victories

Beautiful tragedy. Two words. Two simple words. Short but meaningful. Simple and straight to the point, yet powerful or even joyous but full of pain, heartache and sorrow.

I look back and think these words are the perfect definition of that time–the trial for our family, the valley we walked in. Here’s the thing, the beautiful part–we were walking and not standing still. In retrospect writing these posts, these excerpts from our story, I realize I have forgotten so many things. So many things I feel I need to share. Some beautiful and some tragic.

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We absolutely knew The Lord would mend Case’s heart, we just weren’t sure how.

He could have completely healed it before Case was born. But, He chose not to.

He could have mended Case’s tiny, broken heart by making it whole in heaven. But, he chose not to.

He instead, chose to put the perfect medical team together. These doctors and nurses, they have been covered in prayer for months. These people, they would work together and come up with the plan for my warrior boy. A plan that I am sure many thought to be crazy and incomprehensible but it worked. Because of one word. Jesus. Jesus is always better.

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The day after Case was born David had to go back home to finish a job. I was alone when we got the call that they were prepping Case for surgery. I was wreck. I was holding it together on the outside but on the inside I was a complete and total wreck. My parents were with me, and looking back, I couldn’t have made it through those first few days without them. We get through the first surgery but I couldn’t hold, touch, or even talk to Case and I needed clean socks. Socks. I hadn’t done laundry at RMH before we went to the hospital and I needed clean socks. So my mom and dad take me to target and I just lose it–over socks. Lose it as in falling on the floor, collapsed, crying because I’m at target buying socks and my kid isn’t with me. Instead, he’s in a hospital, surrounded by loving and kind nurses and doctors getting the best medical attention in Texas but I wasn’t with him. I hated that. Is was so difficult, the guilt and sadness consuming me–and I just withered–right there in the middle of target. My dad had to practically carry me out of the store.

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Or the time when David and I went to eat at Olive Garden when Case was in the NICU and I just started crying. Our poor server, she didn’t know what to do, so she just let me cry. David let me cry, right there in the middle of Olive Garden, I was crying.

Or when we have to stay 3 extra days on the recovery floor because Case isn’t gaining weight. 3 more days of checks and pricks and sleepless nights and zero privacy days. I was so ready to leave that hospital.

Or how every single time I wash my hands with that Texas Children’s soap the memories or sterile rooms, metal sinks and life-clinging (maybe I should say life changing) days come flooding back. I will never forget the soap.

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Or when our family and friends and even some of my students drove hours to sit with us in the hospital even though they couldn’t even visit Case.

Or when the parents of the kids in my class sent emails and text messages the day of Case’s surgery. Each and every family, praying for Case, his team, David and I. And the teachers send hand written notes, and my boss comes to see us twice in the hospital.

People I don’t even know pray for us, for Case, for his team. Sending us letters, care packages, donating to our Go Fund Me and other fundraisers to help offset the cost of extensive medical bills.

Doctors coming into his recovery room, wanting to lay eyes on my warrior boy. The boy with the tiny pulmonary that became an aorta. The boy who’s heart was once thought to be unmendable, the boy with now pink lips and flesh colored nail beds. They look as his scans and then look at his scar and have no words. They tell me this. Again. So many doctors tell me that they never thought it would be possible. That Case was was the topic of conversation at cardiology round table weekly meetings before and after his surgery. They, again, can’t explain his success, his less than normal but amazing recovery. I tell them there is only one answer. Jesus.

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These are the people, who knew it or not, were vessels for the Lord. He revealed Himself to me, to David, to us, in so many ways. Our hearts were pursued when we turned away. He is good. He is always so very good. Not in the superficial way when we say we are blessed, because we really are, but in how He chased us, minute by minute, hour by hour and day by day. He never stopped pursuing our hearts. Because he is So. Very. Good.

