Morgans Story Part 2: Hank Our Heart Warrior

At 8:18 pm on June 22nd, Hank made his way into this big, wonderous world. He was born by c-section after a failed attempt at starting Pitocin to kick-start contractions. See, even after my water broke, my baby was still being stubborn. He was nice and cozy in mama, and I don’t think he realized the eviction notice was coming whether he wanted it or not.

I think back now and try to remember the emotions that coursed through me that day. I remember being ravenously hungry all day. Like, I could have inhaled a turkey sandwich. I felt disheartened that my body wasn’t responding to labor like I thought it would. And sad that my pregnancy was coming to an end. And also so, so scared of what was coming next.

The surgical staff was chatting away while I was on the operating table in labor and delivery- Shey was sitting next to me, holding my hand. After what felt like an eternity, we heard the sweet cry of Hank Richard Anderson pierce the air. I sobbed with Shey, because we didn’t think we would hear him cry. The doctors warned us that he may be really sick; “not responsive”, and my heart sank. But Hank's crying was proof otherwise. Our kid was a freaking fighter already and I was SO proud of him.

No, we didn’t get a golden hour. I got to see my baby for five precious minutes through an incubator wall as the NICU transfer team prepared to take him to Primaries from U of U across a sky bridge. Tears rolled down my face as I saw Hank was already hooked up to multiple IVs, pumps, monitors, and oxygen. This was going to be our new normal. Hank was on his own, no longer hooked to my lifeline. This realization broke me. I sobbed into my mom’s shoulder as they wheeled Hank out of my room, with Shey bringing up the tail-end of the transfer.

They say that newborn moms heal like super humans. I pushed that c-section scar and my recovery as fast as I could the following five days. Shey consulted with Hank’s doctors and spent half of his day's bedside in the CICU, doing skin-to-skin and FaceTiming me when he could. I was able to make short trips with Shey to Primary with the assistance of a wheelchair, but sometimes it was all too much. A baby in the OR coded the first time we visited Hank together, and it took everything I had to not unhook that little boy in his bed and wheel my ass as fast as I could out of there.

How do you become a parent in the hospital? When you have no power over decisions made? When you feel completely helpless-you can’t feed your baby, change their diaper, or even hold them without permission. How do you bond?

I will say, I never had that problem. As soon as I laid my eyes on Hank, swaddled warmly in his bed with a binky in his mouth, snoozing as comfortably as he could, I fell in love all over again. It’s true that your children are an extension of your heart. His eyes were blue. He had a full head of dark, soft as down hair. Shey and I spent hours talking to him while he slept in our arms. We stroked his hair and kissed his cheeks when we could. He looked absolutely perfect. He was sweet as pie and cooed at us, held our hands, and snuggled right in when we would come to visit.

I would delicately organize his hats, binkies, swaddles, and books in the drawer of his warmer bed at the beginning of every day. Shey and I would laugh and chat with his nurses at the beginning and end of every shift-getting every update and writing them in our NICU journal to reference daily. We researched, navigated trends, wrote love notes to Hank, and made notes about his daily cares and caretakers so we could remember details. We grilled his doctors over meticulous details, having them repeat answers over and over again so we knew as much about our baby as we could.

Oh…our sweet stubborn Hank. Out of the many diagnoses Hank was given- he battled through them all. His feeding issues were the absolute worst! We persevered through severe reflux, issues with my milk, SO MANY different types of formula, and constant belly pain. We celebrated every single ounce Hank gained! Despite his constant puking and the fact that he pulled out his NG tube every other day, he still smiled. He loved to rock, and bounce, and sway back and forth in our arms. As each week passed, his personality shined through behind the mustache cannula, wires, cords, and tubes. We could tell when he really liked his nurses because he would stare at them and smile during cares. We started to get a sense of when he was hurting, uncomfortable, or just needed some love. We cried when he cried, smiled when he smiled and cheered him on when his sats (oxygen saturations) stayed in their 75-85 % range.

When Hank was three weeks old, I got to change his tiny preemie diaper for the first time. I was so nervous! His nurse that day was amazing. She helped me feel comfortable enough to lift his tiny body and maneuver his femoral PICC so I could clean him. At the end of July, we got to give Hank his first bath. With an emesis bag full of warm water and Johnson & Johnson Cotton Touch baby soap, and hospital rags, we gently washed down his body in his bed, then changed out his linens before dressing him in a new onesie and hat. These memories have become core memories now-moments where I first began to feel like a mom, doing normal mom things, just in a different way.

Chose colorful baby blankets to decorate Hank’s bed from the CICU closet. Using flavored Skittles chapsticks to break oral aversion. Receiving the most beautiful baby blankets, swaddles, and toys from Child Life. I cherished spending time with our nurses as they always helped me feel at ease with “momming” in the ICU.

They empowered me to advocate for Hank’s needs and every day was full of heart education. We would FaceTime daddy while he worked. His grandmas came to visit often and he LOVED IT. After work every day, Hank and Shey would spend time listening to Lord of The Rings music, drawing, or watching TV together. Hank doted on his dad and I heard SO many stories about Shey and our silly baby giggling and snuggling together after I went home for the day.

As our life continued in the hospital, we grew used to the routine. Hank was still too dependent on high-flow oxygen to go home to await surgery. So we knew we would be inpatient until then. We spent our days playing, reading books, doing therapies, taking walks when we could, and snuggling! Of course, there were always uncomfortable moments. More than any baby should ever have to go through. Tons of IV pokes. Hundreds of X-rays. Six trips to the cath lab in less than 4 months, followed by trying to wean off the ventilator for up to a week after. MRI’s. Strokes. A massive flood destroyed the CICU and made our team scramble for a temporary home in the hospital. Some days, it took everything Shey and I had to keep ourselves together when we were with Hank. We didn’t have any answers…about anything. We feared for the future and simultaneously cherished each minute with our son.

At the end of September, we discovered his surgical case was much more severe than we thought after imaging studies. His pulmonary veins were small, which caused concern about his first upcoming heart surgery, the Glenn. Hank bypassed the Norwood surgery by getting a stent placed in his PDA during his first week of life. It gave us a temporary solution while we waited for him to grow big enough to raise his odds of survival for OHS (open heart surgery). We also learned his circulation was Right Ventricle Coronary Dependent Circulation, meaning his heart had grown coronary fistulas that provided necessary blood flow to the heart itself. This is a common condition that develops in children with single ventricle anatomy, and it can prove fatal if the coronary flow gets interrupted, resulting in a heart attack. There were ways to reroute that flow during the Glenn, but Hank’s care team was worried. He was over three months old and surgery was right around the corner. What was our team’s decision?