Curve Balls

All I can really say is that lately, life has thrown us a few curve balls, maybe even a few too many. Ever hear the saying, "God doesn't give you more than you can handle?", well I don't believe that's true. Actually, I refuse to believe that, because currently, we are walking in uncharted territory and have been on an arduous road for quite some time. I think God gives us more than we can handle so that way we can lean into Him when we are weary and downtrodden. Right now, this is our reality. 

Over the past two years, we've made our lives an open book. We've shared with you our ups and downs, and so many of you have diligently showered us with love and prayers as well as offered us a constant source of encouragement. For that, I will never have enough words to express our gratefulness. A thank you will never be enough. What I can tell you is on the days that we are at our lowest of lows, God can still the waters and grant us a deeper peace that comes not of ourselves. Yesterday, after just two short weeks, Stephen left his new job. The one in Houston. The one that we felt called to take. The one that was opening so many doors for us in Houston. Yup, that one. [insert gasp and utter shock] It quickly became obvious that this was not the right fit or situation for him, or our family. So, after a few discussions, he and his company decided to part ways. Yes, pretty scary stuff and major uncharted territory for us. As I'm sure you can imagine, with a terminally ill child, we have to have Heath insurance and ultimately we have to have a source of income. We will stay on COBRA through his previous employer for insurance until he can find something that better suits him and our needs as a family. 

So, where does that leave us, especially with the holidays literally around the corner. Well, we are just putting our trust in God and leaning into Him, knowing that he is going to meet our needs. While it is probably the scariest (elective) thing that we are choosing to walk, we know that God will supply us peace by piece. I'm reminded of the story in the Bible in Matthew where Jesus feeds the 5,000 with just two fish and five loaves of bread. As the disciples brought him the items they didn't know how it could possibly feed the crowd. Then Jesus blessed it and food began to be spread about amongst the people, with left overs to spare. Piece by piece, God provided. Piece by piece, the people were fed. Therefore, we believe that piece by piece, God will continue to guide us down this path, giving us peace. 

Even when it's hard to believe that this is our new reality, I'm clinging fast to the truth that He is still there, even in the thick of it, even curve ball after curve ball. A friend of mine recently commented that we've had been through some really hard seasons. Jokingly, I replied, it's refinement. To which, is no joke. It's the truth. Refinement is painful but ultimately, when we weather this storm, I want to look back and remember how God met our needs, day by day, piece by piece. 

Please please please be in prayer for our family, as I know so many of you already are. Please pray for the right opportunity to arise for Stephen. We still feel called to Houston, especially after Easton's massive health scare just last week. We know it's where we need to be, just need to pray through the details. We will continue to keep you all posted as we learn more in the process.

You're Our Hallelujah

I've attempted to write this blog three different times and have not been able to finish a single one. While I am overwhelmed by God's grace and mercy, my heart aches at the pain and suffering we endured exactly one year ago today. That's right, today we are celebrating Easton's Heart-iversary. One year ago, Stephen and I held on to each other, in tears, as we watched Easton's surgical team carry him off, at a mere five months old. At five months of age, our sweet baby boy had his heart operated on and his heart put on a bypass machine during a ten hour operation, as the surgeons tirelessly worked to make improvements for his overall quality of life. I remember sitting across from Dr. Fraser (after the surgery) feeling confused and overwhelmed by his words of it being such a difficult and grueling operation and just have to wait and see how Easton's body responded to the changes. Oh how my momma heart ached then and even more so as we made the daunting walk to the CVICU. They left his chest "open" (covered by a special bandage but still able to see more than any one would ever care to see) due to the swelling and inflammation of his little heart. I wasn't prepared to see him looking so lifeless in the shell of the same body that was laughing and rolling around just earlier on in the day. I couldn't bare the sight and had to walk away. Even now, the pain is still real, it's tangible, it never gets easier. Easton was a very sick little boy but  God decided that he wasn't done writing Easton's story, and He still isn't. (Praise God!)

Easton is our hallelujah (along with Bennett but this post is devoted to EB). He is our daily dose of God's goodness and sweet reminder to live life abundantly. The laughs, the tears, the smiles, and the tantrums (yes, all of them), are a treasure. On our toughest of days, I can hear that sweet "mama" being uttered out of his mouth and it be a moment to bring me to my knees, out of sheer thankfulness for our boy's life. A life we weren't sure he'd get to live but how grateful we are that God isn't done with his story yet. I'm humbled beyond belief that Easton is ours. The pain and agony of his diagnosis and future is nothing I would ever want for anyone to experience, BUT God has used Easton to teach us and others about so many things. Our Easton Bauer has brought more people to prayer (even us); he has touched the lives of so many people at a mere 17 months of age. I've been so blessed by so many--near/far, friends/strangers, by your genuinely expressed love, care, support, and concern for our little boy. For that, thank you.

