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.