An update on Easton

Easton did well through the night. His chest has been left open after the surgery to allow for swelling to go down and easy access if needed in case of an emergency. Since last night, he has not needed the pace maker, little to no blood loss, decent blood pressure,  and his kidney function has been good. The goal is to sow up his chest tomorrow and take him off the ventilator a day or two later. There are a lot of expected complications with open heart surgeries that, so far, Easton has avoided. So, we've gotten some good news this morning, but since those MAPCAS where too small for operation yesterday, we may be going through this again (and again) as he gets older. We also still don't have a good indication of the future for our little boy or even what yesterday's repairs truly accomplished because so much is dependent his heart function over the next few days and weeks. 

This has been unbelievably hard for us, passing off what on the outside was a perfectly healthy, happy, and ridiculously cute baby boy to have him put through such a grueling procedure. There are no words for it and Easton's heart still needs a lot of work to give him a chance at a good life so please continue to pray for our little man, the surgeons, and nurses who are watching him 24/7 over these next few critical days. 

BIG UPDATE

We found out this past Friday that Easton's open heart surgery has been moved up, and will now happen in two weeks. Friday, November 20th, at 8:00AM, our sweet man will have a major open heart surgery while on bypass. Dr Fraser will be performing this all day operation in hopes to address and fix Easton's pulmonary artery, MAPCA's, and lung function. This risk of this surgery is substantial but we know going forward that this is the best option for Easton. When we found out about his heart at 20 weeks, we knew the journey to fix it would be a long process and that open heart was always a likely outcome. It's our prayer that this first surgery will be successful and a step in the right direction, so that our sweet baby boy could live a long and fruitful life.

A Fine Line to Tow

Standing in the hospital room, rocking my sweet baby boy to sleep, I listened to the surgeon talk about Easton’s case, and did all I could to hold in every ounce of emotion that I could. There is nothing more daunting than hearing one of the nation’s best heart surgeons discuss the severity and riskiness of operating on Easton’s heart. Nothing on this planet prepares you for parenthood, but even more so, parenting a medically high risk child. Sometimes, the hardest part in all of this, is that Easton looks healthy. Looks can be so deceiving that there are even some days I find myself forgetting just how complicated and severe his congenital heart disease really is. Then, in that moment (or in the 45 minutes that we sat with the surgeon), I am brutally and quickly reminded of how Easton’s heart isn’t normal. Hearing that he needs an ALL day—like sun up to sun down, if not longer, where his little body is put on a bypass machine and his chest is cut open, is a hard pill to swallow. I always knew that Easton would have to have open heart surgery (multiple ones), but there isn’t anything in that moment of actually hearing the surgeon discuss how soon it needs to be, that prepares a momma as her own heart begins to break into pieces. The surgeon was frank, didn’t dance around the subject, and was completely honest. The only thing he is certain on is that this will be a risky operation, with no guarantee that Easton’s heart can be “fixed.” (Insert crying momma) He also went on to say that if we didn’t do anything, Easton would begin to deteriorate and no parent wants that for their child, either. So, with confidence, the only thing to do is to move forward, in a month, with this life altering surgery. I say life altering because all of our lives will forever be changed. 

It’s in this stillness that my mind races with thoughts (mostly fears) of what our future holds. And, honestly I don’t know what it holds. I so desperately want my son to live, as any parent would, but I don’t want Easton to suffer in this life. I don’t want the obstacles of living to be too daunting on his little body. I want to expect great things of the surgical staff and the great physician (God) but I want guard my heart from the potential hurt. And there in that moment, I find myself towing a fine line between being optimistic yet realistic. If I teeter to the optimistic side, I don’t want to get ahead of myself and not be prepared in a worst case scenario. If I teeter to the realistic side, I find myself in constant fear and angst about what is to come. On either side, I’m setting myself up for unhealthy expectations. Ultimately, I’m finding that it’s hard to surrender that I don’t have any control in this. None. Not even the surgeon. I mean, he is going to do what he can, but in the end, he doesn’t determine Easton’s future—the Lord does. 

In the midst of all of this, I’m struggling to pray. I don’t know what to pray for. Deep down, I know that I should pray that the Lord would be sovereign but it’s hard. I think eventually I will get there, but for now, I have to start taking baby steps. My own heart, even in all of it’s "normal-ness", isn’t perfect, and I am in need of some healing from the great physician. I appreciate being told how strong I am and that others telling me that they couldn’t go through it, but there’s nothing special about me; I’m just like everyone else—I have thoughts, fears, anxieties, hesitations, and buried deep (at the current moment) happiness. It just so happens that the Lord has chosen us, particularly Easton, to be a vessel for His kingdom. Ever since we found out about Easton’s heart, several hundreds of people have followed our story, his story. You’ve read my blogs (even though they have been sparse lately), you’ve commented on pictures, you’ve sent us encouraging messages, you have committed to praying for our sweet boy. It never gets old hearing how Easton has opened doors for people to hear about the goodness and faithfulness of God’s perfect plan. 

And yet, I fear the worst, leaving the hospital without my boy. Him not making it through this surgery. Or him making it through the surgery but not surviving the recovery. I see nothing wrong with having fears, it’s just what I do with them or better yet, don’t do with them, that can lead me down that a winding slope but even in my greatest fears (potentially losing my sweet boy), I know that God would still be good and His plan would still be perfect. Just because God’s plan is perfect, doesn’t mean I don’t struggle. My struggle and hurt is very much so real, it’s tangible, and It penetrates deep down in core. 

Every time I feel angst, what I want God to remind me of is how His kingdom is better. I used to ask Stephen all the time, how can Heaven possibly be better than the joy that you bring me? And now Easton? Well I can tell you that after experiencing the hurt and pain of infertility, the hurt and pain of not knowing if my unborn child would make it through delivery, and now the pain in knowing that his challenges aren’t over.  He faces a massive major open heart surgery. I am starting to relinquish the idea that this life is “as good as it gets” philosophy. Is this life all that it’s really cracked up to be? This is not to say that God doesn’t bless us with immense joys and pleasures here on this Earth, but with that comes the lust that lures people into thinking that this is as good as it gets. I don’t want that. I want more. I want to wake up every morning and go to sleep every night with the hope that there is “more” (in Heaven). I know that this is God’s redeeming grace to me because if Easton doesn’t make it, then I know that what awaits his sweet body is more than what he could ever have here on this Earth. His heavenly heart will be perfect—no transpositions of the great vessels, no MAPCAS, no pulmonary atresia and stenosis, and he will have all four chambers that work. Believe me, even as I type this with tears in my eyes, it doesn’t take away my hurt. It doesn’t take away my fears of what it would be like to wake up every day and go to bed each night without seeing his big ole gummy smile. What it does give me is a flicker of hope, that in this wasteland where I am living, that he is the crack in the door filled with light, and that is a sweet reminder that there is MORE. 

