March 9th 2023 marks 2 years since we sent Ethan into heart surgery. And its taken the better part of those 2 years for me to be able to write his story. I guess a better way of saying that would be, “God’s story for Ethan” because if there is one thing I have been able to learn from all of this is that Ethan is 100% fully, God’s creation. God has loaned him to me temporarily just raise him and walk him through this life. It’s a very humbling position to be in, the one that just assists a little angel along a path that seems to just light up everywhere he goes. It’s in that thought that I have learned the sweetness that is appreciating all of this “temporary” life and that I have learned to celebrate the unending grace God has covered us in. And when say grace, I mean grace, heaped upon grace. We have lived covered, surrounded and doused in God’s grace for the last 2 years.
When Ethan arrived on November 14th of 2020, we were still living in the thick of COVID-19. Without getting too graphic, Ethan was a product of fertility treatments. Treatments that took place the weekend the world shut down. Specifically, 2 days after the world shut down on March 15th of 2020. That weekend would open my eyes to God’s indelible fingerprints all over this child’s life. We found ourselves in a fertility office on a Sunday morning in the middle of the craziness of a global pandemic. You see, we prayed fiercely for Ethan for years. Like knees on the ground, crying out to God to bring us the baby we so fiercely wanted to add to our family, kind of praying. Years of trying, drugs, and hormones, kind of praying that we know now was just God’s perfect timing but in the moment felt like an excruciatingly slow clock winding backwards. After years of waiting and 37 weeks of growing, Ethan arrived on a Saturday night 24 hours exactly after my first contraction.
Elated was an understatement, we were thrilled and our family as we knew it was complete. You only have to look at my husband’s face to read everything we were feeling in that moment. 30 minutes later, Ethan decided to throw us for the first of many loops. His oxygen levels started to sink and he was taken to the NICU for evaluation. To this day, I am still very grateful for the nurse who noticed his coloring and for the pediatrician on-call that insisted he could not stay in the room under the care of a woman who just labored for the better part of a day. God’s grace.
Ethan’s heart issues were not discovered until he was 5 days old. Through a series of almost comical errors, we were greeted on the morning of his 5th day of life by the Neonatologist telling us that not only, had he not fully examined our baby but that he believed he had Down Syndrome and that they were going to do an Echo to see if his heart was the cause of his oxygen issues. We had inconclusive testing during my pregnancy but nothing pointed to a confirmation of DS or a heart condition. Level 2 anatomy scans pointed to a perfectly healthy baby boy. To say we were surprised is again, another understatement. I can’t speak for Jeff but I will never forget our eyes meeting across a little NICU cubby while the physician delivered news that forever changed our lives.
That afternoon we left the hospital to pick up our daughter from a school event and decided to grab dinner at Chili's on the way home. I had not seen Emmery since I went into labor the Friday before and was eager to see her and set her mind at ease about her brother. Thank goodness for our village of people that kept her world turning while ours seemingly stopped inside a tiny NICU cubby. God’s grace. I don’t remember much about that dinner other than Jeff picking up his phone and seeing again, the look of sheer panic while the Dr. delivered another life changing diagnosis. Lord knows, I am not patient but by far one of the most painful pauses I have ever sat through was watching my non-medically inclined husband hear that our son was missing pretty much the entirety of the center of his heart. He hung up and we all cried…in the middle of Chili’s…on a Tuesday night. The poor waitress in Chili’s had no idea what happened. I would still love to know who she was and apologize.
The next day we had a conference call with the Cardiologist that read Ethan’s echo. At this point, I only had the information Jeff was able to translate from a one-sided conversation. So Jeff, myself, the Neonatologist, Ethan’s nurse and a nursing student huddled into a small room and listened while a Cardiologist not affiliated with the hospital delivered the news about Ethan’s heart. To be quite frank, he did so with the grace of a drunken elephant stumbling through a china shop but that’s honestly not important. Armed with a little more clarity I began to understand the severity of what we were dealing with. I immediately texted our current pediatrician. I told him that we were just delivered a Down Syndrome diagnosis as well as the diagnosis of an unbalanced, complete AV Canal. His response was exactly what I needed. He said, "It’s going to be ok. We’re going to figure it out”. God’s unfailing grace. In that moment, I needed someone to make the world stop tilting on its axis and tell me that we were going to be ok. Dr. Justin Smith did just that. He hopped on the phone with the Cardiology team at Cooks and from there we devised a plan. It was also in that moment that I realized that the role of “advocate” was thrown on my plate. The Neonatologist was probably ready to see us go when we exited the NICU 2 weeks later but when I look back, I can pinpoint this moment as the one where I decided that I had to be the one to take the reigns of my son’s healthcare.
