one way or another they’ll return.  He re-iterated the same point everyone else does, that the condition effects every system of the body and it’s never in a good way.  He’s a very good doctor and a has said he doesn’t see any reason to bring her into the office and expose her to any other sick kids, that he’ll do anything he can to help, run any tests we need, come to the house when needed, etc.  Great man.

I find it difficult to accept that she can live as she is now, she sleeps, she looks around, poops, stealth-pees, cries… everything other kids do, but her body is struggling to balance itself in ways other invisible ways just to stay here.  Struggling enough that eventually it won’t be able to compensate anymore, her condition will deteriorate, and she’ll leave. She seems and feels so “ok” to the naked eye right now.

She only had one episode today, and it wasn’t a severe one, very minor.  It’s a reminder of the struggle I guess.  When we talked with Jessica yesterday she mentioned that some of the other couples she’d worked with didn’t experience episodes while they were in the hospital.  They took their children home and only after a while began to have episodes at the very end.  It upset me greatly when she had them in the hospital, but I think it’s prepared us for what is to come.  Some couples didn’t get a glimpse, a warning, any preparation.  I may not feel it now, but in time I think it will have helped us.

Alex has her days and nights mixed up.  She spent all day today asleep in our arms, but tonight she’s a bit more active.  She’s a night-time party girl, something I was always warned my daughter would probably be.  🙂

Merry Christmas everyone, God bless you and have safe travels.