I write all of this with a heavy heart, not knowing the future of my sweet blonde haired, blue eyed boy. His smile and laugh are enough to melt you to your knees. When you look at him, you see his sweet sweet spirit and personality. He makes being a mom everything I wanted it to be and more. He makes me want to be a better mom, wife, and person, in general. Does this situation suck? Absolutely. But if I said I wish it were different, I wouldn’t have my sweet boy. The situation we are in is unbelievably hard, it shakes me to my core, but I have to believe, with great conviction that Easton has touched the lives of many people, and for that, I am eternally grateful to be a small part of God’s bigger masterpiece. 

No Mistakes

“God of mercy sweet love of mine

I have surrendered to your design

May this offering stretch across the skies

And these Halleluiahs be multiplied” 

NEEDTOBREATHE chorus, “Multiplied” 

Oh how my heart clings to the truth in the lyrics of this sweet song. I can remember being 33 weeks (ish) pregnant and going to see NEEDTOBREATHE in concert, feeling overly pregnant and one of the “older” ones in the crowd. This song came on and I as I rubbed my belly that held my sweet boy, I thought about how the lyrics reflect the anthem of our journey as Easton’s parents; our little heart warrior. I love the line that says, “I have surrendered to your design,” even though so very often, I don’t want to surrender to His design—I do but I don’t. I want to surrender to his design, but I’m afraid of what it may look like. I fear the unknown, but I should’t have to because God’s plan, even when I can’t see/understand, is perfect. Why is it so hard to willingly surrender to His plan? 

The Lord doesn’t make mistakes. It was no mistake that Stephen and I would struggle with infertility. It was by no mistake that the company whom Stephen works for helped cover the cost of our infertility. It was no mistake that we found out that Easton has heart disease at 21 weeks pregnant. It was no mistake that the cardiologist here gave us to option abort our sweet little boy. It was no mistake that the very conversation with said doctor drove us to choosing Texas Children’s as Easton’s primary care center. It is no mistake that we have been tremendously blessed by our family and friends to help cover cost while we are there. It is no mistake that strangers (turned friends) serve us by opening their home to us while we are in Houston. It is by NO mistake that Stephen and I are Easton’s parents. He picked us. Plain and simple. It is by NO mistake that we are exactly where we should be. You get the picture (Courtney)? 

So, it should be EASY for me to see that the Lord’s plans are perfect and He is steadfast--never wavering. But, it’s in the still and quiet that I sometimes struggle with the thoughts of if the worst case scenario were to happen. Why is it that I (maybe, we?) always picture the worst case scenario? If I know that the Lord is good and gracious, why do I fear the worst, when obviously if the worst were to happen, it’d still be the Lord’s best. Even in pain and suffering, the Lord hasn’t made some mistake; He knows and is in control. He’s saying, “Surrender the control…my will and plan are perfect.”  

Tonight I was dancing with Easton, trying to lull him asleep and I had the thought, I can’t wait to dance with him at his wedding, one day. Then, all of the sudden, fear and anxiety crept in and I had the thought, “But what if he doesn’t make it to his wedding day.” and it made me sad. That’s when the Lord brought the first line in the NEEDTOBREATHE song (that I quoted earlier) to mind: “Your love is like radiant diamonds bursting inside us, We cannot contain.” The Lord’s love is radiant...we shouldn't be able to contain it! Do I understand pain and suffering? No, but I have to believe and hold to the truth that it’s in the pain and suffering that I get to experience Jesus a little bit more. If anything, in my pain and suffering I get to partake in the height, depth, and breadth of His perfect, radiant love. Even when I can’t see that His plan is perfect or understand the pain of handing my sweet baby boy over to the surgical team as they prep him for surgeries and procedures, I can take peace that if I surrender to the Lord’s plan, there are simply NO mistakes. 

In this crazy and unknown season of life, I am LOVING and enjoying being a momma. Easton is “ours” but I ultimately know that he really is His. He is such a gift to be treasured. A daily tangible reminder and testimony of the Lord’s faithfulness and how He makes NO mistakes. Easton was fearfully and wonderfully made and in His image. My prayer tonight is simple, that I would be able to surrender to the Lord’s design. To forfeit all my “what-if’s” and to simply rest in His good and perfect plan. 

It Happened!

We loaded up my mom car and brought the cutest little Sparks back home. Now, with a very packed car, he probably felt like just another piece of the clutter that we had shoved into our car as we made the trek back home. As we left Houston, I cried, but it wasn’t the cry I had expected to make. Of course, there were happy tears involved, but I wasn’t expecting to have the reaction I did as we drove out of the city that destroyed a strut on my car and had the most horrific traffic ever. When we went to Houston, I was SEVERELY pregnant (and huge), and we had no idea what would even become of our stay there. We had no idea the attachment we would have for the city of Houston—particularly the hospital with the doctors and nurses who worked tirelessly around the clock to provide stellar care for our son, but just as important, the community that God so graciously provided us during our time there.

On our way home yesterday, Stephen asked me what I found most surprising about Houston, and my answer was community. Community was what I was anxious and what I had dreaded, simply because I was fearful of how or what our lives and needs would look like after Easton’s birth. God provided for us in such a big way. He used friends—new and old—to provide us with housing, meals, and just genuine care for our hearts. Houston will forever hold a special place in my heart for not only the community of those who loved us so well, but for being where Easton was born and will continue to go to receive the care that he will need to live a long life (that’s certainly our prayer). There aren’t enough words of gratitude for all of you, no matter where you are, that have ministered, supported, and encouraged us as we’ve only begun our journey.

           

We are incredibly happy to be home and more importantly to have brought our son home with us! Easton’s heart journey has only just begun; while he is doing well (and we want to celebrate that), we also know that the doctors are about 90% certain that he will require open-heart surgery to make the necessary repairs to his heart. We don’t have a time line for that because Easton’s heart is so unique that there just isn’t a “typical road map” for future surgeries. Easton will probably have his next procedure done in about 3-6 months and they will do a series subsequent CATH procedures to get his heart ready for his major repair surgery. As of now, we will go back to Houston once a month for an ECHO and appointment with his cardiologist, but in the mean time, we celebrate our biggest little miracle and the fact that we get to live as family, in our home. 

To all of our local friends and family: 

Stephen and I want to thank you for being apart of our journey and our lives. We realize that Easton is here as a result of God's faithfulness and the prayers of so so so many people. Now, comes the hard part in all of this--because you all have invested so much of your time reading my lengthy blogs:) and committed to praying for our sweet family, you feel a special attachment to our sweet man--as you should! However, seeing how he is in good health, we would like for it to stay that way as long as possible. Him being in good health, gives his body and heart the ability to grow stronger every day. 

Due to the fact that Easton's has pulmonary atresia and his little pulmonary artery is growing (we just got that news Monday--yay!), his lungs are already over circulated, meaning that his body and heart have to work harder than yours or mine when we get sick. We certainly do not want to turn anybody away from seeing Easton but we ask that you carefully think if you have been recently exposed to any sickness--whether it be you or around someone else that has been sick/on the mend. Things like a runny nose, a tickle in the throat, or a simple cough, to Easton can mean a trip back to the hospital if he were to come down with an infection. We are so excited to share Easton with all of you and appreciate your desire to continue to love and serve us in this new transition back into our home routine. 

