Day 17: A good day

I don't remember much about yesterday so we'll just have to skip to today and see if I remember anything as I type.

It was a rough night as Shayna woke every 2 hours and wanted to eat; sometimes well, others just comfort snacks.  It's good she's eating but she's turned into a really light sleeper too.  The hospital nerves have finally taken over.  Poor baby.

We did have a great morning with a breakfast date with Michael.  He got up early to make flaxseed, blueberry pancakes and they were delicious.  He brought everything to the hospital and the 3 of us sat in the family pantry (area with fridge, cabinets, sink and table for keeping our outside food).  Shayna sat on the table and crushed the pancake piece I let her hold into many little crumbs but loved the little pieces I popped in her mouth.  We had apple slices and thawed frozen strawberries in their juices to put on the pancakes so Shayna got to eat her first strawberries too.  (She does a really good job gumming things instead of choking on them.  The few things that do cause trouble she easily hacks to the front for more gumming.  It makes experimenting with new foods and textures less worrisome.)

Nahum and I had our 2nd teaching session for post-transplant Shayna care through life.  It started yesterday and we'll have our 3rd, and last, on Monday.  We learned things like Shayna can't have grapefruit or pomegranate because the chemicals in them interfere with prograf absorption.  We are taught about all the drugs she is on or could be on both to prevent rejection as well as treat the side effects of the rejection drugs.  We learned what to do about colds, the flu and other viruses, what to call the about and when.  I'm beginning to say, "thank goodness it's only a liver transplant," as we learn more about the complications with things like small intestine transplants and all the other possible things that can go wrong.  Michael and Hilary babysat while Nahum and I learned and Shayna was perfectly happy touring the hospital with them.  Michael picked her up from Nahum's lap and she went to him without a fuss, something that wouldn't have happened 3 weeks ago when we first got to Pittsburgh.  (She'd cry if he got to close then.)

I gave her a mini-bath at the Ronald McDonald (our hosp room has no tub).  I can't let her incision sit in the water or let her central line covering get wet but I was able to wipe her down and pour water over her shoulders, back, and belly while she sat in 3" of water.  The steroids have made her grumpy so while she remembered the water being fun and tried to have fun she really just ended up pissed (her usual situation).

After bath time, we saw her old liver.  They started off showing us a normal liver of a 1-year-old, then an adult (both drained so not red with blood but gray), and finally uncovered this massive dark green thing that was her liver.  We put on gloves and got to feel all 3 and hers was just as hard as it had felt when we touched her belly.  It was cut up from the pathologist's examination so it was hard to get the full scope of the size in her as a couple pieces were missing but an incredible experience all the same.  We've got pictures that I'll put on the password site this weekend for you curious folk.  There was no diagnosis so Shayna is still exceptionally unique.  It was like cyst type things had formed between her inner and outer bile ducts causing the liver to slowly fill with bile, as it would have with biliary atresia.

She does more sitting and playing on her own each day so is returning more and more to herself.  She sat in bed and played while I did stuff around the room today; though, she always keeps her eye on me.  She talked to me while I washed bottles this evening.  Her vocabulary suddenly jumped pre to post.  She used to just stick with repeating one sound to me with various intonations.  When she finally found her voice post-transplant, she was suddenly combining her sounds so it's more like words.  I've got a new vocabulary to figure out now.  We had a delightful 1-1/2hr nap together on the foldout bed this afternoon.  I relish the rare occasions she wants to sleep with me.  It's magical to be curled up next to my baby.

Time to get ready for bed; though, I think Shayna isn't actually sleeping, just being quiet in bed because I hear some crinkling toy she may have gotten her hands on.