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.

Toddler Phase & Holland

Ellie is now 19 months old (as of Sunday).  And every ounce of her being is pure toddler.  As much as I hate to let go of the baby phase, I so love the spunk and personality that comes with the toddler phase.  Don’t for a second think that Ellie is free from the regular toddler things, either.  I picked her up off the floor the other day after she was tearing all of the medical supplies out of her trach care drawer (she was literally throwing sterile cotton swabs and gauze pads in the air and letting them rain down over her).  I went to move her to a different side of the room so I could clean up the mess.  As I had her in the air, she flailed her legs front to back, creating enough momentum to thrust her whole body back and forth while she pouted in my arms – full on tantrum mode.  TODDLER!  She sat on the rug and I said, “No, Ellie, you can’t play with that (while signing NO to her).” 

She signed, “mine”. 

“You’re right, Elz… those supplies are all yours… but you can’t play with them.” 

Pouty face… signing, “mine”.  Toddler. 

She likes when we sing “The Itsy Bitsy Spider” and she does the hand motions along with it, but she really doesn’t like the motion that goes along with “out came the sun”.  I usually pause the song and say, “c’mon Ellie… show me your sun”.  She stopped Tuesday and signed “no, no, no” to me.  Yikes… that’s sass.  I’m in trouble.  She’s also learned to sign “what?” with her hands up.  She uses it in the most ridiculous ways.  She’s being rotten and she knows it.  I say her name in the “What are you up to?” tone… she signs back “what?”  Oh, how I wish I had a video of a day in the life of Ellie to share with y’all.  She might be the funniest little person I’ve ever met.  She fully understands everything that is going on around her… don’t you think for a second that she doesn’t.  She chooses who she interacts with and when – and she likes to see who will play games with her – but only on her terms for now.  It’s safe to say that she is quite the little social butterfly.  She’s still very overwhelmed in larger social settings, and rarely lets others hold her right now, but I’m sure this is just a phase.

She's currently obsessed with eggs.  

And how cute is the little beach outfit the Easter Bunny brought her?

We’d set a goal at her first birthday to have her crawling by 18 months.  We’re not there yet.  She is doing amazing things in therapy, she really is.  She’s able to sit on my knee and she’ll stand up all on her own to play with things on the couch.  She’ll shift her weight from leg to leg in a standing position.  She’ll kneel on all fours and move a bit… and she’ll army crawl her way all over our house.  But a belly-off-the-ground crawl, not yet.  I have to admit that I was pretty bummed out when we were getting close to the end of March and it was clear that this just wasn’t going to happen.  As I think about this today, I’m so very aware that today marks two years since we received Ellie’s first diagnosis.  On April 7, 2014, we were 18 weeks pregnant and we found out that we were having a little girl… and we found out that our little girl did, indeed, have Down syndrome.  We’d waited ten excruciatingly long days for test results to come back to say whether our 1 in 93 chance was positive or not.  In those ten days, we imagined so many things about our future child.  We prepared ourselves for a future as parents raising a child with Down syndrome.  In the midst of the fog, a friend sent us this analogy:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I still can’t read this without tearing up a bit.  But I have to say, I’d take another trip to Holland any day… Holland is amazing.  Holland is beautiful.  And tulips have always been my favorite. 

But not until I experienced Holland did I realize how amazing and effortless Italy was with my boys.  I’m not saying parenting is easy… geesh, that’s not at all the case.  The boys cause far more stress on the daily than Bug.  And there’s nothing in me that is jealous of how effortless (read: normal) Italy was or is for others… nothing at all.  Italy is great.  Holland is great, too.  I just wish I had an ounce of appreciation for how amazing Italy was when I was living it.  I’m still living it and I’m not fully able to appreciate how amazing Italy is sometimes. 

On Easter, my nephew (who is not quite nine months old) crawled over to me, kneeled at my knees, propped himself up on his one arm, and turned to look at what was going on behind him, supporting all of his weight on one arm.  It was like this monumental feat of strength and masculinity in this tiny (impossibly adorable) little body.  There was strength and purpose and rigidity in his pose.  Then he let himself down gracefully and went on to the next thing.  I sat in amazement.  Italy is amazing.  There is not a jealous bone in my body folks… don’t read that wrong… please don’t.  I love my squishy baby more than you can imagine.  And I love carrying that little girl around.  I’ll carry her around for as long as she needs me/wants me to.  That’s not what I’m getting at here.  It’s just that when you work with a kiddo for months (like… ten months) to do a task and it’s not happening yet… it amazes you at how naturally it usually happens.  Okay – long tangent – but to get to the point, Ellie is doing really well with therapy, but she is not yet crawling.  Who knows when she’ll do that?  We’re just taking in the slow pace of this Holland ride and trying desperately to give her the tools and therapy she needs to get to where she’s going.

Ethan showing Ellie how it's done!  Goodness, can he be any more adorable?

When we read (two years ago) that kids with Down syndrome may not walk until their second birthday or later, I couldn’t imagine carrying around a two year old all the time.  It’s funny how things that seemed like they would be so cumbersome before aren’t even a consideration these days.  Of course, we will do everything we can to get her to meet the milestones she needs to meet, but she’s really quite a peanut… and she fits just perfectly in my arms, ya know… I could carry this kid around for years to come and be perfectly content.  Funny how things change, huh? 