Our Greatest Joy

To say that we had an easy pregnancy would be a lie, but to say that we  have and still feel abundantly covered and blessed in prayer, love, support, and encouragement is no exaggeration.

In the days that led up to Easton's birth,  I didn't know how to feel or react. My heart was tugged in different directions. I so baldly wanted to meet the little man who called my body home for 9 months, but I was anxious and weary of all the unknowns past delivery.

We were a scheduled c section for 10:00AM last Monday, but we were quickly delayed by an emergency c section; it was if we hadn't waited long enough, it was going to be just a little bit longer. Then, when they came to wheel me down the ominous hallway for c section prep, my body and mind were overwhelmed with emotions. Meeting Easton was something that we were never promised and my heart was overly cautious about what would lie ahead of us in the future-surgeries, echoes, unknown amount of time in the CVICU--it's a lot of take in for this simple minded girl.

With an operation room full of doctors, nurses, and the cardiac intensive unit team all into place, they finally brought Stephen in the room. Stephen has been and continues to be my earthly rock as we walk through the abyss of having a CHD baby (heart baby). He sat by my head and we talked about sports and podcasts and then in a blink of an eye, I heard the doctor say, "Oh Courtney, he has a cute butt!" and my heart started to swell a little more. Seconds later, we heard Easton cry for a quick second (we were told he may not cry because his condition was so unknown). Stephen wiped the tears away as they fell down my cheeks, a day that we couldn't have pictured since we'd received his diagnosis and prognosis. We were able to watch on screens as the cvicu team prepped him to be taken away for his assessment and that's when we had forgotten to ask how much he weighed. When the team spouted off a whopping 9lbs 1oz, we couldn't help but laugh. Heart babies don't typically grow into big babies but we were once again so thankful that our little man was nice and stout. Stephen left with the team to go be the baby as I was being closed shut and praying that my organs weren't rearranged:)

Throughout the rest of the day, I couldn't help but have a happy and full heart. My mind was still cautious, but we were so thankful to finally have met our greatest joy.Easton Bauer Sparks was born at 12:33PM and we couldn't be more proud to be his parents, even knowing that this path will be full of unforeseen obstacles, our hearts are still full of love for our sweet little man.

An update from Easton's Dad

Wednesday was an important day for Easton. Some clarity was finally received after 20 weeks of uncertainty from all of the cardiologist involved and the first steps were taken to set him on the best possible path. And let me tell you, this little guy's heart is truly as close to "one of a kind" as it can get. To give you an idea, our pediatric cardiologist has only seen one similar case in his 12+ years at TCH and they see it all here.
Wednesday evening Easton had what will be the first of many heart caths over the next few months and years. It was a 3 hour surgery but he handled it without any complications. The goal this evening was to take some pictures, get an definitive look at the veins and arteries of his heart, determine where flow was weak or strong, and intervene where needed.
Before I get into the heart cath, what you need to remember above all else, is that Easton will only have one heart ventricle (his right one). You and I have a left and a right that pumps blood through our heart and lungs. They only started successfully treating one ventricle babies 32 years ago, so the long term strength of a one ventricle heart is very much unknown in the medical community. This also means that he will potentially need a heart transplant during his life span. Not new news to us, but important in understanding the rest of his heart complexities.
The heart cath this evening resulted in the successful insertion of a PDA stint into his aortic arch. This was vital because the heart cath revealed his pulmonary artery to be very small, so small that the same surgeries other one ventricular heart babies receive at 4 months and 4 years old, will either be significantly delayed (years later) or skipped all together. The stint will hopefully allow his pulmonary artery to grow in size which is important for heart and lung function. There were also two balloon angioplasties that were being considered for this heart cath (when they insert and inflate a balloon inside an artery to assist in growth), but once inside, one was not required as flow was strong between the left and right atriums and the other was delayed so that the PDA stint would not be compromised.
His recovery from a heart cath should be speedy (24-48 hours) and with no other planned surgeries in the near future, once he starts feeding well, like any other baby, we can start thinking about going home. That could mean one week or one month. Just depends on his recovery and response to the stint.
So what does this all mean for Easton? Our prayer now is that this PDA stint will assist in the growth of his arteries, allowing the doctors to repeatedly follow up with additional heart caths to take place over the next year and thereafter until growth and stability can be reached. The goal is to get Easton to where the Glen and Fontan surgeries will be of use to him, otherwise, our Dr's will be operating where very few have gone before us.
Looking at his diagnosis and hearing what I'm hearing from the dr, I can't help but know that God has truly done some amazing work to allow Easton a fighting chance at life right now. Why? I do not know, but as I walked back from meeting with the Dr. I prayed, not asking God to heal my son, but to use him and his life to His glory. As Easton's father, that is truly my greatest desire for Easton, to see my son's struggle and life bring honor and glory to the one who gave him his very breath. Pray for Courtney and I, that we'd continue to lay our desires at His feet and trust in His perfect plan for Easton. We thank you all from the bottom of our hearts for the love and support that you all have so generously given that has gotten us to this day.

Where to Begin...

Where to begin? So many thoughts and emotions surrounding this baby’s arrival, the gravity of his condition, and how our lives are about to change forever, loom on this pregnant momma’s mind constantly throughout my days. I’d be lying if I said that I was ready to for this new chapter to begin. If you’d told me a year ago that I’d be about ready to deliver our first child, I would have been overwhelmed with joy and excitement, after struggling with infertility for years. I have been wanting to write a blog for the past couple of days but there are so many different aspects that I want to write about; I don’t know how I would successfully cram it all into one blog—but I’m daring enough to try!

I have to tell you, that Stephen and I have been overwhelmed by how the past couple of weeks have played out. I don’t think I could even begin to effectively communicate just how much God has provided for us and continued to pave the way as we prepare for Easton’s arrival. People, some strangers and some friends, have willingly opened their homes to us over the past few weeks. When we found out about our little man’s condition, I always had a peace when it came to where we would stay in Houston; I never once doubted that God would provide and He certainly has. We’ve met people and attended churches who have heard of our story, and who have been faithfully praying for us since they found out about Easton. As I try to wrap my mind around it, it’s hard to process it all because it’s bigger than my little mind can comprehend. That’s when the tears, uncertainties, and doubts about Easton’s diagnosis and condition seem to slow down a little because I think about how God is orchestrating it all—He has captivated my heart to trust him because Easton’s heart is not perfect.

