Day 26 - Open Your Heart

Today marks 6 months since I got up early for one last feeding before handing our little girl over to get her heart fixed.  I've been saving an email from my cousin that sums up the day from her point of view to share.  Hope she doesn't mind being the guest writer for today!

joel and i left maynard and made it to children's a little after 9 am followed by sean's dad, bob. eisley was chilling in her looney tunes hospital gown. we all sat together in a private little room, eisley passed around wondering which family member was going to feed her. some of you know my opinion that she has the cutest little tongue. she'll stick it out, swing it to the right corner of her mouth and then put her lips together. her little tongue peeking from her closed mouth will be pushed up as she raises one eyebrow. smile, coo. she'll stuck her tongue back out and repeat. it's the best baby face ever. combined with this she seems to always be kicking her legs out as if she were at the height of a perfect cheerleader leap. both legs straight out in a split. one leg out, one knee bent so the foot is directly under her tush. she would be perfect as a jumping baby of the couple in those kindle commercials.


she finally gave up on anyone feeding her in joel's arms and napped. eisley can be a loud sleeper when her mouth is dreaming about milk.

sent back for a chat with anesthesiology woke her, and she hung out with us a bit more before her surgical team was ready to roll leaving grandpa, seanne, joel and me. we talked laptops, ipads, imacs and chicago. not too long after their close friends, kimberly and tim, arrived. we all just fit. we talked baseball. professional, college, little league, and practice. fantasy leagues, those fancy grass designs, form, and trips to the emergency room. you all know how much of it went completely over my head. i still love listening to all the chatter. rich resorts has a baseball clinic offered to their staff - one of the perks of working there, i guess - and joel and i are hoping this summer they will open that up to preferred guests. we would love to enroll charlie and abigail and watch sean whip grounders at them.

Pre-op, marked with the surgeon's initial

we received updates on eisley's progress as they put the lines in and her to sleep. they placed a camera down her throat for one more look at her heart before beginning. it was give or take an hour when the surgeon came in with his updated assessment at around noon. he left to patch eisley's heart. we went in shifts to the cafeteria. it's been a long time since i got to split up boys/girls. there was a little joke we should split baseball/non-baseball, but i'm glad we didn't so anne and i could eat with kimberly. kimberly who sported a red sox travel mug and a story about her dad driving both of them to the emergency room after a game where she slid into the base he was covering.

kimberly has a son headed to college and a 14 yr old daughter. she homeschools. it was super interesting to learn more about that first hand, and hear about her son's weekend visit to colorado Christian college. all the incoming freshman there, they picked their dorm floors and suitemates. it sounded awesome and i exclaimed how it was just like kindergarten round-up. (compared to miss katie m who is entering kindergarten by way a process that more closely resembles my introduction to wartburg and frosh orientation.)

i realized saying 'i've always been interested in home schooling' could be heard to mean you want to homeschool. i would do about as well at that as i would coaching the kids in little league, but i didn't tell kimberly that - it was so cool talking with her.

the banana cream pie rocked.

we talked airport security checks and pat-downs, Christian and secular music, chem labs, and pickles. i assumed kimberly and tim's family listened exclusively to Christian artists, but in her youth kimberly saw peter frampton, waylon jennings and willie nelson in concert. i forgot sean saw 'kiss'. all four are way cooler than saying you saw 'warrant'. fun facts you discover and re-discover on the side while your heart is in prayer.

uncle mike and aunt jean arrived just after our room of seclusion's phone rang. anne made introductions and announced the telephoned news that eisley had come through surgery, not in that order. they needed to close her up, but everything looked to be in good order. uncle mike sat on the couch between anne and me and we pretended to be mom and aunt sherry. i agree uncle mike was the trouble maker since i was needled in the ribs, completely unprovoked. the surgeon came in and gave his debriefing. the surgeon left and anne translated the debriefing into common english. each accompanied by some of grandpa hartford's softly audible broken sniffles. i flashed back to when we would sit together on anne's bed and she would help me sound out the hard words in my 'encyclopedia brown' books. and grandpa hartford. and the times we've sat in wait during his open-heart surgeries.

it was around 3:30.

