My letter for H.B. 332

This is my letter that I wrote as our testimonial for House Bill 332:

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October 9, 2017

Chair Huffman, Vice-Chair Gavarone, Ranking Member Antonio, and Members of the Health Committee:

Thank you for allowing me to provide sponsor testimony on House Bill 332, which would ensure that individuals with disabilities will not be banned from an organ transplant waitlist solely based on their disability.

I was approached by Courtney Hansen after hearing of the proposal of Ohio House Bill 332 and wanted to share our story and put a face with the impact of this bill.  We found out that our unborn child would have Down syndrome in the spring of 2014.  Suddenly, the hopes and dreams I had for my child came crashing down around me.  I hadn’t had much interaction with anyone with Down syndrome in my personal life and honestly didn’t see past that diagnosis at all.  A month later, we found out that our daughter, Ellie, also had a severe heart defect that would require at least one open heart surgery to repair.  I knew from the day of our diagnosis that I’d have to become an advocate for our child – I had no idea that I would have to advocate to show the world that her life was worth living.

Ellie arrived that September and was out to show the world that impossible was nothing.  She was closely monitored from day one by her pediatrician and cardiologist.  When Ellie was just two weeks old, she went into heart failure.  At one month old, she was admitted for failure to thrive and congestive heart failure.  Her battle had begun – as did ours.  At two months old, we found out that Ellie’s heart defects were more complex than we’d imagined and we tossed around the idea of three surgeries now and a possible heart transplant in her future.  The next month brought a trach and g tube, several more tests, and a heart cath.  By Christmas, Ellie was spending her days in the Cardiac ICU and was only awake for a few hours each day.  She was in the depths of heart failure.  We prayed over her every night, begging her to be here in the morning.  She’d get another pep talk each morning, begging her to power through so that Daddy could see her when he came back after work.  Every day was spent fighting for her – making sure that there was a future for our daughter.

She was scheduled for her first open heart surgery on December 31st.  On the 28th, I came into a meeting with her surgeon prepared with notes and questions and a plan.  He told me that she was extraordinary, but in the worst ways.  Her little body likely wouldn’t make it out of the OR.  His words were, “the risks here are steep – the chance of mortality is quite high for her”.  He explained the surgery and what he’d be doing.  He’d be placing a band around her pulmonary arteries to try to prevent permanent damage to her lungs.  He wouldn’t be able to do more right now because of the risks revealed in her heart cath.  I looked down at my list of questions… none of which were relevant anymore.  I asked about future surgeries, he said that unless this first surgery was wildly successful, which was doubtful, he wouldn’t be able to do step 2 or step 3 in her repair.  I said, “Okay, then she can have a transplant.”

“No,” he said, “she wouldn’t be eligible for a transplant, because she has Down syndrome and a host of other complications.”  She would likely be sent home to live out the remainder of her short life with the broken heart she had.

The depths of my soul pooled out of me and gathered like a puddle on the floor.  How could her life not be worth saving?  How could her future not be worth exploring every option?  What in the world does having Down syndrome have to do with access to a transplant?

To his surprise, Ellie pulled through her first heart surgery like a champ.  She was given a few months of extra time.  It was now up to us to figure out a way to get Ellie the surgery that she needed to move forward – a surgery with a future and a life.  We looked into pediatric cardiothoracic programs across the country.  We had others refer us to Boston.

When we were finally discharged after four months inpatient, we went to see our cardiologist right away.  She helped us gather our files and test results and she got her foot in the door at Boston Children’s Hospital.  Ellie would undergo her second open heart surgery just two months later.  At the time of her second heart surgery, Ellie was again in the hollows of heart failure – ventilator dependent, fed strictly by her g tube, and spending her days sleeping and sweating.  The surgeon went in and used part of her pericardium (the sack around her heart) to build a septum in her heart and construct a mitral and tricuspid valve.  He removed her PA band.  In six hours, our daughter had a whole heart.  She came through her second heart surgery and had pink little lips for the first time in her life.  Ellie didn’t end up needing a transplant, but congenital heart defects are never gone.  They can be repaired, but her heart will never be like mine.  There is always a chance that she will need additional surgeries in the future – always a chance that a transplant will again be on the table.  While we don’t have to think about a transplant today, so many of the other families we met in the hospital are looking at that option.  So many of them have been told by multiple hospitals across the country that their child was not eligible for the transplant list because of their disability.  If we have to face this again down the road, I’m counting on you to make sure that her disability will not stand in the way of her getting the treatment she deserves.

Ellie just celebrated her third birthday.  She is in preschool and loves to dance.  She’s been in fashion shows and on billboards.  She knows over 120 words in sign language and is learning more and more verbal words every day.  Her brothers adore her and we cannot imagine our lives without the joy she brings to our days. 

I’m asking you to make sure that other families have this same opportunity.  We all deserve the watch our children grow up.  We all deserve the right to equal medical care and opportunities for all treatments.  Denying a transplant to someone because their life is deemed less valuable is absolutely unacceptable.

As Courtney reminded you, six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have unanimously passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.  Let Ohio be next.

Adults and children with disabilities in need of an organ transplant should be afforded greater legal protection. Their lives are inherently worth saving. Thank you for your support of H.B. 332.

Warm Regards,

Jackie Ward

Miami Valley Down Syndrome Association

Community Engagement Coordinator

This Face

When I was pregnant with Ellie, I was so concerned that she wouldn’t look like the rest of our family.  When she was little(r), I was always a bit anxious in public because I was worried that people would see a diagnosis immediately and miss this beautiful baby.  Soon enough, that fear morphed to them seeing medical equipment instead of a child at all.  But there’s something about this that changed over time.  I used to ache for her to be viewed as typical… I was so afraid of someone labeling Ellie before they knew anything about her.  This is different now, but I’m not sure what changed, how, or when. 

