Back and Forth

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

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

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

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

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

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

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

Team Easton Bauer Day

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

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

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

              

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

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

Another Step in a Long Journey

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

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

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

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

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

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

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

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

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

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

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

  

A Room of His Own

 There’s probably nothing more exciting to a pregnant woman than shopping for cute little outfits, completing the baby registry, and putting together the nursery. Honestly, I am one of those insanely happy pregnant women; I love everything about pregnancy. Maybe it was because it took so long to finally get pregnant, but whatever it is, I’m so thankful that I love this experience.

 The past few weeks have been an emotional roller coaster, and I’ve found it hard doing the normal “status quo” pregnancy task. It’s difficult to shop for baby clothes because I don’t know if NICU babies wear clothes, how long he will be in the hospital, and the list of unknowns continues into options that I try not to even think about. The other day, I wandered in the store and bought three sleeper jammies for Easton. You know those cute footie pajamas; these were no different—just too cute to pass up. That is a small feat, for this mamma to be, buying clothes for my own child. I see all these other cute pregnant women with their carts full of items for their baby to be, and there’s me, strolling through the store with my three outfits in tow, no cart needed. But it’s good that I am trying to allow myself back into the world of realm of “normal” pregnant women. Every day is fight and a struggle to believe that God is still faithful, but I’m finding that he continues to peruse my heart, even when I think I am beyond pursuit.    

Last night, we (I mean my heroic husband) disassembled the bed that has been in the baby’s nursery and moved it upstairs, where he then reassembled it. The entire time he worked, I sat quietly praying that we would get to bring Easton home and that he would have many nights in HIS room. Today, Stephen started to unload the crib box and I couldn’t help be a little emotional. Feelings of jealousy rose to the surface as I thought about other pregnant mammas and daddies who are joyfully putting together their baby’s nursery, without even thinking twice about if their baby would come home to after his/her birth. To be honest, I had to leave the house, to just go for a drive and not think about “the unknowns.” The scary and challenging unknowns of having a baby with heart disease, not to mention his heterotaxy that only seems to complicate EVERYTHING else. I know that thoughts of inadequacy creep in during times like today. Thoughts such as, I’m not good enough or maybe Stephen and I did something wrong and that’s why Easton’s life may be harder than he deserves. But I know that is a lie and we did nothing wrong and I am good enough to be a mom to who gets to be overprotective and whatever else I’d like to be. I go back to my last blog where I wrote that the Lord predestined Easton’s life and I have to take comfort in that. I am so very thankful for this little red ninja who is very much so alive and is always giving me reminders by his midnight dance parties or by his MANY kicks and jabs. I love how when I am on the down and out, he is turning and moving all around, reminding me not to give up on him.

 On my way home, I called a dear friend of mine who lives WAY too far away on the West Coast, and she told me how they have a whole tribe praying for Easton. She reminded me that the “Lord is in the business of miracles” and I do believe that’s true. I so badly desire for a miracle to occur and for little Easton to be born perfectly healed as a healthy little boy. That’s the honest truth, and I know that all of you reading want the same thing for us. I take comfort in that it’s not just us fighting this battle; we have an entire team, spread out all over the country, praying for Easton and us as we await his arrival. It’s rather humbling and I’m not sure that by saying “thank you” will ever be enough.  

 As I walked back into the house and down the hall to the nursery, I saw an adorable baby bed, assembled and all. My heart was no longer heavy but just thankful that we have a place to bring Easton home too. But more importantly, I am reminded that he already has a room, it’s in our hearts and in the hearts of so many others. I am hopeful that one day that room will be filled with lots of poopy diapers, dirty laundry piled every where, and so many sweet baby giggles. The nursery isn’t done but neither is the Lord’s work on this path that we walk.

A Special Day for Our Little Boy

This past Sunday afternoon, old friends, colleagues, and family members gathered around to shower our beloved little boy, Easton. Words cannot describe the joy it was to witness only a small portion of the people we know who are praying for us and loving us as we journey through this path. Even more so than receiving gifts for Easton, it was such a reminder of God’s faithfulness to me along this journey. You see, our journey to fix Easton’s heart is only a small part in the greater picture of our story.

