The day I was told there was something wrong with Wally’s heart was the second hardest day of my life. The first… losing Henry. Most of you are probably wondering why I didn’t start with writing about Henry. He is where this all began. He made me a momma. To be honest…I’m just not quite ready to write about him just yet, to lose him all over again. I’ve even been putting off writing another part of our story because its so very hard to think back to those days, to look at the pictures, to feel the things I was feeling that day. It all seems like a blur now… but than… it was like my world was ending all over again.

To give a timeline, Wally was admitted for RSV on the early morning of the 5th of February. On February 7th he wasn’t making much progress. He had to be put on what is called heated high flow oxygen. Basically its moist oxygen to help break up the junk in his chest. He also wasn’t eating well (which he never had since the day he was born). We had such amazing doctors and nurses but one senior resident stood out among the most. He is the one who essentially saved Wally’s life. To this day I wish I would have gotten his name to thank him for saving our baby.

On the morning of the 7th he was doing his rounds. He discussed how Wally should be weaning off the oxygen by now, not adding heated high flow on day six of his symptoms first appearing. I remember he kept asking a lot of questions which made me nervous. The main question being, “Is there any history of cardiac problems in the family?” I kept replying “Besides heart disease on AJ’s side of the family. No. Nothing.” And than… I thought about Henry, how Henry passed. I remember my stomach dropping and feeling sick. He must have saw the look on my face because he asked “Did you think of something?” I told the story of Henry and how he passed and that the autopsy came back that he was in heart failure and had dilated cardiomyopathy. But I reassured him that all the doctors were 80% sure that it was a virus I had caught and passed on to Henry in utero. He didn’t look so convinced. I remember the look on his face, the concern, the worry. He was going to go discuss everything with his attending but that Wally would probably have a cardiac workup in the morning.. “just to make sure”. I remember thinking ok… nothing to worry about. Henry had a virus. A virus. There was no way Wally could have the same damn virus. If only it were a virus. Viruses can be fixed. Viruses can be cured. What Wally had… what Henry had.. was far worse.

The early morning of the 8th… The day our world would come tumbling down for a second time. The senior resident rounded extremely early along with the attending. The attending spent what seemed like hours looking over Wally. Listening to him… inspecting every inch of his body. I remember thinking this lady is weird. Why is she inspecting him like he is some sort of lab rat. She also asked “Has anyone ever mentioned anything to you about his ears?” His ears?! Kid has enough problem. What the hell is wrong with his ears? I remember saying that to her and we both laughed. But she said how his ears were misshaped and lower on his head than most peoples. The questions were swirling in my head? My mind going a mile a minute. What does this mean? Could there be something else wrong with him? No. No way. God wouldn’t do this to us after losing Henry. They came up with a plan to do a cardiac workup because of the history of Henry for just in case purposes. Ok.. I can handle just in case purposes. Everything will be fine and we will all be reassured. The senior resident explained that they would do an echo (ultrasound of the heart) and if something comes back abnormal a cardiologist would come to our room to explain the results. What worried me… the resident seemed nervous. The attending seemed nervous. Which in turn..made me nervous. AJ and I tried to pass the time by laughing about the ear thing and how crazy that attending sounded. The echo tech came and left. And we waited… It didn’t take long.

AJ was napping. Wally asleep. I decided to go to the vending machine to get a drink. As I was walking back I saw the senior resident, the attending, another resident, and a man in a white coat who I had never seen before standing outside our door putting on their gowns and masks (Wally was in isolation due to RSV). I cannot even describe the feelings that I felt in that moment. Another doctor. A cardiologist. Something was wrong. I remember stopping in the hall. Not being able to move. My heart started racing. They noticed me and said “Heres the mom now.” The new doctor asked me to wake up my husband and I did. I remember shaking, the tears already forming, my stomach churning as Wally snoozed in his bed 2 feet away. I sat in the chair, AJ standing next to me. As I looked up at all these doctors with tears in my eyes, I started begging, pleading, praying to God for it to not be true whatever it was. And than the “new doctor” spoke and my world as I knew it came crashing down for a second time.

“Walter’s heart isn’t functioning like it should.” Seven words. Seven words is all it took for me to let the tears fall. He kept talking, words like ejection fraction 35%, not sure what is causing the heart failure, want to run more tests, transferring to the PICU, maybe inserting a central venous catheter, starting cardiac medicines. I remember going and picking up Wally and just rocking him, crying into his shoulder. I remember squeezing AJs hand as I sobbed. The senior resident handing me tissues. All the doctors looking at us with the same sad face. I tried asking questions, not sure what those questions were, because I think my body just shut down. Heart failure! Our seven week old baby, like his brother who passed away, was in heart failure. None of it made any sense. We were just admitted for RSV. How could this be happening? What seemed like hours probably only lasted twenty minutes. We knew we had to call our parents. We knew we had to pack up our room because they would be transferring us to the Pediatric Intensive Care Unit. But AJ and I just stood there crying, hugging each other. I remember telling him, “I cannot lose him. I will not go through this again. I cannot. I won’t survive.” We took a minute. Gathered our composure, wiped our faces, and we started to move. I walked out of the room to call my mom and get some air. He stayed with Wally and called his mom. After telling our parents who said they were on their way, we started packing up our room.

Once in the PICU, and in our new room, a ton of new doctors swarmed us. Asking our history, etc etc. It was decided Wally didn’t need a central venous catheter (thank God). Blood work after blood work needed to be drawn. The genetic counselor would be by to talk to us. It was the most exhausting day. A lot of people. A lot of questions. No answers. But those answers would eventually come but it would take another five days for that answer to come. It would take a lot of blood work from Wally and us. It would take starting meds and titrating them. It would take a lot of sleepless nights, crying, praying, and bartering with God. We would have a lot of visitors, friends, family who rallied beside us. In the process of some very long days waiting for that answer, we would again be transferred to a different room. This time, down the hall, to the intermediate floor. And than we would sit, love on Wally as much as we could, and wait… again.

I never thought writing about our story would take a lot out of me emotionally. But it does. It’s one of the reason I have been writing it in parts and it takes me a couple days to finish. It’s hard for a person to look back on some of the worst days of their life. To re tell it is like reliving it. It’s hard. But it also gives me perspective. Where we have been. Where we are going. It is all apart of our journey. Wally’s Journey.

Thanks for reading. Stay tuned for the day I became a Barth momma.

2 thoughts on “More than RSV

  1. Oh honey I cried all the way through this…I can’t even imagine how hard this is to relive that period in your life…hopefully by writing this it help to unburden you…some momma somewhere is going to read this and it will help what she is going through…that yes it is scarey but there is a future and she can draw her strength through you….hell girl I see a support group coming out of this….Kelsey and AJ you are one of the strongest young couple that I know….my ❤️ And prayers are with your little family….love you guys ….Cindy M

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