**Side note: Believe me when I say I could write 100 different posts on medical care…good, bad and ugly. This post is purely shared to give Glory to God for Ethan’s surgery and to give another Heart Mama hope, not to rant. We have had some rough experiences but by and large we have received phenomenal medical care. God's grace again.**
In the months leading up to Ethan’s open-heart surgery I felt like a hamster on a wheel. We left the NICU and came home to await surgery. My role of full-time Surgery Center manager turned into full-time caregiver for Ethan. Ethan had to learn to eat without losing his O2 saturation levels. Babies with heart conditions often tire out before they can eat enough calories. It’s a delicate balance of eating enough without eating for too long to burn off what they have just consumed. Shortly after birth, we started ALL the therapies. Each week in addition to our Dr.’s appointments, we were in physical therapy, occupational therapy, speech therapy as well as Nutritional therapy. Our days were long, but I found myself grateful for the pace at which I got to enjoy him being small. God’s grace.
In January of 2021, they determined that Ethan was in acute systolic and diastolic heart failure. The diagnosis popped up in his portal and slapped me in the face. For some reason, seeing it in writing just stopped me in my tracks which may or may not have been in the middle of a grocery aisle at Target when a message popped up on my phone to confirm an appointment. One of many times, I cried big, fat, ugly tears. This angel I was pushing in the cart was in heart failure and I could do nothing but help him grow until he was scheduled for surgery. A surgery that I had no idea would be successful or if it was just an open gate for multiple surgeries to follow.
Ethan’s heart was different than other children. Parents of kids with Down Syndrome will attest that medically nothing with our kids is easy or simple. There is always a hitch. It comes with the territory of that 47th chromosome and while it adds to how our kids sparkle, it adds to the complexity of treating them too. Ethan’s left side of his heart was significantly smaller and more undeveloped than the right. He had basically one big valve doing all the work and oxygenated blood was getting to his lungs but not enough to his body. And we all know that the heart is a muscle but when half the muscle is too small or isn’t working well enough it puts strain on other parts. My job between January and our newly received surgery date of 3/9/2021 was to get weight on Ethan. You might as well have told his chubby Mama to climb Mt. Everest or lose 100lbs in a week. Hard is not the correct word. Impossible comes closer. I cannot convey how much of a challenge this was and continues to be! We were seeing 2 different nutritionists regularly trying to come up with ways to increase his caloric intake without constipating him, tiring him out or him just flat out refusing to eat because solution 10367 tasted like tar. The cardiac team wanted him no less than 4.5 kilos or 9lbs and it seemed like an unsurmountable goal. I held my breath when they placed him on the scale and he weighed in at his pre-op appt at 4.53 kilos. I felt like the Rocky soundtrack should start playing. I am fairly certain I scared the tar out of the nurse when I screamed, “yes!” It’s the little things, folks. God’s grace again.
When we met with Ethan’s surgeon, Dr. Tam, a renowned Cardiothoracic surgeon at Cook Children’s I waited an hour to meet with him. In most situations, my impatience would have gotten the best of me but somehow when the man you are waiting for is essentially given credit for saving the majority of hearts in the state of Texas, you just wait and enjoy the fact that your newborn is sleeping in the stroller next to you. They refer to this as “Tam time” and it’s kind of a thing. Dr. Tam is an unassuming man with kind eyes. We talked for the better part of 45 minutes and he was laser focused. He explained to me that the variance in each side of Ethan’s heart was a big complication. He explained that there is no option for him to give Ethan a 3 chamber heart. He explained that children with Down Syndrome do not have good outcomes with 3 chambers and that he had to find a way to give him 4. He explained that Ethan’s heart was the size of a walnut…let me say that again…a WALNUT. He drew on a marker board a diagram of Ethan’s heart and told me of past surgery stories. He listened and answered all my questions like he was Cardiology’s Ghandhi. I left feeling like we should pat each other on the shoulder pads and yell, “break!” It was game time and we were as ready as we could be which as you may guess is also not nearly ready enough.
In those moments leading up to surgery I found myself in my old, familiar “desperate” praying position…kneeling and crying out that God bring my baby through surgery. This usually occurred when I was cleaning. I am kind of a stress cleaner and I usually listen to praise and worship music while I clean. This is strategic in that it keeps me from being AS bitter about cleaning up after my children and husband. I remember hitting my knees after the meeting with Dr. Tam and praying something that few would understand. I prayed that Ethan make it out and that he would thrive but I prayed that if it weren’t in God’s story for him to make it out, that God give me the understanding to know why and the vision to be able to tell God’s story through Ethan’s life. Praying like this changes you as a person, as a parent, as a mom…it just changes you. You are fundamentally different and you see the world differently. It’s not bartering with God. It’s praying for HIS will to be done despite what the outcome may be. People would say, “You can’t think like that…that he won’t make it…” and I wanted to scream at them that I had to think like that. How can you not think about all the options in front of you? Many don’t understand this nor do they want to. It makes people uncomfortable and to this day friends have distanced themselves from us since Ethan’s birth because they find it awkward or hard to talk to us. Those aren’t our people and that’s ok. That too, as hard as it is, is also God’s grace.