To the little cotton headed, blue eyed, string bean little boy that first made me a momma, you have not left us wanting for much (other than complete healing of your little heart)! We praise and pray for Easton and for his heart, for healing, for the opportunities that await him, for the testimony his life is and continues to be. May today we laugh a little more freely, love a little bigger, and be genuinely thankful for the breath that fills our lungs. Happy one year heartiversary, our Easton Bauer❤️❤️

Going Live

I was talking with Stephen the other day, telling him how I am always thinking of titles for different blogs (just based on my day or how I am feeling) but unfortunately with two small kids, sleep always wins. Always.

Tomorrow our home is going on the market. It's what they call "going live" in real estate lingo. While this may or may not come to a shock for some of you, it seems like now the time is just right. Where sweet pictures of my boys, my husband and I, and our family once hung, are just now bare empty walls. It's a clean palate, a blank slate so to speak, ready for another family to make this house their home. While I am excited about this move and the opportunities it has and will create, there's still a heaviness in my heart. So many rich and sweet memories have been made within these walls. Also, not forgotten are moments of heartache, shattered expectations, and times for Stephen and I to come together, as we strengthened our marriage in the thick and thin of whatever happened in particular seasons of life. At the end of the day, our home, my home, is with my boys. And for now, we feel the gentle tug on our hearts that what's best for our family is to transition to Houston. Yes, I know, you read that correctly, I said Houston. I know that I've stated in prior blogs how houston, is well...Houston. But it's become so much more for us, particularly for Easton.

As all of you have come to know over the course of this blog, our Easton Bauer is a pretty special little boy, a miracle in our eyes. His laughter and smiles are infectious, his tenacity is hard to top (and yes maybe it's just a fancy word for stubbornness😂), and his sweet disposition amidst his trials and pain make this decision for us to move very simple. Eastons health has been and will continue to be a front runner in the decisions we make, and we felt like it was the right time to make the move to be closer to his hospital. His team. His army who goes to battle for him as they continue to push themselves to be creative in their attempts to save our little boy's life and give him the opportunity to grow and develop. That's what we want. We want to provide Easton with the opportunity to thrive and live a long and fruitful life. So, Houston doesn't sound that unappealing when you fashion it in that light! What used to be a sour thought in my head(Houston), it is now become a beacon of hope for our family. Our time there has been FULL of utterly challenging, gut wrenching moments as you watch your child cling on to life, long days and restless nights. BUT it is also full of sweet memories of bringing our boys into this world, meeting new friends that have become like family, and rich community in times of uncertainty. I couldn't see it then, but God was orchestrating this move long before it was even going to happen. He put certain people in our paths that helped open doors and make Houston feel like our second home. And now, it feels right to call our home. There is a certain level of peace and comfort that come from being there. The reality of the situation is that our first born is sick, his heart is not well, but praise be God that we have some of the world's best surgeons and doctors intervening on his behalf. While we don't know what his future holds, we do know that God continues to hold his future, as He does with all of us. He is providing for us.

So, for now, for a little while longer, we continue to laugh and play, and cry (mainly "toddler" meltdowns and then mommy meltdowns) all a little while longer within the walls of this house. A house that has seen our good and bad days, that has been a light and a source of hope in our community, Saturday football watching parties, and a place where friendships have grown so deep and full of purpose. While we are sad to be leaving our beloved Fort Worth home, we couldn't be more excited to finally be able to offer our boys (especially Easton) the ability to live a little more freely and not as constricted since we will be closer to Texas Children's. I am eager. I'm a little anxious. I'm terrified but hopeful. Hopeful that in the same ways God has continued to lead, guide, and direct our steps, that He will continue to do so as we make this new venture to Houston.

Update on the Sparks

It has been a while since my last post but know that there are some days that I know that we only make it through the day by grace and the prayers for our family. Life with two, just 14 months apart has been a challenge but our hearts are full with lots of giggles, snuggles, and everything little boy.

We recently made our routine trip to Houston for a slew of appointments for both boys and everyone got a good check up. Bennett still has an excess piece of tissue in his atrium but the cardiologist sees no reason to be concerned about it. She wants to do a follow up echo in about a year to see if it grows as he grows or it would be our hope that it would completely go away on its own as it grows.

