A Dream For Baylee

12/29/09 update

Today has been a hard day on so many levels. Baylee woke up hot & tremoring again. I gave her some childrens motrin since that always seems to help. Whenever Baylee is awake she is constantly tremoring (her right arm & hand.) She is so inconsistent from 1day to the next.

Tracy called 2 check in & also got some refills 4 medicines ordered. There hasnt been much change since Sunday except that she stayed awake most of that day, even with the medicines I had given her. She still sleeps quite a bit but that day she was determined 2stay up & not miss a thing. She was tracking pretty well w/her eyes & even offered up her lips for some kisses.

I also received a call from the pharmacy that delivers all her feeding supplies & formula. I had 2tell her Baylee didnt need any more. She asked me if it was just this week & I said No, not ever. Not exactly what I wanted 2say but thats what came out. She knows Baylee is sick but I dont think she was ready 4 my response. Supplies & formula r no longer being sent however I did ask her 2keep Baylee's acct open just in case she needs something, mainly extension tubes or mic-key buttons. I am 2call her when Id like it closed & hav everything picked up...the IV pole, kangaroo pump, extra formula, feeding bags, extension sets, syringes, and all the rest of the extra stuff.

Going back to the day I said she wasnt peeing, well of course after I posted that she peed. Very concentrated from being somewhat dehydrated. Im only changing her 1x/day & its very little.

I finished reading the book 2her yesterday. (If u were interested in reading it, Amazon sells it.) So today I started reading her this one. Our Pastor's wife brought it over 4us 2borrow.

12/27/09 update

Yesterday we just sat around & watched tv all day. Baylee slept. Its so hard 2 just wait and wait and wait. I kept watching her breathing...

Inhale.

Exhale.

I dont know how much longer her little body can hold on. She seems so miserable but not in any pain. Its more of a boredom-dont-feel-good kinda thing. I can see it in her red, bloodshot, enlarged pupil eyes. She loves 2b held when she's not feeling well so I hold her as often as I physically can. Im still giving her the Ativan when needed during the day. I gave her a little bath on her bed with some soapy water & a fluffy, white washcloth. It wore her out and she fell asleep right away.

Tracy came by 2visit 2day. Her bp is still high. 1 thing we talked about was Baylee not peeing anymore. The last time I changed her was Christmas morning after she woke up. She hasn't been wet since. Tracy says it's a sign of things slowing down. Duane & I are both amazed she is still with us. We, and several others, thought she would go on Christmas Day. I like what Tracy said today, ''God didnt need a little red-headed Angel that day.'' Made me smile. Baylee continues 2 surprise us all. I also told her Baylee woke up w/white, cloudy saliva falling out of her mouth. It had an awful smell. She explained it was from the Atropine drops she's taking & because she isnt swallowing regularly anymore. Tracy couldn't hear her breathing very well either. She is taking such small, short breaths now.

Christmas Day 2009

I woke up this morning to see Baylee still breathing. We r so glad she is still with us this Christmas day. Even tho its not a good one for us this year, we r very thankful the Lord gave us one more Christmas with our sweet, baby girl. I held her while we watched the Disney Christmas Parade. She slept thru most of it. We've just been relaxin & enjoyin the day together as best as we can.

From the book:

Christmas
is a reminder from
God Himself that we
are not alone.

Christ has
come to give us hope.
To give us a new song.
To heal our
spiritual wounds...
if we will let Him.

Christmas means
something vastly deeper
than human good will.
It is the loving
remembrance of the birth
of the Savior.

week 24

12/22/09 update

Baylee slept the whole day today. She woke up a little bit when I changed her so I decided to try & give her a bath. After her bath activities were complete it was time to give her a little juice w/senna. I drew back on her tube again. There was alot of formula from her morning feeding, over 5 hrs earlier. She's hardly absorbing anything now. Usually by that time the food has been digested. After her juice I read her some more of the book. We're about half way thru so far.

Tracy called today to check in. I told her about the formula & said I would hav to decrease her intake, again. But really I knew what was coming, what she was going to say before she even said it. She's not absorbing the formula anymore. I can give her some water throughout the day, which will keep her somewhat hydrated. She's comfortable. Sleeping.

12/20/09 update

Tracy came by today. Baylee was asleep and woke up after she heard her voice, it wasn't right away tho. She's still sleeping about 22 hrs. a day.

Thank you for the suggestions of what to ask the nurse. We talked alot about different option to help Baylee with her secretions. She ordered Baylee some Atropine drops, which I will give her 1-2 drops on the inside of her bottom lip as instructed by Tracy.

This is the book I've been reading to Baylee. The book is about the story of Jesus' birth/Christmas and includes individual stories about the people (Joseph, Mary, the Innkeeper, etc). I read the story of Jesus' birth to Baylee every year but couldn't find her children's books. They are packed with the Christmas stuff. So I decided on this one.

12/18/09 update

Baylee sleeps 20+ hours a day now. Even when I move her she stays asleep. She's most comfortable sleeping. Last night she woke up 4 a few minutes, the tremoring started & her face got real red. Whenever she's sleeping there is no tremoring.
2day Im going 2sit by her bed & read her some Christmas stories, hoping she can hear me.

week 23

12/17/09 update

When I woke up this morning I could hear Baylee breathing loudly. It didnt sound like it usually does. Her face was really red & she was very, very hot! I immediately got the thermometer. Her temp was over 100. Im at a loss. I dont know what Im doing. Im not a doctor or a nurse. I have no idea what signs 2 look for or what certain signs or changes mean. I gave Baylee some children's motrin 2 get her temp down. It worked but took a long time. She was also having difficulty swallowing her saliva. Her breathing sounded so strange because she had alot of saliva built up in the back of her throat. She's not too good about clearing it herself and there's nothing I can do 2 help her with that except encourage her 2 swallow. Please swallow was all I could think of. Over an hour later she finally calmed down & fell asleep. Im going to attempt giving her a bath today.

12/16/09 update

I dont have anything to update. Nothing has changed since Sunday. Baylee still sleeps most of the day. Ive been trying 2figure out some kind of consistency within her day but no 2 days r the same. Everyday is something different in her sleep patterns, even tho she's mostly sleeping. 1 day she sleeps alot in the morning & the next she sleeps alot in the afternoon. Im still giving her the Ativan.

I was looking at her eyes yesterday 2 see if she was tracking anything. She did but very briefly. Her pupils are very large from the Ativan. I wonder what she does see. If we r blurry or if she just sees shadows. Its hard 2 know.

Today was the Christmas program at Baylee's previous school. This would have been her first year (and mine) seeing it from an "audience" perspective. She's always been a part of the play & I was always behind the scenes or on stage with her.

12/13/09 update

Baylee slept most of the day yesterday, with & without the Ativan. Late in the afternoon she was tremoring so I gave her 1 Ativan. It only takes about 15mins 4 the meds 2start working. She slept the rest of the day.

Ive decreased her food intake again to 100cc 2x day, once in the morning & once in the late afternoon. Her body just isnt using as much anymore. I feel like she doesnt need food anymore, although her tummy was growlin this morning when she woke up.

Tracy came by this morning. Baylee woke up when she started touching her 2check her bp & breathing, which were both very high. She fell back asleep very quickly. Her breathing is very shallow. Duane & I don't think she is going to hang on much longer. She is very comfortable as far as we can tell.

12/11/09 update

Mark came by 2visit Baylee 2day. She had fallen asleep on her own just before noon so he didnt bother her 4vitals & such. We just talked about what meds she has taken in the past 2 days and when she took them, how feedings were going, and her comfort level. Im holding her as much as I can. She is VERY comfortable in my arms.

week 22