Alexandria's Journey

Aden and Alexandria

(This was partially written the morning of her 50th day while Alexandria slept on Kim, and partially in the middle of the night after her passing)

With Alexandria’s episodes becoming more pronounced I knew it would be difficult for us to handle Gabriel and Ethan during those episodes.  I took them over to Amber and Joy’s house across the street so they could play with Ellery and Emerson until Harry and Gretta got here.  They have been such good friends and we’re very blessed to have friends that close.  Aden came home from school shortley after, but we kept him home because he’s fairly self-sufficient in his “after school” pattern.

Douglas and Alexandria

After a few rough episodes we decided it would be good to let Aden and Gabriel hold her again.  I gave Aden the opportunity to hold her and he was thrilled, but decided on his own that he was done.  I went over and got Gabriel, brought him home so he could hold her, and then took him back to Amber and Joy’s.

I picked them up around 6:30pm or so, got Aden some dinner, then put all three of them to bed.

Gabriel and Alexandria

Gretta and Harry arrived shortley before 6pm and they held Alexandria for a while, and stayed up with us late while Alexandria had several episodes.  They seemed painful to me, her breathing would slow, her heart would slow, and she’d snap back.  When she snapped back she’d cry…  and I just couldn’t take that.  I did not want her last moments to be in pain like this.  I had forgotten how heart wrenching the episodes in the hospital were…  I called hospice and I asked them if we could increase her morphine dossage, and after speaking with Dr. B they gave us new instructions to help keep her comfortable.  There was one point near 11pm where we were sure she was leaving, called hospice to have Jessica come out, but she snapped back and we cancelled having Jessica come out.

Harry and Alexandria

Aden and Alexandria

Gretta and Alexandria

(Wrote this during the morning of the 4th, while Alexandria had an hour long stable run sleeping on Kim)

Uncle Bill and Alexandria

The night of the 2nd was a pretty rough night and we had to give Alexandria morphine regularly for comfort.  Late in the day yesterday my Aunt San told me that my Uncle Bill and Cousin Mary and her children were driving up from Alexandria.  They drove through the night and arrived around 10m.  It was great to see them, Gabriel loves playing with his cousins William, Army, and Blake.  The four of them are a rambucious group, it was funny how their energy just seemed to feed each other into a frensy.  Gabriel brought up his baby (Monkey stuffed animal) that wasn’t going to die, that was going to stay with us.  He continues to try and process what’s going on…

Mary, Alexandria, Blake

Mary and Alexandria

Alexandria on her first international Skype call to Cousin Reid overseas

My cousin Reid, Mary’s husband, could not come with them because he’s on assignment overseas.  Mary had the great idea of Skyping him and Alexandria had her first internetational live conference call. 🙂  Didn’t think about putting that on her bucket list, but damn glad we did it.  It was good to see Reid and give him the opportunity to meet Alexandria.

Mary and Alexandria

Jessica (hospice nurse) called after lunch and we asked her to come out.  Alexandria had been having gas pains all evening and all morning and it was really beginning to be a problem for her.  We wanted to talk about changing her formula, and some of her feeding problems, along with the mini-apnea episodes we’d seen.  She let us know that the gas problems were common, especially at this stage, and were more then likely caused by her body not getting the circulation it needed to her digestive system.  Her body just couldn’t process the food in large quantities any longer, which was another reason she wasn’t eating.  It was part of the process of her body shutting down.  That was difficult to hear, but with the other signs we see it was clear that was happening.  We decided against putting in a feeding tube, because it would make her considerably uncomfortable, and since her body wouldn’t be able to process the food it would cause more problems then it solved.  She was hydrated, so her body was able to process enough to sustain her, but only a very small amount was what she needs now.  We began using a siringe to drop small drops of formula in her mouth every now and then to keep her hydrated.

Douglas holding Alexandria while Jessica checks her heart

I asked Jessica, with what she saw, if she felt Alexandria still had days.  She just frowned and shook her head.  I knew she was right, I didn’t think she did either.  I asked only in hopes of being wrong.

As the day progressed her episodes began to get more frequent, and slightly worse dips.  Mary and Uncle Bill saw her turn light purple once and were shocked at the transformation, and how quickly she pinked up after it was done.  It was the first time we’ve seen color change in her face of that maginitute in weeks.  Shortly before 4pm I called Alexandria’s grandparents and told them it was time to come and say goodbye, that we did not think she’d live through the weekend and perhaps not even the night.

Army and Blake looking at Alexandria, held by Mary

Although they had driven all night to see her, Uncle Bill, Mary, and family had to return the same day.  🙁  We were sad to see them go, but were absolutely thrilled that they were able to come and meet her.  Before leaving Mary prayed with us over Alexandra while she held her….  I hope she knows how incredibly comforting her words were.  Afterwards she said, “I can see what you mean now, about her being perfect, I get it now, she doesn’t even seem sick, and she’s just beautiful and perfect.”  Amid tears and farewells they left around quarter to 4.