March was a big month for Ellie with appointments, too.  She stayed rather healthy… except for a yucky little bout with hand, foot, and mouth – ick.  We met with all of her specialists through February and March and we’ve been cleared by cardiology to move to annual appointments.  That’s a HUGE deal, people.  For the kiddo who needed to see cardio a few times a week… the one who was in the depths of heart failure at this time last year… ahhhh, I can’t tell you what it’s like to see a normal, 4-chambered heart on an echo and hear that there is no leakage in her valves.  Just so you know, I’m never going to stop posting about that.  I’m never going to stop singing the praises of her team in Boston and the Almighty that lead their hands last May… it’s just too much for words to ever justify for me. 

From a pulm standpoint, she’s been cleared to wean off of the ventilator through the night, but we’re waiting until after our April appointment to make those adjustments.  She’ll be moving to a cool mist machine that’ll deliver oxygen and cool mist through her trach while she sleeps.  This will make sure she doesn’t drop her oxygen levels too low while she sleeps (we have no idea how long she’ll still deal with sleep apnea).  But it’s a big step to get rid of the need for ventilation during sleep.  We’ll still have it on hand in case she gets sick, but it won’t be part of our daily routine.  Yippee!  Her ENT agreed that we’d be ready for her next big surgery in July.  We’re both excited and nervous about this.  This will be the step we need to take to get her ready to move towards getting rid of her trach.  She’ll need some sedated procedures a few weeks before surgery, then surgery in July… then work on using her upper airway after the newly constructed airway is fully healed.

Doodling with Rae while she waits on the doctor to come in

And finally, from a GI standpoint, nothing major here.  Ellie is eating well by mouth (this sounds silly to most of you, I know… but in the tubie world, eating by mouth is kind of a big deal).  She actually eats with us at all of our meals.  She seems to be pretty stuck on purees – she’s comfortable with all stages of baby foods, really.  We can’t complain there.  When we give her chunks of foods (like little cooked apples or carrots), she spits them out at us.  Not a fan.  She will nom nom on little bits of peanut butter sandwich… we’ll chalk that up as a win!  We’re trying to figure out a way to wean her off of the nightly tube feeds without screwing up her calorie intake.  This kid doesn’t gain weight for anything… okay, she does, it’s just slow.

So all in all, Ellie is doing great.  She’s making strides in therapy.  She’s making strides medically.  She’s learning sign language… and she’s certainly embracing everything about this toddler phase.  She is sweet and spunky and adorable and rotten to her core.  We love this Bugglet and we love that she’s been our tour guide through Holland for the 19 months we’ve been touring there.  Holland and Italy are indeed different… both beautiful and wonderful, though.  We just have to be careful that we’re able to celebrate the gondola rides AND the tulips in our household – a constant balancing act.   

Crazy socks for World Down Syndrome Day 3.21 

(celebrating all the kiddos w/ 3 copies of the 21st chromosome)

 Boys at an Easter egg hunt at Aunt Kay's house

This last picture is so near & dear to my heart.  On March 25th, we went to Cincinnati to meet up with some special friends of ours.  We'd met them back at the RMH while Ellie was inpatient in Cincy and have since leaned on them for so much.  When we met this day, they were preparing for the memorial service/celebration of life for their sweet Khloe the very next day and we wouldn't be able to make it because of Easter plans and such.  We were able to set up a pizza date, though.  We were able to get our kiddos together and let the boys hang out while us parents shared hugs and stories and a few tears.  We were able to tell each other our favorite stories about Khloe and Ellie and about triumphant and frustrating times.  We talked about things that you can only share with people who have walked the steps of complicated kid world and asked the questions you can only ask inside of this safe bubble of trust and understanding.  All the while, our sweet boys played together and hung out in all of their innocence.  Sandy and Diana stared at Ellie... loving the fact that she was eating... with her MOUTH!  We laughed and loved on each other like friends do... and it was just what we all needed.  I'm not sure when we'll get to see this sweet family again, but I'm so thankful that we made this trip to see them in the midst of their very busy, very difficult weekend.  We were all very aware of the empty space among us that little ladybug should be filling.  We love and miss her dearly.  

Happy Leap Day... a catch up post

I realized today that I hadn’t updated y’all in two whole months.  I’m sorry for that.  I know I’ve said it before… but in the world of Miss Elizabeth Kate, no news is usually good news.  It usually means that momma has some sort of sanity and it usually means that bug is pretty healthy and doing well.  This holds true.  We’re wrapping up February – which in case you don’t follow me on FB, is Congenital Heart Defect awareness month.  At the beginning of the month I posted a sweet picture of Ellie in her favorite tutu (because yes, of course she has more than one).  She’s showing off her scars and sitting pretty with her heart pillows for her annual CHD Awareness photo.  I’m sure we’ll reach a point soon enough where we’ll encourage her to wear a shirt for the picture, but for now… shirtless toddlers are perfectly acceptable.  Here are a few more shots of other details that did not make it on FB.  Can you believe the difference from last year at this time?  I remember thinking how amazing she looked last year… sheesh… I had no idea what healthy looked like yet. 

In just a few days Ellie will be 18 months old.  When she had her 2^nd heart surgery in Boston, she was just a few days shy of 9 months old.  That means that Ellie has now officially lived just as many days (outside of my belly) with a whole heart as she lived with a busted up mess of a heart.  That’s something to celebrate in and of itself.  That is rock solid awesome!  And just for the sake of celebrations, we’re sharing an up-close shot of her battle scars (the ones on her chest, at least) to show you how beautifully they’ve healed in the past nine months.  Her sternum is bowed out, yes.  It will always be this way… it’ll be more camouflaged as she gets more muscle mass and (ahem) chest… but she will forever have a bowed sternum because she had what they call a compliant chest wall during her first open heart surgery.  The pressure in her chest cavity was so great that when they cut through her sternum the first time, it bowed her sternum outward and it healed that way.  It causes her no harm – so we’re not at all concerned with it.  Beautiful, right?

