A mile in my shoes: battling barth’s one step at a time

My Wonderful Wally,

When you were born we had no idea that the birth of you would set us on a journey that we never could have anticipated. A journey that has not always been easy. A journey that has been difficult and challenging, and at times impossible to navigate. A journey that has changed our lives. Upside down. Inside out. A journey that has changed who your daddy and I are. Not just as parents. But people as well.

When you were just seven weeks old you contracted RSV. Little did I know than that this virus would save your life. You see, RSV led us to the diagnosis of dilated cardiomyopathy, what your brother Henry died from. It would follow with an even bigger diagnosis, and more answers we had been desperately searching; Barth Syndrome. At the time, it felt like my world was ending and my hope was dwindling. And I was sure I was going to lose you. I was mad. Angry. Screaming to who ever would listen. Why you? Why us? Why? Why? Why? The answers sweet baby boy never came. But I believe now, looking back, that it was all to prepare us for what was to come.

We always knew with dilated cardiomyopathy that there was a chance you would have to receive a heart transplant. But we blocked that aspect of Barth Syndrome out. We refused to believe that would have to happen to you. We were indeed naïve and in denial. And because of that, the last thing we expected was for it to happen just one year after your Barth Diagnosis. A little over 60 days after your first birthday. But that’s exactly what happened.

A year ago, today, when you were just fourteen months old, your life was saved by a little boy named Carter. Who unfortunately you’ll never get to meet. You were given a second chance at life. A gift, the most perfect heart, from complete strangers who knew nothing about you or us. A gift you or I can never repay. The day we received the call is a day I will never forget. After being in Chicago for over a month, you being extremely sick, us almost losing you more times than I can count, two open heart surgeries, A BIVAD, and a berlin heart, we received the call at 7:30 am on February 28th that there was a heart available and it was perfect. I remember facetiming your Nonnie and I could barely get the words out from crying so much. Your Nonnie was panicking because to her it seemed like something bad had happened 😊. But it was a bittersweet moment. Because I knew what this moment meant. It meant so many lives would be changing in such a short time.

Our lives.

Your life.

His life.

Their lives.

His heart would become your heart.

Their hurt would become our hope.

And I cried. And I cried. The relief, the pain, the fear. The excruciating pain on behalf of another mother saying goodbye before she ever dreamed, she’d have to. We were rejoicing, and they were grieving. It is almost impossible to try and wrap your head around.

What made it better was you were so happy that morning. It’s like you knew. I think you could sense our happiness. You were smiling and laughing. Your crazy hair was sticking up all over the place. And when we handed you over (after many hugs and kisses) … as they wheeled our sweet, very smiley Wonderful Wally down the hallway, and we were told it was time to let go, I said goodbye. You see I hate saying goodbyes and I had never said goodbye to you before any surgery until this one. It was always “See you later”. But this was different. Goodbye in this moment seemed fitting. The reality was … I knew this would forever change you. That you would no longer have the infected heart you were born with. Not only that, you were essentially going to die on that operating table. They were going to take out the Berlin and stop your heart. It would than be removed from your chest, and a machine would take over. Until that is, your new heart arrived. By helicopter I might add. These amazing, trained, gentle skilled surgeons would than place your new heart where your old heart resided. “Welcome to your new home little heart.” That’s exactly what was said as Dr Backer placed your new heart into your chest cavity. The skill, compassion, and steady hands of these surgeons and medical team were making you whole again. Your new heart would once again beat inside a human body. Only this time… It would reside in a boy named Wally, who I just know is going to change the world someday. So yeah Walter Joseph. I said goodbye. I watched them wheel you into the elevator, praying and anticipating our next hello.

And when you did return, after twelve hours of not seeing you, you were completely whole again. But the only difference that seemed adamant was, you weren’t 100% yourself. You were still ours most definitely, but now also theirs. Two lives wrapped up in one single body. Your life doubly meaningful. You are living a legacy my dear son. A tribute to sacrifice and selflessness. And just thinking about the gift you’ve received knocks me to my knees every time. We will celebrate this gift and Carter each year because we are so very blessed to still have you with us. Yes, the future is unknown. But because another family made a difficult decision in a time of distress, you will have a future. There will be more chapters in the book of Wally.

And for that…. I am forever grateful.

Happy Heart Anniversary my sweet boy! I pray that you always remain humble and kind. I hope you always know how loved you are and how very special you are. Your dad and I will always make sure you know not to take a single second for granted and to remain grateful for this beautiful life you have been given. You are brave. Strong. Determined. Our wally. Our miracle boy. We love you to the moon and back and back again.

To our donor, Carter, and his family. We will never forget the decision you made or the selflessness you showed in your time of grief. I promise you this, Carter will forever live on in our sweet Wally. We as a family will never take a single moment for granted. Because we know all to well how short life is. Every day and every night has and will continue with a prayer for Carter and for all of you. We love you and cannot wait for the day we can hug you and show you what a gift of life truly means.  

#wonderfulwally

#organdonationsaveslives

#thegiftoflife

#newheart

#oneyeardown

#fearfullyandwonderfullymade

#allbecauseofaboynamedcarter

#ourhero

#barthsyndrome

#team barth

I sit here thinking about this past year and all that comes to mind is 2019 is one to be remembered. Our family has dealt with our share but this year has topped anything and everything we’ve ever known. There was so much loss. Grief. Sadness. Tears. Frustration. Hopelessness. Despair. There were times, multiple times that is, that we were certain we were going to have to bury another child. Our hearts were completely shattered. So many questions. Questions of how we would ever come back from where we were at? How could we go on if Wally didn’t survive? When would we get to come home? Would Wally receive a heart in time? We pushed on. We remained strong despite our fears. We held on for dear life. And we were on our knees daily praying to God for a miracle. A miracle we received at the price of another little boy. A little boy who’s parents In the worst moments of their life chose to give the most selfless gift. A gift that we will never be able to repay. A gift that saved our sons life.

