A day to celebrate

Today marks one year since we got THE call from Boston.  I sat on our couch with Brandon at my side.  My phone rang with a 617 area code – Boston.  I squealed a little with anticipation and tried to calm my nerves as I answered the phone.

“Hello, my name is Dr. Kevin Friedman, I am a cardiologist under Dr. Lock, head of cardiology at Boston Children’s…”

“Uh huh”… 

I had to act like I hadn’t been stalking every detail of their department for months.  I already knew what the man I was speaking with looked like.  I already knew where Dr. Lock had studied and what his background and specialties were.  I knew everything I could know about Boston’s program from what was available online and through other heart related FB groups.  I’d done my research, asked questions, hoped, prayed… and waited for this phone call.  What I didn’t know… what I was (literally) holding my breath over, was what they thought they could do for my baby girl.  Brandon was just as anxious as I was, so I was trying to jot down notes for him as I was talking so that he was at least somewhat savvy on the conversation I was having.

After Dr. Friedman introduced himself, he said, “We’ve reviewed all of your daughter’s files and test results thoroughly and we see no reason why we can’t make her a two-ventricle repair.”  With that, I wrote “2V” on the note pad for Brandon to see, threw my one free arm up in the air, and launched my body back into the couch in complete and utter victory.  I can’t describe this to you at all.  This is not “winning shot at the buzzer” victory… no.  This is more like “winning Powerball ticket, Publisher’s Clearinghouse Prize patrol, winning buzzer shot, homecoming crown, final Jeopardy answer AND a good hair day all wrapped into one… but probably better.  Ellie was sleeping on the living room floor.  By this point, she was in a really rough spot.  She was rapidly growing out of the PA band that had been placed during her first open heart surgery and she was fighting for each breath she took.  She was always blue and always looked pretty rough… though she smiled through it all.  It was go time for her – just in time! 

We’d meet with our cardiologist yet that week to confirm with her that we were headed to Boston… and have our van break down on the way home in yucky interstate traffic.  We’d wrap up our month with an epic road trip to Boston to save our little girl’s life.

For us, May will always be about miracles… about second chances… about life… about heartiversaries.  About taking our little Tin Man on a 13-hour trip down her yellow brick road to her Oz (Boston) to meet with her Wizard (Dr. Baird)… guided by the true Wizard (The Almighty, The Great Physician).  It’ll always be about bringing our sweet Tin Man home from Oz with her brand new heart.  We are forever thankful for all of the prayers and support that carried us to the through that trip and have carried us since.  We are thankful for this incredible testimony we’ve been given… for the outcome that Boston gave us… for the Good Lord’s mercy on our daughter.  We are very aware that Ellie’s outcome is extraordinary considering her starting point.  We count our blessings every single day.  Days like today are especially sweet to us and we have to share those especially sweet days with the world.  May God bless you all and may you feel His presence today and always.

Ready for summer

This is from December... but you can see her Tin Man plushy here

 Happy Mother's Day, Grandma Schroer

Happy Mother's Day, Mamaw Maier

 And these two... oi... these two are added here so that we never forget just how far she's come.  Whew... so happy this is NOT our reality anymore.  Praise God!

Night at the ball field

This month, my update is a big ol’ fat dose of normal y’all.  We like normal… we like it a lot.

Ellie had decided that she has no time for the crawling business that we so desperately tried to get her to do for the past ten-ish months.  She found a new way of getting around, and it’s the most adorable thing I think I’ve ever witnessed. 

AmIRight?  I mean, we are still encouraging her to get on all fours and work on her strength in that manner… but she’s discovered that she can scoot her little butt all over the house this way, and there is no stopping her.  It’s a real treat to watch her when there is music playing (say… Frozen playing in the background) when she has somewhere to go.  She’s scooting with her bottom half and dancing with her top half… I can’t even.

So between her army crawl and this (we call it the booty slide), she’s everywhere.  And it’s awesome.  She’s working on pulling herself up to standing, and she’s really doing quite well with this.  We try to get her to cruise along furniture, but she usually just likes to stand and dance.  This kid LOVES music.

