Wednesday, May 9, 2012

A quiet day for us

Quiet days are good.  No excitement is good.  I was able to get to the hospital around 8am this morning and had a nice quiet morning with her in my lap while I ate breakfast and listened to the doctors when they came around.  Not too much to say.  She was able to have my milk this afternoon through the feeding tube in her nose.  It was just on a very slow rate of 1cc per hour or something like that.  She has had no reaction to it at all which is wonderful, and tomorrow, they *might* let me try to bottle feed her my milk.  As long as she's in Intensive Care they want to know exactly how much she's taking in, so she can't nurse until we move to the step-down cardiac unit.  But it's still a step in the right direction.  It looks right now that she might move out of the PICU sometime this weekend.  We'll see. I also got to just sit and hold her around 4:30 for about an hour and a half just rocking her, talking to her, singing to her, and enjoying her... while she slept.  As soon as she was put back in her bed, she woke up with eyes open and all alert.  Couldn't have done that while she was in my arms... ;o) She was just too comfy curled up against Mommy, that's all.

They said she will have her first casting done on her left club foot next Tuesday.  I called the orthopedic doctor and she's set for 7:45am.  We have to have a new cast put on each week for 5-6 weeks.  But it appears we can go to Willoughby instead of Main Campus.  Dr. Gurd is out there on Wednesdays.  It's about 20 minutes closer to home. 

The doctors said she's stable and weaned her off her heart meds today.  She is and possibly will be the rest of her life still on calcium.  They were able to give her some through her feeding tube and some through the IV.  They kept mentioning the DiGeorge Syndrome this morning.  The smaller test of the 2 the genetic doctor ran on the DiGeorge came back negative.  The other, more detailed one takes a week to get back which I believe is Friday.  Dr. Stewart did say that even if the blood work comes back negative, he believes Dr. Moran, the geneticist, will still give her a clinical diagnoses of DiGeorge Syndrome.  It is covering even her heart defect besides the club foot, spine, anus, ribs, calcium deficiency, weak immune system, and whatever else I'm currently forgetting.  It all fits together with the missing thymus gland.  We'll see.

The nurse practioner from the cardiac step-down unit said that Cayla doesn't need to be in either ICU anymore since she is doing so well.  It's just her feeding.  The lactation nurse said she's going to have Cayla try to nurse just to learn how, not for full feeding purposes.  So when the time comes she'll be a little more ready.

I almost got to wash her hair today, but there was so much going on in the PICU that our nurse was called to other patients.  No big deal when there's others needing so much help.  We'll try tomorrow to get a good hair wash...  but I will be glad to be off this floor.  It is a little intense and hard to see.  Children crying uncontrollably, nurses and doctors running by your room to get someone into emergency surgery, parents looking lost, confused and hurting for their child, and just not a very peaceful place... today especially.  Our room was exceptionally peaceful, but not so for others.  Dr. Stewart ran by most of the day.

Looking forward to see what tomorrow holds for our family!  My verse from today.

"As for God, his way is perfect:  the word of the LORD is tried: 
 he is a buckler to all those that trust in him."

Cayla on Tuesday with her big sock glove to help her behave and you can see part of her bruise on her arm.

Cayla on Tuesday closing her eyes everytime I tried to take the picture.  They were actually open...   You can see her nice central IV there that Dr. Stewart put in.

Today, with her eyes open but with the furrowed brow.   She had that look every time her eyes opened...  She was trying to focus too. 

Do you notice something in this picture?  Her little oxygen/air tube was taken out this afternoon too!  Just down to the feeding tube, one IV and some monitors on her chest.  :o)  She got in trouble again for pulling on the feeding tube, so she got a pink sock on that hand.  Hoping to get some hair washed tomorrow if things aren't too crazy on the floor.  :o)

Yesterday, Tuesday, I couldn't get the flash off on my camera so I just took a little video of her instead.  :o)