I’ve heard so much chatter in the Down syndrome community in the last few months on this very topic, and I’ve been reflecting on it lately.  Today, I thank God for a diagnosis that she wears on her face.  How odd is that?  The label that I didn’t want to be so visible to the world three years ago is worn as a badge of honor today.  I’m thankful for this face that looks different than other faces, but so much like my own, at the same time.  I’m thankful for this face because it’s a face that draws other in, it’s a face that symbolizes a community of support that I never knew before.  It’s a face that others recognize, but not for the pity or sadness that I used to envision.  Yes, there are people who look at Ellie and look away, not knowing what to say.  I’ve come to terms with those looks.  But there are others who see her that relate so well.  Others that see her and are visibly filled with joy.

For example, we went to the Troy Farmer’s Market this morning to pick up raffle items for our walk next week.  As I stood there chatting with my friend, I saw an adult with Down syndrome walking down the street, very confidently, interacting with the different vendors as she went.  As we left the stand and continued down the strip of vendors, we came upon a booth selling beautiful handmade soaps, where I saw that sweet face again.  Another woman at this booth made her way around that table and said, “I just have to meet you”.  I shook her hand and she explained, “This is my daughter, Ellie, and she just came up and said, ‘Mom, there’s a little girl with Down syndrome over there and I think her name is Ellie, too’”.  What??  I then extended my hand to this twenty-five year old Ellie and spoke a bit with her.  She was sweet and kind, her momma just the same.  She had heard my boys saying Ellie's name and had to share with her mom.  The mom asked a few questions and then said, “Wait… this is a trach, right?" (pause)  "Do you know the Adams?” 

“Kenny and Connie, yes I know them.” 

“Oh… this is the Ellie I’ve been praying for.  I’m so happy to finally meet you.”

Wow!  This is the beauty of community.  This is the beauty of small town living and also the beauty of a diagnosis worn on a face.  We would have never met had her Ellie not spotted mine.  Knowing the struggles that she’d gone through, this momma has been praying for our Ellie for all of her three years of life… and I never knew.  As crazy as it sounds, this is not the first time we’ve had an encounter like this.  We’ve had several.  Thanks to this blog and its faithful readers, our story has been shared with others who have no idea who we are.  We met a family while we were out to eat once and they kindly asked questions about all three of our kids.  As soon as we introduced Ellie, they said, “Wait, is this the little girl from Adventures with Ellie?”  I have no idea what my face said in that moment, but I was pleasantly surprised that they, too, were reading about our journey and again, praying for our family. 

Since we were in Cincinnati, I started to reach out to other parents when I’d see a child with Down syndrome.  I’m sure this was incredibly awkward for them because I know I stumbled over my words at the time.  They were gracious, nonetheless.  I saw a sweet little boy in a stroller in the kitchen once and sought out his mom.  I said, “Is this your son?  Does he have Down syndrome?”  Her face was a little skeptical until I said, “My daughter… she has Down syndrome, too”.  Instant relief on both our parts.  I did this again a month or so later when I met a handsome young boy and his momma on the playground at the Ronald McDonald House… and again when we were waiting for a table at Red Robin with our boys.  I always have to throw in the caveat, “my daughter does, too”… but I’m getting better at this greeting.  As much as I didn’t want people to assume anything about Ellie from her face, I get super excited when I meet another person with Down syndrome today.  At some point, I embraced this face of hers and knew that it meant I had instant access to this new world.  A doorway that opened up to a secret garden of incredible souls who have the same trials, hardships, joy, and beauty that I see every day. 

All of that being said, I want to take some time to thank each and every one of you for following along, for praying for us, and for sharing our story.  I have so many other families from all over that I follow because someone shared their journey.  We’re thankful for the community we have, but also for the vast virtual community we’ve established, too.  And in case you don’t already, I give you full permission to use Ellie as your gateway to this community, too.  You are granted permission (not that you ever needed it) to ask a stranger about Down syndrome and you’re allowed to use, “My granddaughter/friend/niece/cousin has Down syndrome, too… and she’s wonderful”.  There’s so much beauty in this face… and I’m thankful for her face that is the same, yet so very different from mine.  Have a wonderful weekend, y’all!

I have to run... Ellie just climbed into the dish washer.  Such is life.

This FACE!!

Ellie, Uncle Josh, and Ethan at Lance's race last weekend

Visitor lunch day at school on Friday.  Lance was happy to have us and sit with this cousin, Jack

The five little boys of our family... yes, they're crazy... yes, they're all boy!

Lance, Jake, Kaleb, Noah, and Ethan

School, birthday, life... a little bit of it all

Oh, goodness.  I’m just throwing it out there that from now on, we’re going to plan our philanthropic adventures for the end of the school year and honor Ellie’s heartiversary instead of her birthday.  What were we thinking?  Or maybe we’ll just space things out throughout the year.  Ha!  Well, actually, we got delayed on sending things to Boston for her heartiversary, so we decided to lump them in with her birthday outreach.  Silly us.  So we made the trek down to Cincy while we were in the midst of getting ready for a holiday weekend and camping, getting ready for her birthday, bringing gifts down to Cincy, sending gifts off to Boston, making a meal for the Cincy RMH, collecting a wheelbarrow full of pop tabs, and getting letters out to her medical team thanking them that we get to have another birthday for our bug.  I seriously overshot that a bit.  We got it done, though.  Remind me next spring to spread this all out a little better, though, will ya?

Oh yeah, and four of our five family members started school the week before all of the above shenanigans.  This is exciting stuff, though.  We have literally been working with our care team for almost a year making sure that things were in place and ready for us to transition Ellie into preschool.  I’ve been excited about this for several reasons, but mostly because for the first time, Ellie gets a chance to just be a kid for 2.5 hours a day, four days a week.  We pushed back on nursing hours to make sure that she’d go to school without the 1:1 attention she’s always gotten.  Don’t get me wrong, we love the fact that she’s had 1:1 care from the time we brought her home with a trach, but now that she’s pretty stable, I think it’s safe to have a nurse just down the hall instead of sitting with her through her day.  I want her to interact with other classmates to get what she wants.  I want her to interact with her teacher and para and learn to do the classroom routine just as everyone else does.  Is this a little reckless?  Maybe.  But dang it, I feel like we need to push out of the safety zone to socialize Ellie in a way that is best for her overall development.  She adores her nurses.  For anyone that’s watched her play with them and love on them – it’s amazing.  There are times when she reaches out for her nurse over me (which, yes, breaks my heart).  But now that she’s preschool age, she needs to start reaching out to other kids, too. 