I look at Wally now, sleeping so peacefully, and tears run down my face. At the beginning of this year, I wouldn’t have ever dreamed we’d be here. Our prayers were answered. And I find my self all in my emotions. Fear of what’s next. Pure happiness that our baby is thriving. Grief for what we have endured. Sadness for our donors family. I still have nightmares. The ptsd. The memories. The anxiety is soul crushing at times. But I look at Wally and I beam with pride. I’m so unbelievably proud of him. Proud to be his momma. He’s a happy, healthy, two year old boy that got a second chance at life. A life I know he’ll never take for granted.

Along with the sicknesses. The appointments. The therapies. Working on ourselves and our marriage. Trying to be the best parents we could be. We also suffered some other pretty big losses. Our friend Metz who we loved so much passed away. AJs grandpa (one of the sweetest I’ve ever known) passed away. Difficult diagnoses that we are still trying to wrap our heads around. We question God frequently. Why us? How much more can we take before we break?

It’s hard. This life we live. But one thing that is true that has always been true is we are strong. We are Gods children. We are better people than we were a year ago. We live and love with all our hearts. We put our faith and trust in God. We will not let loss and grief defeat us. We will not let satan win.

We are blessed you know. In every way, shape, and form. We have the most amazing family. Friends. Community. But most importantly we have Wally. And we have each other. Sometime I worry about what’s ahead. What else we will have to endure. But we’ll do what we always do. Hold our heads up, push through, remain strong, and love each other through the good and the bad. Our God is an awesome God! He gave us a miracle that is Wally J.

Well never understand why things happen the way they do. Well never have all the answers. But I have to believe that God has this amazing plan for our family. For our Wally.

We thank God every day for our medical team here and at Luries, our family, Barth family, our friends, our community, and all the support we’ve received. But most importantly we are so very thankful for our donor and donor family. This time of year, the holidays, without your child is unbearable. We know that all too well. I pray that knowing their little boy, a hero, our hero, saving so many lives makes this season a little more bearable. I just know that our sweet Henry met him at the pearly gates and gave him a big hug for saving his brothers life.

We leave 2019 ready for what 2020 has to offer. Hopefully nothing but good. 😏

Life is what you make it. We could remain at rock bottom. We could throw ourselves a pity party. We could be negative. But what kind of life would that be? So instead we choose happiness, love, and positivity.

What we look forward to in 2020:

*We look forward to continuing to watch Wally love life. Witnessing the miracle that he is. We hope this is the year he’ll start walking!! We pray he remains healthy and we can limit our hospital stays. And our hope is that God guides us in being the best parents we can be, for him.

*We look forward to our trip to Florida this summer to reunite with our Barth Family!! Cannot believe it’s already been two years since we’ve seen them!! Ahh so excited!

*Working on our health and fitness

*Paying off some debt 😩

*Taking time for ourselves and our relationship

*Spending quality time as a family

*Hopefully giving back by doing some volunteer work

*But most importantly, loving and enjoying every second with one another

I saw this piece of writing below on Facebook the other day and I thought it fit perfectly. We’re still alive and will continue to fight. We will always have hope for better things to come.

We hope and pray every person reading this has a safe and happy new year! May God bless each and everyone of you.

Thank you for following our journey. It’s not over yet 😉.

Love always,

—AJ, Kelsey, and Wally Bastian

For some of us, this year was brutal.

Painful. Grief-filled. Heavy.

Not the best year, to say the least.

It can feel tempting to just want to jump ahead into the mentality of a new year, and new beginnings.

But I think it’s important to stop for a moment and recognize that even though this year could have wrecked you…

You’re still here.

You’re still alive, still fighting.

Although you might feel so eager for this year to end, it’s possible that someday you look back on this year and think, “that’s the year that grew me.”

This might be the year that you pleaded with God, day in and day out, for the strength to take just one more step.

It might be the year you cried more tears than ever, and begged God to take away your pain.

It might be the year that you learned how much you needed Him because only He could carry you.

I know it’s hard to see it now, but this awful year might be the one that shapes the rest of the years to come… in a beautiful way.

So, look into the next year with hope and expectancy.

But don’t dismiss what this year held.

It held strength and courage each time you got back up.

It held a fight of faith each time you fixed your eyes on Jesus.

You are still here.

And God will continue to fight on your behalf.

~Kelli Bachara, The Unraveling Blog

11 years. We were just babies. Taking our first steps out into the world. Not even really knowing who we were or where we would end up. But we were madly in love. So we took a leap and we held on tight.

You joined the Marines. I went to Nursing school. Long distance. A deployment. It was hard. But we stuck it out.

We moved to Bloomington. We got Zeus. We got married. Moved back to Peoria and in with my parents. Went through the loss of friends, grandparents, loved ones, but most importantly we went through the loss of our first son Henry. And we were devastated. Heart broken. Defeated. Broken. At rock bottom. Some people said our relationship would never make it through. That we had reached our breaking point. But they were wrong. And we continue to prove them wrong. We chose to be broken together. We held on to each other on the days we were drowning. Through the tears, the PTSD, the nightmares, the questions, the pain, we had each other. Hoping and praying brighter days were coming.

We bought a house. Started a new life in a new town. You becoming a police officer. Me graduating nursing school. New jobs. New friends. We were making a life for ourselves. Bettering our selves. Realizing who exactly we were and what we were meant to do. And than Wally came along.

Our sweet, feisty, stubborn, full of personality Wally. Even though he was fussy. Never slept. And we had no idea what we were doing, love and admiration for him was spewing from both of us. And than he got sick. We held on to each other. And we got the Barth diagnosis. We again held tight to each other. And we thought “here we go again rock bottom.” But little did we know we weren’t quite there yet.