Easton had a routine echo, x-ray, and cardiologist visit that left us with good news but also burdened hearts and minds as we sift through how to move forward with his care. As per my last update, we had reached out to the surgeon at Standford for a second opinion regarding his collaterals (MAPCAS). We have since heard back and they have given us their surgical recommendation but it would be an elective procedure with an unknown amount of recovery time, across the country. Easton’s cardiologist believes we should go for the surgery but also used the term “great risk/great reward,” which is just not something you tread lightly as a parent. There are several details and further questions that need to be asked before we would feel comfortable moving forward with the potential surgery. The issues at hand are that the Stanford surgeon did not actually say he would take on Easton’s case (just made a surgical recommendation), we don’t know if the Stanford surgeon has ever preformed the surgery on a child who has some of the same parts as Easton’s diagnosis, particularly those with a single ventricle (pumping chamber)—and if he has, have those children gone on to have the surgeries to address having just half of their heart. (Easton is NOT currently a candidate for those surgeries that he needs because his heart anatomy/lungs just aren’t where they need to be for a successful transition). Also, his cardiologist believes that if we have this surgery done in California then ALL of his subsequent surgeries Easton would need to have would all need to be done in CA, which throws a major kink in the plans. The last issue that weighs the most heaviest is that if Easton has this elective surgery and it is successful, Easton might one day be a candidate for a heart transplant. As of now, Easton is not a candidate or can’t even be a candidate for a transplant because his heart anatomy is also affecting his lung growth and development. We need his lung development (controlled by the pulmonary artery) to continue to grow as he grows. Of course, no parent throws around the term heart transplant lightly and that is a road that I am not even sure how and when we would weather, but for for we enjoy our sweet little man, all of the successes he has, and take it day by day.

So, we’ve had much to process and have been trying to think about all of these things, as well as continue to parent two young children, along with balance a marriage/job on top of all of it. Like I said earlier, not a day goes by that I don’t stop and think that there are so many people who we know and others we don’t that are praying for our family, particularly Easton.

A Long Road

Well, today is the day. Today we get to meet our newest little, Bennett McClain. When we started this journey, about ten months ago, there was no way of knowing what or how life would look, and personally, I'm glad. I know that without a shadow of a doubt that if God were to simply tell us or show us our futures, I'd get out of my line REAL fast. I'm thankful for the trust and thankfulness that ensues from the process of sanctification, from learning to lean into Him when it feels like we're walking in a sea of abyss. 

My mind is at rest this morning, my heart could potentially explode as I think about meeting, yet another little boy to love on. The bond between a mom and son is like no other, as I'm sure is the same way with a daughter, but as I was driving to the hospital last week, I couldn't help but be overcome with pride. It's my job as a mom to instill in my boys the meaning of loving well, forgiving well, and helping them be role models and leaders for their own spouses on day. I know that's a long way away, but it's humbling to be apart of a bigger picture. 

As a woman who struggled with infertility for years, my heart ached for the opportunity to be a mom, and those were some hard fought days. Days of helplessness, days that seemed unfair, but days that I look back now and can appreciate God's constant pursuit of my heart, cultivating it for something bigger than I could have pictured myself. Just thinking of those days brings back so many emotions but God was working on my heart, preparing me for all of this--days filled with doctor's appointments, therapies, shots, hospital, surgeries and endless procedures. I wouldn't have been ready. Point blank. There are some days I still don't feel equipped for the battle of fighting for Easton, his life and his care. Often times, we'd like to know why or just want to know when God is going to fulfill his promises, but where's the trust in that. Even if His promises don't match my plan, He is still good. If I knew that this was God's plan for my life, I would have "changed lines" and completely robbed myself of the joy that He set out to give me. Sure, we are deep in the throes of difficultly, heart ache, and not knowing what lies ahead for our sweet Easton Bauer, but God is still good and has continued to provide us with joy amidst suffering. 

Ten months ago, we handed Easton off for his first open heart surgery, only to find out ten days later about our new pregnancy. Ten months later, we passed Easton off for his second surgery, only to be weeks away from meeting our sweet Bennett. One of my biggest fears as a parent was thinking that God was giving us Bennett to help take away the pain of losing Easton, if that ever were to happen, but God doesn't work like that. He doesn't give to take away, He gives to enrich and enhance and all the while coaches me to put one foot in front of the other; to continue to trust in Him for everything. I'm often told, "I don't know how you do it," but I take comfort in knowing that I am just a small vessel being used for something bigger. God is my artist, I am his paintbrush, and he's using all of THIS to form His creation. 

So, today is the day! Anxious but ready to meet the newest member of the Sparks clan. Happy that God has chosen to grow our family, probably not how we had "originally" envisioned it all happening, but thankful that he is guiding the paintbrush as he continues to create and work on our masterpiece. 

Desensitized

As we've spent the past 72 hours in the hospital, particularly the CVICU, I'm always reminded of God's faithfulness and peace, and being able to find joy amidst pain and suffering. No, it's not easy, but even in the hardest of times, God still blesses us with sweet little nuggets of light and truth. 

Before we left for Houston, I had the opportunity to catch up with a dear, sweet friend. As a mother, in general, it's tough to find time for adult conversations, but as a  mother to a medically needy child, life just looks different. Friendships are different, community is hard,  church--we are unable to attend, and expectations are constantly being broken and shattered. As I sat and talked to my friend, she made a comment and it was almost a revolutionary thought in my mind. She said that on the outside, Stephen and I make our chaotic life look normal. That to those we don't interact with on a regular basis or those who are outsiders, that it's easier to become desensitized to our situation. It's easily forgotten, when we are home and going through the daily rhythms of life with our sweet family, that some seem to forget the burden and reality that Stephen and I carry around on a daily basis. Our baby is sick. He's considered terminally ill. His heart will never be "fixed," on this side of Earth, and as we celebrate all of our highs, we are faced to push back the fears of the future. How many of "xyz's" do we get to have with Easton? 