Recently, three of my friends have had babies, and they have all shared how they are excited for me to experience motherhood with Easton, but I can’t help but question what motherhood will look like (for me). Part of me thinks, sure, I’m just the same as them, but then the other part of me, knows that I’ll have such a different experience. I think one of the hardest parts in our situation is acceptance. I’ve played along, accepting news as it comes because that’s what all moms do—you do what you have to for your babies. But some of the hardest news to accept is knowing that I probably won’t get to hold my son until the day after his birth. (Insert dagger in my heart) I’ve been scheduled to have a c-section, and I honestly never made a birth plan because I didn’t even know if I would make it full term. Well, here I am, nice and plump, 39 weeks pregnant, and finally having to accept being cut open (that sounds dramatic—but it is true). After they get Easton out, they will show him to me, and then a team of NICU doctors will stabilize him and assess his condition before they take him off to the CVICU. Stephen will go with the baby and the NICU team over the CVICU, as the cardiology team begins to run his first echo and try to put define his diagnosis. All the while, I’ll be sewn up and wheeled away to recovery. Once I’ve been in recovery and then relocated to a hospital room, I’ve been told to expect a potential 12-hour recovery before I can go over and meet my son. I don’t even know what to think or how to process being in the hospital, birthing a child, and then having to wait to meet him. It’s hard and I’m sure I’m not the only one who has ever walked this path, but it doesn’t make accepting that it’s my path any easier.

As a believer, Easton’s heart not being complete doesn’t make me question the existence of God, but it does make me question why God chose us to be Easton’s parents and why his little heart isn’t whole. I know that deep down, his heart not being whole and the pain/suffering we’ve endured the past four months has made us cling to the truth and hope of something greater than all of our affliction. Hope. A hope of a life that knows no sorrow, pain, suffering, and where we are all complete. For those of you reading who aren’t a believer, it’s ok. You don’t have to believe what I believe and you can totally think that I’m sipping on some “kool-aid” theology, but at the end of the day, I go back to my core and put my hope and faith in the one who holds my future. I can tell you, with assurance, that I do not hold my future, nor do I care to at this point in time. I don’t understand it all but even tonight, as we were eating dinner, and I was overly emotional (again—what is up with these 39 week pregnancy hormones?!?), Stephen reminded me that all of this is for the better. How? I don’t know, but if I ever find out, I’m sure I’ll write a blog post about it:) 

So, what’s next? Well, we wait—with great anticipation, fear, worry, concern, but also with hope. This time, next week, we will have a son, as long as he doesn’t make his arrival before then. Easton Bauer Sparks is set to make his debut next Monday, June 15^th. I can’t begin to tell you how much this date overwhelms me but it makes me think back over our journey and know that it is from the prayers, love, encouragement, and support of so many that we’ve made it. What started off as a beautiful February day ended up with us hearing potentially some of the hardest news of our married life—that our little boy’s heart was broken, he wasn’t promised to live a long life, and I wasn’t promised I’d make it to full term pregnancy. Today, a beautiful day in June, I write being 39 weeks pregnant, with a baby who weighs over 8lbs, and his health and growth has left the medical community puzzled. Easton is a fighter. He is the little red ninja. He has made our marriage stronger. He’s made us focus on what’s important. He has brought us closer to friends and family. He’s taught others how to help those in pain and suffering. And all of this, before he even takes his first breath on this Earth. It takes me back to one of my previous thoughts in this blog—why us, why were we chosen to be Easton’s parents? All along, God knew and He still knows what’s best for us. On days like today where my brain is in panic mode and I can’t seem to wipe the tears fast enough, I’m reminded that God has chosen us to be apart of a beautiful story. A story who’s ending I don’t know—there isn’t a summary on the back of the book; it’s one of those stories that you have to patiently read page by page. 

A Hard Walk

Words can’t begin to explain my thoughts and fears on bringing Easton into this world. A world that I fear is going to have complications far beyond what his little body is expecting. It’s overwhelming. Daunting. Scary. And yet, I am still able to find some excitement. Stephen and I have dreamed and prayed about starting a family of our own for years, and in a few short weeks, less than three to be exact, we’re going to meet our son. I think know that keeps me going; getting to see this baby that I’ve bonded with over the past nine months. The little stinker who continues to be breech, loves to nestle his head up in my ribs, and makes me take more trips to the bathroom is going to be here in a matter or days or weeks.

Today we talked with a NICU doctor and then we did what no parent wants to do—toured the CVICU (cardiovascular intensive care unit). There are no words to express the pain and heartache of knowing that your precious newborn baby will be whisked away and join the ranks of the other heart warrior babies who are fighting for their lives. Nothing can prepare you for walking through a room filled with beeping machines, chords and wires everywhere, doctors, nurses, and seeing little bitty babies not being able to be held because they are being kept alive by the very chords and wires that hold them down. The very babies and parents in that room are real people experiencing real pain; a pain that I can’t fully describe because my precious little boy isn’t here yet. I know the moms and dads in that room looked at Stephen and myself, even though I tried to hide behind my husband, and probably hurt for us—novices just not aware of the full gravity of the journey that lies ahead of us.

Leaving the hospital, I was quiet, as I’m sure seeing and experiencing what we did today would leave many of you speechless. I was overwhelmed with all of it. So many of you have done such a good job checking in on us and are always asking how I’m doing, and almost all days I’m doing well because if I think about the entire situation and the sheer uncertainty of it all, it’s too much to process. Today was one of those days that as we were in the car, I told Stephen it’s hard for me to wrap my mind around the concept that there’s something wrong with Easton. To me, he’s your typical stubborn little boy who like to kick, wake me up in the middle of the night, causes me back/rib pain, and makes me lose feeling in my hands. To see the babies and even kids in the CVICU fighting for the lives, makes Easton’s heart condition all to very real. He really is and has to be our little red ninja. He has to be a fighter and ninja strong. To all of you who are praying for and rooting for our little red ninja, just know that we need every ounce of it moving forward.

A New Way to Show Your Support

So we have two really cool opportunities for you to support our Little Red Ninja. Two different t-shirt designs have been made for Easton and we invite you to order one or both:) Both T-shirt designs have a time limit, so if you are interested, please order soon!

The shirt on the left hand side of the screen, features a front and back logo and message created by my little sister, Emily England. You'll notice this image has been reoccurring throughout many of my blog posts. The website for this shirt design is: https://www.booster.com/healing-eastons-heart

The shirt on the right hand side of the screen was created by our community group and designed by David Hemphill. The website for this t-shirt design is: http://teespring.com/the-little-red-ninja

We are honored that our friends and family continue to show support for Easton.

Hope

As I sat looking at stacks and piles of clothes and other necessities for Houston, I felt totally overwhelmed by it all, but I had a sense of peace. That peace was rooted in hope. In such a busy season of life, with so many unknowns, I felt a sense of hope packing for Houston. What for weeks had seemed to be this daunting task (don’t get me wrong, it still was) that I kept trying to push to the back burner, on the day before it was my time to go to Houston, I felt hopeful. To some of you, that might not be a big deal, but for me, it was monumental.

We found out about Easton’s heterotaxy and complex heart condition at 21 weeks and honestly were just unaware of how severe it all was. We knew it wasn’t good and were given a hopeful diagnosis at first, but seemed to back-peddle there as the weeks progressed. About three weeks after his diagnosis and multiple doctor appointments, I received a call from one of our doctors with some of the most gut-wrenching news that would make any parent fall to their knees. The doctor called to tell us that it was the last chance to abort the baby. A baby that we already loved, cared for, and who already had a name and a place in our hearts forever. We were in the car and I made Stephen pull over in a random parking lot as a sobbed at the lack of hope that there was from the medical community. They just couldn’t commit to saving our son and to give him a fighting chance at such a big life. I will never forget that phone call, the sound of the doctors voice as she told me what a hard and difficult life Easton had ahead of himself, and that she wasn’t sure if he would/could make it. From that night on, we knew that our only option was to continue to trust the Lord…to know that he is He is our hope, our supplier, and in Him we trust all things.