This year. Our tenth going in to our eleventh year together has been hands down the hardest year of our relationship. Wally getting sick…. We almost loss another son. When I think about how close we were to picking out another headstone, my stomach flips. My heart races, and tears fill my eyes. But because of a generous family and a wonderful team of medical professionals, a heart transplant saved our son. The recovery. The separation with me in Chicago. You at home. The money we don’t have. The anxiety. The worrying. The lashing out. On top of that, losing another good friend. It hasn’t been easy. But we’ve stock it out.

We’ve been through more than our share of crap. More than one person deserves that’s for sure. But we do it together. We hold on to each other. We practice patience and understanding. Because even though we are going through the same stuff, we aren’t the same person, and we deal with things differently. We’re constantly learning and reevaluating. We’re a team. A damn good team. A team I’m proud of.

Our relationship has been shoved to the side too many times to count through out these past 11 years. But one thing that has never been shoved to the side is my love for you. I may not always show it. I may not always say it… but it’s there. Every single day that love is there.

And through all the bad…. we’ve also had a lot of good. Your stupid jokes that are so stupid but make me laugh anyways. The trips. The bantering. The bickering. The time spent with family. The accomplishments and achievements. You becoming a father and me a mother. The creation of two beautiful children. My favorite thing in the whole entire world is to watch you with Wally. You are hands down the best father. And I hope you will always know that.

We’ve built a life, my love. A life that comes with hills and valleys and unexpected storms. A beautiful, loving, messy, insanely chaotic life. I am confident that as long as I have you by my side, I can weather any storm they comes our way. Is it perfect? Not a chance in hell. Do we still have a lot to learn? Absolutely. But we’ll do it together. Just like the past 11 years. Side by side. Hand in hand. Loving each other through it.

Happy Anniversary 💕💕

It’s been 35 days since our Wally J received the gift of life. As I sit back and try to reflect on these past 35 days, I find myself reliving every single second of every single day since we got “The call”. But the day of….The day we received the greatest news. Is the day that will be forever grained in my body. There’s nothing in this world that could prepare a parent for all the emotions that will play on a constant repeat in your mind when you get the call that this is it. There’s been a match. A new heart for your baby is on its way.

You cry happy tears that your baby has a fighting chance at life. You cry sad tears that someone has given you, your child, the greatest gift. But with that gift comes an unimaginable loss. So you’re happy, yet sad. You’re scared. With mind numbing terror taking over your entire being. You’re body in fight or flight mode continuously running on adrenaline. You pace the floors during the 12 hour surgery. Your mind racing a million miles a minute. Asking yourself, God, or anyone that will listen…Will he make it through another surgery? You hold you’re breath when the door to the family room opens and in walks a nurse with an update. You look at his/her face trying to gauge whether they have good news or bad news. Sighing with relief when they smile.

When the surgery is finally over and you wait to see your child. You start wondering what life is now going to be like. You ponder whether or not you’re strong enough to handle the obstacles that come with having a child who has had a transplant. You’re relieved the surgery is finally over, anxious to lay eyes on him. You’re optimistic but yet cautious and nervous about what lies ahead. You’re tired. You’re exhausted. You’re mentally, physically, and emotionally drained. Where putting one foot in front of the other seems like an impossible task. But you’d do anything for your child. Make sure he’s ok. So you continue on.

And than….the moment comes. Time freezes again. They say you can see him. You walk the long walk from the family room to his hospital room at 1:30 in the morning. The hallways dark and quiet while other children are asleep in their beds. Holding on to your husbands hand for dear life. You gown up with masks, gowns, and gloves to help prevent infection. You walk towards his bed with tear filled eyes. You see him and your heart sings. You see your sweet baby boy who has overcome more in his short life than the average person in a lifetime. You look down at his chest and see the bump bump of where his beautiful, perfect, new heart is beating inside his chest. You rest your hand on his chest and feel the rhythmic beating of the greatest gift you have ever received. You close your eyes as the tears finally fall. The nurse asks if you want to listen. And you’re over come with emotion as you listen to the greatest sound you have ever heard. Your whole body breaking out in goosebumps at the most amazing miracle you are able to witness. You feel thankful for the donor and their family. Blessed that the good lord saw him through. You just whisper over and over again, thank you. For the surgeons. The doctors. The medical staff. The donor and their family. God. Every single person that made this happen you thank in a small whisper that only you can hear.

Now that you’ve seen him and you know he’s doing ok. And that he has the most amazing nurse. You literally feel the adrenaline waining. You feel the exhaustion creeping in to the point you cannot keep your eyes open one more second. So you say one final prayer over your sweet baby. You kiss his sweet face. You tell him you are strong. You are brave. You are my hero. Mommy will be back first thing in the morning.

As you walk out of the hospital. You don’t think. You just keep moving. You just keep counting the steps to a perfectly made comfortable bed where you can finally lay your head. A bed where you can finally sleep for a couple of hours before a new day begins.

Sleep.

Sleep is something you desperately need because when you sleep you recharge. When you sleep you do not have to think about what lies ahead. Your mind doesn’t race. It’s just you and the black screen behind your eyelids. You can sleep because you know your baby is ok, he’s got a new heart, and that he’s being taken care of. But most importantly he’s alive. And you sleep because you know when the sun rises he’s going to need you to be refreshed. That a new day will come with new obstacles and tribulations. But you don’t think about those obstacles and tribulations at that moment. You just breathe, close your eyes, thank God for another day, and sleep.

–Wally’s Momma 💕💕

The problem with writing a blog is that there is always so much that I want to say, so many thoughts running through my head, so many exhausting, mind numbing emotions, that I never know where to begin or what each blog post should be about. I put it off and put it off because to write down all my feelings for the world to see is… well its absolutely terrifying and it’s exhausting. So I do what I do best, I avoid it. The reality is though, that I feel so much better once I hit the publish button. So bare with me.

Most people wonder how we do it. How do we keep moving forward when our life is a constant (excuse my language) shit show? I ask myself daily the same question. It really feels like an out of body experience. For example, I think back to a couple weeks ago, when we were at OSF and I try to think about what we did with our time, how we felt. And for the life of me I cannot remember. I just remember standing by Wally’s bed. Sleeping in the family room on the NICU floor. I do not remember how I did it, how I survived each day, I just did.