Even now, as I'm sitting bedside in the CVICU, consoling my child, it's hard to think that it's easy for people to lose sight that this journey to help give Easton a shot at life, is not just fought in the hospital, it's a daily battle. One that is tiring and exhausting, but it is one filled with joy. God has given us a special little gift (well multiple ones), and He has allowed us to look a life in a new perspective. We know and understand the fragility of life and we embrace each and every day with Easton and each other as a gift. I rarely am consumed by or thoughts about "down the road" because I'm normally focused on getting through and enjoying the day. 

After Easton's surgery on Thursday, we got to briefly sit and talk with the surgeon and what he said blew us both away. He said that Easton had made it further than a lot of people thought he would make it!! I mean how cool is it to hear a very talented and distinguished doctor say (not in these words or remotely close but it can be translated) that Easton's life is a testimony of God's goodness and faithfulness. What a sweet nugget of joy to cling to and give praise for--that God has sustained Easton's life using the gifts and talents of doctors, surgeons, and modern medicine. Thinking back to that moment, I think about how Stephen and I painfully waited during his eight hour open heart surgery, including some time on a bypass, and what we got hear afterwards was such a confirmation of how God still provides joy, even in the hardest of seasons. 

As we bear and go through the hardships of life, marriage and raising our family, Stephen and I are very aware of our blessings and thankful that God has given us joy in the midst of pain. We know that this is just a season, and not all seasons last forever, so today, we find hope in that God has given us a nugget of joy to cling to as we help our sweet little man live his life to his absolute fullest. 

July Update

It’s been a little nuts around our home lately. After our last update, we have spent much time on the phone with Easton’s surgical team trying to figure out a surgery date, as well as try to secure lodging for our time in Houston, and try to get our house in order. 

As of now, what we do know is that Easton’s surgeon does not want to wait a long time before preforming his next operation. We were hoping to find out his surgery date last week, but due to scheduling woes, we will more than likely find out tomorrow. We’ve been told to expect as early as the end of next week to maybe two weeks out, just depending on what they can do on their end. It’s all very overwhelming to think about, on top of being 35 weeks pregnant with baby brother. 

With Easton’s heart anatomy being so unique, there is a tentative game plan for surgery, but unfortunately, we won’t know for sure until the operation has started. The surgeon will replace/resize the BT shunt that helps create blood flow and growth to Easton’s pulmonary arteries and it might finally be time to address some of the MAPCAS (collateral arteries that shouldn’t be there but are supplying about 50% of his blood flow to his lungs). Essentially, the collaterals are helping right now but they are not stable; with them supplying so much blood flow to his lungs, the cardiologist and surgeon want to make sure that they can salvage them but won’t know until the operation if now is the right time. Depending on what exactly is done, we’ve been told to expect a few weeks to a few months of recovery. 

Obviously, as you all can imagine, there is a heavy burden that Stephen and I both carry knowing that our sweet little man needs these necessary operations but it is scary to walk this path. We are constantly asked how can those around us help or to let those around know when we need help, so we are going to be connecting the link to Easton’s GoFundMePage to this post. Life in the hospital is not only physically and emotionally draining, it is financially draining as well. While God has blessed us immensely with great insurance, there is only so much insurance will cover. It is about $3000 a month for lodging (close to the med center), $350 a month for parking, and then whatever is spent on eating and food while we are there. All of the money that was previously given in the fund has all gone towards our medical expenses over the past 15 months that we have traveled back and forth to Houston. 

To those of you who are our diligent prayer warriors, not a day goes by that we don’t feel covered in prayer. To those of who have witnessed and experienced life with us and Easton, in both Fort Worth and Houston, thank you for the love and hospitality that you have shown our family. To those of you who feel compelled to give financially we couldn’t be more thankful for your contribution to help our growing family in a very hectic, daunting yet exciting season of life. 

We are utterly thankful and grateful for all of the prayers, support, and encouragement that have been bestowed upon our family. Thank you. 

https://www.gofundme.com/littleredninja2

365 Days of Easton Bauer

As I lay on the operating room table, looking up at all the brightly shining fluorescent lights, the fears and anxieties ran deep as our lives were about to significantly change, forever. Even writing this, I can remember being in the OR like it was yesterday. I can remember being scared out of my mind for what was to come, of course happy to finally be a mom, but in general, terrified of how our lives would dramatically change. There’s nothing in the world that can prepare you for parenthood, but parenting a medically needy child, living day in and day out with the fears and anxieties of what could happen is enough to paralyze even the strongest and healthiest of minds. 