The vertical scar is from her open heart surgeries, of course.  The wonky spot on the lower left side of the picture is where she's had two chest tubes placed (1 for each surgery) to the right of it (left side of her belly) is where her second chest tube was placed in Boston (this scar is almost gone).  Below these scars, there are four smaller scars where her pacing wires were placed in Boston (the wires that literally kept her heart in rhythm for the seven days following surgery).  

Let’s see… what else is Ellie up to?  In January, she was supposed to get admitted for a few days so that we could work on getting her weaned off of the ventilator while she slept and maybe put onto cool mist with oxygen or something.  Her pulmonologist said that she doesn't seem to have trouble getting rid of CO2 while she sleeps, so he doesn't think she needs the pressure support of a ventilator.  She's still struggling with sleep apnea, though, so she'll need oxygen support during sleep.  So we're moving in that direction.  However, when we packed up and went into clinic for our appointment, he said that the IMCU and PICU were overflowing with RSV cases and that RSV is especially nasty this year.  He didn't want us anywhere near the critical care units and wanted us to stay away from "sick" areas of the hospital if we could.  We can't chance exposing Elz to RSV.  So instead of spending three or four days there weaning settings, he got us a spot in the sleep lab for the night and we made a tiny bit of progress weaning vent settings.  One step in the right direction... not the big leap we were hoping to make... but we'll take one healthy tiny step over RSV any day.  That's a no brainer.  Here are so adorable pics of Ellie getting another sleep study.  She's an old pro at these at this point.  

At least they left her pig tails!

Therapy notes:  A few weeks ago she learned to push herself up from a side lying position up to a sitting position.  This was met with incredible cheers from the Mommy cheering section.  I went absolutely wild!  I think I even scooped her up and gave her all kinds of smooches on her cheeks when she did this.  I know, I know… for all the other 17-month-olds out there, they’re doing all kinds of other things and sitting up seems like something that should have happened like nine months ago, but this is how things go for kiddos on modified development plans.  When milestones take longer to reach, they’re met with unbelievable fanfare, let me tell you.  About a week later, she discovered that she can lay in a prone position on the ground (on her belly) and take her little legs and windmill them around to both sides and push herself up to a sitting position.  From a biomechanics standpoint, this makes me cringe.  She’s such a cheater! 

I know this makes everyone think that she’d be really great at gymnastics… the thing is, though, is that the reason she can do this is a lack of muscle tone and extremely loose ligaments.  Ellie has hypotonia (low muscle tone) which makes it very hard for her to learn how to use her muscles.  This was best described to me as using your legs once they’ve fallen asleep.  Not the “pins and needles” painful part of it… more the cement/heavy feeling once your leg falls asleep.  You know how it’s hard to move it and it’s hard to feel where it is in space?  That’s how Ellie’s body feels to her all the time.  So she has to work much harder to make the simple movements that we do easily.  That’s why sitting up takes 17 months to figure out instead of 5 or 6.  That’s why she’s nowhere near standing on her own yet.  She’ll get there… but imagine learning to do all of the things you know how to do with body parts that are “sleeping” all the time… that’d be rough.  The second thing she’s constantly dealing with (which seems like awesome flexibility) is extremely loose ligaments.  We can fold Ellie in half and there is no resistance.  For real.  We do it, too… because it’s cute and fun.  She gets tired and lays her head on the carpet between her feet to take a nap.  She falls asleep in her stroller with her feet by her ears… it’s weird.  It cracks me up.  Since Ellie doesn’t have the muscle tone to support her joints, though, we have to be cautious with putting any force on her joints.  Before she built enough strength in her shoulder joints, we weren’t able to lift her by her arms at all because we could have easily dislocated her shoulders.  I’ve felt her wrists pop out of joint when putting shirts on her.  Super loose joints.  It’s just part of having Down syndrome… it also makes Ellie really soft and squishy and we love it.  We have to be a little more careful with how we handle her… but it also makes her more resilient, too.  I’d love to get her into some kind of gymnastics or dance at some point, but she has a long way to go in strengthening her muscles before she’ll be ready to take that on.  She will always have enviable flexibility, though, so we surely want to have her in a sport or activity where that strength of hers can shine.

Yes, that's her foot... on her head... while she's sleeping

My goal for Elz is to have her crawling (real “belly off the ground” crawling) at 18 months.  So as of today, I said, “Ellie… we have T minus 32 days for this crawling business, Sweets”.  I don’t want to say that I’m pushy, but I’m pushy… in a nice way.  I know that she’s thiiiissss close to crawling and I really think that with lots of effort on our part, we can help her meet this goal.  I’ll keep you posted on that.  She tolerates being on all fours well.  She manages to get onto all fours for a few seconds at a time on her own.  She has special therapy shorts that help her keep her knees together (instead of sprawling out to either side) and these seem to help her get onto all fours on her own.  We’re working on it.

She’s learning sign language well – and the boys love learning signs right along with her.  Right now, she is obsessed with shaking her head “no”.  It’s not just a simple little shake back and forth, it’s a big production that she has to brace her torso with her hands on her knees for.  She shakes it left and right… maybe six or more times to each side.  She’s an absolute riot.  You ask her a question and it doesn’t matter what the answer should be, she’s already made up her mind that she wants to say “no”.  And it’s so unbelievably adorable.  Have I mentioned how stubborn this little monster is yet?  You have no idea!  And she has personality for days.  We love this about her. 