The road to being parents, started long before Easton’s existence. Somewhere in about year two of marriage, we began talking about starting a family, as most couples do; however, the road to pregnancy was not easy. After about a year of trying to start a family, we sought medical help and I was prescribed medication that would “surely” get us pregnant. Well, after seven long and miserable months of medicine, my OBGYN said she could do no more and referred us to a reproductive endocrinologist (a fancy term for ‘fertility doctor’). We immediately fell in love with the endocrinologist, trusting her judgment, and after months of testing and procedures, we were deemed a “go” with our first fertility treatment procedure, an IUI. After a few unsuccessful attempts, we were heartbroken and just frustrated and decided to take a much-needed time off from the hustle and bustle of doctor appointments and medications. Right after our last attempt, I can remember reading a friend’s blog, who also struggled with infertility, and her words struck a chord in my heart. I was failing to simply be content with all the God had given me to enjoy in this life—a loving husband, a beautiful home, a job that I love, great friends, and a wonderful church family(to just name a few). That’s when it hit me. I needed a new perspective. I no longer felt the need to BE a mother, yet still a longing desire, it just was no longer my identity and purpose in this life.

Well, to make this REALLY long story short(er), about half a year after our last unsuccessful attempt to start our family, we had an unexpected run in with our RE and she started to talk to us about IVF. We listened to her and said we would think about it, which we had, months prior, but decided that it would be a LAST resort…maybe four to five years down the road. However, after revisiting the topic, it no longer became a taboo but something we prayerfully considered and felt a peace about pursuing IVF. Originally, I had felt embarrassed and ashamed, having had thoughts of what would people say or react when we told them about IVF. But a dear sweet friend of mine, reminded me that people were on our side and wanted us to start a family, regardless of the way it happened. Never once did we not feel at peace with IVF, which helped those thoughts diminish and go away. So, this past summer, we took a huge leap of faith, and decided to give IVF a try, not knowing at all the path that was ahead of us. Although life became utterly busy with appointments, shots, and tears of anxiety along the way, God continued to not waver and pave our path to start our family.

After our first attempt at IVF, for the first time in my life, I heard the words that I had dreamt and prayed for year, “You’re Pregnant!” At about week 6 of pregnancy, I start to bleed and feared the loss of our beloved little baby. We went to the doctor the next morning, and our baby was still living and heard its sweet heartbeat for the first time. Tears falling from our eyes, we were overwhelmed at this sweet life to come. I tell you this story because today I made a connection and it made me smile. Our fetal cardiologist recently told us that at about five to six weeks, in-utero, when the baby doesn’t even look like a baby, and everything is twisting and forming, that’s when Easton’s heart didn’t develop properly. I can’t help but make the connection that God ordained our little’s boy’s life, even back at week six when everything was forming. People often say that miscarriages occur because of a genetic mutation that didn’t allow the baby to form properly. Words can’t express how overwhelmed I am that God deemed Easton’s life as a masterpiece, even though the medical community would disagree.

I think back to that gut-wrenching office visit sitting and waiting to hear if we had lost our baby, to only think that it was the beginning of such a unique and special journey. I’m so thankful that Easton’s heart was beating that day and each and every subsequent day that it continues to beat, even though deemed imperfect. I can’t help to make the connection that God had big plans for our “little red ninja,” and continues to let his heart beat and body form throughout this pregnancy.

That’s why on days like Sunday, a special day to celebrate Easton’s life, it really IS a celebration! On the way to shower, I got emotional because I thought about all the drives I had made to friends’ baby showers and gifts I had given, only this time, we were driving to OUR own baby shower. A day where people gathered around and didn’t dwell on Easton’s heart disease but rather to celebrate the sweet life that has been entrusted to us. I can’t tell you how many hugs I received with quiet whispers in my ear, that families, churches, and friends were/are praying for us. It was a beautiful snapshot that yet again serves as another reminder of how God is meeting our needs throughout the support, prayers, and encouragement of so many.

God was certainly good to us through infertility, IVF, that day when we heard Easton’s heart beat for the first time, and even on the day when we found out that he has heart disease and several other health complications. He continues to be good and we cling to that each and every day. Even though we are facing the scariest and most challenging road we have ever walked, I am reminded of His faithfulness even before our journey to parenthood began.