Once all of the OR team was prepped, the CVICU team prepped, and Stephen was finally brought in, the next thirty minutes was quite possibly the longest of my life. We had been told that Easton would probably come out “blue” and wouldn’t be able to breath on his own, and the first thing I heard the doctor say was that he had a full head of hair and then it happened. He cried. On his own. Breath filled his lungs and right then and there God supplied life to our little boy. At 12:33pm on June 15th, our Easton Bauer was born. 

As I reflect back on the first six weeks of his life and our lives, we spent all of our days at the hospital, and finally we got the news that we could take him home. That he was stable enough to go home with his parents who had no idea how to take care of and manage a “normal” baby but add in dozens of medications, feeding pump, NG tube, CPR training, etc and it was a lot to process. Because Easton’s heart is so complex and unique, they couldn’t give us and still can’t give us a game plan. We went month by month, going back to Houston for doctor appointments until we heard what no parent ever wants to hear, “open heart surgery.” We knew all along that it was inevitable but actually hearing it and processing it will knock you to your knees. It’s like a punch below the belt, that takes the air out of your lungs. 

When Easton had to have surgery, he was just five months old. We were still enjoying the sweet baby cuddles and smiles and had no idea what to expect after surgery. There are so many complications that can arise from being on a bypass machine for hours as well as from rerouting blood flow in the heart. I remember the pre surgical consult, when the surgeon was quite frank that he couldn’t promise us anything. Not even life. The morning of his surgery, Stephen and I didn’t speak much to each other, we just tried to soak in as much time with Easton as possible. The prep time was terrible. You’re waiting and playing and laughing and all of the sudden, you sign papers and it’s time. As you hand your baby off to team of strangers, albeit, highly qualified strangers, there are no words I could ever type on this keyboard that can convey the pain, hurt, and utter anxiety that fills your body as you watch your baby being toted off. A piece of you is gone. A piece that you don’t know if you will ever get back or the condition of what life will look like post surgery. We waited a painful 10 hours from the time they took Easton until we saw him again. When we saw him, it wasn’t really the Easton we knew. It was a pale shell of the sweet boy we know and love. He was sick, very sick, but we were thankful he made it through surgery. As a parent, sister, friend, daughter, acquaintance, I can’t even BEGIN to even thank all of you for your diligence in praying us through that day. November 20th 2015 is a day I will never forget, for so many reasons, but it is a day that we weren’t promised anything and God continued to supply us all with what we needed, even life for our sweet baby boy. After just 11 days after his bypass surgery, we were discharged from the hospital. A miracle. 

After we came home from the hospital, we enjoyed our first Christmas together and found out that we were expecting another miracle, baby Sparks 2. This go around, we didn’t spend hours upon hours at the doctor’s office or go through shot after shot, it just happened. Floored and shocked to say the least but humbled that God saw fit to grow our family. A prayer that we had prayed for years and didn’t know if it would ever come to fruition, but God continued to be faithful in ways we would have never pictured. 

Fast forward six months, and we continued trips to Houston, doctors appointments, heart echoes, appointments for Bennett, home health therapies and endless smiles and laughs from our Easton Bauer and we are here. A whole 365 days. Some days filled with fears and uncertainties. The anxiety creeps in and we find ourselves wondering how many years will we get to spend with Easton on this Earth. But then God shows up, replaces our doubts and fears with hope and joy and reminds of HIs faithfulness. Sure, we know what it’s like to have broken expectations of what life, love, friendship, community, parenting, and marriage all look like when you have a chronically ill child, but we are utterly thankful for our closest friends, family, and prayer warriors that have prayed us through 365 days of life with our Little Red Ninja. 

Happy Birthday to the sweet little blonde hair, blue eyed boy who made me a momma, Stephen a daddy, and who constantly shows us to enjoy each and every day because it is a precious gift. If there’s anything I’ve learned over the course of this first year is that just because Easton has heart disease makes him no more susceptible to enjoy life or even have a long life. I am blessed to be a mom. More blessed (in a different way) to be a mom who understands the fragility and sweetness of life. Easton Bauer is a loved little boy and we continue to pray big things for his life. May he continue to love and share his sweet spirt and personality for as many days as the Lord allows.  

Almost A Year

As I sit here with my sleeping boy on top of me, I can't help to be overcome with emotion, happy ones. Y'all tomorrow is February 1st, which means we're approaching one year of finding out about Easton's heart. I can remember the day we went to the hospital to for the big "gender scan" only to wait for the doctor to tell you she's sending you to a heart specialist. I remember that day so vividly. I remember February 6th even better. 

What we thought was just a follow up on his heart blood flow, ended up being a three and half hour echo and start of a conversation with the doctor. I can remember lying on the table, while being screened, thinking it was too long of a scan for something not to be wrong, but the ultrasound tech reassured me else wise. I can remember waiting for the doctor to come into the room and when she handed me the tissue box and said it wasn't good, the room started becoming suddenly small. The walls were starting to close in around me, as I listened to her and watched Stephen try and formulate and ask questions about Easton's very rare and complex condition. But I couldn't do it. And with that, I told Stephen I needed some fresh air and that we could call the doctor later. I wasn't in denial, it was more so the shock and heartache of finding out something is wrong with your babies heart. A heart. The organ that beats and keeps one alive. What I was hearing that my baby's heart was broken, very broken, and he was quite possibly missing or had other contorted organs. Now you see why I needed fresh air. 