So I wonder, when this is all said and done, if we ever get to go home, will I look back on this time here in Chicago the same? Will I remember laying on the bed at RMH sobbing in to AJ’s arms because I thought my baby wouldn’t live to see another day. Will I remember the paralyzing fear I felt when he was in both of his surgeries? Will I remember the amount of times I prayed to GOD not to take another baby from me? How angry I was that all of this was happening? Questioning GOD, “Haven’t we already been through enough?” Wondering how I would ever survive if I lost another baby. A part of me hopes that once Wally has a new heart and we are home I can just forget this ever happened. I can forget the sadness, the fear, the anguish we all felt. But as we all know, that won’t happen and it wouldn’t be healthy.

For three years, our lives have felt like a rollercoaster we cannot get off of. There is always some twist, some turn, you think it is almost over, that it will finally come to a stop but it never does. You think eventually we would become immune and just expect bad things to happen. That is not how it works though. As I sit in my sons hospital room, I cannot help but feel that maybe we are just doomed in this life. The pain, the fear, the question of what is going to happen next, maybe that is just all we are meant for.

But than, I look at my sweet baby boy, Wally J. I look at his smile, his will to live, his strength, his determination and I want to hit myself for being so selfish about so many things. Here is a one year old, who all he has ever known is hospitals, doctor appointments, medicines, surgeries, sleepless nights, and pain, yet…. he still smiles. He still charms everyone who walks his way. He still fights.. every.single.day… to simply live. How resilient he is, and how he simply finds the joy in every day, that…. it just literally blows me away. As a mother, you are supposed to teach your children about life, love, and everything in between. But I can honestly say that, Wally has been doing all the teaching. My one year old son has literally gutted me from the inside out and reshaped who I am, as a person. My boys, my sweet boy in Heaven and my feisty boy fighting for his life here in Chicago, have literally changed my life. Because of them, I am now a person who clings on to her faith when everything is falling apart. A person who is more loving, more kind, more emotional, more aware. And the greatest part is not only have they changed my life, but I’d like to think that they have changed some of yours as well.

The thing is… I need to say this. I need to express this. Because it is something that weighs so heavily on my heart. I promise I’ll be done rambling after this last thought……..

This world is filled with so much hate, so much fear, pain, and stupid politics, that I think we as humans should be ashamed of ourselves. Ashamed, because most of the things people are whining about, and crying about, in the grand scheme of things does not matter. There are children of all shapes and sizes literally fighting for their lives every single day, all over the world. Laying in hospital beds not being able to do what we all can do. Like Wally, there are children that only know what being sick is like. They literally do not know any different, or realize how much more there is outside of a hospital room.

Yet, they still smile. They still play. They still love with their whole hearts. And knowing that, and realizing that, it makes me sad and downright angry, when I see everyone complaining on social media about the most ridiculous things. I guess my point is this…. Hug your babies. Love your babies. Stop complaining. Stop playing the victim. Let go of the anger, jealousy, the fear, or what ever bad feeling resides inside of you. Instead, smile. Call up that person you’ve been fighting with. Be the first one to admit your faults, and say sorry. Volunteer. Hug a stranger. Give your free change to the homeless. Love with your whole heart. Do something that makes you feel worthy and proud. But most importantly….do not take a single second of your life for granted. Because we Bastian’s know all to well, that tomorrow is never promised. So… like Wally has taught me, I will do my best to live every day like it is my last, with a smile on my face.

Thanks for reading.

Until next time,

–Wally’s Momma 💕💕

The past couple days have been… well mentally exhausting. There have been many moments where I think “I cannot do this. There’s no end in sight”. The tears fall constantly. The sleep is broken and non existent. The weight of everything that is happening presses on my chest, to the point I cannot breathe. There are many days I want to curl up in the fetal position in a dark hole and just cry.

People have asked me how I do it. Honestly, I don’t know. You just do. It’s literally minute by minute. Hour by hour. One breath at a time. One foot in front of the other. The feelings I feel. The emotions I have. It feels like a roller coaster I can never get off. I want to scream at the top of my lungs. I want to punch something. Pull my hair out. I want GOD to tell me why. Why my baby? Why does my baby have to suffer? But….I don’t do any of that. I just pray. Pray for peace. Pray for strength. Pray for healing for Wally. And most importantly I pray for a heart.

Wally is doing well clinically. He’s very stable. He got his breathing tube out yesterday which he was very happy…. at first. You see, Wally hadn’t slept in almost 48 hours. He was delirious. And all he would do is cry and cry. And because of the breathing tube he had, had for so long he has no voice. So his cries sound like a dying kitten. Every time he would try and cough, he would cry. Every time someone other than AJ, my mom, and I touched him he would cry in fear of what was going to happen. And it is absolutely heart wrenching to sit there and watch my baby cry and there’s nothing I can do. I cant even pick him up and you can tell that’s what he wants. He’s also still very sore so every move is excruciating for him even though he is on pain medicines.

Getting him to sleep was a struggle. We’d finally get him to sleep and he’d startle and cry 😔😔. I eventually at 9:00pm last night couldn’t handle another minute mentally because I was literally losing it. So AJ stayed with him while I went back to Ronald. It made me feel like a terrible mom because I knew he needed me but I couldn’t stop crying and I knew he could feel my sadness which doesn’t help anything.

They thought about giving him medicines to help him sleep, but the problem was they were afraid it would make the delirium worse. Luckily Wally had an amazing nurse who was so good with him and vouched to try melatonin and Benadryl. It helped. He did sleep. Not perfect. But he did get some rest.

He looks much better today and hasn’t cried as much. Physical therapy came in and got him to sit up in a chair which he loved. We even were able to turn on baby bum on YouTube which he LOVES. The nurse and I agreed were going to try and get him on a schedule with two naps a day ect. We shall see how that goes 🤣.