Well praise God for his sufficiency and placing people in our path who love us enough to push us to fight back for the best care for our son. And not but a week a half later, we were headed to Houston for what we thought was just a second opinion. When we left Houston, we just knew it. We knew that the physicians, doctors, nurses, sonographers, radiologist, cardiologist, surgeons at Texas Children’s were committed to providing Easton with top notch care and to do everything in their power to give our son a chance to live. A chance to live…doesn’t that inspire you to be thankful for your life and health? Doesn’t that give you hope, something to fight for. For us, we are so incredibly thankful for the people who are hopeful that their creative minds, tools, and technology can give Easton a fighting hope to live a his life.

As I was looking around at all the clothes, bags, and baby stuff that we had to shove in the back of my car and I felt hopeful. My heart couldn’t help but hurt for the moms and dads who receive the news that their sweet babes don’t have a chance for life; women who carry babies to half or full term knowing that their child is not going to survive. Those are the true heroes and warriors. Even looking around at all that crap that had to be packed up, the Lord instilled a sense of hope into my tired pregnant body and mind. A hope that I could get to bring home my son and get to embrace all the ins and outs of motherhood.

Not but a few minutes later, Stephen walked in as I filled bags to the brim and squeezed zippers shut, and asked him if we knew that THIS was the path before us (before we even got pregnant), if he would do it again. And his answer was simple and in harmony with the same thoughts I had had not but a few minutes later, “Yes, as long as Easton was given a chance. A hope at life.” It sends chills down my spine even as a type it because it’s just a reminder of how the Lord has continued to allow us to walk through this trench together as a couple and has kept us on the same page.

I recently got a sweet card from one of my students and the mom wrote me a note that sent tears down my face. What the note so beautifully said was that she knew that I had always dreamed of being a mom, even as a little girl, but never in a million years would this path been the one I was dreaming of. And she’s right—it’s not. But what it said after that was that this is the Lord’s perfect plan for my life—this is what He had for me and that I should take comfort and joy in that He is my hope, my supplier, and in Him I should look and trust in all things.

I end this blog only to say, that on Monday we met with the cardiology team at TCH and you know what, the entire team is so perplexed and intrigued by our little man and all of the unique qualities of his heart, they wait expectantly on his arrival. Even the medical students/fellows that have been working so closely on our case are excited to see what becomes of Easton’s heart and want it to happen before they graduate. To me, that gives me the ability and strength to reflect back on that night in the parking lot and the doctor on the phone who said “last chance,” and it instills in me a thankful and hopeful heart that the Lord has a greater plan and has been at work as He continues to form and grow Easton into the true masterpiece that He has designed him to be.

So Many Questions

To say that I've had a lack of words to share is not true, but what I seem to lack is time. For some reason, ever since we got back from Houston, really ever since we found out about Easton's heart conditions, life has been nonstop. Our weekly schedules are filled with work obligations, doctor’s appointments, and more. There are some days that I literally have to make a list of people to text back because the day gets so busy and pregnancy brain is real! Needless to say, Stephen and I are in desperate need of rest and rejuvenation. For those of you who have kids, you’re probably laughing because once said baby arrives, there is little to NO rest.

           In this season of business and with all of the unknowns, cue in a tired and weary mind. We all know that when we're worn down is when fear and anxiety quickly seep in rule your thoughts. Well, I am no different. I was recently sharing with my one of best friends, my thoughts and fears about having this baby. On a daily basis I get bombarded with a million questions, to the point I'm thinking about making shirts that say, "I don't know." Honestly, I don't know much of anything other than I have fears and I am scared. I don't always see fear as a crippling device but rather as something to propel me onward. I see fear as one side of the seesaw but on the other side I see hope. Every day is a balancing act. When I'm afraid about the birth of my son, I think about the hope of him being healed.

The absolute hardest question that I get all the time (because apparently I look like a whale (with potentially another 6 weeks to go) is, "Oh, I bet you're getting so excited! Aren't you?" And truthfully, I’m not. It's selfish of me and I'll explain why. Every day I get to experience the kicks, jabs, and body limbs in my ribs of this sweet little peanut; Easton is very alive in me (even as I write, he is making his presence known). However, the moment that he is born, and the cord is cut, there are no assurances. I can't supply him with life anymore. He will no longer depend on me. I have to let go and trust. As a mom, it makes me sad to think that I'm going to be completely helpless as we watch health care workers, cardiologists, and surgeons try to save our little man's life. Even as the time to his birthday approaches, we still put our hope in the Lord. We put our hope in Him not that he would miraculous heal him (although it is on the prayer list), but that He would continue to lead us, strengthen us, encourage us, and prepare our hearts for His greater plan. So much of the journey to pregnancy and even now, I’ve learned and still am learning to not put my hope in a particular outcome. God shouldn’t have to work around my expectations for how I think the plan should be designed. Obviously, this is not the path I had envisioned for Stephen or myself. Having a baby with rare forms of heart disease was nowhere on my radar, but it’s the Lord’s perfect plan for our lives. I don’t understand it and doubt I ever will, but I take comfort in that He has already gone before us and paved this path. Regardless of the outcome, I pray that my faith is strong enough to say that God is still good, that He knows and loves me.
          

I'm strong enough to know and willingly admit my weaknesses. There are SO many days when I think I'm not strong enough to walk this journey, but this is when I’m challenged to lean on the Lord and I am so encouraged by many of you. Receiving sweet phone calls and text messages, cards, hugs, gifts, etc, all of these are tangible ways in which the Lord is constantly reminded me of how he has surrounded us with such an army of supporters who are helping bear our burdens.

Life is Really Changing

So much about this pregnancy has been unplannable because of Easton’ heart disease, making this OCD planner and avid list maker just surrender that I have no control over life. For those of you reading this, and who know my family, I come from a long line of planners and analytical thinkers, and that gene was 100% passed down to me but the jury is still out on whether it’s a healthy gene to have or not:) 

As we have/continue to walk this very unclear journey with our son’s heart condition, I’ve thrown my hands up and haven’t spent more than two seconds even trying to figure out what life will look like once Easton is here. So many new moms think about what and how the rhyme and rhythm of having a newborn will look like, and when I think about that it makes me laugh because secretly they do know. They know that they will incur many sleepless nights, lots of middle of the night bottle feedings, and being home ridden for the first few weeks as the baby builds up an immunity his/her new world. When I think about the rhyme and rhythm of life, what would have once given me anxiety, for the past 11 weeks, the Lord has given me a peace to just really enjoy this very active baby who calls my belly his home. Are there days that my mind gets ahead of itself and doubts/fears/questions creep in and consume my thoughts—absolutely, but in general it’s been such a blessing to be able to rub my belly and to be thankful for each and every day this unique and special little boy is alive.