We left, waited downstairs in silence as they brought us our car, and I told Stephen I didn't even want to talk about it on the way home. I know what you're thinking, "Courtney, that's denial," but it really wasn't. Remember how hard and long and tedious our journey was to even become pregnant?To know how badly we wanted to have a baby and to then find out that he was sick, very sick, with a tough outcome for any potential life. Even worse, being offered an abortion. As I sit here today with Easton sleeping on top of me, my heart aches and breaks at the thought of if he were in someone else's belly, would they have given him a chance. I am so incredibly proud of my husband for shepherding my heart during those critical moments, for our friends and family who cried and prayed alongside of us. 

I write today, with a happy and sweet boy who no longer kicks me on get inside but on the outside, reminds me everyday of his fighting spirit and how full of life he is, even with an imperfect heart. When he sleeps, I marvel at the sheer magnitude that his little heart works and he is growing and exploring. I marvel at what the lord has accomplished through Easton's life and I can't help but hope that will be the case for many more years to come. 

As a mom to heart baby, he is my warrior. There are schools of thought these days that say that we can't label our kids, but I do. I've seen him at his lowest of lows, on dialysis, paralysis, on a ventilator, with his chest cracked open. My child is a warrior because he is such a fighter and reminds me every day that God has filled his lungs with air and allows his heart to beat all for a greater purpose. Even if it's just for me to continue to trust God, day in and day out, I still thank him for our sweet miracle boy. For our trials have allowed us to lean on Him, and to know Him a little better. I eagerly look forward to all the Lord is going to continue to do through the life of my Easton Bauer. 

So I'm not sure how many of you are aware, but there is ONE week in February that is dedicated to raising support for Congenital Heart Disease. It's such a cause that is near and dear to our hearts (obviously), but I do want to take time to raise awareness for CHD. Actual CHD Awareness week is Feb. 7th-14th, but every Friday, consider wearing something red in honor of our Easton, or other children who suffer from the disease. CHD is the number ONE leading disease that results in more children's deaths than ALL childhood cancers. It's affects 1/100 children born and is also FIVE times less funded than other pediatric diseases.

Please consider donating in the month of February in a variety of ways:

-You can give financially (I'll post a few links at the bottom of this webpage). If you're not comfortable donating to a large corporation, there are other routes you can take! 

-Please go DONATE blood! Easton has had four blood transfusions and without blood, he wouldn't make it. I know everyone hates giving blood but there is such a shortage and it means so much to us who have received blood! 

-Wear red on Friday in Easton's honor and to help raise awareness! (And send me your pictures!!) 

-Pray! Pray for those who are currently in the hospital with children fighting for their lives, pray for funding, pray for doctors and surgeons 

Writing has been such a healthy outlet for me since we found out about Easton's heart, and I'd like to sincerely thank all of you who read my blogs, send me messages, and who have walked this path with us. I've said it before and will continue to reiterate that we can't do this alone. I am truly blown away by all that has been done for my family and I only want to be able to share what God is doing in our lives with others. 

Much love and thanks,

Courtney 

Links to CHD websites: 

http://www.childrensheartfoundation.org

http://conqueringchd.org

https://waystogive.texaschildrens.org

(TCH is working on expanding the heart center and should be complete by 2018)

Two Months (and in More Than One Way)

Two months ago, today, Stephen and I did what no parent should ever have to do or want to do. We passed our baby boy off for what we believed to be a twelve hour bypass open heart surgery. I’ve said it before, and I will reiterate but there are no words that can adequately convey the feeling of passing your child off to a team of strangers (albeit, highly qualified) for a risky and questionable surgery. Tears, upon tears, upon tears. We had been playing and laughing around with Easton just minutes before the surgical prep team came to tote him off, and then like that, he was gone. There is an undeniable fear of the unknown in that moment. To have the comfort of our happy and healthy Easton laughing and playing just minutes before but then not know what to expect post surgery…the toughest being would he make it? As a parent, there are many schools of thought, but one that no parent ever wants to have to deal with is the thought of burying your child. Even writing it, it pains me to know that we have had such close friends go through that experience, and that it would even have to be a potential thought in my mind. That’s why I wrote a blog a few months back and talked about there being more to this life, a better life that doesn’t involve pain, suffering, heartache, trails, etc. Believe me, I still wrestle with the ideas and thoughts of heaven but it’s because it’s so much better that my tiny little pea sized brain just can’t wrap my mind around the concept. 

