The Surprise Open Heart Surgery

I'm going to start this with the ending and you can read the middle if you want: on Thursday the 11th our first born will be having open heart bypass surgery. This is not an emergency but has all come about very quickly and we are scared. Your prayers are very much appreciated. 



Last summer our eight year old daughter, L - our eldest, would be playing in the back yard. She'd race her siblings, climb the maple tree, roller skate, ride her bike, jump on the trampoline, crash through the sprinkler and then she would come up to us and say, "My heart is pounding and I'm out of breath!" Like the low-key, good parents that we are, we would say, "That's because you're playing hard. Sit down, drink some water, and rest for a bit." She would and in a bit she'd feel better and get back up to play some more.

Over the winter, though, she would cross a room and tell us that her heart was pounding; we even noticed that we could actually see it pound through her clothes. So in early March I took her to our family doctor. I mentioned that years ago his former colleague and our former doctor had heard a murmur, which no one ever heard again. He listened to her explain everything, checked her over, listened to her heart, and said he thought it was probably nothing but would send her for some tests just to rule everything out.

So the last Wednesday in March Travis took her to the hospital for a couple of tests. We thought it would be nothing. We didn't even really tell very many people because we didn't want to make a big deal out of it. We weren't worried - why should anyone else?

And that Wednesday night I missed a call from the doctor, who then left a voicemail saying, "Your daughter has a heart defect and her heart is enlarged. Call me tomorrow." And then we did the stupidest thing possible: we googled "heart defect, enlarged heart." And everything told us that our daughter would die. Travis took our second class relic of Fulton Sheen, laid it on our sleeping girl's chest, and prayed for a miracle. When we went to bed that night, holding on to one another and crying, we pleaded with God to not let her die but wondered how long we would have until she did.

The next day I spoke with our doctor and his nurse who gave us better news. L had a hole in her heart and the right side of her heart was enlarged because it had been working so hard. She would be going to a pediatric cardiologist but he did not believe that this was life threatening. Stupid Google and stupid us for stupidly putting ourselves through that. But that night Travis again took the relic and laid it on our daughter's heart and asked Fulton Sheen to pray for her healing.

That first week of April we went to the Children's Hospital of Illinois to meet with the cardiologist. Immediately the doctors could hear the murmur and just by sight and feel they could tell that the right side of her rib cage was bigger because of her enlarged heart. They ordered another echocardiogram and this one showed that not only did L have a hole in her heart (ASD), it was tucked up in a hard-to-reach spot and some of the veins from her right lung had not connected to her heart in the correct place (PAPVR). Surgery would be needed but first a CT scan needed to be done.

My little sweetie pie went with her dad for the CT scan before school on a Friday. In preparation she practiced laying very, very still. It paid off because she was perfect and no anesthesia was needed.

That next Monday the cardiologist called us. He was surprised at how large the hole was - 16mm! - and then explained that 2/3 of the oxygenated blood from her right lung was going to the wrong place in her heart. Then because of the hole's placement a good portion of the blood from both lungs that was doing what it ought was actually spilling back into her heart to be cycled through again instead of leaving for her body. The good news, though, is that because we found the problem when we did her lungs have not suffered any damage yet and all of this can be fixed by the surgery. After the surgery she will be able to live a normal life - playing all the sports and having all the babies she wants to. And Travis kept putting the relic on her heart and praying.

My understanding is that because of the size of the hole and how much of her blood was not being circulated correctly the issue went from "we can do the surgery in the next year" to "we will do the surgery before the end of the summer."

And on Sunday morning I sat in church listening to Fr. Nathan from my favorite podcast deliver his homily. He focused on the line from the Gospel, "We hoped He would be the one to redeem Israel" and he talked about how those disciples had seen Jesus do miracles, they had believed in Him, they had been invested, but here we see how their hearts are broken. They feel abandoned, scared, and let down. And I knew *exactly* how they felt.

"If this is how You treat Your friends, O Lord, no wonder You have so few!" said Teresa of Avila and echoed in my heart 500 years later.

On Wednesday of this week (yes, the same day as the IEP because God is funny) I got a phone call from the hospital offering us May 11th for the surgery. We took it and immediately began making plans for Lydia to finish her school year on the 10th, for Travis to stay with her in the hospital and miss work for at five days, and for my mom and others to help with the other kids so I can be with L as much as possible.

People ask how we are doing and we are okay. I mean, we are scared, worried, anxious, tired, overwhelmed, and Travis and I hate seeing the fear in L. She is being so brave, praying her rosary and so sincerely praying when we attend adoration and Mass but she is very scared.

People are taking care of us in incredible ways. Her school has been wonderfully supportive and caring. Our pastors care very much and will be hearing her confession and anointing her the morning of her surgery. A very good friend of ours arranged with the school and parish for adoration to happen while L is in surgery. Friends and family are signing up to support, help, and pray.

It's definitely not anything I ever thought I would have to deal with but we are grateful for what it is and the love we are being shown. And if I have seemingly blown you off or ignored you in any way recently, well, now you know why.



Update - You can read about L's surgery and recovery here.