His Berlin is functioning well. He was bleeding a lot more the past couple days but they seemed to have fixed that problem for now. The plan is to wake up his belly and start with 5ml of his formula. Which terrifies me because he’s always had stomach issues. So I’m praying it goes well. 🙏🏻🙏🏻

My parents and brother are visiting with him right now while AJ and I relax at Ronald. AJs parents and sister are coming up in a little bit. Hopefully AJ and I can get away and go do something other than be at the hospital or at Ronald. We shall see.

So now… we wait. And pray that he remains stable, he grows stronger, and that a new heart arrives soon. The days are long and exhausting. But we keep trudging on.

Thank you for all the support and love! We feel so loved and humbled by all of you! The prayers, the comments, the cards, it all helps very much! It really keeps me sane knowing how much support we have. Love you all!

—Wallys Momma 💕💕

As you all knowing Wally is currently admitted on the CCICU at Luries Children’s Hospital in Chicago. He was life lighted from OSF in Peoria on January 16th.

Now that everything as calmed down (fingers crossed), I’m feeling well enough to write a longer update. I decided to put it here on my blog so people who follow this blog only can also keep up to date with our Wonderful Wally.

A little background first. Wally became very sick and was admitted to OSF on January 7th. He had gone in to cardiogenic shock and was placed on a ventilator. After almost a week in their PICU they decided it would be best to transfer Wally while he was stable to Luries. We established with Luries over the summer for just in case purposes. Well thank goodness we did.

Once we arrived at Luries on Wednesday the 16th, everything kind of happened so fast. We started the process of getting Wally on the Heart transplant list. While doing that, Wally’s heart function drastically decreased. Whether it be due to his infection he had acquired, they still aren’t sure. They just knew he was very sick and his heart was not going to get better. On Thursday the 17th, They basically told us if they didn’t go in for open heart surgery to place an LVAD right away, Wally wouldn’t make it through the day. So off to surgery he went while we waited. 6-7 hours the surgery took.

But Wally did well like the superstar he is. Over the course of the night, it was determined that Wallys right side of his heart wasn’t functioning like it should. So they made the decision to go in again and place an RVAD along with the LVAD he already had. Another grueling 6 hour surgery. I don’t think any of us took a breath that whole time he was in surgery.

But like the fighter he is, he came through once again. TWO open heart surgeries in two days and my baby did so well with both. I am in awe of his strength and his will to live.

On Friday, the doctors and staff here at Luries worked miracles and got Wally on the transplant list, and at the very top at that! Usually that process takes at least a week and they did it in one day. We are so very blessed and thankful for everything they have done for us here at Luries thus far. They are truly amazing!

But the setbacks were not over. On Sunday it was determined Wally’s kidneys were not functioning like they should and there was talk about starting him on dialysis. He was peeing but his kidney function blood levels had only gotten a tad better. We signed all the consents but I asked the doctor before we put him through ANOTHER procedure could we give him a little more time. She agreed. Through the night, by the grace of God, Wally started peeing a lot, and his kidney function continued to improve!! No dialysis!! Praise the lord!!!

Wally has continued to have better days. He has remained stable while we wait for a heart. Last night, they gave him a medicine to reverse the paralytic and he woke right up!! I cannot even begin to describe the emotions, seeing his eyes open, and focusing in on Dad and I! My heart felt like it could burst. We of course face-timed all the grandparents and they cried of course. And since the paralytic has been lifted he has not slept! He just looks around. And is being his nosey, Wally self. Which I am SOO happy to see.

The plan is to transfer him to the Berlin heart tomorrow (Wednesday, January 23rd). Also they need to get more fluid off so they can start working on getting him off the ventilator!! And than we start PT, OT, Feeding therapy, ANNNNND I will get to hold him!! I cant wait!! I dont think I will ever let him go! It’s a slow process, and I know there will be many bumps in the road, but I am praising GOD that he is here, he is fighting, and he is doing well.

I have to thank a minute to thank all of you. Our warriors. Wally’s warriors! The prayers, the love, the support, the donations, the cards, I cannot even begin to put into words how much it all means to AJ and I. We are eternally grateful, humbled, and in awe of all of you! These past two weeks have been so rough (not even sure rough is the word), and I will write another blog at some point delving through those feelings and emotions. But for now I wanted to give you all an update and to say thank you! We wouldn’t make it through this rough patch without you all!

Until next time,

–Wally’s Momma

—Here are some pictures I have taken through out this two weeks. The Chicago Police Department, SWAT team, and bomb squad hosted dinner the other night at the Ronald McDonald House. We got to meet and touch their horses, one of the bomb sniffing dogs, and my brother was able to try on some of the gear. They have different activities every night and it is a much needed distraction. We cannot say enough how amazing the RMH and foundation is! We are truly blessed we were able to get in the first night!!

“Postpartum depression makes a woman feel like she is in the grip of something dreaded and dark, and it’s scary. . . but she’s likely ashamed to admit it because she can’t explain it!”                                                                                                    – Judy Dippel

As I sit here, having so much on my mind, I find it hard to find the words. This post isn’t per say about Barth Syndrome. But it is a topic that has been weighing on my heart a lot lately. A topic that I think is extremely important and needs to be addressed. I hope if you get anything out of this post, especially you new mothers, it’s that you are not alone.

My whole life, all I’ve ever wanted was to get married and have babies. As a little girl I would fantasize about who I would marry. What my kids would look like. What a joy it would be to raise little people who look and act like me. What I didn’t realize (nor should I have) was how it would actually feel. I was talking to a friend tonight, and we were talking about our kids and how we couldn’t believe Wally is going to be one in just a few short weeks. And it got me thinking back to a year ago. I started feeling all those same feelings that plagued me for the first six months of Wally’s life. And I realized… as hard as it is to admit, how I wish it weren’t true, or that it didn’t happen, I wanted to share my story, in the hopes of helping someone else.