I was pumped to get this rolling – until I made the drive to her open house two days before school started.  We were about half-way to school and I started to panic.  The immense anxiety started welling up in my eyes and burning down my cheeks.  I had the three kiddos behind me, so I tried to have a silent meltdown.  We met Brandon at the school and our nurse came, too.  As B came up to my window, he could see that I was freaking out and said, “breathe Jackie… just breathe… I’ll handle it”.  Thank God for that man.  I was hoping I’d pull it together before we entered the school, but I was still shaky.  When we entered her classroom and saw ten staff members there to go over her care with us, I lost it again.  Dang it.  I try not to do this in front of others.  Fortunately, I can count on one hand the number of panic attacks I’ve had where I’m completely useless – but this was one.  I can’t imagine living with that daily.  We made it through open house and continued through our super busy afternoon (Ellie’s open house, Kaleb’s open house, a few hours to wrap up my work day, closing on an investment property, then Lance’s open house in Anna).  We had one day left of summer, then back to school for the kiddos.

The boys left early on that Wednesday morning and Ellie boarded her big yellow bus around noon.  She was happy about it, signed “ready”, and then waved goodbye to me.  I sobbed when that bus left our driveway.  I felt like there was so much about her that we know (meaning B and I and her home health nurses), but communicating all of that to others and trusting that she’ll be fine away from you is really hard.  Fortunately, her team at school knew I’d be having a hard day and really went above and beyond to make it all better.  Her OT sent me a message to let me know things were going great.  Her teacher sent me a message and a photo of her playing, and her school nurse sent me a message to update on how care went and that she had a great first day.  Ahhhh… can I tell you for the thousandth time that I love Shelby Hills?  On top of this, my tribe of other moms who have been or are in the same boat also reached out.  I honestly don’t know where I’d be without these moms – you know who you are J.  You make this crazy lady feel normalish even on my worst days. 

Ellie did have a great first day of school and I unloaded her from the bus at 3:30.  She has already grown so much in the first few weeks of school – I know that we made the right decision sending her this year.  I know that she’s adjusting well, even though she has a hard time staying in line and likes to plop herself down in the middle of the hallway sometimes.  I then went to pick up Lance, who loved his first day, but had a hard time listening.  He’s had much better days since the first one.  I’m thankful for his teacher that reaches out, too.  Finally, I went to get Kaleb.  This is his first year being gone all day.  He gets dropped off at daycare before 8am, then goes to preschool in the afternoon, and is picked back up around 4pm.  When I picked him up on that first day, he was on the playground with the other daycare kids.  He ran up to me and hugged me, telling me he’d had a great day.  Then as we walked towards the parking lot, he started to cry and held my leg.  I said, “What’s wrong buddy, I thought you had a good day?”  He said, “I did, Mommy, I just missed you the whole time”.  Same, sweet boy, same.

Can I share two stories with you that break my heart, but also warm it?  Now… before I start, know that our whole family is a hot mess most days… we have awful times, we have ugly times, we have messy times… but I like to focus on some of the times when my heart is broken in a good way… so here are two stories – normal days in our lives:

During the second week of school, Ellie rode the bus in and then stood in the middle of the gym and cried one day.  She was overwhelmed for whatever reason.  Kaleb was already sitting with his classmates (remember, he goes straight to preschool from daycare).  He saw her in the middle of that big gym, got up from his friends, went up to her and wrapped his big cuddly arms around her.  As he knelt there (Kaleb is almost twice the size of Ellie), he had a chat with her to calm her.  From there, she went back to her class’ spot in the gym and he rejoined his class.  There was nothing spectacular about this… but the compassion that my boys have for their sister amazes me daily.  I didn’t witness this first hand, but had three different staff members tell me the same story – with misty eyes.

The next story is a mixture of heartwarming and heartbreaking… I can’t decide how I feel about it yet. One day about two weeks ago, we experienced what we thought was going to be a pretty severe medical emergency.  For the first ten minutes or so, it involved Brandon and me relaying phone conversations between one of our nurses, poison control, the ER at Children’s, and the cardiologist on call.  My voice cracked constantly while I was on the phone with the ER, with Brandon, and with the cardiologist.  The boys and I were leaving a store when it all began.  Those monsters loaded into the car quietly and buckled in.  I sped home, on the phone the entire time.  They knew the drill.  Fortunately, we did not have an emergency on our hands that day, Ellie was NOT given ten times her dose of beta blockers… and just before I pulled into our driveway, I could finally breathe.  Sensing my relief, I heard a little voice from the backseat say, “Are you okay, Mommy?”

“Yes, honey, I’m okay.”

“But… is Ellie okay?”  They both asked.  I felt those hot tears again.

Ugh.  Those little boys sat there quietly, knowing all too well what a real emergency looked like and knowing that this certainly was one of those days.  They shouldn’t have to know this.  They shouldn’t have to sit quietly and overhear their mom talk to the cardiologist about how much time they have to get to the hospital and if it’s better to go to the local one and have their sister sent by squad to children’s just in case they need intervention meds right away.  Thank you, Jesus, that my baby girl was okay that day and that her brothers could come home and play with her that night.  But for real… the heartbreak I feel as I look back at this night isn’t about me, it isn’t about our nurse or about Ellie.  It’s about her big brothers who are madly in love with their little sister and have had to sit quietly far too many times listening to me spitting medical jargon – listening as I’m sure they’re planning a trip to grandma & grandpa’s in their minds… not knowing what the heck was going on with their sister.  This life may run me ragged some days, but my prayer is that these little boys are able to come through this unscathed.  This is the only life they’ve really known… this has been their reality for as long as they can remember.  They’ve certainly had to grow up faster than most kids their age and they give us trouble just as much as any other child their age, too… but the baggage that they carry, the compassion they’ve developed… I hope these are things that impact them in the most positive ways in the future.

