49 Days Old (before 4pm)

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

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…

 

 

 

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.

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.

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.

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.

 

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…