When Wally was born, he spent almost a week in the special care nursery for blood sugar and jaundice issues. That whole week all I wanted was to bring my baby home. I barely slept in the hospital because I wanted to be in the nursery with him all the time. I never wanted to leave his side. I was on a high and I was just so very thankful he was ok. And than we came home. And my world as I knew it would never be the same.

It’s crazy that I am a post-partum nurse. I know what depression and anxiety is. I’ve researched and learned about post-partum depression (PPD). I’ve counseled new moms before they take their babies home on the signs and symptoms of PPD and when to get help. And yet… I didn’t realize until recently that I too suffered from PPD. But why? Is it because there is such a stigma around PPD and mental health in general, that I was afraid to admit it? That I refused to see it? This is an extremely important topic and yet no one is or wants to talk about it.

Well I can tell you why I haven’t wanted to talk about it… Because talking about it, and admitting it, makes it real. And the guilt, the fear, the sadness, that comes along with that, well it’s suffocating. But I’ve realized, no matter how hard as it is, I need to talk about it. WE need to talk about it. Because there are so many mothers out there that need our help. No one should suffer alone. NO ONE! So if you’re a new mother or even an experienced mother, please keep reading.

Wally was born two weeks before Christmas. One of those weeks we spent in the hospital. When we came home, I was coming home on little sleep with a little creature that I knew nothing about. AJ hadn’t gone back to work yet, but he would and than it would be me and Wally, all by ourselves. At the time AJ worked second shift. So he would work 2-10pm (he now works third shift). The first week home I can barely remember. It was all a blur. Did I even eat? Sleep? Shower? Who knows. But what I do remember is how much milk I pumped that Wally would never eat and how much I cried. Little did I know the tears would keep falling, and wouldn’t stop for many months.

When Christmas Eve finally came around my mom came down with Influenza. And AJ and I decided that with a newborn baby it was best that we stay home and shelter Wally from all the sicknesses that could be going around. AJ worked Christmas Eve and Christmas Day. So both days were spent taking care of a baby that was becoming increasingly difficult. He never slept. He fussed non stop. He had troubles with pooping. My day consisted of feeding, changing diapers, and begging and wishing my baby would sleep. I was a zombie going through the motions. And I was alone… on Christmas. My dad, brother, and grandparents came over for Christmas lunch and I still felt alone. I cannot even begin to tell you how much I cried, how alone I felt, how in all honesty, how much I just didn’t even want to be on this earth anymore. How scary is that? How messed up is that? Here I am so blessed with this beautiful baby and all I could do was cry and wish I would die as I rocked my newborn son in his nursery. As I sit here and write this, I cry some more because it makes me so terribly sad.

As I was talking to my friend tonight, I admitted to her that with Wally’s birthday coming up and the holidays I find myself feeling sad. I look back on the photos and the videos and I cry because I remember exactly how I was feeling when I took those photos and videos. That I wanted to die. I didn’t want to feel sad anymore. The sadness that would steal my breath away and consume me into a puddle in the shower. That my husband knew nothing about. Some days felt so long, that the pain would never end. But as an outsider looking in… you would never know. Because I would put on a brave smile. Act like everything was ok. When in fact… on the inside I was screaming. Screaming for someone to notice. Screaming for someone to save me. It was the most depressing, confusing time in my life. I would enterally fight with myself daily because I couldn’t understand why I was feeling the way I was feeling. I loved Wally. I adored him. My whole world revolved around him and yet here I was wishing I would die. None of it made sense. And I wanted to pull my hair out, out of frustration. Because after Henry died I would beg God to bring him back. That I just wanted my baby. And now here I was blessed with Wally, and it felt like I was grieving all over again. I felt worthless. I felt like a terrible mom. I felt like I wasn’t doing something right, because he wouldn’t sleep, he wouldn’t eat. What good was I? There were many times that I felt Wally.. and AJ would be better off without me. Because not only was I suffering… but my marriage was as well. This would go on for many months… I wouldn’t get help because well.. Wally would eventually be hospitalized for almost a month. I would tell myself I just didn’t have the time when all I could do was worry about Wally and making sure he was ok. Until finally, sometime after the dust had settled, and we got through his g-tube surgery, I finally admitted to myself that I needed help and I went to talk to my amazing doctor.

I have to admit…I still struggle… but I am luckily doing better on medicine. And I am starting counseling on the 3rd of December. But now, having experienced all of that…when I see that someone on Facebook has had their baby, I cringe. I pray and hope they do not suffer like I did. I also find myself grieving. Grieving for the time that I should have been enjoying with my newborn baby, yet I feel cheated instead. That time, those moments were stripped from me. I find myself angry, wishing I could get a do over. I stare at my beautiful baby boy sleeping on the monitor and tears roll down my face because I would give anything to go back and relive those moments. Do it all differently. Because even with the dark moments, there were the first smiles, the first laugh, the first words, and my heart feels like it could explode from the love and joy that I feel having Wally. PPD is real and it sucks. It takes away a part of yourself. It takes away your ability to enjoy life, to enjoy this beautiful baby that God created.

For you moms out there reading this….. you are not alone. You have nothing to be ashamed of. Do not do what I did and suffer in silence. Reach out. Get help. Even if it is a complete stranger. I wish I would have gotten help a lot sooner than I did. I think the best advice someone could have given me back than was to keep going. Do not give up. Take minute by minute. Hour by hour. Keep breathing. Get out. Take a break. Have someone watch the baby while you sleep. I know it is hard momma but trust me, it will be worth it. Because as hard as it is to think back to a year ago, I am so glad I kept going. I am so glad I decided to live. Seeing Wally and who he has become, his outgoing personality, his smile when I walk in to a room, the kisses he gives, the laughs, the cuddles, watching my husband with him, well lets just say all the pain and sadness you felt than, will soon be replaced with all of this. All you have to do is keep breathing and keep going.

