Dec 312011

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

Alexandria 14 Days Old

Harry and Alexandria (14d)

Harry and Alexandria


 Posted by on December 31, 2011 at 11:54 pm
Dec 302011

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

Alexandria had a fantastic night…  Dad didn’t.  About 3am my body said, “Ok, this is enough already, ya’ll are done!”  I haven’t been taking the medications for my back so that I’m not sleepy and have occasionally been having increasingly worse symptom’s related to the disc in my neck (arms tingly, pain spiking down them, numbing, but nothing serious).  So around 3am my legs were on fire with radiating pain… I hadn’t felt that since I aggravated my neck in a fall a few years ago.  I guess 13 days is my  limit.  I woke Kim up and asked her to take Alex.  I was able to get 4 hours of sleep lying flat and when I woke up the pain was gone.  I got up and took over for Kim around 7am.  Pastor came by around 11 to pray with us and check on how we were doing.  Aden and Gabriel decided to put on a show for him by running around in circles.  Gabriel continues to interrogate pastor about his IPAD, he just can’t get over the fun factor of “swishing” pictures on a screen.  Alexandria didn’t have an episodes this morning, although her breathing had seem a little labored.  Things went well enough that I went into work around noon.

A little after 1pm Kim called me at work to tell me that Alexandria had an episode, but that she didn’t want me to come home.  She called again at 3pm after a worse episode and I left work immediately to come home.  Alex’s breathing is definitely labored today.

Gabriel asked why Alexandria was going to die today. He asked question after question about why she was sick, why she was going to die, why was she made differently, etc. We did our best to answer them. It’s clearly still on his mind. We have a few books but they don’t seem to convey our situation. I think Kim and I may need to write one ourselves.

Harry and Gretta are going to take Aden and Gabriel back to Midland with them for the weekend tomorrow morning.

Kimberly and Alexandria

Kimberly and Alexandria (13d old)

 Posted by on December 30, 2011 at 12:20 am
Dec 292011

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.

Ethan, Gabriel, and Alexandria

Gabriel showing Alexandria her Snoopy with Ethan watching

 Posted by on December 29, 2011 at 11:30 pm
Dec 282011

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

Alexandria and I had a long night.  She had one episode which was rough enough I called Kim.  When I say “called Kim” mean that literally.  She sleeps upstairs in our bed and since I insulated the interior walls you can’t hear anything between floors for the most part, at least not enough to wake you up.  We keep a cell phone on the bed upstairs and the house line by the chair (where we sit holding Alexandria during the night) so that should something happen we can literally call each other.  She had a cardiac/respiratory episode which lasted about 15 minutes.  Later that night she had another “odd” cardiac episode where her heart rate began to jump, down to 20, then back up to the 80s, back to 130, back down to 20, back to 130, then 50… it was all over the place.  Alex’s demeanor wasn’t changing either, her respiratory seemed fine, her pulse (just from an observational standpoint) didn’t seem that erratic.  I asked Kim to get my stethoscope (was my mothers, she was a nurse) and I listened to her heart.  She was hammering them out at a normal 130 bpm pace.  Upon inspection the sensors on her body had been moved (probably when I changed her 20 minutes prior).  Panic averted.

Dawn from hospice came by today.  I voiced again how she seems to be doing so well, so much better than when she was in the hospital.  She’s eating, she’s processing food well, etc.  She’s very good at bringing things back home.  She did so by explaining that although Alex is seemingly doing well now, she’s also growing.  Her organs are seemly working well now, but as she grows that may change.  I hadn’t even considered that.  I’m sure that’s what Dr. B was talking about as well, but it never occurred to me that as she grows her body will have trouble keeping up.

 Posted by on December 28, 2011 at 6:06 pm
Dec 282011
Alexandria (10 days old)

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

Alexandria and her cousin Meghan


 Posted by on December 28, 2011 at 11:53 am
Dec 262011
Little Lambs Board

This is the little lambs board at church, each child under 3 baptized has a lamb.

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

Alexandria had a pretty good night last night with me, she was up a lot, so her days and nights are definitely mixed up.  Everyone else woke up around 7:30 or so and took Alexandria so I could sneak in a nap before the 10am service.  We held off opening an presents and got to church a little  late after wrangling the 6 kids (our 4 and Michael & Lisa’s 2) together.     We re-affirmed Alexandria’s baptism in front of the church and she wore her Christening Dress that Kimberly bought for her.  She looked beautiful. 🙂   A great moment for us as a family.  When we got home we took a picture of the whole family, all 6 of us in front of the tree.  It was bitter sweet to get a family picture in front of the tree and know it will probably never look as complete in the years to come.  We ate lunch, put everyone down for a nap (including me), and ended up opening presents around 4pm.   After an incredible turkey dinner that Kim put together, got the kids to bed for the evening and relaxed with Michael and Lisa and a movie.

Alexandria's Lamb

Alexandria's Lamb

Alex had a little more difficulty maintaining her blood oxygenation yesterday (Christmas Day).  A normal oxygenation level is 95-100%, below 90% is considered low.  Alexandria’s pulsox monitor is set to alarm when she goes below 75%.  Sometimes this just happens when we move her and the sensor gets confused temporarily.  She went below 75% for a few moments here and there yesterday.  When I describe her as having “an episode” it means that she’s dropped below 60% and remained there for some time (usually several minutes, sometimes much longer).  When we were in the hospital she had many episodes where he oxygenation was below 15% and her heart rate, which is normally around 135 bpm was below 30 bpm, some that lasted between 30 minutes to an hour.  In reality she would be so close to death and then her body would “reset” and come back.

When my mother was in hospice, in her last days, I stayed with her for 10 days before she passed.  In those 10 days we were able to talk and have some final closure about things between us over the years.  We said what needed to be said.  We had our first communion together.  In our conversations there were hints that she felt guilty about dying, about not being able to be here with us and Aden.  I always dissuaded those comments, made sure to communicate that it was not her fault, but in private I begged God to heal her.     When Alex would start an episode at the hospital I was right back there, feeling the feelings I had holding my mother in my arms while she died.  The only difference was I couldn’t be quiet.  When Alex would turn blue and come so close to passing, I begged her not to go,  I begged her to stay.  I feel a little guilty about that.  I don’t want to prolong her stay if she’s uncomfortable, but I just couldn’t take her leaving then….  I need more time.  But I’ve often wondered if I begged mom to stay if we’d have had a few more days.

I’m never going to have enough days.

Vogt Family Christmas 2011

Vogt Family Christmas 2011


 Posted by on December 26, 2011 at 12:04 pm
Dec 252011

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.

 Posted by on December 25, 2011 at 3:16 am