Smiles for all!

Well, the surgery came and went and life is 100x better now that we're all home and settled.  Living as a fragmented family for a week was really difficult.  Billy and I missed each other; we missed Lilly, and I must say, at times, I actually missed Luke (it hurts to type this).  Our house was a disaster area for a week straight, but thanks to amazing family, it's back in order as of 20 minutes ago.  The "twins" as we call them, Grandma and her sister, Pearl, came over this morning while I was at the doctor with Emily and did 4 loads of laundry and whipped this place back into shape!  We have eaten like royalty and despite all the cakes and casseroles, I am pleased to say that I have not gained a pound over the course of this event!  I thought sitting in the hospital all day eating chocolate and drinking enormous amounts of caffeine would really pack on the pounds, but I guess my brain has been on overload and burned calories for me.

When Emily came home, it was absolutely bittersweet.  Lilly was SO EXCITED to see her!  She demanded that I put her down to see her.  She was a little scared by the feeding tube, but she was fascinated by her big "boo boo".  Being the dramatic girl she is, Lilly created her own "boo boo" and now wears a bandage to show she's brave too.  Lilly has been amazing with Emily since we've been home.  She understands that Emily needs a little extra TLC and requires more work than before.  She helps administer medicine, grabs burp cloths, and of course, is always in on the action when it's time to change diapers.

First home snuggles

Just because Emily is home doesn't mean it's all roses and sunshine.  She has reverted to being a newborn again.  We took two steps forward but two steps back as well.  Her heart is doing phenomenal.  We saw the cardiologist this morning and he was so pleased with how everything looks.  Her valves will always be somewhat "leaky"...that's just the nature of her defect.  The fat build up around her lungs has completely gone away with the new formula.  Speaking of formula...this stuff is no joke.  It's DISGUSTING and I'm wearing it everyday by 9am.  It's not like normal baby formula.  It's thick and rich and obviously is difficult to digest because Emily never keeps it down.  She now only takes 2oz of milk every three hours.  She gets a drip through the feeding tube at night for 8 hours-an ounce an hour.  They are trying to get her to "catch up" (on weight) from before surgery.  She still sucks really well from the bottle even with the tube down her throat.  The doctor said another month on the tube and formula and then hopefully she can go back to breast milk.  Hopefully can happen because if not, I've got 5 months worth of frozen milk to donate!

Nighttime is difficult for Emmie.  She wakes up several times, cries out, and it's very difficult to sooth her.  Being held too much or moved around is, for obvious reasons, uncomfortable.  I don't know what her cries mean anymore.  Before surgery, she cried only when she was hungry.  Now she's much fussier.  I know it's probably discomfort, but it's hard to decide sometimes.  Reverting back to infancy, we are constantly questioning ourselves if it's hunger, over stimulation, exhaustion, pain, or just attention seeking.  Just when we thought we had it all figured out....

Life is getting back to normal and hopefully the next 6 weeks of her recovery will go by quickly and we can enjoy our summer.  We have some great trips planned with the family to the beach and I think we are all definitely over due for some R&R.  As I've said a million times, this journey would not have been possible without our family who helped in more ways than I can possibly list and the masses of friends who pitched in or just offered prayers, kind words, and constant thoughts.  Every person in our life made this possible and we are so glad you are on the journey with us!