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.