Being pregnant is by far the coolest and most humbling experience, and I don’t say that lightly because for so long I read blogs and visited websites of people who were pregnant and maybe just never understood what a blessing it was to be pregnant. I’ve walked the path of infertility that was full of pain and heartache not knowing if I’d ever be able to experience the true miracle of being able to carry a baby. Looking back at our path of infertility, I absolutely know that the Lord was using that experience to culminate and grow our hearts (mine in particular) for this long journey. Infertility was just another road that lent itself to not be able to be planned, with many unknown variables (in our case), and I can’t help to make the connection that it was just the beginning of God making me surrender my desire of control.

Well, yesterday was the first time in over two months that we got definitive news. I’m having a baby! Haha, that seemed more fun to write than what I was actually going to write:) We had another very long day of appointments and check ups with our new doctors in Houston, and we felt such a peace about the doctors that have been put in our path to help care for me as well as our son. However, yesterday was the first time in over two months that a doctor gave us some definitive news, and that was the actual date that Stephen I would have to temporarily relocate to Houston. (I’m sure that wasn’t as climatic as you were expecting but let me explain.) That date became a lump in my throat that was hard to swallow for the rest of the day because it means that life is REALLY changing. Having a baby is a already a huge change, but having a baby with special cardiac needs, that requires him to be at one of the nation’s best hospitals for cardiology care is even bigger news to accept. As I sat and listened, (once again didn’t think about the logistics of moving—for some reason that doesn’t freak me out—praise God) my heart became overwhelmingly sad at the thought of leaving our home, missing weekly dinners with the Dukes, last minute get-togethers with the Chevaliers and Eadies, roaming the halls of school as I catch up with work friends, the sweet belly rubs from some of my favorite students, walking into church late on Sunday mornings, and probably the most difficult—missing the birth of my best friend’s little girl. Even as a type this, it’s hard to not get teary eyed at just how life is REALLY changing. I know that this is not permanent but when life throws you a curve ball, it’s nice to be able to fall back on the comfort and security of the “knowns” but those are far and few between in Houston. I know and trust that God will continue to lead us and guide us along this road. Never once have I felt abandoned; questioned what the heck God is and was doing—totally, but have felt the love and support by so many people.

We also had another heart echocardiogram yesterday that caused even the nation’s most skilled cardiologists and fetal imagers to scratch their heads. One of the doctors asked during the scan what our occupations were and I said that we were two very ordinary people (a teacher and CPA/financial analyst) but we just so happen to have a son with an extraordinary heart—to that she couldn’t agree more. The good news in all of this is that Easton continues to grow and so does his heart. Some of the intricacies are becoming more defined but there are still a lot of puzzle pieces that are actual question marks scribbled on the heart diagrams that we receive. I’m actually not going to explain what we’ve been told because it has literally changed at every appointment but what I absolutely can confirm is that Easton has a rare and unique heart and heart disease. The cardiologist even confirmed that the fact that he wasn’t naturally aborted in early pregnancy and has a heart that is this unique is a miracle. That’s right people—our little red ninja, is a special little boy that God has big plans for! This mamma fails to see and remember that sometimes but Easton has been so fearfully and wonderfully made and God has deemed his life into existence for a purpose.

As we left Houston early today, my heart was just sad and tears started to roll down my cheeks. I was just overwhelmed by our weekend. Stephen and I talked about how we didn’t do a good job protecting my heart this weekend. It was great to see friends and spend time with them, but what my heart longs for is hard to put into words. I wish our situation was different and as much as I want to control the situation and change it, somehow ALL of THIS is for God’s glory. I can’t explain it and some days I have a hard time understanding it, but deep DEEP down I know it’s the truth. After thirty minutes of me blubbering, I had the thought that the next time we make the drive from Houston to Keller, we will hopefully be bringing the cutest little Sparks back with us. Even now, it’s hard to not let that make the tears start to flow again. The thought of a car seat in my “mom car,” with sweet baby Easton inside of it makes my heart bounce with joy. A day that my heart and mind dream for and pray that we will get to experience with this little doodlebug. I know that God specifically put that thought there because it gives me hope on this hard journey that we walk.

A lot of you have constantly been asking what to be praying for specifically in regards to Easton’s health. Well, you can be praying for a full term baby, for the rest of his body to continue to grow and develop, for his heart—that it would continue to beat strongly and that his blood function would be sustained—if not improved, and lastly for the doctors that will be working closely with us to monitor him for the remainder of this pregnancy and after his birth. We still are working with the knowledge that within the first six days of his life he will require surgery (could be a major open heart surgery where he is put on a bypass machine or it could be a less invasive heart surgery…if that is such a thing). With all of this information, we do know that as of now, he will need a series of reconstructive surgeries over the course of his childhood years to help get his heart to where it needs to be to sustain life.

Stephen and I have been blown away by those of you who have asked how you can financially help us as we are about to relocate and incur a whole new level of experiences. We were completely humbled that some of our closest friends here started a Go-Fund-Me Account for us, specifically in regards to Easton’s health care in Houston. For those you who have already given, a thank you will never be sufficient. (If you are interested in donating, you can find the link towards the top right hand side of the page) To those of you who have given your time to pray for Easton, a huge thank you will never be enough. For those of you who are constantly texting or stopping whenever you see us to check in on us, we are so grateful. Even as we walk in a hazy abyss, for our supporters—in every way, we are blessed immeasurably by your diligence to love and continue to peruse our hearts.   

Back and Forth

 After our Houston trip, Stephen and I had initially decided to not go back to the cardiologist here, but after thinking about the situation and really needing to put Easton’s health first, decided to keep the appointment. As we are learning to navigate this path as parents, we find ourselves not just thinking about ourselves, but our son. To us, it seemed silly to keep bouncing back and forth between the cardiology team in Houston and in Fort Worth, but as we’ve quickly come to learn, life doesn’t always happen the way you want it too. We finally decided that if anything were to happen before 36 weeks, that the cardiologists here needed to have the most up-to-date information we had be given in Houston.

 Our FW appointment day, originally scheduled for Wednesday, all became seemingly frustrating when I got a phone call on Tuesday from the doctor’s office. Basically, everything we had done in Houston a week and half ago, was going to repeated here and billed to insurance (we have been blessed by wonderful insurance, thanks to my husband’s gracious employer), but were told that there was a high chance that our services for that day wouldn’t likely be covered. Going back and forth between the doctors, I became overwhelmed and was about to call it quits and just forgo the appointment. I called Stephen and said, “If you want this to happen, you make it work. I’m tired, stressed, and overwhelmed,” and the fearless leader that I married, fought the battle for me, no questions asked. He managed to land a consult with cardiologist and her nurse at 3:00 this past Thursday (don’t ask me how—he even said he was polite).

