Zach's CHD journey

I have yet to officially document Zach's CHD journey. One day, he will be able to sit still long enough to contemplate all that he has been through, so I wanted to write out his story...

Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...

Our family a few hours after Zach's birth --- before we knew there was a problem...

At the small county hospital where they took Nora and Zach after she delivered him at home (not on purpose! Read this post.), Nora signed the papers the night he was born surrendering her parental rights. The next morning, we talked to the doctor about circumcision. He said he would have to determine if they could even do it that day with only the weekend crew on hand. They decided to do it after all, so I decided to get my shower while they took him down the hall for the short procedure. Long after my hair was dried and my makeup on, they still had not brought him back to us.

After about 1.5 hours, the doctor returned with a grave look on his face. I remember the next few minutes as if they happened in slow motion. He sat down and said that they found a problem with Zach's heart. His blood oxygen levels were low (a testimony for the need for pulse oximetry on newborns!) and so they took him to their small NICU. They did an echo and said there appeared to be a problem with his aorta, but that they were not equipped to handle such issues. They had contacted doctors at the Medical College of Georgia in Augusta and were preparing him for transport there since it was only about an hour's drive from where we were.

Our daughter, Rebecca, 8 years old at the time, had spent the night with some friends that lived in town. When they arrived with her that morning, we had to tell her that she couldn't see Zach and that we needed to take him to another hospital. She cried so pitifully. I know she had to have been so scared. She had prayed for years for a baby brother or sister and I can only imagine how her little heart was breaking. Fortunately, Nana Cherryl and Papa DR had arrived and were there to take Rebecca home with them. They were a godsend during the next week as they did everything they could to help her have a "normal" week.

They allowed Bill and I to go back and see Zach in the NICU before they transported him. They had him on the respirator in case he should crash during the trip and he was so miserable. He was fully awake and fighting that tube for all he was worth. I imagine that they could not give him anything to calm him down without knowing if he could tolerate it. Poor Nana Cherryl had to see him for the first time that way! I remember standing there, feeling so helpless, not knowing what to do for our little boy.

Finally, they were ready to take him but we were not allowed to travel with him or even follow the ambulance. We jumped in our van for the hour-long trip to Augusta. We had no idea what we were driving into. Or even if our baby would be alive when we got there. We tried to talk but we didn't know what to say and neither of us wanted to discuss the possibilities. I remember leaning my head on the cool window watching the countryside go by and trying desperately to make sense of what was happening.

When we arrived at MCG, we checked in and dealt with the confusion of this Hispanic baby with no name except Baby ____ (Nora's last name, which I won't reveal here). I know that when our biological daughter, Rebecca, was born, we filled out the birth certificate not long afterward and signed it as her parents. Well, all that was complicated by the circumstances --- the adoption and the medical emergency --- I don't even know if a birth certificate existed at that point, and if it did, it surely did not have our names on it. We showed copies of the papers that Nora had signed and eventually got our lawyer to fax us some papers that provided proof that we were, in fact, in the process of adopting this little patient.

The next hours and days were filled with tests and enough medical terminology to make our heads spin. As we tried to ask the doctors and nurses questions, we found ourselves using words like "thingy" and "whatchamacallit". They would smile and give us the correct technical term before answering our questions. One question we had was if our little boy stood a chance of having a normal life. Our daughter, Rebecca, had just gotten a Slip 'n Slide, so that was her question --- would Zach be able Slip 'n Slide with her in the back yard? They assured us that it was their goal for Zach to be able to run and play like any other child --- and be able to Slip 'n Slide with his big sister. I think they hit the nail on the head...

They had to allow for Zach's newborn body to go through all the changes that newborns normally go through before they could get a definitive diagnosis. After several days and several echos, they determined that Zach has 3 defects. One of his defects is Transposition of the Great Arteries. The aorta and pulmonary artery are switched and enter the heart at opposite points from where they should; that is why the doctor at the small hospital thought there was a problem with the aorta. The problem they actually saw, Zach's second defect, was a partial blockage or stenosis of the pulmonary valve. This stenosis meant that Zach was not getting enough blood to his lungs to be reoxygenated. Zach's third and most serious defect is called single ventricle. Whereas the normal heart has 4 chambers, Zach essentially only has 3 chambers. His right ventricle is there but undeveloped and inoperative. His left ventricle is responsible for pumping blood to the lungs and the body, so it is doing double duty. There is a really good explanation of this type of defect here.