Ornery much?

And just because I haven’t thrown enough random tangents your way yet… there was one day… right around New Years… a day that really struck me.  We were having a therapy session and our house was abuzz.  We had two therapists working with Ellie and Rae (her nurse) was helping out.  The boys were out of school on break and were trying to get as much attention as they could steal, too.  And I was desperately trying to take it all in.  We were in discussion about what Ellie was doing and how she was so unbelievably social (gets that one honestly) when her therapist said something that stopped me in my tracks.  “Ellie is so smart, you know that, momma?  She catches on to things so quickly.”  The whirlwind of that hour continued and our household swirled around me, but in that moment, I was taken back to the shell of a person that I was as I sat in my van in the parking lot of my OB’s office with Brandon.  We’d just gotten our Ds diagnosis and I was certain that we were going to have this little girl who was going to be wonderful… but who was going to be so limited and was going to miss out on so much.  In my mind that day, I had put so many boundaries on what I thought her life would be like.  Never in that moment did I imagine someone telling me that my little girl would be smart.  Never did I imagine them saying that she was a fast learner.  Never did I imagine… never did I imagine anything about my reality with Ellie.  This little girl is amazing.  She’s beautiful and smart… she’s full of endless joy.  She’s determined and has sass and personality and she is very much her own little (social) person… just like every other toddler I’ve ever met in my life.  There’s this whole other side to life when you are forced to take things a bit slower… when you’re waiting and waiting for milestones to come instead of whizzing through them without stopping to notice.  This life… this life is rich beyond measure… and that momma that wept in the van in the parking lot… I could have never described this to her.  The days can be painful and stressful, but all of motherhood is that way.  I wept in that parking lot because I was so afraid of the unknown… and I’m still afraid – don’t think for a second that I’m not.  But from what I’ve seen so far, things are going to work themselves out and this little ray of sunshine is going to keep me on my toes and bring more joy to my tomorrows than I can possibly imagine today.  Bring on tomorrow, baby!

The boys were making a train out of her therapy things.  

Kaleb was sad because he didn't want to be the caboose

Ellie's ready for summer... bring on the beach! 

 In January, Lance celebrated his 5th birthday!  Brandon & I try to give our boys a night out with us a few days a month (while Ellie is home with a nurse).  This night, Lance got to choose where to eat his birthday dinner.  He made sure every person at BWs knew it was his birthday. 

She got a tea set for Christmas.  The boys have tea parties with her all the time.  

They laugh at how she drinks her tea.  She likes to make them laugh!

Kaleb likes to take care of babies.  He's the sweetest.  He cuddled this baby and showed me exactly how to hold her and pat her and told me, "Mom, she's crying... you're doing it wrong".  My bad.  

One Year Later

A year ago today I sat in our room in CICU and anxiously awaited our meeting with the surgeon.  I had my little notebook ready with my list of questions.  I sat next to Ellie and gave her a little pep talk… the kid hadn’t been awake in nearly a day, but I was optimistic.  She was going to come through this surgery in two days with flying colors and we were going to move on to step two and step three and we were going to go home and yadda, yadda.  That was my plan and that’s what I was ready for.  Dr. Morales walked in and sat across from me (have I ever mentioned that he only came in and shared good news with us once?  Just once.)  Today was not that day.  Today was a day when he’d come in and talk to me and the very depths of my soul would pour out into a puddle on the floor in front of me and I would sit paralyzed in fear for what felt like an eternity… I'd stare down at my questions which were no longer relevant and then over at our daughter and fumble for my phone because I had to make an impossible call to my husband.  A year ago today was the worst day of my life as a parent… hands down.  It was the day when our surgeon walked into our hospital room and essentially told me that there was little hope for our baby girl.  He said that she was remarkable and exceptional in the worst possible ways.  That her little body was doing things that he’d never seen before… that “the likelihood of mortality is quite high, really”.  Those were his words.  Those were the words we had to process just a day and a half before her first major heart surgery.  Ick.  And I tried to find hope in the midst.  I said, “Well, if this doesn’t work, she can have a transplant, right?”.  No.  If this didn’t work… she couldn’t have the next step in her single ventricle repair, and without that, she couldn’t have the second step.  With the complications she was experiencing, she absolutely would not be eligible for a transplant, either.  At this point, our sweet girl would have been left to live what little life she had left with the very broken heart she had.  God had other plans, of course. 

I called Brandon and gave him the news.  My voice trembled through it all.  He fell silent on the other end and then began to weep and I could hear how this news broke a part of him deep inside.  To be honest with you all… that part is still very broken to this day.  I called my mom, too… but I couldn’t talk beyond that.  I spent the next day sobbing, listening to Matt Hammitt’s “All of Me” album, praying and crying out to God.  That night, out of complete exhaustion and total desperation, I took to this blog.  I wrote the “When being exceptional is a bad thing” post.  Thanks to Team Ellie Bug, that post remains the most popular post on this blog.  It was shared hundreds of times and there were thousands and thousands of hits to the blog in the 24 hours leading up to Ellie’s 1^st heart surgery on New Year’s Eve 2014. 

When they wheeled Ellie off to the OR that morning, I wasn’t sure if we’d get to see our baby girl again.  I was hopeful, of course.  I told them to bring her back to me… but I was so very afraid.  