 When we sat down for the consult in the small purple box of a room, my heart immediately started to beat a little bit faster. I’d like to tell you that each time we meet with a doctor that it gets easier hearing them talk about Easton’s complexities and what I like to deem “uniqueness,” but it’s still hard. It’s hard to hear that your dreams of a simple pregnancy with routine check-ups, buying cute baby clothes, anxiously awaiting baby showers, and the list of “normal” pregnancy task goes on, comes to a screeching halt and your world is literally flipped up-side-down. Nothing prepares you for heartache, difficulties, or even hearing the many opinions of different doctors. What my heart aches to hear when I sit across from the many doctors is that our son is going to be ok and that he is such a fighter that he’s going to make it, but there’s no guarantee. It’s a tough pill to swallow and I don’t know if it’ll ever get easier to wait for the knock on the other side of the door, right as the doctor walks in.

 The cardiologist and her nurse didn’t make us wait too terribly long, and wasted no time as she started to talk about his “severe and complex” heart disease. She read the records from Houston, looked over the images, and said, “I don’t agree with their diagnosis.” Stephen and I looked at each other, both thinking to ourselves, “Of course they don’t agree…” Now, both cardiology teams agree that his heart is flipped, it’s in his right chest cavity (instead of his left) and that he is a single ventricle baby—meaning he only has three working chambers. Outside of those two things, the actual diagnoses differ; he still has heart disease, but the intricacies of his heart appear differently to different people. It’s funny (not really) but as we’re sitting there listening to the doctor say that she is confident that she is right and we know that the Houston team is confident that they are right, it all becomes seemingly clear that no two doctors can agree. Frustrating, nonetheless. However, it does give me a flicker of hope that God isn’t done molding our little peanut yet and that nothing is medically been deemed definitive.

 While both hospitals believe that they are 95% sure that their own diagnosis is correct, there’s a small part of my heart that knows that a miracle can still happen. I say a small part because I in no way proclaim that God is going to perform a mighty miracle on our little boy. Would I love to be able to say that definitively, sure, but what I can hold fast to is the truth that God is going to be good to us regardless if a miracle is performed. Whether or not God chooses to heal Easton before his arrival or either after his arrival, by surgery, or decides that his little life would be filled with many obstacles that far outweigh his bodily strength and he doesn’t live a long life on this Earth, I still know that He holds our future. I would think that every time I write about the different outcomes the acceptance gets easier, but it doesn’t and I don’t know if it ever will.

 The other day, as I was walking down the hall at school, some of my sweet students from last year saw me and yelled, “Mrs. Sparks, is Easton moving and kicking?” They all ran up and quickly started rubbing my belly and sure enough, being a ladies man, Easton started moving and kicking around. They were so sweet as they talked about holding him and babysitting for me (one day), that it breathed a breath of life back into my overworked mind. When I’m being over analytical about the “outcomes,” I’m so thankful for the sweet innocence of children (if you have kids you’re probably chuckling to yourself…) but it’s so true. Children aren’t plagued with the statistics and variability of every life situation; they just live life, embracing whatever comes their way. I’m trying to embrace that approach, to quit worrying about the future and asking myself if should I buy this outfit for the baby, but to simply have the faith and trust that He will continue to guide us on this journey and supply our needs.

 So, where do we go from here knowing that the hospitals don’t agree? We still go Houston because we have a peace about it being Easton’s hospital. As much as it pains the Fort Worth love and pride in me (to know that our son’s birth certificate will read Houston, Texas), we are putting our son’s needs and comfort before our own. I would love to stay here, surrounded by the friends (now our FW family) and be able to come back to our home every night, but for some reason God has placed Houston in our midst and we’re continuing to trust that it is the best place for our son.

Team Easton Bauer Day

Fear. It has an uncanny ability to seep in my mind and put doubts in my thoughts about Easton and life. Yesterday was good day. I was a "ninja mom," hopeful to get to hold my baby boy, wipe his snotty nose, and swaddle him to sleep. This morning, was a different picture. My heart was burdened my mind going 90 miles an hour, wondering about the rhythm of how and what life will look like after Easton is born. To make matters worse, I revisited a blog that had been given to me, of another "heart mom's" journey, and sadly, her sweet baby did not make it past four months of age. As I read her raw emotions of losing a baby, tears filled my eyes and began to roll down my face, just pained to learn of her loss. Her child, successfully made it through their first major heart surgery, but ended up dying from an infection. The same infection that you or I have had several times, but her sweet babe didn't survive.

Fear. I'm afraid of this path that Stephen and I continue to walk. On days like today, I don't feel like a ninja mom, I feel like blubbering in the still and quiet of Easton's nursery, as I sit and try to regain focus that God has already paved our path, Easton's path, and will continue to lead and guide us. I so badly wish that I could tell you how brave I am and that I can be strong irregardless of bad days, but I, myself, do not have the capability of doing it alone. Really and truly, I cling to my faith, and hold fast to the truth (sometimes it's begrudgingly) that I am loved and that God is in control of all things. I was talking with someone at work, and they mentioned how I was being bold in my faith, but the way I see it, is that there is NO other way. I don't know how I would walk this path, without the hope that I don't have to hold my future, but to know that someone else who deeply loves me does. His plan is far superior to mine and although hard to see where this ship is sailing, is for my good and His glory. I can't look back on my 26 years of life and not tell you that God hasn't been faithful because He has. I have to have something to anchor my soul during tribulation and that is God. I know that it's easy for others to mock my beliefs but it's all I have on days like today.

Thankfully, the Lord was gracious and didn't allow me to sit and stew in sadness for long. Literally, as soon as I could not read any more, I received a sweet picture from my sister-in-law of her company in shirts that they had made for a heart walk in Baton Rouge. On the shirts was a ninja and it said Team Easton Bauer on them. It was hard to not get choked up thinking about how thankful we are that people are ALL over the place praying for us and supporting our "little red ninja." Stephen and I personally don't know the people that are wearing the shirts but that doesn't matter. They represent only a small portion of people who are supporting us and our sweet little boy.

              

Obviously, I know that not all heart baby stories have to end in tragedy. I so badly desire to see Easton grow up, to be a strong little boy, and a true warrior. One who doesn't give up easily, fights for what is right, and who's life can be seen as a pure testimony of how God can save the sick and heal what doctors say is beyond healing. Whatever His plan, He will continue to make the way and will be my strength when I have none.