Those are my hopes.  Those are the things that weigh on my heart… and also brighten my darker days.  We’re doing this – for whatever that’s worth.  We’re off… we’re rolling… we’re jumping into new projects, and we’re enjoying this ride.  We’re trying our best to keep everyone healthy, and we’re humbled by the love and compassion in this wild world.  Trust me, stand behind that serving line at a Ronald McDonald House and tell me that the things of this world don’t disappear.  Thank you all for following along – even when my blog post becomes a dissertation – we love you!  To show my appreciation... here are some pics for you to enjoy.  I know, worst consolation prize ever.  But it's all I've got for ya.  

Looking cute - ready for school

 Brunch at the RMH

 46.3 pounds of pop tabs - whoa!

 Eating a yummy cupcake on her birthday.  This is the 1st birthday she's had where she was able to eat cake - what a delicious milestone.

 Mookie the kayak extraordinaire 

 The moon was so pretty at the bus stop this day

Not my safest parenting decision... but they had fun!

Wings Like Hers

This blog has been a source of therapy for me for almost three years now.  It's been the place where I can dump my frustrations and let them soar away on the prayers of those who read it.  It's been my outlet and also my way of sharing the joy our family has experienced through this.  Y'all get the scoop on God's mercies in our lives and certainly His miracles, too.

There was a day, though, when the thought of posting to this blog forever changed something in my soul.  We were in Boston and preparing for Ellie's second heart surgery.  Ellie was a very, very sick little girl at that time.  We struggled watching her battle each day, gripped in the depths of heart failure.  Her lungs were too heavy for her to breathe without constant vent support.  Even with the vent and several liters of oxygen, her oxygen saturation was barely above 70%.  She was blue and slept most of her days... she was exhausted and sweating even in a chilly room.  This was a new low for us.  Handing our child over in such bad shape (even when the surgeon had such a positive outlook) took its toll on me.  I found myself lying awake, thinking about the possibilities ahead of us.  The night before surgery, I prepared myself for two different blog posts.  One post involved our little caterpillar rising up with beautiful butterfly wings.  The other - angel wings.  To admit this today brings me to tears.  I hate that I had to think of a way to tell the world that our little girl didn't make it... but I had to prepare my heart for that because we knew it was a very real risk we were taking.  That part of my heart never really mended.  And I'd like to think there is a purpose in that brokenness.

I know I've said this before, but I'm adding to it today.  Ellie's first year was strictly survival.  We focused each day on the choices that had to be made to get her through to the next day.  There were many nights when we'd pray over her, begging her to "be here" in the morning.  And each morning, she'd get another pep talk to just make it through this day.  We didn't have the capacity to really FEEL any of it at the time.  We wept, but the heaviness of it all still wasn't there.  After her first birthday, I spent many months feeling all of it.  So her second year was spent living through flashbacks of all that the first year brought and finally feeling the crushing weight of it.  This process was awful, but necessary.  We were able to grieve for what had happened, but this brought with it bouts of depression and paralyzing anxiety.  Once through the worst of that, we've been spending her third year of life trying to decide what to DO with all of this.

We have this experience that's left its scars, but certainly was full of joy and stories of overcoming obstacle after obstacle and living with a real life miracle that we get to appreciate every day.  Not everyone gets an opportunity like this.  But again, what do we do with it?  Well, over the past six or eight months, I've been struggling with how this manifests in our lives as we move forward.  I think we're being called to reach out to others that we share this unique experience with.  We need to offer them hope.  We need to offer them light and encouragement.  We need to let them know that they are not alone and that all of the things they are feeling are normal.  We need a way to communicate our love and support to other parents who are in the middle of their nightmares.

One of the first things I did to embark on this was to sit with a friend of mine as her daughter underwent open heart surgery.  She didn't know I was coming, I wanted to stand in the gap for her just as a friend of ours in Cincy sat with us during Ellie's first heart surgery.  (Looking back, I probably should have told her... warned her that I'd be barging in on such a heavy day.)  As I drove down to Cincy, I had a small panic attack.  Tears poured from my eyes and my body literally shook.  Anxiety was eating me alive.  I called Brandon when I was about half way there sobbing into the phone, "What was I thinking?  I am not going to be any help to them today.  I can't face that waiting room again."  As I turned that familiar corner towards the hospital, I was still shaking.  "Get a hold of yourself, Jackie," I said.  By the time I made it up to B3, the surgical waiting area, I wasn't crying anymore.  I waited around for a bit, thankful that the family I was going to wait with didn't have to wait in the private room we had, at least.  I sat for a while waiting to see them before texting my friend.  She said they were the longest surgery of the day and were given the private room.  CRAP!  Seriously?  That room?  So I went back into the room that held so many horrible feelings for me, put a smile on my face, and hugged my friend as she waited for her sweet girl to come out of surgery.  I didn't mention any of my own battle to her... the last thing she needed was someone to fall apart on her that day.  This day was about her family and her daughter... not the nightmares I still held on to from mine.  Surgery went beautifully for her little girl and I left at the end of that day feeling... refreshed.

I had gone for her, of course, and I had no idea that I was still battling these demons deep down. I had no idea it was going to be so hard, but spending the day with that family helped me, too, and that was an unintended benefit of my trip.  I came home happy for them and with much less baggage.  This solidified my plan to reach out.  I needed this just as much as the families I hope to help.

Again, what does this look like?  I'm not 100% sure.  But for Ellie's first heartiversary, we bought her a crocheted heart plushie with stitches and a band-aid on it.  She loves it and it's a sweet reminder of how beautiful her mended little heart is now.  We'll start there.  We have some more of these on order and plan to make care packages for families in the CICU in Cincy and Boston to let them know they are loved.  We're plugging away at buying things to put into these baskets/bags.  They might not be much this year, but in years to come, we hope to continually grow our outreach.  We have other things we'd like to do as well and I'm thinking of ways to put away funds to continue to do this.  Part of the plan is to do more than I think I can so that this outreach is truly felt in all aspects of our lives.  This sounds odd, I know, but I found out in November that pushing myself far outside of my comfort zone was crucial.  No matter how large or small the care package is, I want these families to know that they are not alone, they are loved, and their journey is beautiful.  What do we need from others?  Prayers.  Please say some prayers that this mission of mine will continue to grow.  I know this is something that my heart needs, as well.