Kim, Alexandria, Army, William, Gabriel, Blake, Mary, Ethan

My Uncle Bill is a wood worker, among many other trades and hobbies.  He’s one of the main reasons I took up woodworking, although he probably doesn’t know that.  He knew that I had built her casket and wanted to see it before he left.  He told me it was beautiful work, which was nice to hear.  He also thought Gretta did a fantastic job on the inside and told me to tell her so.

They left amid tears and we turned out attention to Gabriel and Ethan…

Gabriel, Kimberly, Alexandria, Douglas, Ethan

Before bed last night, as I was leaving after tucking Gabriel in, he said, “wait wait wait, I need to talk to you about baby Alex!!!”.  I laid down next to him for a while and answered his questions.

“How did it happen?”

“I don’t know, but it did and we just need to love her while she’s here.”

“Why is her heart swooshing the wrong way?”  (thining to myself, WOW, that boy has ears… glad we’re treading lightly as we talk to other people near him)

“Well, I don’t know why her heart started swooshing the wrong way, but that won’t happen to you, me, momma, or your brothers.”

“You were crying about baby Alex.”

“Yes, I cry because I am going to miss her, and I am very sad that she is going to die.”

“I am very sad too.”

“I know, and that’s ok, it’s ok to be sad.’

—–

Alexandria was up a few times during the night.  We gave her morphine a few times to calm her down, keep her comfortable.  for a good part of the night her heart stayed in the mid-90 bpms (130 is normal).  She’s hovering around 100, 102 right now, but her color is a little better then it was last night…. still very weak.  Her cough, when she has the energy to cough, sounds horrible.  My cold feels like it’s moving into my lungs, I’m about a day behind her so I wonder if that’s what she’s feeling.  She’s sleeping peacefully on my chest at the moment.  I fell asleep in the chair with her after Aden got on the bus and awoke to see Gabriel laying on the couch with his monkey stuff animal in much the same position that Alexandria was on my chest.  He told me, “This is my baby, she’s very fragile.  She’s got some hurts, but they healing.  She’s not gonna die, baby Alex is going to die but not my baby.”  He’s walking around with Monkey this morning, explaining how fragile he is, where his ouchies are.  He began to tell us how his baby had already died, but got better.  Kim and I had a conversation with him explaining that you only die once and that it’s permanent.  It’s a conversation we’ve had before with him, but he needs gentle reminders to help him grasp the concept.  We’re being very careful with him, very delecate.

Every now and then Alexandria will wake up, open her eyes, and be perfect lucid. She’ll look around, and act like she doesn’t have a care in the world… these are the moments I think to myself, “She’s fine, she seems just fine.” She had a moment like that last night, around 10pm. Kim was holding her and I grabbed my camera to take some video. She had such a bad day yesterday, then for a few brief moments at night was perfectly happy.

It did not last though.  For the better part of today Alexandria did not have a good day.  She was pale, congested, and unhappy.  Dr. B, Alexandria’s pediatrician, called the house around 6:30pm this evening and told Kim, “I don’t know why but something just kept telling me I had to call today.”    He said he’d thought about her all day and had to call.  We talked briefly and he decided to come by the house and arrived around 7pm.  Again, a doctor that makes house calls, and at 7pm, what a fantastic blessing.  He listened to her heart and he heard the same murmur that Jessica (hospice nurse) and I have both heard.  He said there was no mistaking that her heart was not operating in the same way it was a few weeks prior.  When I listen to it the swoosh sound is overwhelming, almost to the point of drowning out the beats.  He checked her skin/feet and as we feared her circulation is not good.  He did feel that she was fighting the cold off better then he thought she would be, even though she’s very congested.

Kim and I have had many talks about what we would do if her heart became a problem.  Do we have surgery or not…  In the end we’ve decided we don’t want to put her through the pain of open heart surgery, and we do not want to risk her dying alone on an operating table cut open.  But, I did ask what he thought was possible, could surgery fix the problem, what would her chances be.  With her apnea, which is a brain centered apnea (her brain forgets to tell her body to breathe) and not a mechanical type of apnea, her other trisomy 18 related conditions, he does not believe she’d survive surgery.  He also wouldn’t put her through that pain, which he has seen children go through before, and it is very painful surgery.  It was good to hear from someone else, a professional, that Kim and I seemed to be making the right choices.

It is such a horrible feeling to fear you aren’t doing enough for your child.  Sometimes I think, “My God how can I think of not trying to fix this to help her live longer.”  To make this choice and pray you can live with it.  To pray that I’m doing the right thing, choosing for her to live warm, loved, and surrounded by family, without feeling that I’m choosing for her to die.  That I am sentencing her to death.  When my mother was in hospice, a few days before she passed, she began to forget what was happening.  One afternoon I had gone into another room to fall apart in private and my sister came in and said, “Mom has woken up and she’s asking what’s going on.”  I had to pull myself together, go back to her bedside calmly and explain to her that she was dying.  Why she was dying.  What decisions she’d made about her medical care.  Comfort her and help her understand reality.  I cannot do that this time.  I have no way to explain to Alexandria what’s happening to her, why it’s happening to her.  I hold her and I can’t keep it together.  I try so hard to comfort her, but there’s no way for me to help her understand…. hell I don’t understand.  I want to know I’m doing the right thing.  I want my little girl to believe I’m making the right choices.  I am so afraid that she won’t understand, that she’ll think, “why didn’t you do more daddy?”  I am overwhelmed with fear, pain, and guilt.