We all prepare and deal differently. For me I did things I knew I would regret if I didn’t do them. I made sure we ate dinner together and bonded as a family of 4. My daughter and I made footprint and handprint art. We gave Ethan a long baths and took silly selfies. I sang and rocked him and held him tighter. I appreciated all the things that previously I took for granted and still do sometimes.
When the morning of surgery came, we walked into the pre-op room and there was a markerboard drawing of Yoda. Silly but still God’s grace. He met us exactly where we were. If you know my husband, you know he loves Star Wars and this just felt like God was giving us the nod we needed. The nursing staff was incredible. We did not have to undress Ethan or disturb him in any way. It was very early in the morning and as I am sure you can imagine they wanted him as calm as possible. God’s grace. He slept until we got to walk him down the hall and I passed him off to the OR nurse. She carried him behind the double doors and we cried. Standing in the hallway of the hospital, ugly crying. From there we took our post in the waiting room and started the process of calling family and friends with updates. In some ways, the time flew by because we were busy passing the updates on to everyone. On the other hand it was the most excruciating 8 hours of my life. At 4:35pm we watched a team of people wheel toward us through the same double doors we stood at 8 hours earlier. In gowns and hats, they wheeled a regular hospital bed with machines and tubes all over it. At the very center was my 9lb baby boy. Gods grace. They stop briefly to let us give him a kiss and then they head to the CVICU. He was intubated and sedated but I had never been so happy to see him in my life. I felt like I had been holding my breath for 8 hours. They left and we cried…again. We cried because he looked so little and because he was alive and because they said we could see him again in an hour and we cried out of sheer relief. No doubt that it was God’s grace again covering us.
About 2 hours later we made the first of many treks down a long hall into the CVICU. The CVICU is like an exclusive club with a VIP entrance. It’s not a club anyone wants to have access to but no one forgets what it feels like to enter. I have passed the entrance to this hall since and I can still feel the same wave of anxiety I felt standing there waiting to be let in. That feeling never leaves you. It gets better with time but like an old habit it sneaks up on you when you least expect it.
Room 13 – right in front of the nurse’s station. We didn’t even have time to take in all the lines and tubes, IVs and channels surrounding our baby. There my little boy lied on a bed and we stood there taking it all in. My husband and I marveled at the fact that we had never seen our baby breathe like that....slow, steady and even…ever. This time, it was just me crying those big, fat, ugly tears again. Happy tears but tears nonetheless. Eventually, Dr. Tam made it back around. I asked how it went and he responded as casually as he would if he were talking about the weather. He said, “It went great. I gave the new valve a small leak so that it would force the left side of his heart to grow. He has four chambers.” Jeff and I were dumbfounded. This was not an option that was presented to us in fact, quite the opposite. We were told over and over how he was so complex and small. How we needed to prepare ourselves for him to be on ECMO. How small babies typically needed to have their chest left open and to prepare for multiple surgeries. Ethan had 4 chambers. Ethan’s heart was balanced. For the first time in his heart was supplying his body with oxygen and he was pink. Y’all…God’s overwhelming grace upon grace.
While Ethan’s surgery went beautifully well, his recovery was not complication free. Far from it, actually. He ended up with a blood clot from his central line which pushed back discharge. He took longer than expected to wean off of oxygen and ended up going home on oxygen after 3 weeks of being in the hospital. But as of October of this year, Ethan has been cleared to only see the Cardiologist annually. We have no idea what the future holds for Ethan’s heart. We have been told to prepare for additional surgeries as he grows but one thing is for sure, I will never not sing the praises of the God that carried us through.
So many times over the last 2+ years I look back and see how God was working in our life without even realizing. More than could ever be mentioned in this post. We see people and places that preempted decisions we made and it was all God laying the ground work. Jeff and I would come to the same conclusions at different times and in different ways but we both acknowledge that it was God working in us, preparing our hearts. Emmery was at the right school surrounded by the right people at the right time. She had a village that wrapped her up and let her feel all the things while we were dividing time between home and the hospital. None of that would have been possible without God’s intervention and divine plan working in our life.
People ask often about our journey and apologize for it or ask if we would do it differently. The answer is and will always be emphatically, no. I would not change anything because I am a better person for walking this journey with Ethan. He is brave, strong and courageous. His determination pushes me to be better, do better. He is literally the happiest baby and I give ALL glory to God for that.
Fellow heart Mamas, Mamas to children with complex medical needs – if you have questions please feel free to reach out. I would love to be a resource or just an ear.
XOXO
Kristin