Love and prayers always.

Wally’s Momma 💕💕💕

“Being a new mother is supposed to be the happiest time of your life, but postpartum depression and anxiety strip that away for a time, but trust that it will not last forever.”                                                                                                               – Judy Dippel

November 13, 2015 our world as we knew it would never be the same. It was the day where our world came crashing down. It was the day we unexpectedly said hello and goodbye to our beautiful son Henry Anthony Bastian.

Although this blog is mostly about Wally and his battle with Barth Syndrome. Our story with Barth syndrome actually began when I got pregnant with our first son Henry. We just didn’t know it and wouldn’t know or understand until three months after Wally was born.

Today would have been Henry’s third birthday… Three whole years without my baby. Although I’ve cried many tears today, I thought what better way to honor him than to share his story with all of you. Beware. It’s long. And it’s not full of rainbows and sunshine. Our close friends and family know the story of Henry. But I’ve never actually written it out for the world to see. I’ll start from the beginning.

2015 was an eventful year to say the least. I was a sophomore in college pursing my nursing degree. On January 13th (10 months to the day Henry would be born) my real dad passed away from cancer. In February AJs grandpa passed away. Two weeks later I found out I was pregnant. I have a condition called PCOS so for me to become pregnant without even trying was a huge shock! Although I was scared out of my mind. I mean I was still in nursing school!! How could I handle a baby and school? But at the same time I was thrilled. And determined to make it work. We called Henry our sweet little miracle.

Looking back, I guess you could say I should have knew something was wrong. Through out my whole pregnancy I had this doom and gloom feeling. This dark thunderous cloud hanging over me. I would say something isn’t right. He doesn’t move much. I have this terrible feeling somethings wrong. People and my doctor would say, “it’s first time nerves.” “He’s fine.” “It’ll be ok”. But he wasn’t fine and it would never be ok and forever till this day I wish I would have pushed harder. Done something. Followed my gut. But the what if’s get me nowhere so I try not to dwell on it.

On November 11th I went in for my post due date check. I was 40 weeks and 3 days. They did an NST. Which is where they hook you up to a monitor to monitor the babies heart rate. Well they didn’t like what they saw, so they took me back for a BPP. A BPP is a bio physical profile which is basically a sono with things they have to observe the baby doing and it’s scored. I’ll never forget the sono tech did Henry’s BPP twice. She had this look on her face that seemed unsure. I remember feeling anxious and asking her if everything was ok. She said it was. But I wasn’t convinced. The midwife came in explaining he looked perfect. That he was just a lazy baby and running out of room. I remember walking out of that appointment feeling defeated. I remember calling my husband and my mom crying because something felt off. I felt like I wasn’t being heard. I honestly felt crazy and paranoid. But I kept swimming and tried to stay positive.

November 12th–40 weeks 4 days. All day I felt off. I felt anxious. On the verge of a panic attack. I was extremely hot. Shaky. I hadn’t felt Henry move much at all, all day. But I went out to dinner with some friends from nursing school to hopefully distract myself. The whole dinner I was a mess. A nervous, anxious mess. I told my friends I think my blood pressure is high. I think they thought I was crazy 🤷🏻‍♀️. I went home, got on my exercise ball, and watched Greys Anatomy. After Greys I couldn’t take the way I was feeling anymore. With my blood pressure cuff and my husbands help I took my blood pressure. It was high. 160s over 90s I believe. I immediately began to panic and went to CVS to check it on their machine. Unfortunately it showed the same results.

Now mind you it’s like 9pm at night. I seriously felt like I was spiraling out of control. I went home took a shower to try and relax. Called my doctors office. I won’t go in to details about that phone call because I don’t want to throw out names or disrespect anyone. But I can and will say this. I wasn’t being heard. She made me feel like an idiot. I was told to lay down and do my kick counts. Which I had already done. I was advised that if I felt like it, I could come in. After going back and forth, and discussing with my mom and AJ we decided I needed to go. So off to the hospital we went at approximately 11pm.

After arriving at the hospital everything seemed like it happened so fast. They hooked me up to the monitors and you could tell they didn’t like what they saw. Henry’s heart had no variability on the strip. The same thing it showed the day before. No variability means his heart rate didn’t go up or down. It just stayed at the same number. They gave me oxygen. Juice. Crackers. Trying to see if he would move or show any kind of excitement. He didn’t… the doctor on call decided to admit me. Finally! Someone was listening.

The doctor did a sono and saw that Henry had fluid around his liver and that I was right he should be making bigger movements. I told him that the midwife said he was just a lazy baby and running out of room. He told me to never let anyone tell me that a baby is lazy. There is no such thing. I began to start panicking. There was something wrong. Like really wrong. I was trying my best to not cry. But I made AJ call my mom and tell her to get here. The doctor on call for the hospital called the doctor who was on call for my doctors office. And thank the lord it was who it was. Dr. Bochantin is soo amazing. And she not only would deliver Henry. But Wally as well.

The memories are a bit hazy. But when she got there she started talking csection. And that we needed to get Henry out to assess further what was going on. I opted to try a contraction stress first. It’s where they put me through three contractions to see if Henry could handle it. Well his strip showed the same. No variability in his heart rate. At this time my mom and dad showed up and Dr. B encouraged us that we needed to do a csection and we needed to do it now. We agreed. With tears in my eyes. A lump in my throat. I kissed my mom goodbye and off to the OR we went.

It’s crazy what you remember when you go through a trauma. I remember the smell of the OR. The lights. The sounds. I remember how nervous I was. How scared I was. I just kept praying over and over again. Squeezing AJs hand. Looking at him for reassurance that everything was going to be ok. At 4:51am in November 13th Henry Anthony Bastian was born. He didn’t cry. I kept waiting for that cry. Praying to God, “please let him cry. Let him breathe. Let him live.” That cry never came. I vaguely remember hearing a whimper. I also remember the nurses and neonatologist saying “Come on buddy, come on.” I remember looking over and seeing his foot move. But still no cry. I looked at AJ and said somethings wrong. He should be crying by now. He kisses my forehead and said he’s ok babe. He’ll be ok. But I knew in my heart. He wasn’t ok.

