Friday, February 3, 2012

The Faces of CHD Part Three: DAVID

Written by his mama, Jolene Tesch

On May 21, 2010 at 6:29 a.m. we welcomed our second son, David Dwayne Tesch. 

David was born a seemingly healthy baby weighing in at 8 pounds 12 ounces. He nursed multiple times on this birthday, he had good color, he had good weight but in the late hours of his birthday, and early morning hours that followed I began questioning the nurse that “something” did seem right. For six hours I was unable to get him to nurse. He was sleepy and cold and was breathing fast. This wasn’t anything like my experience with our first son, Charlie, but was quickly calmed by the nurse. I asked the nurse to take him to the nursery so I could rest…maybe he’d start to show signs of hunger soon. The same nurse entered our room a short time later and our lives were forever changed when she told us there was something wrong – something seriously wrong. She suggested we go say goodbye to David before LifeLink got there. I remember walking into the Level 2 nursery, slowly walking by each of the pink babies under warmers thinking each one was David, and then have my eyes finally rest upon David - completely and totally in shock and horror of what I saw. The LifeLink crew from Children’s Hospital in Minneapolis had arrived and said it was very likely we would never see our son alive again. David had entered into respiratory failure, congestive heart failure and acute renal failure from his body being starved of oxygen. Even before I could be discharged from the hospital, the medical team at Children’s were able to diagnose him as having several complex heart defects ‑ aortic stenosis ( What's that? ) with thickened restrictive leaflets, coarctation of the aorta ( And that? ), an under-developed left ventricle and an under-developed mitral valve commonly known in combination as Hypoplastic Left Heart Syndrome (HLHS).

On May 22, David began his journey with a balloon valvoplasty to separate his aortic valve leaflets. He spent nearly a month in the NICU allowing his organs time to recover and lose the nearly four pounds of fluid he had gained. They knew he would never be able to survive heart surgery or a cath procedure in his delicate state. We were told every day that it was a miracle he was alive and that is something we would never, never take for granted.

On June 14, David had open chest surgery commonly called the Hybrid Procedure in which they placed bilateral pulmonary artery bands and a stent in his PDA vessel. The stent allowed blood to “by-pass” his narrowed aerota and flow to his body. The pulmonary bands restricted blood flow to his lungs so more blood would go to his body. They used this approach on David given the fragile state of his other organs. They needed more time to allow his other organs to continue to heal and for him to get bigger before putting him through open heart surgery and on bi-pass. On June 18, he was final able to “eat” via feeding tube for the first time since his birth. David’s lungs still appeared wet in his daily x-rays so on June 29, David underwent an atrial septostomy to help equalize the pressures within his heart in hopes that his lungs would clear up. On July 7, doctors discovered he had chylothorax (a build up of fatty fluid around the lung(s)) and installed a drainage tube to allow the fluid to drain. After unsuccessful attempts to remove him from the ventilator and his heart function continuing to decline, David underwent a catheter procedure to place another stent in his PDA vessel. The placement of this stent allowed the pressures in heart to equalize again.

To the surprise of many, on July 19, David came off the ventilator for the first time since his birth day two months earlier. What a joyous day! We got to hear him cry. We got to hear him coo. What a beautiful and joyous sound! One that we had taken for granted before but weren’t ever again. I am pretty sure our family wasn’t the only people amazed at how hard this little guy was fighting.

After much debate for us, it was decided that David would have a feeding tube placed so we could bring him home and let him grow for his open heart surgery. Many of his major organs still needed more time to heal and work properly before undergoing another trauma like open heart surgery. On August 10, we were finally able to bring David home. It was a joyous day for our family to finally be under one roof…one that we will never forget and one that we hold onto as a family.

After being home for less than 24 hours, David took his last breath while peacefully napping. The attempts to revive him “one more time” were unsuccessful.

David defied many odds placed on him and showed many people miracles really do happen. We knew from the moment he was diagnosed that every minute we had with him was going to be a savored blessing. Although he was never able to say a word, he said so much with his soulful eyes. You could almost imagine the stories he was telling you of seeing heaven and angels. We get by each day without him by holding onto the memories we have with him, the sound of his sweet cries and coos, and knowing that our sweet little boy will never have to feel pain again. We just hope that he entered the gates of heaven knowing how much he will be forever loved.
David & Mama.. can you just feel the love from this photo?

2 comments:

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  2. I can't even imagine the strength you must have! David was absolutely beautiful and so lucky that you are his mom! Thank you for sharing your story with us!

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