Happily Ever After...

Our life doesn't look the way we expected it to: It is full of medications. Breathing treatments. Medical bills. Wound care. Flushing ports. Insurance company calls. Doctor appointments. More Doctor appointments. Trips to the pharmacy. Where we are on a first name basis. Deliveries of formula come to our door. And medical equipment of various kinds. On a weekly basis. Sleepless nights of worry. And days centered around the next feeding. Tears at unexpected times. And love undeserved from friends and family.  We "live life" in the two hours in between hour-long feeds these days.  But "living life" is what we intend to do. Like jumping in the leaves from the comfort of your stroller.  Just to enjoy the beauty of a fall day.  And sweet smiles from your twinny. To encourage you and give you strength. Like an unexpected leaf party.   Just because you can. And finding joy in the ...

 November.  December.  January. February. March.  April. May.  June.  July.  August.  September. Our 3rd BIRTHDAY!!! October. November.

One year ago today, we headed into a very crowded room  full of families in the making, and were handed two beautiful baby girls.  I look back and see God's hand every single step of the way. God has BLESSED US more richly through these two girls than we could have ever anticipated. The joy of seeing them blossom has been a treasured gift. The road has been hard... ....But good. Totally, wonderfully good. And knowing what we know now, we would NEVER CHANGE A THING . Happy One Year Home Twinny Twin Twins!! You are loved and adored more than you could know. We are so proud of both of you for being so brave, for learning to trust, for loving in return. WE LOVE YOU BOTH!! Each and every day is a gift. Today we celebrate our two precious baby girls. We are blessed.

Friday night was a long night for our sweet girl. She vomited her pedialyte so all feeds were stopped. She yanked the tube coming from her button.  Not once but twice. She almost got her IV out too. We thought some twin time was in order.  Saturday we brought Sofia while my sister graciously kept the biggies. Sofia was VERY concerned about her twin: "Celia you look like a train wreck girl.  Let's bedazzle you."  Sweet Sofia made it HER JOB to cover Celia  with as many stickers as her legs, arms and nightgown could hold.  They watched movies together. Sofia picked out some balloons for Celia. And held warm compresses on her tummy. And they shared a little...  Twinny Love. Precious doesn't begin to describe how Sofia was with her. Celia even felt like taking a little walk around, so we got a little morale boast too. So for the down and dirty; She narrowly avoided another surgery as our ...

 In pre-op with her new IPAD to keep her company.  Kisses from Mommy and Daddy to send her off to surgery.  Not happy..... It was a rough first day for our little princess. Pain control issues, her oxygen sats kept tanking and she did not tolerate the first meds put in her g-tube. We are praying that's not a pattern, but her tummy has to "wake up" and so far it has shown it's still fast asleep. Kids like her can have GI motility issues which can go from bad to worse. We are praying that her tummy is just sluggish, but will tolerate the Pedialyte that they will try tonight. Until she can tolerate that, she cannot progress to formula. Since we are stopping all oral feeds for at least two weeks, we really need her to get that tummy going so she can get some nutrition.  Her new Mic-Key button. She had her stomach stitched to the opening in her skin, so that if she has leakage, it won't be into her abdominal cavity. OUCH. Mito kids can only tolerate ...

I like to compartmentalize.  I am getting really, really good at it. Situations go in a box on the shelf  and stay there until I am ready to deal with them. So instead of stressing  thinking about surgery tomorrow for Miss Celia, I am reviewing thousands of wedding pictures. And I thought I'd share...... It was a magical, fabulous day.

 My sister bought Celia this SUPER HUGE pillow pet to recover on after surgery. She thinks he's pretty awesome, and she even willingly tolerates "tummy time" because she likes to grab his ears. SCORE!  Gianna got the tape off her back, which means two things: It's been four weeks and she is infection free- Halleujah!! and, We eat ice cream to celebrate. (Oh, and we did a little jumping on a giant pillow for good measure) Speaking of giant pillow.... Celia STILL wants a giant $10,000 pillow in her back yard. Hmmmm...... Sofia wasn't overly thrilled with the wobbly pony ride, she has more refined tastes and likes the real version, but Celia was all in to petting him. In the tricycle race, Gianna led the pack! She had a blast. My long-legged girl humored her sister by playing along, but her knees just kept hitting the handlebars. THIS is what Celia thought of the hayride. ZZZZZZZ..... I think she's dreaming of giant pillows :) ...