It seemed like hours but maybe only a few minutes. They scooped up Henry and took AJ with them to the nursery. You could tell AJ didn’t want to leave me but I reassured him that I would be fine. Henry needed him. And than I was alone. Alone while they stitched me up. Alone in my thoughts not knowing what was happening. In recovery I made my amazing nurse, actually insisted, that she get my mom and find out what was going on. When my mom walked in, my heart sank. She was crying. And she said, “I’m not sure. But it’s not good Kelsey.” Another nurse followed her in and said they were doing chest compressions and trying to stabilize him. Chest compressions!? That means he coded. His heart isn’t pumping. I started shaking. My mind beginning to shut down. I didn’t realize it than but my body was preparing itself for the earth shattering news I was about to be told.

Not too long after… they wheeled me into the nursery. There was people everywhere. A stretcher and the transfer team from the children’s hospital that was right next door (they were going to transfer Henry once they got him stable, but he never stabilized). Doctors. Nurses. But I remember the first thing I saw was AJ. In the back of the nursery. On his knees with his head in his moms lap crying. At that moment I shut down. My body literally shut down. I barely heard the neonatologist when she said “we did everything we could. We aren’t sure what happened. We’d like to do an autopsy. We’re so sorry.” And I started screaming. Screaming from the heart break. The pain. The confusion. Screaming when Aj came over and held me. Screaming as they wheeled me out of the nursery. I just kept screaming.

The screaming and the crying came in waves. And it would for months to come along with the nightmares. We did get to hold Henry. We got to spend some time with him. Take photos. Family and friends came. I barely remember it. I was so in shock. High on drugs. And so unbelievably exhausted I could hardly keep my eyes open. But I couldn’t sleep either. Luckily they eventually prescribed be Ambien.

We eventually knew we had to say goodbye to Henry for the last time. I cannot even begin to describe that feeling. Saying goodbye to your child. Never knowing when you’ll see them again. It was the hardest thing I’ve ever done.

The days. Weeks. Months to follow were by far the worst days of my life. Luckily our parents took over planning the funeral. The day we buried our son a little bit of my soul was buried along with him. For two weeks Aj and I did nothing but eat. Sleep (ambien helped with that). Lay around. We were like zombies. Going through the motions. But the world kept turning. And after two weeks AJ went back to work and I went back to school to finish the semester. I needed to keep busy. I was determined to finish nursing school because I knew that’s what Henry would have wanted.

The autopsy that we eventually received showed that Henry died of heart failure. His heart was four times the size that it should have been. How my precious doctors office didn’t catch it is still a question I have to this day. He also had hydrops (fluid around his organs). But no one could tell us why. I switched doctors to the doctor (Dr. B) who delivered Henry. She was absolutely amazing. The only thing she could say was that maybe I had caught a virus and passed it to him. It would remain a mystery for two years until our sweet Wally would come into the world.

And that is the full story of our sweet Henry. I’m sure there are things I accidentally left out. As time passes I forget more and more. I can say this. The doctors and nurses that were there and helped that day will forever have a special place in my heart. They were amazing. So kind. So compassionate. And eventually (once I passed nursing school) would become my co workers who I will forever treasure. They would also be the ones to be there when Wally would come in this world! Something that will forever remain special to me.

Now that I know I’m a carrier of the gene mutation that causes Barth syndrome it’s most likely Henry had Barth Syndrome which caused his heart to fail. Obviously we don’t know for sure because we didn’t have his DNA tested. But it’s pretty clear what happened. After two years we finally have an answer. Does it make it easier? Absolutely not. But after Henry and now Wally it’s put a fire in us to find a damn cure for Barth Syndrome that’s not only taken one of our boys but other families boys as well.

It’s not fair. But life isn’t fair. And all the bad that came with losing, also came good. He taught us to love unconditionally. To never take anything for granted. He taught us life is too short to worry about the petty stuff. What could have ruined our marriage actually did the exact opposite. Henry’s death brought AJ and I closer together. Closer than we’ve ever been. I miss him so much. There isn’t a day that goes by that I don’t think of him or wish he were here. But I know I’ll see him again some day. And I’m so thankful Wally has his big brother as a guardian angel. Because with this stupid disease, Wally needs all the angels he can get. And he may just have the best one!

If you’ve made it this far…Thank you for reading. Today’s been hard. This day is always hard. But all the love and support definitely makes it a littler easier. We love you all!!

Happy 3rd Birthday Henry! We love you so much and will see you soon baby boy!

—Henry and Wally’s momma 💕💕💕

Ps. if you want to honor Henry and Wally be sure to visit the link below to buy a T-shirt or sweatshirt and all the proceeds go directly to the Barth foundation in hopes of finding a cure!! Love and prayers to you all!

https://www.customink.com/fundraising/wallys-warriors-battling-for-a-cure?pc=TXN-167778&utm_campaign=fr_org_confirmation&utm_source=fr_organizer_txn&utm_medium=email&utm_content=campaign

And here it is!! In honor of our sweet Henry’s Birthday the 13th of this month and Wally’s birthday December 11th, please, please, visit the link, buy a super cool sweatshirt and become one of Wally’s Warriors!! All proceeds go directly to the Barth Foundation in hopes of finding a cure! You have two weeks!! Thank you!! We love you all and appreciate all the love and support!!

https://www.customink.com/fundraising/wallys-warriors-battling-for-a-cure?share=6741541730124498&utm_source=facebook&utm_medium=social&utm_content=wallys-warriors-battling-for-a-cure&utm_campaign=desktop-post-launch-v2&ref=facebook_social_desktop-post-launch-v2&side=front&type=1&zoom=false