When we arrived in B3 (the surgical waiting area in Cincinnati Children’s), the receptionist said that Dr. Morales had quoted our surgery at 600 minutes (ten hours), which meant that we’d be in the private waiting room.  Let me explain that only the longest surgery of the day gets the private room.  Our surgery was only supposed to be two to three hours.  At first, I was totally confused.  This was nice, because it meant that our family could all sit together and have some privacy… but later I realized that maybe our surgeon didn’t think Ellie was going to make if off of that operating table that day.  I think he over-quoted her surgery (by a LOT) because he thought we’d need that private room that day.  One of our best CICU buds, Jameson Locklear (Abby’s dad) popped into the room to wait with us.  This was one of the nicest things anyone ever did for us while we were in the hospital.  He’s been in this position with his Aberdeen.  He knows what it’s like to wait for your child while they’re in surgery… he knew how serious Ellie’s condition was… and he stood in the gap for us that day.  This is why these people mean so much to us!!

A few hours later, Dr. Morales came into that private room with a look on his face that I can only describe to you as shock.  He was shocked!  Ellie blew him away with how well she responded to surgery.  That’s my girl!  Heart surgeries are rated on a scale of 1 to 6.  The PA band surgery she had on New Year’s Eve last year was a 4 on that scale.  A heart transplant is a 5.  What Ellie had done in Boston in May is a solid 6.  What happened on New Year’s Eve last year was nothing short of a miracle for our family.  Our little girl was incredibly sick… so sick that a world-class surgeon was pretty certain that she wasn’t going to make it off the table.  She shocked the hell out of him.  That’s how she rolls! 

Can I tell you how thankful I am that December is almost over?  I never like to wish time away… but the first 4 months of Ellie’s life were really hard months.  As we lived those days, we had to mentally process and move forward.  We had to take it in and go, go, go.  This year, I was living with constant flashbacks of those memories.  On Thanksgiving I remember thinking, “this is when we finally had a team from neuro in our room to diagnose storming” and on 12/3 it was “this was the day of her first heart cath/ MRI/ scoping procedures".  December 12^th marked her first major surgeries when she went in for her g tube and her trach.  Big stuff.  The first four months were hard... but December 2014 was HUGE.  December 2015 was so much fun.  Ellie is a riot these days.  She’s stubborn.  She’s learning to try so many new foods.  She’s playing with her brothers and she loves that they’re not so good at being gentle with her – you can see in her eyes that she so badly wants to wrestle with them.  She spent Christmas at home (hallelujah!) and found out that wrapping paper is way more fun than presents.  She gets to have family movie nights with us and is practicing standing in therapy.  She’s learning to army crawl across the floor and when I had her in church this weekend (for the first time since October), she was so full of it.  She’s beginning to act more like a toddler than a baby and I’m in love with this stage.  She loves to make faces at herself in her mirror and bats her eyes to flirt.

I look at her now and I’m flooded with thankfulness.  Thankfulness for never giving up hope.  Thankfulness for all of you who have lifted her in prayer since day one.  Thankfulness for the countless people who had helped medically, professionally, spiritually, financially, personally along our path.  The days have been long at times – but 365 days later – gosh, what a difference a year makes.  What a joyous place we're in now.  This place still has its struggles… it still has hills and valleys, for sure… but how do you measure the progress made in one year??  Now I want to break out into song… “five hundred twenty five thousand six hundred minutes” (that’s from the musical, RENT, for those of you who don’t know).  I’ll just leave that right there for ya.

Much love to you all.  I hope you all had a wonderful Christmas.  I hope you were able to spend time with the ones you love and hope you got to fill your bellies with something delightful.  I hope you have a safe New Years.  Nothing will ever compare to the celebration we had on New Year’s Eve of 2014… but we’ll be celebrating as a family and hope to have a safe and happy New Year’s Eve of 2015, all the same.  Stay safe out there… and if you’re a fellow Ohioan, try to stay dry, too.  Ick.

A close-up so you can admire her curl over her ear :)  When she's tired, she sucks her thumb and twirls her hair... it's pretty much the cutest thing ever.

Rocking with Grandpa on Christmas

Showing her older cousins how this keyboarding thing goes

Giving me her stink face while she practices standing with Rae.  

Notice the shoes, please... they're adorable!

Showing Great Grandma how much she likes her new books

Cuddles with Papaw on Christmas... with Kaleb being ridiculous

Stand by me

These past few months I’ve found myself heaving towards things that I haven’t been drawn to in a long time… things (errr… people) that I should have been drawn to all along but I’ve really not treated with the kind of reverence that I should have in the past.  See, I was raised with parents who were truly Heaven’s manna for each other.  They’ve worked together since they were in their early 20s and they’ve spent nearly every waking hour with each other through their entire marriage.  They seemed to be all that each other ever needed in life.  That’s the example I had before me and I thought that was how the relationship world worked.  It’s worked beautifully for them – I’m not blaming them – good golly… they set a beautiful example for me, I just approached relationships with a “go all in” attitude… which wasn’t exactly right for me.  So from the time I started to have real relationships… say, about my sophomore year of high school, I put my significant other ahead of my friends and let those friendships subside to these relationships that I was forming.  What did this make me?  A crappy friend.  It did.  Plain and simple. 

I love my husband dearly, but I’ve expected him to fulfill all of the needs I have from a relationship standpoint – I mean, aside from the super strong bonds I have with my immediate family.  Ladies… that’s just not possible, right?  Thankfully, during this very difficult last year of mine, these lovely friends in my life have shown me something that I surely do not deserve.  Grace.  I have not done a single thing in the past, oh, ten to twelve years to deserve the kind of friendships that are still being extended to me by the group of girls that I’m happy to call my friends (new friends, old friends, work friends, church friends, RMH/CICU friends... lots of rock-my-face-off awesome people).  But by God, I’m so thankful for the grace they’re giving me.  I’m so thankful that I have people to turn to when this business of marriage and motherhood and life is just… whoa!