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——————————————-

Case stayed in CVICU for 7 days and then was moved to the recovery floor for 6. There were many ups and downs during those days, but eventually he was discharged to RMH where we stayed in Houston for another 3 weeks. His cardiology checkups have slowly staggered and he now doesn’t have to be seen again until January of 2018 (Feb. 15 as in two days from now!). A whole year, people. A whole year. I feel as if this is a huge triumph for my CHD warrior boy, my heart hero Case. I want to soak up the appointments, the ones with good news and cheery laughs because eventually they will change. That is the reality of being born with a CHD. That is the reality of being a heart mom.

 

[originally posted 2/13/2017]

*edited and updated 2/13/2018

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waiting

 

 

It’s February 19th now, and almost 24 hours after we handed Case over for his surgery. We wake up and make it to the hospital for rounds. We arrive early, before 7, and there is already a sea of white coats in his room. I make it there before David. He dropped me off to go park. I hear the night nurse say, “the mom is here” and a stillness falls among these great minds. The pens stop writing and the conversations come to a halt. These people, these doctors, are working on making my baby better, but he is sick and hasn’t improved over night. His pressures are still fluctuating, his kidneys, they still have not woken up from bypass. Cardiology is consulting with the Renal Team for the next steps. The decide to give him a little more time and determine he will need a bigger dialysis tube in a few hours if things don’t change…and they don’t. He is still on the vent and high flow oxygen, he is still sedated and can not move because of all the wires, tubes and machines that are attached to his near lifeless body.

David and I spend some time talking to the doctors and getting to know their faces. They are all so kind and answer our questions, even though I’m sure I asked the same ones over and over again. My eyes veer to the screen that shows is oxygen saturation continuously. It seems so surreal. He’s stats are still 98-100…the same numbers a normal person would have. But, it is hard to see him this way. Mostly because I know what he was like before surgery, and I am yearning to have those days back. My heart longs to hold him, to touch him even, but those are luxuries that must wait until he is stronger.

The next several days are a waiting game… waiting to see if the new dialysis tube works, waiting to see if he will take breaths on his own, waiting–so much waiting.

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It’s four days post-op and the swelling on his body is starting to go down. They wean off his medicine just enough to allow him to wake up for a little bit and my blue eyed boy looks at me for the first time since the night before his surgery. Opened eyes, something so minuscule in everyday life, something I am sure I took for granted before these days, but something now that I will never forget happened that February day.

There are many moments that we all wish we could relive or do over, or just not do at all because they seem so mundane–at least for me there are plenty. I could spend all of my time thinking of 20,000 ways I could have done something different, or I could spend my time intentionally just enjoying what is happening in the “now.” So whether it’s watching your baby open his eyes for the first time, reading a book before bed, having your little one “help” load the dryer piece by piece, or simply having a conversation with someone you love–treasure those moments and don’t ever let them go and please, don’t ever take them for granted.

 

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Provisions

(Feb. 18, 2015)

We get to the waiting room, check in, receive our buzzer for updates and sit down. It’s a long room with several people. People with a kid that has already had surgery, people with a kid in CVICU (cardiovascular intensive care unit), people with a kid on the recovery floor. There’s a RMH room with snacks, showers and lockers attached. Snacks, because it’s hard to eat when you don’t know the outcome of an uncertain and terrifying situation and showers because of the many nights and days families spend at the hospital waiting to see if their child will live or die. These are the stark realities of the CVICU and CHDs (congenital heart defects). Nothing is certain, and nothing is promised. I will become more familiar with these norms in the hours and days to come.

The minutes seem like hours and the hours like days. Time is slow and there isn’t a single thing I can do to make it pass. We know it will be an all day procedure and we don’t expect to even be able to see our boy until the evening…or later. Fraser’s words are swimming in my head– “If I can talk myself into it, I’ll do the switch.”

Both sets of our parents are there but they keep their distance. If you know me, I’m not a talker in these types of situations, and I certainly couldn’t handle someone else’s emotions–or hugs.

Fraser’s nurse practitioner, Mrs. Nancy, comes with updates every few hours. The first update comes. He is sedated and they are beginning to open his chest, split his sternum and observe his tiny beating heart.