People tell me I should sleep.  If you watch that video, you’ll understand why I don’t.  I’m not going to get many moments like that.  Moments I can look her in the eyes, while she’s awake, tell her I love her, tell her I’m trying to do right, and ask her not to go.  Who’d ever want to chance missing those moments?

Alexandria continues to fight her cold.  I was certain on Saturday that she was winning and getting better, her color was better, she was breathing better, etc.  However, yesterday her color was very gray for a good part of the day and she was weak.  She started coughing late last night and this morning (3-4am) she’s coughing a lot more.  Beginning around 3 she was very wide eyed, coughing right when she woke up, but peaceful for the most part.  She has the most beautiful eyes.

Aden and Gabriel returned home from grandma and grandpa’s house last night.  Gabriel came over to Alexandria just before bed to “pet” her, and as I was getting Ethan to bed he came in to hug him.  He’s a very loving kid, such a large and open heart.  I am so afraid of how this experience will affect him, but am hopeful God will continue to hold his heart open through and beyond this experience.

I’ve been reading more and more stories of families that have children with Trisomy 18 that are surviving/thriving even after their 1st birthday.  I realize that the statistics are against us, but we’ve never been one to follow the bell curve…  I asked Kim tonight when will we decide that she’s not dying, but living… when will we decide she’s not in hospice any longer.  I almost feel manic at times.  I have moments of pure clarity that she’s going to be fine, like now, after seeing her fight so well against this cold and look at me with those huge blue eyes.  It’s almost like she’s telling me, “I’m not going anywhere dad, you can go to sleep, I’m fine.”  Then there are moments, similar to 24 hours ago when she’s breathing shallow, grey, that I am convinced she really is leaving sometime soon.  Extreme highs of love and joy, holding her, spending time with her are coupled with devastating lows… you can feel your heart tear a bit.  The stress that goes with those swings is palatable, tiring.

I know that families, marriages, can be destroyed by situations like this.  Kimberly and I know quite a few families that contain children with special needs that have broken apart.  A few people have written me to caution me, to guard against the stresses that can occur, and I appreciate that.  I’m not going anywhere.  They are everything to me, and I appreciate the concern from those looking out for us.  It’s not to say Kimberly and I don’t have arguments, or that we don’t snap at each other from time to time, we’re a normal married couple.  Prayers for strength are greatly appreciated.  I pray often that God will help me be a good father, be a good husband, to be what they need me to be.

At some point I should probably go back and re-read most of these posts and fix the spelling/grammatical errors…  Kim tells me that my sleep deprived posts aren’t always spot-on….  I hope the message gets through though. 🙂

3:30 am, Saturday January 28th.  We just gave Alexandria morphine for the first time.

This morning (Friday morning) Alexandria began to get congested.  As the day wore on her congestion became worse.  We noticed yesterday that some of the boys had the startings of a runny nose.  A cold is running through the house and she has it as well.  Shortly after Lindsey left this afternoon it was clear she was having difficulty breathing.  By midnight (4 hours ago) she was really having issues and crying a great deal.  Around 12:30am I called Kim to come downstairs.  Alex’s heart rate had pushed above 200, she was miserable, and it almost sounded like her lungs were full of water.  I had Kim get my stethescope and listened to her lungs, they didn’t sound raspy, but it sure felt like the congestion had moved to her chest.  We called hospice and waited for the call-back.  Jessica is out of town, so we knew it would be Mary.  Mary called us a few minutes later and by then Alexandria was in one of her calm moments and it was clear the congestion wasn’t in her lungs.  I apologized to Mary for waking her up, saying it was a false alarm and that her lungs weren’t causing her pain like I’d thought.   I told her everything that had happened all night.  Mary let us know that using the morphine to calm her down and get her heart rate under control was appropriate and if she had another long episode to give her a dosage.  Kim went back to bed and Alexandria and I went back to watching specials on the Bermudia Triangle on the history channel.  For the next few hours she fussed here and there, nothing like long spells before, mostly tossing and turning.  By 3am she began to have considerable trouble breathing, her crying was exasperating the situation, and I was using the nose sucker to take out a lot of mucus to try and help her breath.  She is so small and seemed to be in so much pain.

I got angry.  I just don’t understand this plan.  I began to bargain.  I began to ask for trades.

Her heart rate climbed into the 190s and I called Kim.  I cleaned out her sinuses again and we gave her .1ml of morphine.  She’s been calm and sleeping for 30 minutes now, first good sleep in hours.  Her heart is back down to 125bpm and she’s breathing fine now.