 

Back in October, I had a girls’ weekend with my sisters (when I say “sisters” this always includes my sister-in-law) and we had some great bonding time… some time to relax, enjoy some laughs… let go of frustrations… and just draw nearer to one another.  In November, I had a girls’ night with friends from high school.  It was downright hilarious.  We spent hours catching up… mostly talking about the struggles and how important it is to be real and honest and raw about life and motherhood and marriage.  Since then, I’ve been reflecting on old relationships, relatively new relationships… ones from church and work and the RMH and wherever and gathered some thoughts.  Here is my best effort to extend some of that grace to you… in the most important time of year for grace and peace and stress relief.

First - life is hard.  Marriage is hard.  Parenting is hard.  Anyone who tells you differently is lying.  There are wonderful things, absolutely.  Don’t think that it’s all a drag.  It is all worth it.  Life is beautiful and wonderful… but it’s also messy and there are hills and valleys.  And sometimes those valleys can seem never ending and sometimes there are lakes where you nearly drown in those valleys… sometimes you get stuck on islands in those valleys… and if you don’t have someone that paddles out to your island, you have no idea that there are even others out there who understand.  Okay… let me dive in a bit.

For me, I personally loved being pregnant (I'm not now... sheesh... NO)… but the first trimester and the last month of it were the absolute worst.  There… I said it.  When I was about to have Lance, my cousin asked me if I was going to nurse.  I excitedly said, “Yes”.  She said, “Awesome.  Just know that you’re going to want to give up every single day for the first month.  Once you’re past that… it’s great.  But the first month is terrible.”  I couldn’t believe that she said that.  I thought, “how dare you make it sound so awful when it’s this amazing natural thing?”  Then I had Lance and started on the journey of breastfeeding.  Know what?  She was dead right.  I cried and wanted to quit every… single… day.  But her honest words hung out in the back of my mind.  Finally, at about three and a half weeks, the kid figured it out and nursing really did become an enjoyable thing for both of us for the next ten months.  There is no doubt in my mind that I would have thrown in the towel after the first week had she not told me how awful it would be, though.  All I had heard from other people was that it was great and natural and this perfect bond.  Lies. 

When I had Kaleb, I thought, “We’ll be fine… we’ve done this before… how hard can it be to bring home a second baby?”  Let me tell you – REALLY FREAKING HARD!  He was almost three weeks old and I was completely losing my mind.  People would come over and smile and hold him and I would smile and act like we were doing great.  I barely scraped myself together to get out of the house to make it to a friend’s bridal shower dinner.  I know I had milk stains on my shirt and unbelievable bags under my eyes.  I tried to look put-together, though.  Tried to put on the, “things are great” look.  One of my friends said to me, “It’s really hard, isn’t it?  Bringing that second baby home?”  Ahhhh… finally… someone lifted that weight… someone understood and it was okay to be broken and messy and not have it together.  “YES!” I said.  What a relief. 

It’s small things like these in my life that I remember so vividly where people have extended grace to me in the simplest ways.  When I’ve gone out in public for the first time with a new baby and people have said, “You look great!” despite spit up and milk stains on my shirt.  It’s the time when we’d just met our new pastor last May and I stood in the aisle with Ellie (and all of her equipment), shaking… ready to make a trip to Boston that (we desperately hoped) would save her life and he simply said, “let people see your pain”.  Boy… he didn’t know how much I would wear this mess on my sleeve, did he?  Ha!

My point here is, I’m going to do my best to be that transparent person for others.  If you’re looking for the friend who has it all together… I’m not your girl.  If you’re looking for the friend who has a family that functions perfectly – not her, either.  If you’re looking for advice on how to have a rock solid marriage, I’m probably not the best friend to ask.  I have a lot of fun with my kids, but I yell, too.  I cuss.  I have thoughts that cross my mind that would make about anyone blush… and I sometimes need medication to make it through the day (okay… like, always).  I get depressed… I get angry… I’m human, y’all.  I also laugh.. like, always… sometimes until laughter almost runs down my leg.  (dang, kids)

But hey… if you’re the mom who’s in Walmart with a hat on because you haven’t made it into the shower yet… I’ll give you the “I get it” wink.  If your child is having an epic meltdown, I may even touch your arm and say, “I understand”.  If you’re weeping at the altar at church… hey, I do that all the time.  If you’re having a nervous breakdown – I get that, too.  If you’re having an amazing day, I’ve actually had plenty of those, I like those.  Share your joy too, of course… geesh… we’d be a hot mess if people didn’t share that beautifulness every day.  But if you haven’t experienced any of the messy hard stuff in your life… we can’t be friends.

For real, though… at a time of year when everyone else wants to act like life is grand and they have so much going for them and they’re uber generous and yadda, yadda, yadda.  I get it that most of us are just getting by.  Just chugging along.  And thanking God every single day for the people in our lives that show us His grace when we don’t deserve it.  If it helps to have someone to just stand next to you and be a beautiful mess with, I’m there for you.  Go out and share some love today… make some plans with old friends… perform some random acts of kindness (that you DON’T share on FB).  Make someone’s day.  Trust me, it’s the little things you do… the things you likely don’t even remember doing or saying… that make the biggest difference in the lives of others.  Kindness matters.  Thank you all for being there for us.  A big, HUGE thank you to all the friends who have not given up on me even in the days/weeks/months/years when I was a crap-tastic friend in return.  I’m deeply sorry for that and I look forward to spending the rest of my life enjoying your raw, honest company and being the friend I should have been all along.  Merry Christmas!  