About an hour or so later we are buzzed for an update again. Fraser is doing the switch. Case’s VSD was in a bad position for the other two options and his pulmonary artery was measuring not 3mm, not 5mm but 7mm wide. I will come to find out that the doctors, they can not explain this. They are in awe of my warrior boy and his brave heart. They tell me it’s a miracle, I tell them it was Jesus.

The rest of the day seems to be a blur. Waiting, updates, bypass, coffee, updates, pumping, updates, still on bypass, more coffee. At 8 hours in his VSD is repaired and the muscle blocking his pulmonary artery and valve is resected–something that could not be seen on the echo. His pulmonary, small and underdeveloped, only because it was being blocked and unable to grow. That bit alone also weighs Fraser’s decision to do the switch. Fraser is working on the coronaries. The big vessels come next.

We wait. At 5 or 6pm we get the update that he’s coming off bypass, a task his 8 pound body did not handle well. Around 8pm Fraser comes to talk to us. He is pleased with the surgery. It was long, and we won’t know the long term outcome, but the goal was to get Case to his first birthday, hopefully more. There is uncertainty about his new aorta, but like I said before, we were running out of options, and this was the best case scenario so we are all relieved. Case is closed up and in the CVICU, but we can not see him yet, he is sick and the team needs time getting him stable.

A bit later we are met by a doctor, one I haven’t seen or met. She’s not from cardiology (red flag). We still haven’t seen Case yet and it’s after 9pm. 12 hours in the OR and more getting stable–we are nervous wrecks (probably an understatement). This doctor is from the renal failure team. Case’s kidneys are not working and many of his other organs are having trouble waking up from being on bypass so long. His life, put on hold with minimal blood flow, and his body having trouble catching up. He is stable though and they let us see him.

We ride up the elevator with the MD we just met. She takes us to his room. There are several doctors waiting to tell us about our boy. There are machines, tubes and wires everywhere. Case had been on the vent before, but this time, it takes me by surprise. The machines, they are keeping him alive. My eye catches a screen, one I have seen often. I find his oxygen saturation numbers and for the first time it is a steady 100. I cry. This is the first glimpse at the hope of a normal childhood for my warrior boy. Those stats–A huge victory in the CHD world. A victory matched with 20 more challenges. The doctors tell us that these things happen, kidney failure, slow recovery, and that the next 24 hours are critical. They also tell us that the human body is resilient, and they are right. We can’t stay in the CVICU so after talking to the doctors, meeting his nurse and feeling secure enough, we go back to RMH. This is the first night we sleep. Only for a few hours, but we sleep.

A surgery we thought not to be possible was, a pulmonary artery 4mm bigger than expected, and our warrior boy made it through a 12 hour operation. It’s a short night and long day ahead but there is peace. So much peace. There is trust. So much trust. And there are mercies. Mercies that are new every morning. Provision making, heart exposing, rescuing mercies–mercies that picked up our mess from 1000 pieces, in our deepest, darkest struggles, when we were laying on the floor, collapsed, screaming out to Jesus, these are the mercies that ever so gently put us back together.

If you’d like to read my previous post in Case’s story, click here.

[originally posted 2/11/2017]

Broken

The day is Sunday, February 15, 2015. Case is almost 6 weeks old. His big surgery is on the books for the following Wednesday, but he becoming more sick by the day. We have clinic Monday and Tuesday for all kinds of pre-op stuff so we are heading to Houston early. We get checked back into RMH and prepare for a long day of appointments on Monday.

We arrive to clinic and go through the usual procedures–one more echo, one more x-ray, one more pulse ox, one more EKG. We are meeting Case’s surgeon for the first time. The man we have been praying for. The man with steady hands and determined heart. We meet Fraser and his team. He is kind, but transparent. He makes no promises. He tells us his surgical plans. Plans people, plans. Because Case’s pulmonary is still measuring 3mm wide, and in order for it to become his aorta it needs to be 5 mm wide. But he says he needs to see for himself. To make sure we don’t miss an opportunity to make the switch happen. We trust him. He’s the best, world renowned and we are out of options. Case has lost more weight. His skin is dusky, his finger tips pale blue, his lips a grayish pink. His tiny heart has been working in overdrive the past six weeks. Trying to keep up with his body, but he is tired. So very tired. Fraser holds him, listens to that heart, then answers our questions.