Well, I think most of you know the outcome of the first surgery, Easton not only survived but thrived in recovery. We walked up to Easton’s bed, chest open (bandaged very tightly), with a sick little boy on paralysis and dialysis. For two days we sat by his bedside with him that very condition. But once they sewed his chest up, Easton started making great strides. We would be discharged just 11 days after this massive surgery. I’d like to tell you that we’re done walking this path, but in honesty, this path is long and arduous. Easton will have to have at least one more planned bypass along with two other surgeries but we never know what to expect. I think that’s the hardest thing that I struggle with, is the thoughts and emotions of what will life look like in xyz….I fear the future for my child when other people aren’t even thinking about “the worst” for their children. I don’t dwell on it but when we put up the Christmas tree this year, my first thought was what will Christmas look like in our house next year….? But that’s when Stephen always brings me back down to planet Earth and reminds me that God’s plan is sovereign and good and perfect, even we we don’t think it is or can be. 

So you want to know what I hope Christmas of next year looks like? In my heart of hearts its the vision of Easton running around and playing with his new sibling that will be joining our family in August!! YES! You’re reading correctly, we are EXPECTING, another pale skinned, blue eyed little baby. It was with great surprise and happiness that God saw fit to add another child to our family. I’ve shared with you all the hard fought road to becoming parents with Easton. After two years of “trying”, 4 IUIs, and 1 round of IVF, we were finally pregnant. It is with very happy hearts that we look forward to baby #2’s arrival! We are not out of the first trimester (10 weeks) but I’m here to proclaim that there is no perfect time to announce anything, particularly a baby. I know from first hand experience that just because you hit your second trimester doesn’t mean you’re in the “safe zone.” YES, I do worry and think about baby 2’s health, particularly his/her heart. But in the same way that God has paved our way with Easton, I know that God will pave the path with a second baby. I am experiencing a wave of emotions from excitement to anxiety to hope to you name but, what I do know is that God has written his grace and peace and sufficiency all our lives and it’s hard to miss it, anyway I look. 

Today we celebrate Easton’s two month “heart-iversary” and two and half months for this new life. 

Why Not...?

My husband isn’t a fan of the end of the year little messages and blurbs about the highs and lows of the closing year and what they look forward to or are going to change about the new year. However, 2015 has been such a monumental year in our lives, it’s hard to not sit back and reflect on our journey. 

Nothing in this life prepares you for parenthood. In January of last year, we were so excited about what 2015 had in store for our lives and the life of our son. Little did we know that our life was about to be flipped upside down. If nothing in this life can prepare you for parenthood, believe me when I say that nothing in this life can prepare you when you hear the words that something is wrong with your baby. At the time when we found out about Easton’s heart it was the size of a walnut. I am utterly thankful for technology and for the technician that caught a glimpse of what they thought at the time to be distorted blood flow. When we were sent for a more in-depth look, we honestly had no idea of the gravity of the situation. The hospital where we had originally went was in disbelief that nobody had informed us of the severity of Easton’s anatomy. Well, you are all familiar about following appointments and busy busy months that followed that were filled with more sonograms, echoes, and blood work.

Two thousand and fifteen was quickly becoming a hard lump in the throat to swallow. Not knowing whether the baby who inhabited my belly would survive was by far the hardest and most difficult part of my pregnancy journey. All of the horrendously long appointments and calls back and forth with the doctors office, not to mention still teaching while this was going on, was a lot to deal with. We knew all along that God wasn’t surprised when we were. He wasn’t surprised when a doctor recommended we abort Easton. And He wasn’t surprised when Houston (I mean, Houston, of all places…), became a beacon of hope for our lives. I tell everyone that the day we went to Texas Children’s, I felt like a cancer patient who had walked into MD Anderson. Nobody said your baby is going to die. TCH said, this is a hard situation but here is the plan and this is what we are going to do for you (and him). 

Even after we had decided to make the switch of primary care to be in Houston, the next couple of months were spent driving back and forth for appointments, baby showers, and trying to to make Easton’s room a home. I think the hardest part in all of it was going through those experiences just not knowing an outcome. You prepare this baby nursery and open up baby gifts with a happy heart but also with a heavy heart. A heaviness that comes from the potential hurt and loss. A heaviness that never goes away, I don’t think it ever will. 

In June we welcomed our sweet baby boy, a miracle! He spent the first five weeks of his life in the hospital, three of those weeks in the CVICU, as they tried to figure out a game plan for his care. I can remember at the end of July making the drive home, with our boy—it’s hard to convey just the happiness in such a moment. Almost like an exhale. From February to July it was just a slow constant inhale and bringing him home was like the first time I got to fully exhale. Once we were home it was the craziness of trying to set up his care team to help him excel. OT, Home Health Nurse, weekly pediatrician visits, and on top of that trying to figure out what I was going to do about work. A job that I loved, with kids that constantly surrounded me with love and laughter(of course stress too:)), parents that turned friends, adn teachers that had loved me so well before and all throughout my pregnancy. I knew they would support me with whatever decision, which made making the decision to stay at home and care for Easton all the more easy. Even the decision to stay at home was such a huge change because teaching had been my life for five years. However, I feel unbelievably blessed that I can stay home and have such an important job to take care of my sweet boy, my little heart warrior. 

