Open Heart Surgery Tshirt Fundraiser

This is our sweet Easton Bauer. We are preparing for his 3rd open heart surgery. If you'd like to purchase a shirt to help us raise awareness for CHD and our sweet little man the link is below. All money raised will go to help cover medical expenses during our time at Stanford.
Tshirt Fundraiser for Easton's 3rd Open Heart Surgery

New Surgery Date

I JUST got off the phone with our Stanford surgical coordinator and we have an official date for surgery! Unfortunately it is not in May or June because of such high demand for Dr Hanley but July 11th is officially ours on the calendar. There is still a chance that we could get a last minute cancellation date but we’d much rather have a date to plan and coordinate around. 

It really is a huge relief for us knowing that we have two months to plan accordingly and it gives us time to have all of our necessary doctor appointments for baby sister. Sister will be having her anatomy scan and a fetal heart echo done all within the time frame before we have to leave for Easton’s surgery. 

Ideally we’d like to be able to fly and not drive, but we’re going to be looking into medical flights or for people who have private access to a plane. If you know of anyone who may be able to help us out, please send me a message! Any and all help is greatly appreciated. We were so financially blessed the last time we had surgery scheduled but for those of who are interested, we will launch a new fundraising campaign as we get closer to surgery. 

Thank you for continuing to walk this with us. It is daunting and the waiting has not been easy but we are so comforted knowing that we have so many friends, family, and churches near and far, that are praying for our family. 

Miscarriage

Yesterday will be a day that is forever etched in my mind and heart. Stephen and I have been sitting on top of a big secret for the past four months but it all changed within the blink of an eye. We found out yesterday that the sweet baby we were expecting passed away sometime after my twelve week appointment. 

I knew something was wrong when they couldn’t find the heartbeat with the Doppler and had two people try. Then, another professional with and ultrasound machine came in and I’ve seen enough ultrasound images to know that the baby wasn’t moving and wriggling around like it had just three weeks ago. Numbness came over me as people came in and out of the room as they tried to make a game plan. Everything was compounded by the fact that my doctor was in a delivery and not able to be at the appointment. It didn’t feel real and still doesn’t. It’s hard to believe that for 11 weeks I found my myself hovering over sinks and toilets and to make it to what is considered to be the safe zone in pregnancy, only to be reminded that there is no safety net.  Life is precious and I don’t understand why this has happened, but ultimately I’m left to trust that God has a better plan. 

Look, life is difficult and our lives haven’t been void of pain and heartache. This is yet another “thing” to add to a list of “things” that you don’t ever want to experience. We’re now in the middle of this, waiting to hear from the doctor on what’s next. Most likely I will be admitted to the hospital later this week for a procedure of some kind to be done. I’m more anxious about that than being swallowed by grief. My heart is heavy knowing that we’ve lost one of the most precious gifts and blessings that this life has to offer, but I am not overcome. Yesterday as they preformed all the ultrasounds, I watched my TWO wild and crazy little boys run around the room opening doors and making trouble. Both of which are very much so our miracles and daily reminders that God’s plan is sufficient and good. I’ve seen Him work in ways that I can’t even comprehend but I know He is present and in this miscarriage with us. Our pain is real and I’m sure that the next few weeks will be trying as we sift through and process what’s happened, but we won’t give up. We will continue to press on and know that God WILL provide. 

Weeding Through Emotions

As I stood above his crib, watching his little body sleep, I couldn't help but feel a little heartbroken, mixed with sheer love that I have for our special Easton Bauer. As most of you are aware, Easton has been through more in his short 22 months of age, that others won't even come close to experiencing in their entire lifetime. To add yet another complexity to the heaping mound, this past Monday I took him to a developmental pediatrician where she gave us her medical opinion of having an early suspicion of autism. While she didn't clinically diagnosis him, she wants us to be very cautious over the next six months, watching how he grows, interacts, and develops. To say that it's been a tough week-mentally, for me, as a mom, would be an understatement. I have this sweet cotton top, blue eyed boy, with a very complex heart and his current limitations are already an uphill battle. Now, add to that, the medical claim that he is exhibiting characteristics of another disorder, and enter a heart broken mother. Autism is not a terrible diagnosis, or doesn't have to be, but oh how I had another realm of parenting expectations shattered. I'm just sad for my boy. I hurt when he hurts, even when he doesn't know he is supposed to hurt. The beauty of being a kid is that you don't know any different. You don't know the struggle it is for your parents to carry around heavy burdens, you don't know you have a crippling disease that will have several limitations on your life, and you don't know that being an adult is harder than it looks. Once having been a kid, and then taught kids, all I wanted to do and often heard kids say was they wanted to be an adult, but "adulting" is hard. It's fun but comes with its own set of problems and realities. How many times do we, as adults, catch ourselves saying, "Oh to be young again!" But in reality, I wouldn't change it. Even though life is consistently keeping us on our toes and Easton continues to maintain his special needs, life is still good. Sure, we're in the knee deep, raw and nitty-gritty of life, but everywhere around me, I can see God's blessings and mercies (when I choose to look). Easton IS alive! His heart IS working! God bless that crazy little complex heart of his that allows him to keep going, day in and day out! His life is a miracle and even when we are faced with less than stellar news, we get the pleasure of doing life as family of four. I don't know if that will always be the case, so why do I find myself over analyzing the mess out of what a doctor might think he has, when it robs my joy of enjoying him today?