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Because we are already at the hospital, they send us down for lab work. By now it’s after 5 and the waiting room is crowded. There are screaming kids, crying babies, stressed and overwhelmed moms and dads, just trying to survive lab work, let alone what comes next for each of them.

They call Case. We go in. The room is tiny and the tech can’t get a vein. She tries and tries. Case is screaming. He is passing out from screaming so much. They call  VAT (vascular access team) , and it is even difficult for them. They finally get a vein, get the blood and we leave. Case is so tired. He sleeps and refuses food. David and I take turns staying up with him during the night. I don’t think either of us have slept since in days. We are are too nervous. Our minds, they won’t turn off. Thinking of the things that could happen. The conversations we had to have. “What if we don’t walk out of this hospital with our baby?”  “What if we leave as two and not three…?” Conversations that no parent ever wants to bring up–but we did, and we know what could happen. But we trust, because not trusting, like I said before, it’s just too hard.

We arrive in clinic on Tuesday morning. Case has still not eaten and is lethargic. His cardiologist, Dr. Ayres, runs into us, I ask her to look at Case (we were there to see Fraser’s NP) and she begins checking him out, making calls, something is not right. She says I did the right thing to find her, but what if I waited to long…? The NP comes, gets some Pedialyte in a bottle and he drinks a little. He is dehydrated and worn out from labs. For about 6 hours surgery is off until they can get him a bed on the step down floor to better assess him. He finally eats and the decision is made–we can’t wait. Surgery is on. Case and I spend the night on the cardiology recovery floor and David goes back to RMH so we can keep our room.

It’s February 18th now, a day I will never forget. We leave the room at 6:30am, Case is still sleeping. He’s in his extra clothes from the diaper bag because we didn’t have anything else. We go to the surgical floor and meet the anesthesiologist. The Child Life lady is there, and she is wonderful. Her calming voice stills my quivering soul. David is quiet. We can’t put into words the feeling of letting your baby go. Giving him to physicians for what will be a 12 hour surgery. Chest open. Bypass. At six. weeks. old. We give him one more hug and kiss and watch the MD and PA walk with him down the hall, through the double doors, into that sterile OR where his life will be put on hold. My heart is breaking. I do not know if I will see him alive again, and I’m trying to hang onto this memory, ingraining it in my brain. His blue eyes, his pale skin, his sweet smile. David and I walk to the elevators and we both cry. We needed to. Before we went down to the waiting room, we just needed to cry. So we did. Our kid is in the OR and we are left there, at the elevators waiting. crying. praying.

If I have learned anything from those days, it is this– It is ok to fall apart. Sometimes, we need to fall apart to be put back together. At that point, it hurt like hell. I have never been so broken, or felt so abandoned. The weight of the day is oppressing and I feel as if I can’t handle it. The darkness is flooding back. The doubt, the worry, the lack of worth. But there was light, and we were being filled. Being filled by people who just showed us love when we needed it. It was a long day, and I’ll tell more about tomorrow. But just know, we were empty, so so empty, but being filled.

 

 

[Originally posted 2/10/2917]

If you would like to read more of Case’s story, click here. 

 

Mercies

Those short months turned into weeks and then into days. Before we knew it, we were heading for an indefinite stay in Houston. A requirement of the TCH maternal/fetal program and delivery at Texas Children’s is moving to Houston a month before your baby it due. If something happens, they want you close. We were able to stay at a friends apartment for a few weeks and then moved into the Ronald McDonald Holcombe House about 2 weeks before Case was born.