I know that I end every blog by thanking those of you who have joined this journey with us but on days like today, it's the truth. For those of you who are constantly pursuing our hearts and loving us so well, a simple thank you will never be enough. We love you all and not a day goes by that many of you don't reach out to let us know that you love and support us. Happy Team Easton Bauer Day❤

Another Step in a Long Journey

Pure exhaustion and running on fumes, but so thankful to have had the opportunity to go to Houston yesterday for a second opinion on Easton’s heart. We started the day off with a hospital arrival time of 7:00 where we opened up the women’s pavilion for the day. Our first appointment was a comprehensive ultrasound that would scan Easton’s anatomy before going in for an MRI.  The purpose of the ultrasound and then MRI was to tell the depth and complexity of his “left side heterotaxy,” in regards to his stomach cavity organs (intestines, spleen, kidney, gall bladder, pancreas, liver, etc.). After an hour worth of ultrasound, the pediatric radiologist came in to check the images to see if we needed to proceed with the MRI. The radiologist was able to get all of the images he needed and we did not have to proceed with the MRI, which was great news and another procedure to not have to go through. He also gave us the first piece of GOOD NEWS…Easton’s heterotaxy, specifically, in his stomach cavity, is not as severe as originally diagnosed. In the original diagnosis, we were told that they believed he was missing his spleen, had mal-rotated intestines, off positioned stomach, liver, and potentially several other organs. He has a spleen (which is wonderful news because it means that he won’t have to live on penicillin his whole life, to fight off infections), his liver is slightly off positioned but not detrimental, and his intestines may need surgery to “tack-down” but it is not for certain and we won’t know until his birth. If he does need surgery for his intestines, the surgeon seemed confident that it was an easy procedure with promising outcomes for his intestinal function. Finally, some good news! We were excited to hear that what was going to be a long road of reconstructive surgeries for his “stomach cavity” organs would no longer seem to complicate his long road of reconstructive and complex and delicate heart disease surgeries.

Our big appointment with the “heart team” was scheduled to start at 1:00, and they did not waste a second in getting started with the echocardiogram. An echocardiogram is a fancy word for a heart ultrasound that looks for the detailed and specific intricacies of the heart. We had a “fellow” start the heart echo, right at 1:00, and he scanned me for over an hour, not really talking or saying much through the scan. You see, you either get a tech who can scan and talk or someone who just doesn’t talk at ALL through the entire scan. Most of you know me—which I am a talker, and I hate that awkward silence and the “mmhmming” sounds during any kind of scan. Knowing that Easton has heart disease, I hate those noises that just seem to confirm that things aren’t working and connecting like they normally should. I’d rather just chat throughout the ultrasound and the tech takes my mind off what is really happening. It makes me cringe to think that someone else is looking at Easton’s heart and thinks “These poor people…just unaware of the road ahead of them.” After the fellow came in and completed his portion of the scan, a sonographer came in and did another 45 minutes of scanning, but she was talkative AND not to mention a LSU fan and SAINTS fan. I liked her. Stephen and I enjoyed the conversation on football and just all things Louisiana. By the time that she was done scanning, I had been laying down (on back, which isn’t comfortable) for almost two hours. She left us and said the cardiologist would the come in and may want to do more scanning. We waited about ten minutes on the cardiologist and she came in and said, “I need a double shot of espresso for your baby’s heart!” It kind of made me giggle (to just take everything in stride) that a skilled cardiologist was put to the test when viewing the abnormalities and intricacies of Easton’s heart. She scanned me for another thirty minutes, and then was ready for the round table discussion. This time around, I wasn’t terribly anxious because my phone was literally going off left and right with friends’ texting me scriptures, sweet messages, and telling me how strong I was. Me…STRONG?!? But obviously that strength comes not of me, but of the Lord.

Amazingly, even though we were tired, we anxiously awaited to hear about Easton’s heart at the round table discussion. Remember, no one really said anything during the scan, so we really had no idea what we were about to hear, but we obviously knew we were still going to hear that he has heart disease. And, once the cardiologist came back in, she did confirm that Easton’s heart is so intricate and complex, and was by far one of the MOST difficult hearts to image in her entire career as a cardiologist. Stephen and I looked at each other and weren’t sure whether that was a compliment or just another indication that our little boy is beyond special and unique, which he is.

Easton’s original diagnosis was Pulmonary Atresia, MAPCAs, and a ventricle complication. His new diagnosis is just as severe and below I’ve typed out what the new diagnoses are.

First, Easton now has only a three-chamber heart (opposed to the normal 4 chambers) because his right ventricle is no longer functioning. At the original diagnosis, he had 4 working chambers, but with ventricles being disproportioned in size, it was workable. Now, however, he has lost function in his right ventricle, which is sad to hear and medically will no longer be of use. It will always sit there, unless by some miracle, be unusable and nonfunctioning. Therefore, it will put extra stress on his one working ventricle. The only bright spot we can find is that if he had to only have one functioning ventricle, we’re glad that it’s his left one because that is the more muscular one and his left ventricle will now have to work over time to process the blood flow. However, being a single ventricle baby is going to require extensive surgery and work to be done and we will just have to wait and pray for how he responds to surgery. 

Second, what was originally considered as Pulmonary Atresia, it appears (remember the heart is no larger than a strawberry, so it can be hard to see the intricacies) that he has his Pulmonary Artery but it is the more dominant artery (between that and the Aorta). Because the pulmonary seems to be much larger, the Aorta is now the artery that has been shorted in growth and is too small to function on its own. Both arteries have important jobs and with his aorta being too small to function, this will also require extensive surgery.

So, Easton doesn’t have MAPCAs or pulmonary atresia but exchanged those two types of heart disease for another two types. It’s not to say that the original diagnosis was in error, it was just that the heart was so small that they could tell that he had heart disease but the specificity of the heart disease was hard to diagnosis. The above conditions do have LONG and COMPLEX names: Dextrocardia, Double Inlet Left Ventricle, and Hypo-plastic Aorta.

Many of you are constantly asking what we need, which is continued prayers, support, and encouragement as we seek to obtain the best medical attention for our little boy. We were so impressed with the care and expertise yesterday and would ask for you to join us in praying through the logistics of delivering in Houston as well having it be Easton’s main cardiology hospital (for surgeries). We do NOT have to move there and Fort Worth can continue to be our home, but Easton will just need a cardiologist here to see on a routine basis, pending he responds well to surgery. I will have to relocate to Houston at 36 weeks and stay there until he is born, and then we will be there until after his first surgery. All of this is very new, so we would love for you to join us in praying over the logistics of what and how life will look like for us, as Stephen continues to work and I anxiously wait the arrival of sweet Easton.

Easton will need surgery within the first 6 days of his life. It will be a major, complex, delicate, and risky surgery because it is an in-cardiac procedure. We don’t want to make speculations or even look at percentage rates for surgery rates of success/failure, but we desperately cling to the truth that God is good and He knows and holds our future, and Easton’s. On the way out of the door, the cardiologist said, “I can see how excited you both are to have this baby,” and that’s the honest truth. We are excited to be parents, to experience parenthood, and to take peace in the fact that God handpicked us to be Easton’s parents.  It’s difficult on days like yesterday and even today to know that our sweet little boy is going to have complications that are seem unfair for any infant/adult to have to endure.

We will go back to Houston in 3 weeks to do another follow up echocardiogram to make sure that his heart is continuing to grow and “have flow” so that will be another big appointment day. For those of you who consider yourselves our prayer warriors, you can specifically be praying for that over the next three weeks—that his heart and body would continue to grow and his heart would maintain the current state that it is in or be improved.

So, obviously a lot went down yesterday; we received more “news” and then good news about his other organs. Thank you to all of you who have invested a piece of your life into Easton’s journey. Stephen and I are honestly able to have strength that is beyond us through the Lord but is tangible through the love, support, encouragement, and prayers of so many.