We don't plan to do a fund raising drive for this really, just navigate it as it flows and see what the future holds.  I just set up a FB page for it, appropriately named Wings Like Hers.  This will give us a space to keep you all updated on how things are going and help keep us accountable to this mission when we have other things begging for our attention.
As I forecast to the future of what this looks like, I'd like to have a place (likely this Etsy store) where we can make things to sell with proceeds going towards our cause.  There are only a few things there now, not sure what we'll make for it going forward.  The butterfly image above was something that I created from a crumpled up watercolor painting that Lance made.  When I made this butterfly for Ellie, I felt like it was a good representation of the image I'd had in my head of her gaining butterfly wings.  Out of the crumbled mess that we'd been given, something beautiful emerged.  I think I'll use this as my logo for Wings Like Hers.



I think this project is something that maybe will grow with Ellie, too.  A way for her to make things in the future that can maybe contribute a little to her livelihood as well as continually give back to this community we're forever impacted by.  Again, this is me just throwing out thoughts to you... but maybe hoping that, with prayers from others, we can launch this outreach in 2017 and maybe grow it in future years to reach more than just Cincy and Boston.  Who knows what it will look like down the road?  This is something that's been heavy on my heart for a while now, and something I feel vulnerable about sharing.  But this is my passion.  It is my love.  It is my mission.  Please pray that the fire inside of me continues to grow and that I'll find the right pieces to put together to make this project something that blows my mind and warms the broken hearts of so many others.  For a while, I've had the following quote on my desk: "Set a goal so big that you can't achieve it until you grow into the person who can."  I'm working on that growth right now.  Thank you, sweet friends, for following along.  Thank you for your prayers and for allowing me to be vulnerable.

New life has bloomed here…

For anyone who grew up in a church where this song follows the benediction, you just broke into song.  Haha!  While we’ll look into that later, this post is about new life, new beginnings, and… wait for it… normalcy.  Yahoo!

I know I haven’t posted in several months.  Part of me has just been busy… the other part of me wrestled with the progression of this blog.  We had a wonderful holiday season AT HOME and have had just minor bumps in the road this winter.  Ellie’s pretty much been a hermit most days.  We have taken her to church maybe twice in the past three months… she goes on grocery shopping trips when we don’t have a nurse at home… she went to a Valentine’s event for our local Down Syndrome Association… she even went to the zoo with us once.  But she’s really not been out much this season because there are just too many sick people out and about for me to risk it with her. 

Since many of you haven't seen her in person in a while... she is getting bigger 

and rocks some pretty cute curly pigtails sometimes.

While we always have plenty of updates for Ellie, we’re also at a point in our lives where we just have a lot going on with all of the kiddos and I struggle to focus on just her with this blog.  I also have so much of my heart that’s in a happy place with her and wanting to share that sunshine with other families.  I’m not exactly sure what that direction looks like yet or how to keep this blog focusing on Ellie when there’s so much else happening in our household.  This is why I’ve struggled lately with posting… it’s ridiculous, really… but something that my brain has been keeping me from doing for a while.  I guess I’ll just go with the flow and see where that takes me.  On to general updates:

Lance just turned six and is one smart little dude.  He’s reading well and is obsessed with science and nature.  He’s likely the child that we have the most focus on right now, though.  As a family, we’re working through his ADHD diagnosis and trying find the best course of action to help him thrive.  When I used to joke that I “was too ADD” for certain activities… I had no idea how real and difficult ADD or ADHD were.  It’s crazy, y’all.  Of course, it’s nothing life threatening, just something we have to help him navigate.  The part of me that hurts the most is my own frustration levels with it.  There are things he does that make my blood boil.  Sometimes it’s totally his fault, other times I wonder how much control he has.  So my job (our job) is to do everything in our power to help him feel a sense of control over his actions.  We can see his outbursts manifesting in his relationships with others, too.  When he’s the aggressive kid (even if he’s tiny), it impacts his ability to make friends and interact well in a social setting.  That part hurts me, too.  Academically, he’s a rockstar (in my humble opinion, of course).  He’s doing well there and usually makes easy work of his homework.  Half the time, I don’t even have to read the directions to him because he is reading them to himself.  I don’t remember being able to read that well in kindergarten.  He turns everything into a math or science problem… and then tells me how things work (like gravity, or what stars are made of).  I’m amazed.  Now if that would just carry over to the social aspect of his life, we’d be golden!

Blowing out candles on his birthday cake.

Kaleb… he’s a sweetheart, but a soft heart.  He’s obsessed with taking care of his babies (stuffed animals) and being a superhero.  When he’s in a crowd, he’s often a dinosaur that roars at others… weird, I know.  He’s only four and I think he’s solid with his schoolwork, but there is a huge difference in the rate of absorption between our two boys.  Lance would count and write and identify all of his letters.  Kaleb doesn’t seem to be as interested with school.  He gives me daily updates on who he played with and what his snack was.  I think that’s fair for four, right?  He is upstairs right now wearing a hard hat and having a sword fight with a race track.  He’s pretending the lengths of track are snakes that are trying to eat his stuffed animals and he’s the zookeeper defending them.  That’s Kaleb.  His imagination is wicked vivid.

Peeking out from the top of his fort in the livingroom this week.

As many of you saw on FB, our little Bug took her first steps on January 16^th.  What a celebration this was!  We’re just pushing her more each day to get her form correct and get her to walk further and such.  We’re still battling storming episodes, but only when she’s sick.  They’ve always been idiopathic, so we’re not 100% sure what’s causing them, but we’re pretty certain it’s a combination of congestion, physical stress, and sleep apnea. 

On Thursday, I was working later and Brandon was catching up on school work.  All of the kiddos were in the family room watching a movie.  I went over to check on them and then into our room to see if Ellie was maybe sleeping by Brandon while he worked.  Brandon thought Ellie was with me.  I asked the boys where she was.  Lance shrugged without looking away from the screen and Kaleb said, “She went upstairs”.  What?  Brandon and I raced up the steps to see if she had, indeed, climbed the wooden steps by herself with no supervision… she had.  She went into her bedroom, closed the door, and started emptying her medical supplies all over the floor.  What a turkey.  She was rather proud of herself.  I think we won some kind of parenting award for that one, right?