I was induced on a Wednesday morning and Case was here by 4. There were 3 people in the room for me and about 5-8 for Case. The NICU team arrived, and the doctor told me he would try to let me touch Case if he was well enough. You see, when you have a sick baby, and you know about it ahead of time, luxuries like holding your baby or even touching your baby are not promised. I longed for those moments. When would I hold him? When would I get to see those tiny feet, and 10 little fingers? I knew he would be taken quickly, because babies with defects like his can go downhill quickly. I was doing all the work while he was inside me, but outside, with room air it was different. The questions of “How would his heart react? Is it as bad as we thought?” need to be answered.

The NICU team assessed him. He wasn’t crying but wasn’t quiet. He was perfect. I caught a glimpse as they raised him up to put in the cart. After a few minutes it was determined that David and I could hold him for a picture, but then they would have to leave. So I held him. For about 20 seconds, and it was the most wonderful 20 seconds I had ever experienced. I said goodbye to David, kissed Case and was left in the room with the nurse and MD for me. 

Dr. Ayres was waiting for Case in the NICU. This was a relief to me. Each and every time we were with her, we had her undivided attention. Although she has hundreds of patients, she has a way of making you feel like you are her only one. So to know that she was with Case, well, it meant a lot.

The evening and night passed and by 7am I was cleared to go see him. He was hooked up to many wires and tubes. His oxygen levels plummeting into the teens overnight. I was able to hold him again, for a few minutes. Before the doctors came, and another echo was ordered and then an X-ray. I went back to my room to get something, and received the call. They can wait no longer. “Come now, we are prepping for surgery.”

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The results from the echo showed what we thought during pregnancy. His pulmonary artery so small, fragile, with little blood flow. Too small to function as his aorta. A surgical option was to let him grow and in order to do that they had to make his ASD bigger by literally tearing a bigger hole in between one of his top and bottom chambers to get more oxygenated and deoxygenated blood to mix. The only way to get his oxygen levels up, and the only way to see if his pulmonary valve and artery could function long term. So at 20 hours old, Case went in for surgery. A quick procedure, maybe a total of two hours, but he was intubated now, and I couldn’t hold him, or touch him, or even talk to him. He was critical. But y’all, prayer works, and Jesus is sweet, and within 4 days, this little baby that had stats in the teens was on room air. He was eating, and beginning to gain weight. His doctors, they stood amazed. These things, they are not normal in NICU4, and they are not normal for a heart baby. After two weeks, Case was discharged from the NICU to RMH. His big surgery still up in the air. We needed a hopeful surgeon and for his heart to become stronger.

Throughout our appointments prior to Case’s birth, surgical options were laid out for us. The things that could happen, the things that might happen, and the things we wanted to happen. We wanted his aorta to become his pulmonary, and his pulmonary to become his aorta, but this surgical option had been on the back burner. His doctors didn’t think it was possible. His pulmonary too small, his VSD too large, and we can’t forget about that valve that is restricting blood flow. But 6 weeks later, after more appointments, more echos, more scans, we found that hopeful surgeon that just couldn’t let it go. Dr. Charles Fraser. The only surgeon we could find to take a chance on our boy. The only surgeon to give us hope.  He just had to take a look for himself. Because, for babies like Case, the window for certain surgeries closes at 6 weeks, and Fraser just had to try. He wanted to give Case the opportunity for a more normal life and for less future surgeries.

The Lord, He is so good. Showing us, that he would heal Case’s heart, putting the perfect people in our path. Any other surgeon would have said no. But Dr. Fraser, he said “yes, I have to try.”

These mercies, they are awe-inspiring, hope-giving, truth-illuminating and courage-giving mercies that are new every morning, and I’m not sure about you, but I could never live without them.

 

 

Click here if you’d like to read my previous posts from CHD awareness week and Case’s story.