Ellie is taking the world of food by storm these days, too.  Well, we had about a week where she wouldn’t eat for us at all.  Straight up – she refused.  I’d never seen a kiddo take total control of a situation quite like this.  Our boys were always so hungry that they didn’t have time to try to control the whole eating atmosphere… they just ate.  The first night she did this, we bumped up her tube feeds so that she was still getting calories, but then we realized that she’s not underweight, per se, and with any other toddler – they’d just be extra hungry at the next meal.  This worked a bit, but she was obsessed with turning her head to every food we gave her, spitting out her bites, and really working this control business.  Thank God for therapists.  Ellie’s OT gave us suggestions on how to take control back of the situation… and just like on Super Nanny, those suggestions worked like magic.  The first few days were painful, but that’s it.  Two days of us doing feedings our way… and she was happy to adjust and eat off of the spoon again without much trouble.  So thankful we have a team to support us when we want to pull our hair out.  Less stress for us, no more tears from her… happy family and nurses!

After this bump in the road, she just took off with what she’ll eat for us, and you’d think that we’d never before seen a toddler eat by the excitement we have with each new step.  The first time she picked up a cheese curl and put it in her own mouth I about cried.  Feeding therapy is a lot of work… a lot of work y’all.  Work we had no idea existed before we had a tube fed kiddo.  New textures are scary… and biting things, well, that just didn’t happen.  Ellie was excellent at picking up food and throwing it on the floor, but she NEVER put food in her own mouth... until just recently.  

Once she realized that this food we let her have was yummy (has to be better than baby food), she slowly let us experiment more and more.  In the past month, she’s taken on soup with crackers, cereal with milk, cheese curls, veggie straws, and cut up sandwiches.  She’s eating sandwiches, folks.  I know, I know… lame story for most of you… but this is a big deal.  And a big fat dose of normal for us… we like it when we can soak up some normalcy around here.  So this food business is really promising right now. 

We have no idea what else is on the horizon for this little bug in the near future, but she sure makes our days exciting… and taking on the smallest of things (like eating a sandwich) feel like a real adventure. 

 Our happy girl

Taking a walk with momma

The boys came back from spending twenty days away from home.  They were traveling with my parents… and came back very tan (totally jealous) and full of stories of lizards and alligators and swimming pools and bananas.  We missed those little boogers so very much, but love that they had a chance to hang out with their grandparents.  Mom and Dad came home with an endless list of funny stories about things the boys did, too.  Ahhhh, I love those little kiddos.  For all of the times that we ask them to sit and be quiet, though… what I missed the most was the noise.  The first few days, I ended up turning the TV on so that there was some background noise in our house.  As much as the chaos makes us crazy, it’s also so much a part of our lives that we feel lost without it.  Ask Brandon… I barely cooked for the man while the boys were gone.  I like cooking… but it’s so much more enjoyable when I have someone push up a chair next to the counter and ask to help stir or help crack eggs.  This never ends well for the kitchen, but I love those little hands that love to help.  Today, I about flipped my lid because there was a banana peel and the yolk of a hardboiled egg mashed into the floor under the table after breakfast.  Later in the day, there was glue stuck to about everything at the table… but they were making me pictures and then wanted to glue flowers to their pictures for me.  How could I be mad about that?  They are so messy and so busy and so full of… LIFE. 

 The boys on the Gulf coast with my dad

Playing in the pool... while it's 35 degrees at home

This week, their preschool hosted a Night at the Ballpark where all the kiddos were invited to play wiffle teeball on the school grounds.  They gave them each a colored hat that matched their team and made sure that each child had the opportunity to play.  There was music and hot dogs and so much fun to be had.  Remember that their school has a healthy mix of typical and non-typical kiddos, so they even had one of the fields play on an area covered in blacktop.  This way, the kids in wheelchairs had no problem playing along with all of the other kids out there.  I watched this and my heart was overwhelmed with joy.  I love that this is the school that our boys are attending… but above that, I loved that all of the kids there that night… they all were able to experience a big ol’ fat dose of normal.  Every kid got to hit, every kid got to field a ball.  Parents sat around on blankets and lawn chairs and enjoyed a beautiful night as their kiddos did something so simple, so wonderful… so normal.  It was awesome!  I look forward to the day when Ellie will also attend this school and I’m sure I’ll be even more aware of how “normal” they make everything feel. 

 Kaleb up to bat

 

Lance up to bat

Giving 5s

So as we wrap up this glorious Saturday and get ready for Mother’s day, I wish all of you a big fat dose of normal tomorrow.  I know that Mother’s Day is a hard one for some… and a huge celebration for others.  I’m not wishing anything over the top or extravagant.  That’s not what is important at all.  I promise that what is most important is what is mundane, what is simple, what is normal… spend your day focusing on that and celebrating, cherishing the little victories and normal moments left in your weekend.  We love you all dearly – thank you for continuing to follow along.

Happy Mother’s Day to all of the mommas out there… no matter how this day finds you.  God bless you all.