In other family news, we bought some chickens.  I know… this isn’t news… but hear me out.  We have had chickens every year for quite some time.  The boys loved them and I loved to have them for two reasons: they lay eggs (and we eat at least 3 dozen of those a week), and chickens have always been calming to me.  If you’ve never sat and watched chickens for a while, try it sometime.  It’s really quite serene.  Now, when Ellie was little and hospitalized so much, we had no way of caring for our girls and had to give them up.  For the next two years, we went without chickens because we never knew what one week would bring from the next.  We were too preoccupied with what was going on with Bug to chance starting our little barnyard again - until now.  We finally feel like we’re in a solid place to start expanding our little family (in the form of animals… no more small humans).  So chickens are it right now.  Hoping to also add bees soon… who knows from there.  I feel like if we live in a farmhouse, we ought to have at least a few farm animals, right?  Chickens are a good start… a small celebration of stability.

We ordered our chicks online and picked them up at the post office.  Kaleb wanted them to ride next to him the whole way home.  We so missed the sound of chirping that filled the van.

Day 1:  we have 16 of them... and they're much bigger now.

That also brings me to a little, insignificant phone call I got about two weeks ago that really caught me off guard.  It was from Dayton Children’s and the woman on the phone was asking if she could pre-register us for Ellie’s ENT appointment on 3/1.  Of course, she could… but I was really confused.  I said, “Have you changed your policy on this or something?  We’ve never gotten a call like this before… we always just go up to the counter when we arrive and let them know that none of her coverage has changed.”  The lady said that if we hadn’t been seen in over 30 days, then it’s their policy to give a courtesy call like this.  HOLD THE DOOR – we haven’t been seen in 30 days?  That’s amazing!  That’s not happened to us before… thirty days without stepping foot into a hospital – yahoo!  I’m sure it was nothing to her, but to me… that seemed like a huge accomplishment.  Not only has Ellie not had to be admitted due to illness, she is now more stable and doesn’t need to be seen by her specialists as often.  Cue the happy dance!

And as for that appointment with ENT… well, we were finally given some sort of timeline for decannulation… and it’s very exciting.  Early in April we will go in and Ellie will get another sedated airway evaluation in the OR.  That night, we’ll be admitted and she’ll undergo a capping trial at night (we do this on the regular at home, so it’s not something new).  She doesn’t like it, though.  The next day, her surgeon will remove her trach.  If all goes well that day, she’s scheduled to undergo a sleep study that night sans trach.  This is a big deal, y’all!!  Again, if all goes well, and she’s able to get through her sleep study without her trach… she will likely be going home without it.  We’ve spent the past 2.5 years living the trach life… so I’m not even sure I’ll know what to do with myself… but we’ll be celebrating, for sure!  We’ll have to think of some way for y’all to join us in this celebration.  

We’re hopeful that the timing laid out works as planned.  If it doesn’t, well… waiting is nothing new for us.  There are a lot of “if all goes well” in this plan.  But it’s the first time we’ve had a tangible plan with dates and scheduled appointments to move in that direction.  If y’all can lift some prayers that we can do this #decan business, we’d be ever so grateful.

So as my daffodils start to emerge along the sidewalks, we celebrate new life, we celebrate unexpected little mercies, we celebrate normalcy (or our own version of it), we celebrate having a plan (even though we know it’s all God’s timing, really).  Celebrate with us, will ya?  And for any of you wondering about the title of this post and the song that goes along with it, here are the lyrics.  Pretty fitting for the road we’re currently on in this crazy life:

New life has bloomed here

God’s love has warmed us

Now the world calls us

To spread that love

God’s peace go with you

May it sustain you

And bring us together

To praise God again.

More on the “Now the world calls us…” part in another post… coming soon ;)  Until next time, friends, here are some pictures of some of our shenanigans over the past several months.

 This is exactly how all of our pictures with Santa look this year.  Awesome, right?

Christmas morning at our house

 

This is seriously how he ate his ice cream cone... and yes, 

he bit a giant hole in the cone 1st... it did not end well.

 The addition to Amos Memorial Public Library in Sidney is AWESOME!!  The kids love it.

Just before Inspired By closed their doors last month, we took the kids there to paint pottery.  Kaleb did an amazing job of spilling his glaze all over himself.  It washed out just fine.

Lance picked out a tinsy tiny reindeer to paint.  It's about the size of an eraser... but it's cute!

And if you happened to miss my post on FB about this, Ellie was featured on 22 different rotating billboards in the Cincinnati area in early February.  Doing our part to raise awareness for CHDs!

Go away, thunder, we’re not friends.

As I’ve said a thousand times, when you don’t see me post for a while, it’s because things are going great with Bug and we’re busy spending our days being “normalish” and enjoying every morsel of it.  And boy, have we been doing that.  We’ve been living it up as we’ve been able to do so many things out and about as a family… knowing that cold and flu season was looming ahead… knowing that it brought with it the need to hunker down with the littlest one.  Dang it.  We’d really hoped that by now, she would be free of her trach, but we’re not there yet.  Last Monday she had surgery #12.  This is the first time that she didn’t actually have any cutting or dilating happen while in the OR, so I don’t think this actually counts as a surgery.  It does mean that her new airway has stabilized quite a bit (big success), although there is some concern that the front of her trachea is collapsing a bit right above her trach stoma. 

That night, we tried a capping procedure at night in the hospital.  Epic fail, I thought.  She was able to oxygenate well… which was the goal, but Ellie was miserable.  She cried and screamed (remember that we’re not used to hearing this, so it was really heartbreaking) and fought sleep the entire night.  I held her in the tiny recliner I was supposed to sleep in and tried to get her comfortable.  I would try desperately to get her to sleep for 45 minutes to an hour – finally getting her to drift off – and the IV pump would alarm, or the feed pump, or it was time to take her blood pressure.  At 2am, I finally broke and snapped, “We’ve got to leave her alone” at the nurse.  It wasn’t my finest moment.  I was crying… I was frustrated… I felt like this glorious dream of having Ellie decannulated was crumbling in front of me.  The nurse reassured me that Ellie was doing well and surprisingly, went on with all that she had to do through the rest of the night like a ninja in Ellie’s room.  I thanked her in the morning and apologized for being grumpy at 2am.  I took my very exhausted baby home with orders to cap no more than an hour at a time during sleep for the next four weeks.  We’ll see where that puts us.  The 1-hour trials are still hard to do here… but nothing like the ten hour torture of that first night.

