Lemonade

The roller coaster continues.  I've tried to sit down and blog many times but the sitting down is hard to come by, so it's not happened.  A lot has happened though in the meantime. 

Penny was doing so well and gaining weight (5.26 kg/11.5 lbs) that her team decided to start her transition to her home ventilator by changing the tubing to something more similar to home vent tubing and then switching to the vent.  When the tubes were switched, what they thought were pediatric tubes were actually adult (why they have those at a pediatric hospital I'll never know) and she was left on them all night.  Once the nurse practitioner and attending saw it the next day they said "oh no no no" and went ahead and put her on the home vent.  She did ok for a few days, although she was breathing a little more quickly, and then she made it quite clear that she had had enough.  That was a couple of days ago and she's still not gaining weight, still has an elevated heart rate and still is breathing too quickly when she's awake.  The nurse practitioner explained to me that it will take her a week or two ("it all depends on her") to recover from the work she was doing with those adult tubes.  The good news is that she's back to being happy and not fussy like she was right after the switch.  She has the sweetest smile.

Other than the hulabaloo (not in the dictionary) she's doing pretty well.  In general she's taking bottles well when she's not too tired from breathing, and she's allowing a spoon to be put in her mouth that has bananas on it.  I wouldn't say that she's eating from the spoon, but they're starting to become acquainted with one another.  Lydia shows her all the time how fun it is to eat.  It seems to encourage Penny to at least not hate eating from a spoon.  Good positive peer pressure!

Lydia is now 18 lbs!!! She's a big fan of food.  She's so hilarious to watch sometimes as she's trying to assert her personality.  She's clear about her opinions for sure.  She's also very clear about what she thinks is funny.  The videos below will show you more than I can type it.  So fun.

Personally, for the most part, I'm doing really well.  This afternoon was one of those afternoons that I cried all the way home from the hospital.  Those days are very few and far between and, considering the situation, I'd say that's pretty good.  If it weren't gut wrenching to leave one of my babies behind  everyday then there's something awry.  Oh yea, I just used awry in a sentence.  Oh look! I did it again! People often ask me how it is that I'm keeping myself together.  My answer is always "well I ran out of my own strength a long time ago. Now I'm working with God's strength and it's a lot better than my own."  That's become more and more true everyday.  I imagine this is only the beginning of relying on Him for strength.  A dear friend of mine and I were discussing what you do when life gets tough.  She said "lemonade baby! lemonade!"...and I whole heartedly agree.  Lemons, plus living water, plus the sweetness of life itself...that's the ultimate refreshment. Yes, that may be the cheesiest analogy in the history of analogies, but lemonade would not be lemonade without any one of those ingredients and I believe that life wouldn't be either.

I also believe that you want to see pictures and videos so I'll stop waxing geeky and get to the good stuff.

"yay for pictures!" -P

"make sure to get a shot of my good side!" -L

"Penny, you have a little sputum on your shirt, let me get that for you" -L

Breakfast picnic in the driveway on yard work day...we picnicked and my dad worked...it was awesome

That's a whole lotta Chu

"I hope this one works, my arms are getting sore" -J

"I hope I'm holding my head right so I don't have a double chin" -B

"I hope they let me play with that light up thing mommy is holding" -L

"I hope I don't turn out like these weirdos" -P

high fives!

Penny's first bow that actually stayed in her hair!