Last weekend, I spent two painful hours gardening, which really equated to pulling a bunch of dumb weeds. It was hard and as I was doing it, I found myself looking around at neighbors flowers beds that looked perfectly manicured (done my someone else I'm sure...and thinking about why we couldn't just figure out how to pay someone to do ours too😂). But, as I was pulling all my weeds, I know they have the same darn things in their flower beds. I'm finding that my own weeds are comprised of fear and anxiety but they manifest differently in everyone's lives). It was easy to look at my neighbors' yards and think that they weren't doing any hard work but comparison happens to be a thief of joy...when who am I kidding, we've all got  weeds. Do you know what happens to grow amongst the weeds and in the exact same soil as weeds...that's right, flowers. It's just that sometimes the weeds are so distracting that I forget to stop and just enjoy the flowers. Take this week for example. I've been so caught up in my own anxieties and insecurities about Easton, that it has robbed me of enjoying all of the blessings in my life. Life is hard. Weeds suck and are hard to pull up. On the surface they pull easily but sometimes they are deep rooted and it takes a lot of patience and prayer and consistency to get to the root. My prayer for the rest of the week is to pray for those things, diligently. To pray for my own heart in the matter, to find where I'm being persistent to a fault, just looking for things to go wrong or how Easton just did another "odd" behavior. He's not even two and has a lot of growing to do, but then again, so do I. Being a special needs parent is really daunting but really rewarding. My hope this week is that I would be able to trust in Jesus to sustain my heart and mind, to enjoy the "flowers," even when it feels like I'm surrounded by absorbent amount of weeds.

So, what's ahead for our sweet Easton, who's laugh is infectious and has a playful disposition. Well, we wait and watch how he develops and interacts with others over the next six months. With his heart and condition being so complex, he hasn't had the opportunity to be around many toddlers and kids, so as we're finding our rhythm and meeting other heart families, and families who want to help us acclimate to the area, we're making play dates and being intentional with others. Easton's complex little heart is helping us be more intentional with new families up at the hospital, walking the same road we started almost two years ago. We do know that Easton does have some sensory issues, along with a severe speech delay (and an eating disorder) and he is really too little to diagnosis with anything. What he lacks in words, he makes up in laughs and silliness, as he continues to remind his momma that weeds and flowers grow in the same soil.

Wide Load

This morning the boys were sitting quietly and playing (in their respected areas) and my heart couldn’t help but feel burdened and weary. It’s hard to pinpoint the exact point in time where life seemed to shift in unexpected ways, but in all honesty, each one of us has had shattered expectations when it comes to life. Sure, my life is complicated and we’ve walked through a lot that most haven’t had to, but we aren’t the only ones struggling. I’m not the only one with a “wide-load” bumper sticker stamped on my forehead. I say wide load because lately when I’m out with the boys, pushing the double stroller, for some reason, I must look like an 18 wheeler on interstate with an additional truck behind me carrying that bright yellow “wide load” sign with flashing lights. I normally just chuckle and say no, but as I keep plowing along and begin to think, I do have a wide load…I come with a lot of baggage. AND that’s ok (or that’s what I’m realizing)
I think most of us probably do. I don’t necessarily have any skeletons in my closet, but life has been, well life. It’s hard. It’s riddled with the mountains that need moving, but not void of the joys and pleasures that come with doing life-with a spouse, with family, with community.

As I continue to stroll around the store (with my wide load), encountering people, there’s a four word question that Is quickly becoming a pet peeve of mine, “How are you doing?” Do people I see in the grocery store, or at the park, or just anywhere, really want to know how I’m doing? As I think about my life as of late, what should I pick to share...the heartache of an infertility battle that we fought through( and won). A high risk pregnancy. A baby born with a complex and rare form of heart disease, who is praise God, growing into a toddler (and complete boy). About getting pregnant just six months of Easton’s life and his first open heart surgery. A second open heart surgery for my 13 month old, being 37 weeks pregnant with Bennett. Having a life in two cities for healthcare purposes. Deciding to move. Looking for jobs. Putting our house on the market and Stephen leaving his last job that took care of us so well. Getting into a really awful work situation and leaving that job. Our house selling but no where to go. Finding a new job. Living with my parents, with our kids for two months. Single parenting while Stephen is in Houston working and me back with my parents. How much COBRA cost. Our new house. Stephen’s new job (which he is enjoying). Another heart CATH…..AND THE LIST CAN GO ON AND ON AND ON. When people ask the question, it’s more so out of habit or etiquette, but the older I get, I’m tired of the response, “I’m good.” It’s not true. Well, it’s not the honest truth. I might be good in that moment, but when I take a step back and look at the grand scheme of things, we’ve been through A LOT. We’ve been through so much that an “I’m good” rids me of the ability to be able to share our story, to share how God has continued to be good to us, even when I can’t seem to steer my way out of a paper bag.

As I think about this new opportunity we have on our horizon, it’s exciting yet daunting. Tomorrow we move into our new home! We finally get to put down some roots here in Houston and we are looking forward to what is in store here. I know the focus of our move here was to provide Easton with a better life and the opportunity to do and see more because we will be closer to his health care team. For Stephen and I, we want to use this opportunity to be more intentional with others. Forming relationships at this stage of life (with young babies, especially a medically needy one), it’s hard to not just want to settle for surface level, small talk friendships, but since life is life, I want to find people to do life with here, that are willing to dive into my problems, and vice versa.

This morning, as I was trying to be productive, the mom guilt ran high as we watched our umpteenth episode of Mickey Mouse Clubhouse, but I felt the tug on my heart that I needed to sit down and write. I didn’t know what direction this blog was going to go in. Putting pen to paper (or this case just fingers to keyboard), always feels like a lifted load off my shoulders, helps ease the burdens of my heart and mind. Helps me to be honest with myself that yes, life lately has been wide load, but it’s alright to not be “good” all the time.

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❤️❤️