A very tired Mommy & Buggy after her 1st night time capping trial

Sometimes, Ellie falls asleep capped and does great through her 1-hour trial, but more often than not, she fights it.  She has sleep apnea and needs oxygen while she sleeps.  This means that we have to put a nasal cannula on her before bed.  Ellie hates this.  Thanks to the G tube and trach, Ellie hasn’t had to have things taped to her face since she was two month old.  She is not about to let us start doing this again.  So I think part of her frustration is having tubes shoved up her nose and taped to her face when she’s supposed to be relaxed.  The other stressor:  breathing itself.  For so long, breathing has been effortless for Ellie.  Either her ventilator was doing it for her, or she was breathing through the trach with absolutely no resistance.  Now, she has to figure out how to breathe through her nose when she sleeps and that’s a whole new thing to learn.  Something so simple and something we all take for granted… she has to learn.  And it’s hard work.  So that’s part of her frustration, too.  This road to decannulation is harder than I imagined – here’s hoping that it starts to get smoother. 

She’s still so full of joy.  She’s a smart little cookie and has personality to spare.  She wants to be involved in everything that goes on every single day… and we couldn’t be more excited about all of this.  She is making incredible progress in therapy and has even started saying mama, dada and bub,bub (for the boys).  She’s learning how to climb our steps (and sometimes how to fall back down a few) and is standing all the time now.  She’s amazing.

She's working hard on self-feeding.  

And we were keeping the cannula on her all day to see if it helped with her comfort level

One trick that she’s picked back up that we’re not so impressed with, though: storming.  Ugh.  I can’t even begin to tell you how this makes me feel.  The first episode occurred on Monday, October 10^th, the day of my grandma’s funeral.  We’d spent the day with our family celebrating the life of my grandma and enjoying the company of family from all over.  But you know how those kinds of days can be physically and emotionally exhausting, right?  This was absolutely no exception.  By the end of the day, Brandon had headed to work and I snuggled in with all of the kiddos in my room.  We did not have a nurse that night.  Ellie seemed restless and Lance offered to snuggle with her.  When her pulse ox alarm started to go off, I thought her probe was bad and silenced it for a bit, while I climbed out of bed to cuddle her.  She nuzzled into me, but couldn’t stop moving.  Her pulse ox machine never reads well when she moves around so much, so I waited a bit to turn it back on.  After some more cuddles, she started to sweat and I decided to bring her upstairs to her room, place her in the crib and see how she’d do there.  When I kicked the oximeter on this time, her heart rate was over 170, her oxygen levels were fighting to stay above 90 and when I took her temp, she had skyrocketed from “feeling warm” an hour before to a temp of 104.  I called Brandon at work and gave her Tylenol for the fever.  He headed home quick during his lunch break and took her vitals again.  Her fever was starting to come down… slowly.  By this time, the Tylenol was able to calm her enough to let her sleep.  Her respiratory rate was still high, but starting to decline… HR and temp followed suit.  Her oxygen level raised to a normal level as well.  Storming.  Only this time, Tylenol seemed to make a difference for her.

We weren’t 100% sure this was what was happening because she hadn’t stormed for about a year and that was under extreme stress in the hospital.  We had a great (read: normal) day with no issues.  She wasn’t sick, she wasn’t in pain.  There wasn’t an explanation. 

Earlier this week, she showed some of the same behaviors for our night nurse.  Ick.  Last Friday, we’d had another fun family night at the barn enjoying a fish fry and lots of activity.  All three kiddos fell asleep on the way home (Ellie fell asleep in the driveway with her cap on her trach).  Our night nurse, Danelle, came on shift 15 minutes later and took the peacefully sleeping Bug out of my arms and let her finish her 1-hour capping trial without issue.  I went to bed, looking forward to enjoying a night of sleep having my big bed all to myself. 

At about 12:20am, Danelle knocked on my door.  She said, “Jackie, I need you up here”.  I thought it was already morning, and stumbled out of bed to go upstairs.  Once upstairs, I could see that things weren’t right at all.  Ellie’s color was awful… pale, almost yellow.  Danelle started firing things at me that my sleepy brain wasn’t ready for.  I watched as Ellie drew her knees and elbows up and shook (seizures?), I saw that her heart rate was peeking around 160 and her oxygen was struggling to stay in the high 80s.  She was on 3L of oxygen at the time.  Yikes!  Her capillary refill was awful.  When we pressed on her fingers and toes, they’d stay white for a very long time.  Her respiratory rate was increasing.  If this was storming… it was coming on fast and furious and it was looking scarier than what we’d seen when she was little.  I was scared.  For the first time in a while… this little girl really had me scared.  I called Brandon.  Then I called mom and she said she’d be right over to stay with the boys.  We took a core temp on Ellie (98.4) and packed up the van to head to Dayton.  We called ahead to the ER to let them know the situation and when we arrived, were taken into the Special Care room.  Now, we’ve had our share of ER trips with Ellie and the boys.  We’ve been taken back to regular rooms and we’d sit there and wait for registration… then for another person… then for someone else… the ER was a long waiting game.  Not this time.

This time, they walked us back to a room behind the charge nurse desk, through a set of double doors, and into this one room… separated from all other rooms… it had an elevator right outside of it and big double doors into it.  It was set up like a trauma room and I’ve never been in a trauma room.  I walked in and my heart dropped.  I set Ellie down on that big bed and took a step back.  I looked behind me as ten (seriously – TEN) people flooded that room and surrounded my little girl.  Thank goodness Danelle was there because I couldn’t speak much at all.  I was able to answer a few questions, but she was there with her chart and was able to answer specific questions about medications and doses and such.  I was overwhelmed.  They took a core temp again – 104.7!  Her temperature had risen from 98.4 to 104.7 in less than an hour and half.  This storm was severe.  After an hour and a half or so, Ellie calmed down.  They’d given her a Tylenol suppository and that had settled her down some.  We’d wait in the special care room until daybreak when a room was available upstairs for her.  She had awful trach secretions and they wanted to monitor her for those, so they took us up to PICU for observation.  The rest of our admission was based on those secretions.  Nothing more was said about storming from the medical team – even though I’d pushed with my questions.  I’m not sure they believed me at all… even when I explained her history and how quickly things changed that night.  This isn’t new territory for us… this is a child who storms who shouldn’t storm and that makes me sound like a crazy person, I guess. 