we made our way to the second floor and the picu waiting area. it was open. there were windows, a fish tank and we all fit again. for me, this wait felt the longest. we caught up on paul (entering itt, finishing massage therapy clinicals, and visiting a girl whose dad once chased paul with a shot gun), daniel and emily (planning a home water birth and two week postnatal no-visitor bonding period which i will hereafter affectionately refer to as the 'e-w' birth plan), and grandma. who comes from a generation where one ever talked about being, or even said the word, pregnant. women were expecting, and the details were guarded. watching uncle mike still squirm at the story of how they sat with emily and daniel watching 'the business of being born' makes me giggle the third time around. i can only imagine how funny grandma's alarm at emily's bare baby-belly pictures posted on facebook was - though aunt jean gave a good idea semi-reenacting the moment throwing her hands up and clutching her head in grand grandma fashion.

sean and bob stretched their legs. aunt jean bought joel and me some water and dew. i considered how mountain dew is water's bully stealing water's cool name and adding to the insult, becoming the popular kid in school. we talked about apple valley, ed, and food shows. i kept forgetting to ask mike and jean their first concerts. i have high expectations for their responses. and finally.

a picu nurse came out and said eisley was settled in her room and was now accepting quiet visitors, four at a time.

i was reading room numbers, but recognized eisley's room by the little legs dancing straight up in the air off the bed through the room's partition glass. she looked so.amazing. pink. awake. albeit, uncomfortable, but so reassuringly pink and wiggly and kicking. hazy, but when anne walked in you could see the recognition of her mommy wash over her. she had her tongue and few lines coming out of her. nothing dramatic or overwhelming. a small wound covering. those big bandages you use to cover skinned knees are more intimidating than the little thing covering what will be her tiny scar. she didn't smell like surgery. no yellow sterile tinge. not knowing, i would have guessed she was pre-op, not post. just a little squirmy in that uncomfortable can't-get-comfortable way. her blood pressure was up. she needed to settle down a little and snuggle in, and so they were adjusting her morphine levels. and that was all. complete amazingness.

sean's dad, tim and kimberly - who had left to pick tristan up for his after-school program - exchanged seats with sean's grandma, aunt lori and uncle mark in the picu holding tank. i have grown to love aunt lori through anne's stories of rich family gatherings and in-law melodramas. like the kimberly and tim, it was nice to refresh name with face.



good-byes to everyone, eisley, and we hit the road. we picked up two sleeping children in town and a third at the farm and were all home and in bed by 12:30. joel and i made it 22 hours on 2 hours and 15 minutes of sleep the night before and a 22 minute and hour nap for each of us on the morning drive over. we don't know that joel has ever slept while i drove before. the equally rainy ride home we channeled our youth listening to 90's music on sirius xm radio, enjoying our 6 months new car free membership well into the eighth month now. we wouldn't change a thing about it.

it was a long day, but still not nearly as long as it was for sean and anne. and yet i note anne continues to look both flawless and unruffled. her face is clean and fresh, her clothes are on straight, and her hair has bounce. she and sean both emit God's peace and on anne it only accentuates her beauty. plus i really love her hair cut. which i say about every time she gets a new one. i know it'll bug her to read that - but honest. sunday morning the croup virus shared from his sisters and his asthma collided together in tristan's lungs cutting off his air. tristan couldn't speak. he couldn't get a breath. you don't catch it in her facebook or caringbridge updates, but live it sounds like she was steve mcqueen driving him to the er. assuring her already alarmed son if a cop stopped them, the cop would only help get them to the er faster. the next day her baby underwent open heart surgery. pass her in the hall and you never imagine either to be so. i kept looking at her thinking how anne is what it looks like to put your faith and fears entirely in God's hands.

in the room of seclusion was a journal kept by other families who had sat there before, writing, waiting as their babies hearts were being repaired. you could read how very, very lonely that room has been. watercolor hearts made by families and patients were gathered, stemmed and leaved to resemble large flower gardens in two massive frames on the walls. they were adorable. on one flowering heart was written "thank you for letting my son live his life". my heart focused on that in prayer for eisley and thankfulness for how full and warm that little room was on the day of her surgery.

Getting an echo before going home - just 2 days later

in the picu wing, there are ducks stuck in the ceiling. as if their unseen upper torsos and heads were peeking through to the third floor. looking up from the second, all one sees are their yellow webbed feet and white butts. what a trip to be a kid wheeled in under that.

Wagon ride for a chest x-ray and checking out those duck butts!