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.

 

 

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