Eventually, they determined that Zach was stable enough and that his oxygen saturation levels were good enough, in the mid 80's, for him to go home and grow. He was eating, but boy was that hard work for his little body. I never realized how much of a workout it is for a baby to drink a bottle! All the sucking and swallowing and breathing... for a heart baby, it is just about too much! Nonetheless, we took him home, though we were scared to death.

I took him for his first followup appointment back in Augusta 2 weeks later. Bill was not able to go, so I took Nana Cherryl with me, thank goodness. Zach had been eating pretty well and he seemed to be doing well. The pulse oximeter told a different story. 65. Yikes. I guess because of Zach's dark skin, we couldn't tell that he was so cyanotic. The doctor said it was time to schedule his first surgery and sent us home. If we were scared to take him home with sats in the 80's you can imagine how I felt that day taking him home at 65. Oh, mercy!

We returned to Augusta early the next week for pre-op and the BT Shunt on May 23, 2006. It was so hard to hand him over to the nurse. Of course, he didn't know one set of arms from the other. He just slept on. It was even harder to see him after he came out of surgery. He was so swollen and with all the tubes and wires and IV's... It about broke my heart.

The doctor that did his surgery went in under Zach's right arm. I always thought was a good thing because the scar would be hidden. Then I realized that he would need 2 more surgeries through the chest. Oh, well. Battle scars.

Over the next few days, he improved and was eventually moved out onto the floor. He continued to have stridor, or wheezing when he breathed or sucked the bottle. They said his vocal cords were probably traumatized during in- and/or ex-tubation and that it should get better, but it continued. So, they did a swallow study and determined that he had reflux. He was not a spitter, but everything he ate was coming up and sitting there around his vocal cords, keeping them irritated. They prescribed Zantac for the reflux, lasix for fluid, and baby aspirin and sent us home.

We followed up at Augusta after surgery, but found that the long drive was impractical with such a little baby, so we arranged to see a local pediatric cardiologist. We fell in love with Dr. Raunikar! He is a wonderful Christian doctor. He was fully willing to work with the doctors from MCG to coordinate Zach's care, but we eventually felt led to check out MUSC in Charleston, SC. It is about twice as far to go, but their program is so much bigger and more specialized. They also network with Dr. Raunikar's group. Zach's surgeon, Dr. Bradley is tops in the field and we owe him so much.

We made the switch to MUSC and Zach had a heart cath in December 2006 and Glenn surgery there in January 2007. I have to say that it was even harder than the first time to hand Zach over to the nurse on the morning of his surgery. Unlike when he was only 3 weeks old, he had developed a personality and a smile that could light up a room. We knew what it felt like to have his little arms around our necks and feel his super-wet kisses on our cheeks. It didn't help that he clung to us and cried.

So now, we await the next surgery, the Fontan. Currently, Zach is right at 31 lbs. I am waiting for his next big growth spurt. Dr. Raunikar says he should be big enough by this summer. We expect to have a cath done in April that will help the doctors determine a good timeline.

Looking back, I marvel at the hand of God on Zach's life. God led Nora to put him up for adoption. If Nora had kept him, who knows what would have happened? She probably would not have had him circumcised, so I don't know if they would have found the problem before releasing them to go home. 45 minutes away from any hospital. Nora or her mother unable to drive. Swaddling his body in layer upon layer of thick blankets, as is their custom. If they had found the problem and sent him to Augusta, how would Nora have gotten there? How would she have navigated the language barrier? Where would she have stayed and who would have paid for it? Would she have lost her job as she stayed by her baby's side? How would she have gotten him the care that he needed? I know without a shadow of a doubt that God had a plan...

As I watch Zach play every day, I remember our little baby in the NICU, fighting for his life. As he does all the typical boy stuff --- wild and rough and tumble and sometimes violent --- I remember that we stood around that little bassinette wondering what type of life this little one would have. When I get irritated at his contant rambling (too often, I admit), I remember watching him struggle against a tube in his throat after surgery, unable to make a sound. I praise God for giving us the privilege of being Zach's parents. The hurdles that he has overcome are a testimony to God's strong and merciful hand on his life and we feel blessed to have experienced it with Zach. He is our little Superhero!

This is how we see Zach nowadays... as a blur!