Once we got home and I resigned, life did eventually settle down, and we tried to find a new normal, our strut. Every time we got into a routine, it was time to go back to Houston, and we never knew how long or what our trips would entail: always an echo, possible EKG, potential heart CATH, and a visit with our beloved cardiologist. God has continually blessed us with homes to stay in so that way our cost are limited to just meals and parking. We’ve had families take us in and we’ve become a part of their lives. Each trip we made to Houston, I would always hold my breath because I knew the possibility for surgery was growing greater and greater. What had originally be planned to be a surgery around his first birthday, after each heart CATH, his doctor was growing slightly more concerned about his disproportional pulmonary arteries and his MAPCAs. I remember when his cardiologist came into the consult room after his last CATH, and after seeing the look on his face, I knew surgery was inevitable. That heart CATH visit quickly turned into more, a surgical consult that left me with the wind knocked out of me. Easton’s heart surgeon is by far one of the top pediatric cardiology surgeons in the world, and to hear him say that he wasn’t sure about the certainty and outcome of the surgery was hard. We left that consult knowing that surgery would be after Thanksgiving and that was about it. 

Fast-forward a week and a half, I was home when I got the call that surgery was moved to November 20th. Praise God for the amazing friends that we have in our lives. A friend was actually over at the house when I got the phone call because she brought us lunch. And for other others who would rally around us: hosting prayer nights where they devoted their time to praying over the specifics of surgery, for Stephen and myself, for Easton’s doctors, and for our little man. It is beyond humbling to be in a community and surrounded by so many who have a heart for our family, for Easton, and his story. Even people who we don’t interact with on a daily or weekly basis, gathered together, pleading for life, Easton’s life. There are NO words that I will ever be able to say or write that can adequately express our thankfulness, gratitude, and appreciation. But Stephen and I are beyond humbled for each and every prayer, call, message, words of encouragement, meals, and dollar that has been given to support us during this season of life. 

On the morning of Easton’s surgery, Stephen and I woke Easton up with extra love and snuggles, unaware of his future. The worst part was the handoff. The most gut wrenching part in it all is to be laughing and playing and waiting for the surgery team to get everything together, and then it happens. You sign the waivers, the anesthesiologist walks you through the surgical plan, and then that’s it. You get a few last hugs and kisses in and then they carry him off. With tears running down both of our faces as we watched them carry Easton off, in that moment, you are stripped to your very core. You try not to focus on what was and on the all of the unknown possibilities of what will be. Hard. Crippling. Real moments that make you dig deeper than you knew was physically possible. 

We had great hope that God would pull Easton through his potential ten hour bypass surgery, and God showed up in a mighty way. In what ended up being only an eight hour surgery, and not being able to address all of Easton’s issues, Easton pulled through surgery and came out “open chest,” meaning he had a very tight bandage on his incision but you could still see through the bandage. He was very sick, on dialysis and paralysis until they could get his levels and pressures under control. On Sunday morning, they took him back to the OR to sew him up, they slowly weaned down of the paralysis and Easton soon started to move and have a little more life. On Monday, which was birthday, they extubated him (meaning they pulled out the breathing tube), took out his chest tube and drainage tube, and were slowly pulling back on his other heavy hitting narcotics. Tuesday rolled around and he came off of dialysis and the ventilator, ate 2oz by mouth, which is awesome for EB, and were talking about moving him out of the CVICU in just matter of days. Literally, we were moved out of the CVICU by Friday and discharged from the hospital that following Tuesday. Just 11 short days after we handed over our baby for a life altering surgery, he left not on a single “apparatus.” I mean when I tell you that we were and are still continually blown away, it is the honest truth. This is the big stuff people, God is real and He is good. 

Fast-forward, yet again, and we were home for Easton’s first Christmas. He is progressing well, but we do know that he will have to have more surgeries. His hand-eye coordination is great, he is working on sitting up and rolling over, and we have just started baby foods. Easton’s life is such a miracle and I am reminded, even as I type this, how even amidst all of the uncertainties 2015 has been the most challenging but yet also most surprising year (in a good way). 

This life is hard. This journey is hard. The amount of insecurities about Easton’s condition and life run a mile long, and I’d be lying if I said I don’t ever think about what if this were to all change, and not a good change. But, therein lies my challenge and goal for 2016: to continue to trust God, putting one foot in front of another. This life is too short and there TOO many unknowns to play the “what-if” game. Just because my child has an incurable disease, it does not mean the worst case scenario. It means I get the daily pleasure of surrounding my own will and insecurities to a bigger Savior who isn’t surprised or caught off guard when something doesn’t go my way. In 2016, may I continue to be bold for God, through the story of my son, may I be content to enjoy the sweet life that God has in store for me, and I may I start each day being thankful for His mercies and that they are NEW each and every morning.