Seesters

Old Frans

PS - Our Buggles is amazing right now - healthy and adorable.  I'll post on her soon, I promise.  Emotionally, these last months have been really hard for me... we're rounding anniversaries of some of our hardest days with her (well - except for the whole month of May).  This Saturday will be one year since she got her trach and g-tube.  December 2014 was awful.  December 2015 is pretty awesome so far.  You probably won't see her out in public much at all until cold/flu season is over... I think that's the primary reason we've been able to keep her home & healthy for so long... we just can't risk it.  I promise to post something soon... just know that she's doing well and the boys are doing well - stressing their momma out, but that's their job.  :)

Battling unwelcome demons

No – that does not refer to Ellie.  Our sweet girl is doing rather well these days.  Praise God!  She is eating like a champ right now, too.  In fact, we’ve been given the green light to take away two of her five daily tube feeds because she’s doing so well eating by mouth that we’ve replaced those calories.  I’m in no hurry to pull her G tube.  That baby is just waaaayyyy too nice to have when Ellie is sick.  If we want to push Pedialyte while she sleeps to keep her hydrated, we can.  If we want to slow down the rate of her feeds because she’s not tolerating them, we can.  If we just need to get food in her when she’s barely awake all day… or need to push nasty tasting meds, it’s not a problem.  Sooo… the tubie is my friend and while I’m thrilled that Ellie has a healthy appetite and she’s taking lots of foods by mouth, I’m in no rush to get rid of her tube. 

She’s progressing well in physical and occupational therapy.  She’s kind of a rock star all around.  Her swallow study that she had earlier this month went beautifully… no concerns at all.  She also had a sleep study… we’ll get results next week.  The sleep study will determine if she’s ready to be off of the ventilator at night.  This would be a huge step for us.  If she’s ready for that, we can start to work on capping her trach during the day (which would mean she’d be moving all of her air in AND out of her mouth).  Her speaking valve allows her to breathe in her trach, but out of her mouth.  Capping it would be a whole new battle… but hopefully a smooth transition for Ellie.  Once we’re to that point, we can look at a capped sleep study… and if that’s great… surgery and decannulation (removal of her trach).  Please know that this is assuming the best possible scenario over those four big transitions… and those transitions each take quite a while.  But it’s progress in the right direction, at least.  We know that Ellie will need a pretty big surgery on her trachea before decannulation is even a far off thought.  The earliest they’ll think about doing surgery (assuming all aforementioned steps are successful) is next summer.  They really only do the surgery in the summer because of the risk of infection during the school year.  So… if Ellie is going to be trach free by her 2^nd birthday, we have to keep pressing forward on all of these steps and we need to stay on top of progress.  One step at a time… one step at a time.  But that’s the overall goal, just so you know.

 Our happy girl just before her 2nd sedated procedure in September.

Can you feel her joy?

She’s been semi-healthy lately… healthy in Ellie’s standards, at least.  Her 1^st outpatient procedure just after her birthday landed her in the PICU again.  There was a tear in the lining of her trachea, making the risk of infection high.  She shocked her ENT when she was doing so well the next day.  He told us to go ahead and go home (we were supposed to stay for a week), but to keep her isolated for the week.  We have all of the equipment (and staff) on hand at home to handle quite a bit, which is a huge relief.  It’s much safer for her to be home and just exposed to the germs that are in our home than to be in a hospital full of sick people.  We’ve also dealt with a few bouts of c diff lately (with Ellie).  C diff is scary stuff.  Because she has to be on antibiotics so often, the good bacteria gets wiped out and nasty stuff like c diff has the opportunity to take over.  No good.  We keep her isolated in the house when this happens, too.  So we’ve been hermits here and there for the last few weeks, but we’re doing our best to keep her healthy and keep her safe from others’ germs while also keeping her icky germs away from public places when she’s sick.  Always an adventure, right?

She’s had her birthday celebration, a trip down to the Ronald McDonald House, countless appointments and tests, two procedures, big accomplishments in PT and OT, HUGE progress in oral intake, and more smiles than we could possibly account for in these past weeks.  I’ve been slow to update… for that, I’m sorry.

That brings me to the next portion… and it is hard for me to write these words.  It’s been incredibly difficult for me to blog lately because I’m battling some serious demons in my head.  I’m not kidding.  I’m dealing with a lot of displaced anger… the simplest things are cutting me deep these days.  Between anger and isolation, I don’t always know how to feel or what to say.  I feel like an island most days.  Blah.

We’ve spent the last year living moment to moment.  We had to be present at all times.  We had to be alert and had to stay on top of everything.  We… changing this to “I” because I don’t want to throw Brandon under the bus here… I had to take it all in.  Everything.  Ellie went through a lot in the last year and every day, I was living in the moment and taking in what was being thrown at me that day… processing it mentally and moving forward.  A year ago, Ellie started storming for the first time.  I didn’t know what was going on, but I was diligent.  I took notes, I wrote down details of symptoms and did research.  I was frustrated for six weeks before we had an answer to something that was so scary (I know many people wait a lifetime for answers… and I can’t imagine, because six weeks was exhausting).  I sat in rooms full of beeps and montiors for months – I lost more nights of sleep than I got.  I prayed feverishly, I heard a world class surgeon tell me that my daughter would likely die in the operating room a few days before her first heart surgery.  I endured and endured and endured.  Was it all worth it?  You bet!  Did we end up with a huge miracle at the end?  Absolutely.  Am I grateful each and every day that the light in the Ronald McDonald House was never lit in memory of my sweet girl?  I praise God every day for that.  But did I deal with the stress and pressure of it all as it was happening?  Not at all. 