Getting and EKG in the ER after she'd settled down

The next day - back to her silly self

So now onto the next step… the part that makes my insides turn and twist… the part that makes me want to throw a fit like a petulant child:  we need to know why.  We need to find what we cannot see, essentially.  We need to figure out what has changed recently to make these storms reemerge in our “healthy-ish” girl.  In the past, these were primarily cardiac related… we think.  To be honest, her storming has always been idiopathic (or there wasn’t really an explanation).  But once her heart was repaired in Boston… they went away.  We’re researching diligently now… and making appointments with specialists to make sure we’re covering our bases.  Sooo… that’s where we’re at.  I feel like these stupid storms took the wind out of my sails, yes… but the silver lining here is that they’re only a small part of our life with Ellie.  She spends her days happy and full of life.  She signs songs to us and loves on us like you wouldn’t believe.  This is just another hurdle… but one we wanted to be done with long ago.  Damn you, thunder!  We are not friends... and you will not win this battle.

Home - but NPO

Okay, so I have been terrible at updating since last week... but it's been busy.  First, thank you all for all of your thoughts and prayers.  Ellie is healing well after her surgery last week... she's remarkable!

On Friday, the surgeon came in and removed her drains and dressings and I got my first look at her sutures.  On her neck, she has a long lateral incision that looks like a smile (how appropriate!).  On her chest, she has a small incision where they removed her rib.  The surgeon did a beautiful job with her sutures... I think her incisions will heal beautifully.  Friday was great!  Ellie was in a good mood, she was full of energy... and she was determined to climb out of the bed.  I didn't leave her bedside unless she was sleeping because I was sure she would launch herself over the rails.  Turkey.

Saturday morning, we were waiting on rounds and waiting on a time for discharge when I started feeding Ellie her breakfast.  She was eating well and drinking like a champ through her straw.  This is totally gross, but I leave her HME off of her sometimes to allow her to work on coughing up any secretions she has.  She'll need this strength when she doesn't have a trach... so this is good practice.  While we were having breakfast (yes, I was eating what she wouldn't touch on her plate), her secretions were heavier and more frequent than normal... and the color of her formula.  When I wiped them away with a paper towel, I inspected them (read: smelled them) to confirm that they were, indeed, formula.  I called in the nurse and continued to eat while I waited.  Yep... I'm that disgusting... I can wipe away sputum, smell it, and continue with my breakfast.  My grossness tolerance has increased significantly since having Ellie.  Ehh... what can I say?

Anyhow, when the nurse came in, I had him help with suction as I gave Ellie more formula to confirm what I'd already suspected.  Bottom line: she was swallowing some formula, but there was a good amount that was leaking down into her airway.  Fortunately, Ellie has the strength to cough that up instead of letting it settle into her lungs.  I was certain this would mean additional testing and such before we could go home, though.  I looked at her and said, "really, Gilligan??"  I assumed we'd have to have a chest x-ray to see if there was any fluid on her lungs and we'd have to have a swallow study done before we'd get to go home... and I thought maybe we'd have to wait until a weekday for that.  I was totally bummed as we waited for rounds.

The surgeon that assisted Dr. Elluru during surgery was in rounds to talk with us that morning and I sheepishly walked out, expecting bad news.  Dr. Patel had none of that for us.  He explained that the stent that they used covered the surgical site, and also covered her vocal cords (which we knew), but it came up high enough that it could cause the epiglottis to close onto the stent instead of onto the top of her natural airway.  Since the stent has a tiny hole through it, if it wasn't making a tight seal, some liquids could leak through.  This was to be expected.  What??  He said to stay away from liquids (or add thickener) and she'd be fine with baby foods, purees, and other soft foods.  We have to stay away from crispy foods anyhow, but he said we should be alright with soft things.  So we waited a few more hours and went home Saturday afternoon.  Awesome!  Our best guess is that the airway was sealing just fine the first few days post-op due to swelling in the tissue surrounding the epiglottis.  Once the swelling receded, the epiglottis started closing on the stent.  That's the only explanation we could come up with as to why we didn't see it earlier in the week.  [how many times can I put "epiglottis" in a paragraph, right?]

Saturday was busy... whenever we're discharged from the hospital we have to meet with our nursing companies to resume care before our nurses can start again... and we needed to pick up the things Ellie would need at home.  Saturday night, her baby food was leaking from her trach during dinner... dang it.  This is scary because the risk for things like pneumonia are awful when you have foreign things in your airway.  So we called the doc in the morning and she's been put on tube feeds (with a few solid foods... think sandwiches) just to give her mouth the practice of chewing and swallowing.  We only give her a tiny amount of food by mouth each day and the rest is given through her G Tube.  Thank God for tubies!!  (For those not familiar with medical jargon, "NPO" in the title of this blog entry stands for nil per os... Latin for "nothing thought the mouth"... since all medical jargon is in Latin and all.)

So Ellie is mad during mealtimes when she sits and signs "more" and "eat" at us when she can't really eat.  Poor kid.  We're keeping her belly full... but that's not the same as eating.  This girl loves her spicy food and peanut butter.  She's due back in the OR on 8/15 to have the stent removed.  We should just have a short stay for that surgery.  Let's pray that her epiglottis closes without issue once the stent is removed and this little beauty can go back to eating by mouth.  I know we'll see regressions in feeding therapy... steps she's worked so hard to achieve... but hopefully not too much regression.

In short - we are home.  We are working on packing and getting ready to move soon... so that keeps us busy while we're not at work.  Ellie is mad about this food situation, but we only have 13 more days like this until she's free of her stent.  Fingers crossed that all goes as planned!

This was Ellie on Saturday... waiting for discharge paperwork.