my valentine

grrrr, i am so annoyed.  i just checked facebook and only half of my updates have posted from my phone and NONE of the pictures have posted.  i am so sorry - i thought i was at least updating you via facebook.

happy valentine's day to me!  i am home for the night...our little sweetheart had a good day and she was sleeping soundly by 7:00 so i decided to run home for a night in my own bed.  but i have to say, i am so frustrated that i have not been able to update frequently because there is so much going on.  i have got to figure something out.

here's the rundown...

sarahjoy is doing good.  not great, but good.  and that simply means that she is stable and we are seeing small improvements each day.  she is still in ICU, she is still on oxygen, she is still a sick little girl.  but we are moving in the right direction.

i feel like our goal is slowly shifting from keeping her alive to getting her home.  hasn't shifted completely, but we are tipping the scales towards home.  today she was more alert than she has been.  we got her up twice to get out of bed.  she took about 10ish steps and then promptly sat down in the floor.  and there was no way she was budging.  we picked her up and carried her to the beautiful playroom they have for her to be able to sit up for awhile.  the first time she wasn't interested in anything.  looked around for about 10 minutes before we brought her back to the room.  the second time she did actually play with a couple of toys.  watching her play reminds you of how frail she is.  she slowly moves her little arm and shakes when she is trying to do something.  she won't move her other arm because it is full of IV's.  and she doesn't move except for her arm - the rest of her body is completely still.  she hasn't really given us a smile yet and her eyes are still very sad.  but i can tell that she is more comfortable and one day soon i am going to get a smile!

right now we have a few things that need to happen.  she is still on oxygen.  it was turned lower today and we will see what happens.  when we have done this before that is when we go to crisis mode.  and i can really go without another code blue baby not breathing episode.  i think that took about 10 years off my life.  they will try to slowly lower it over the next several days.  this is a very specific prayer request....that she does not have to go home with oxygen.  there is a good possibility right now that she will.  but i am really not excited about having a two year old with an oxygen tank.

another specific is that she needs to be able to eat and drink.  today was a start.  she did keep some diluted apple juice down which we are giving her via a syringe.  and late afternoon she ate a little cup of applesauce and some cheerios.  we are moving in the right direction but we need to make sustained progress.  the poor little thing is so skinny.  she was skinny before all this and now she has had nothing to eat for almost a week.  we are going to seriously need to work on her bird legs before bathing suit season.

she also needs to be weaned off of an IV heart medication (milronen for you medical people.)  she cannot go home on this particular medication.  she will certainly go home on plenty of things, but this can't be one of them.  they have attempted to wean her previously but her left ventricle was not pumping properly so they put her back on it.

she also needs to have a clear xray.  right now both of her lungs are pretty junky.  they are much better than they were (her lungs are not fully collapsing, which is a great plus) but there is still a lot of stuff there that needs to disappear.  having her up for a bit today will help.  and having her feeling good enough to simply sit up will help too.  which i think we may have reached the point today where she can sit without support.  she did sit in my lap unsupported and watch almost all of toy story which is huge progress.  xrays are done every morning (and more often if needed) so we should get a report tomorrow when we go in.

and last but not least, she needs to be up and moving around.  we need to be able to get out of bed, walk to the playroom and be much more like a normal two year old.  right now if you came to see her you would see that she is one sick little puppy.  in fact, i forget to warn people when they come visit and it is pretty much instant tears when you walk in.  i forget how alarming it is because i have been staring at it for a week.  as much progress as she has made, we are nowhere close to being a normal little girl!

our little princess is in God's hands.  and i am hopeful that his plan is for her to be a healthy little girl with a big huge story.  we are praying.

i am simply sick about having all of you so out of the loop.  you all have been praying so faithfully and i feel horrible that i have not kept you up to date.  please forgive me and know that it is not because i have forgotten you.  i am so thankful for your prayers.  we need them desperately.  our little princess still has some chapters to go in her miracle story!

here are a few pictures.  progress is being made! 

sJ post surgery.  she had so many tubes coming out of her but she actually looked better than we imagined 

seeing my baby on a ventilator was not fun.  i was so thankful that she was off of that so soon.

fixing her hair.  : )  the nurses were very concerned that she look beautiful.  i mean if you are going to be laying for the whole world to see, you better have your hair looking good.  by the time we are out and about her hair might be down to her waist!

a little perkier.  no more ventilator and no more chest tube!

 

my miracle valentine

sitting up and playing...major progress!