Over the past two months, my mind and body have finally started to cope with what we’ve been through with Ellie.  I praise God that Ellie is too young to ever remember what has happened to her.  But me… my scars are becoming more visible each and every day.  This kind of trauma takes its toll.  I’m realizing now how much of a toll it’s taking.  Some days I’m battling mild depression… some days I just want to quit at parenting or marriage… my head and body ache from extreme amounts of tension surging through the muscles in my neck and shoulders (ask my chiropractor and neurologist… I’m a mess).  Some days I sit like a vacant shell of who I used to be because there’s a lot of anger and loneliness involved in this journey.  There are many days where I feel like the only people who truly understand what this feels like are so far away (those that we met in the Ronald McDonald House).  And there are many days when I don’t feel like I can unload this burden on them because a handful of those moms are dealing with life without their child… and that’s more than I could ever imagine. 

I guess I’m unloading this now because it’s time for healing.  It’s time to recognize that I’m angry that some people can pick up and go on a whim.  I’m jealous that some people can call a neighbor, family member, friend, etc. to watch their kids for them while they go do something.  No one can watch Ellie… no one… well, except her nurses.  I am even angry when I see other kids doing so much more than Ellie is.  Don’t get me wrong, I’m not angry AT other people… I’m angry that we aren’t those people anymore.  I feel alone in that very few people understand this struggle… or maybe I’m not listening hard enough to those around me who DO understand. 

And on top of this, I’m angry at myself for being angry… I’m angry at myself for not always feeling blessed.  I know in my heart that we’re incredibly blessed.  I know that Ellie’s situation is as good as it could possibly be.  I know that she’s a survivor in a world that’s so dark and scary.  So many babies have gone before her to their forever homes in heaven.  Why can’t I be overjoyed?  I’m not sure.  I AM happy, I AM thankful… but part of me is very broken right now… part of me is very lonely and sad.  Part of me wants to run away and hide.  If you’ve seen me in the past few months and thought I’ve seemed vacant, I have.  If you see me in the next few weeks and think I’m acting weird… I probably am.  I’m a busted up mess physically, emotional, spiritually.  I’m working on it… but please, be patient with me.  Know that I love you all dearly and that I’m trying to cope.  I’m trying to find my way again… find that giddy hope and carefree happiness that I used to have.  It’s gone right now, though… and I’m kind of fragile.  If you see my husband, thank him for being incredibly strong for me.  He gets the brunt of my moodiness, anger and doubt.  This road has turns and dips that I couldn’t have imagined before.  This road has darkness even when things are going so well.  This is not somewhere I ever thought I would be… but I’m here.  I’m sharing this to raise awareness of the baggage that comes with trauma.  I know other people feel this… which is sort of comforting, but painful, too.  I know others who have been in a similar pit and are doing better… so there’s hope in that.  There is just so much that has happened that I wasn’t able to process in the moment.  I’m thankful today that we have a time of calm… even if that means that it’s a time when the demons can surface.  Pray for us as we battle these demons, please.  I know there is light at the end of this tunnel.  I know it.

Okay – thank you for letting me unload that heavy darkness.  I do have some light and happy photos of our happenings to share if I haven’t bummed you out too much to enjoy:

Every tubie should have a cupcake pad for their birthday, right?

Serving brunch at the RMH.  Thank you to all of Team Ellie Bug for supporting us.  We brought down nearly 50 gifts for the other children, plus financial donations and a few gallons of pop tabs... thanks to YOU.  You're the best!! 

Little victories:  she can finally sit up in a shopping cart.  Yahoo!  No more infant seat for us.

BIG victory:  drinking from a straw.  This took 4 months of work, y'all... she's amazing.

Selfies before her 1st outpatient procedure in September... didn't go as planned and we were admitted.  Dang it.  She's such a stinker.

When we were allowed to come home early from the PICU, we had to hunker down for a week until her follow-up procedure.  We could take her out of the house... but couldn't go to stores or church or anywhere else where she'd be exposed to many people.  We had a family movie night, played at the park, took school pictures of the kids... hermit stuff.

A very special balloon release for a very special little boy's 11th birthday.  

We love you and miss you every day, Jared.

Ellie's ENT, Dr. Elluru, giving her a pep talk before her 2nd procedure.  He said she was too cute to ride in the crib to the OR, she was carried.  We love this team!

Ellie's 1st Buddy Walk.  How awesome!  

She was given a plaque for being the youngest buddy in attendance.

 Playing with toys waiting for her GI appointment.  This girl had 6 appointments and 1 day-long procedure this week.  Talk about exhausting!

All wrapped up for her sleep study.  We had to send this pic to her buddy Tillery.  

Tillery rocks head wraps in the most adorable way.

Guess she found something interesting between her toes

A superhero bash at Steinke Family Chiropractic.

Ellie giving Aunt Nicki some snuggles at Fall Fest

 Ummm... isn't she the cutest Raggedy Ann in the world?

 

The whole fam at our 1st Halloween party of the season.  We have: Carmen San Diego & Waldo, a Ghostbuster, Inspector Gadget, and sweet lil Raggedy Ann