 

[originally posted 2/9/2017]

Thirsty

I walked out of that hospital forever changed. I will never forget that day. The day a doctor told me I should cease the life of my child. I called David. By now the tears had dried but new ones dwell in my eyes. I could barely talk. And he knew. He knew it was the worst case scenario. One we had vaguely talked about. He assured me I wouldn’t have to go back there. So he did what all men and daddies do. He tried to fix it. He call my school, talked to my principal. She prayed for us, right there on the phone, in the middle of her regular, normal day, she stopped and prayed.

After David made all the necessary phone calls (to the limited people that knew about the appointment and our situation), he began researching–Researching doctors, hospitals, cardiology programs. He came up with two places we wanted to explore. Texas Children’s, in Houston, with the #1 cardiology program in Texas and 2nd in the US and Boston Children’s in Boston, #1 in the US.

About two weeks, a stack of paper work and about 200 phone calls (I’m serious on that one) later we were scheduled for a 2 day set of appointments in Houston.

That day came, we left early, and this time David was with me. Our first appointment is pretty early, we arrive, park in one of the gazillion garages in the med center and try to navigate our way to the women’s side of the hospital. We are obviously newbies. We ask a man walking close to us which way we should go. He senses our nervousness and gives us directions, but instead of leaving us in the maze of hallways he walks us up to the long hall that connects the children’s side to the women’s side. He’s a doctor, a cardiologist, on his way to clinic, and took the time to walk with us, talk with us, and assure us we were in the best possible place for our baby. He didn’t have to, but he did. Because that’s the culture at Texas Children’s.

We check in and fill out more paperwork. Meet our nurse, and then Case’s new doctor. She is a breath of fresh air. Dr. Nancy Ayres is her name. She’s a maternal fetal cardiologist and pediatric cardiologist. She was/is an innovator in the field of fetal cardiology. She introduces herself and then sits and visits with us for a few minutes before we go back. The tech does the scan and then Dr. Ayres comes in to get a few more pictures.

When it is all done, we wait in a small room until she is finished reviewing the scans. She comes in. We know the prognosis is grim, we are bracing ourselves something even worse, and in some ways it was. She starts explaining the anatomy of Case’s heart. Free drawing pictures of a normal heart and then Case’s. Comparing them, showing us, step by step, what each part is doing or not doing and how it is effecting other parts of his heart. The prognosis is still, DORV, both arteries stemming from the right side, d-TGA, his pulmonary artery pumping oxygenated blood to his lungs and his aorta pumping deoxygenated blood to his body–(it should be reversed), he still has a large VSD, an ASD, and smaller than normal pulmonary artery. She tells us that even for heart defects his isn’t normal or a run of the mill. She can not ensure or tell us what will happen in the months to come, but she tells us this, “we will do whatever it takes to give Case the best quality of life we can.” She gave us hope and saw his worth, and for that, we are eternally grateful.

Our stint of appointments and trips back and forth to Houston started that day and haven’t ended. We went every few weeks to check on Case’s heart and then I saw my local doctor in between. We spent the next few months, mentally and emotionally preparing for a several month stay in Houston before and after Case arrived. Those few months between that first appointment and when we moved were some of the most peaceful months I’ve ever experienced.

David and I, emotionally, physically and mentally tired, drained and burdened…were filled with Life daily. My class that year was like a dream, they loved me so, they loved Case, and were just exactly what I needed to get through until December. Our friends and family, so supportive and loving. My school, so understanding. We were walking in the middle of a desert, thirsty, and being filled.

Looking back two years later, it is still hard to believe that this is my life. It’s hard to emotionally grasp what we went through. It was harder even then. We were living day by day and hour by hour. Living on a lot of prayer and decaf coffee. It was easy to question God. “Why us? Why my kid? Couldn’t you do this to someone else?” I was being selfish. I would never want anyone to go through this and I knew it. I was jealous, too. He had slain me. And I didn’t like it. But I would trust, because not trusting, well, it was just too hard.

I am thankful for those days, and our story, and our experiences. Those experiences, they have stretched me more than I ever knew was possible, they have molded me into who I am today, and they have taught me that always, not matter what, it is for my gain, and His glory.

