Baby J. - Days 15-17

I'm sure everyone is just sitting on the edge of their seats waiting for an update.  Ok maybe not.  There really hasn't been much to report.  I have been in Topeka since Sunday (well except a quick jaunt back to home today for a doctors appointment) and have held her everyday.   

Last night I got to see the most of her that I've seen while they took off her BCPAP to clean her face.

I kind of think with the nose thing she looks like she belongs in Dr. Seuss's Whoville.  :-)

Updates- Last night she weighed 2 lb 2.2 oz so she was back up again.
    - Brain scan on Monday showed no improvement and no worse- still has fluid on brain but it hasn't gotten worse
- Got another transfusion today.  Her numbers were ok, but since they want to take out a pic line they thought they should go ahead.   Give her an extra boost.
-They stopped her lipids (fats) the other day and have continued to increase her food.  She was up to 22calories  (something is added to the milk) and 14ml of food every three hours.  She is No food by mouth though till tomorrow cause of transfusion.
-I believe they are taking her off her iv fluids tomorrow as well- again held off due to transfusion.
-Her X-rays are looking good with her lungs and I'm not sure if I already reported her PDA (in her heart) is starting to close.
- Baby J is starting to be awake more- especially around meal time.   She gets a little fussy cause I think she's hungry, but I definitely am seeing open eyes much more.   She likes to suck on the tiniest pacifier in the world.
-Today is the last doses of her steroids so I'm a little worried about going backwards but hopefully we won't see that in the next couple of days.  

So the major health struggles currently are:
-Needs to continue to get stronger lungs
-Needs to put on weight
-Brain fluid needs to dissipate on it's own. (PLEASE)

Other major hurdle is getting her a real social security number and on SSI so she qualifies for medicaid as she can't go on my insurance yet and I definitely can't afford the hospital stay.  There seems to be lots of confusion from everyone and it's all messed up.  Hopefully that gets worked out quickly.

All snuggled in

In house selling news- I met with a maid service today and a carpet installer for estimates.   Hopefully those things will help sell the house.  

Getting her feeding tube re-taped.

I can't thank you enough for all your prayers and support.  It means a lot.

I know it's blurry.  It's my back camera from my phone.  I'm holding her here.