 

**Originally posted 2/8/2017

[EDIT] Texas Children’s Hospital Heart Center is now the leading pediatric cardiology program in the country.

 

If this is your first post to read, you can find our diagnosis story here.

 

 

Shattered

It was a normal august day on a Friday when we found out if our baby was a boy or girl. The excitement was rising. We were waiting patiently for the three words we wanted hear “a healthy baby” but they never came. Case wasn’t our first pregnancy, and after experiencing a loss, we honestly cared less about the gender, we just wanted a healthy baby.

I left school a little early to make the appointment, a 45 minute ultra sound that turned into almost two hours. The tech said “I can’t get him positioned correctly, I can’t seem to get all the pictures of his heart.” I was a naive, first time mom and didn’t think much of her remarks. She didn’t say anything more. Two days after we found out our baby was a boy, we also found out that he had a heart defect–a VSD, or a hole in between the bottom two chambers. My doctor ensured me that in most cases the hole closes and not to worry. She set us up with a specialist for a few weeks later. So we prayed. “Jesus, please close this hole. Jesus, please, listen to me, I need you to heal my baby. “

Those few weeks later come and I drive to the specialist a few hours away. I wait for my appointments. I’m nervous. But everything should be fine, right? I mean, we are normal people– something like this couldn’t happen to people like us… wrong. Because even though we are normal. Even though I feel like we are “good,” sometimes bad things happen to good people–and my world will shortly be shattered. 

The tech does the scan. Then, the doctor comes in. I can tell by his face the news isn’t good. “Multiple defects.” He says. “Double outlet right ventricle, transposition of the great arteries, a large VSD, an ASD, a small pulmonary artery with minimal blood flow, and the valve to that pulmonary artery is barely functional.” I am stunned. I told myself I wouldn’t cry, but I feel the fiery, streaming tears race down my cheeks and fall onto my neck. I can’t hold them back. I’m by myself, David is working, and there aren’t any freaking tissues in the room. (Why the heck aren’t there any tissues?!)The tech runs to go get some. He shows me them on the screen but I can barely see. My eyes are burning and I just want him to stop. I want it to be yesterday. When I didn’t know. When my baby was just my normal baby. But it isn’t yesterday, and my days of normal are over, so I listen. I am speechless. The doctor continues “minimal quality of life (worthless),” he says. “Failure to thrive (worthless).” “Failure to grow, possibly inoperable (worthless),” he says. “Possibly a chromosomal anomaly.” Long Pause… “Considering all these things most people in your situation would choose to terminate.”

Silence.

I know my worth and my child’s worth and I never doubted it but I am thinking…he believes our baby is worthless… “Mrs. Hebert, do you understand what this means? Did you hear me? Most people in your situation would choose to terminate.” I lift my head and look him the eyes. “I am sorry, but we are not most people.” (He. Has Worth.)

You. Have. Worth. You are fearfully and wonderfully made and the same God that made light from darkness, beauty from ashes and gave us an empty grave is the same God that breathed life into our precious baby and life into us all. So please, whatever your circumstance, never doubt your worth.

 

[Edit]- Looking back and reading these still brings tears to my eyes. Still talking about this specific day makes me emotional, even more emotional than when Case was in the OR for almost 13 hours–and I’m honestly not sure why. Maybe because I wonder how many mamas, women, children, daughters of THE KING hear this kind of news and feel as if they have no other options. How many PEOPLE hear things like this about their unborn child and have no idea it is their human right to get a second opinion. This is why I advocate about CHDs. This is why it is important to research doctors, surgeons and hospitals. And this is why I will try every day of my life to help give a voice to ones that feel little hope in shattered situations. Because even with shattered hearts, emotionally and physically, and shattered situations, there is always Hope and always WORTH. 

 

*Original post from February 7, 2017

 

*While I was editing  and adding this post to the blog “Heart on Fire” by citipointe Live came on so I thought I’d add it in. I had never heard the song before, but seemed fitting for this post.