July 19, 2017

Heart Surgery Recovery


As soon as we shared our news that our eldest daughter, L, had two congenital heart defects and would need open heart bypass surgery people have been awesome. Like "The Body of Christ can move mountains" awesome. Like every dot, flower, and thorn painted with the Sacred and Immaculate Hearts above represents a prayer, a sacrifice, a rosary, a Mass offered up for my daughter, and those are only the ones that were submitted online. But every time we take a long look at that painting I am overwhelmed by the goodness of others and the way God is glorified by your works. 




The first Tuesday night in May Resa, L, and I sat around our dining room table with L's godmother, Katie, making invitations to their angel penguin birthday party. The next morning, with invites in the mail, I was sitting at my weekly moms' group when I got the phone call from the pediatric cardiologist's scheduler: there was an opening for surgery a week from Thursday. Did we want L to get it? We wanted L's surgery to happen before my c-section so we said Yes and then our life changed gears super fast.

All the potential party-goers were contacted and told that the birthday party would not be later in the month but in three days. The school, whose principal had already said L's last day could be whenever we needed it to be, was told that her last day would be in a week. We made arrangements for L to receive Anointing of the Sick before the surgery, for someone to be with our other kids, for Travis to be off work, for all our "i"s to be dotted and our "t"s crossed. 

The morning of L's surgery everyone got up early and headed to the 7am Mass. We had been given special permission for L to receive a very teeny tiny bit of Holy Communion. Fr. Julius prayed for L  at Mass and asked everyone present to pray for her throughout the day. In fact, a friend of our's had arranged with our priests for there to be all day adoration with a special request for people to pray for L. Parishioners would be at our church until 7pm praying for L and during the school day each grade took a turn before the Blessed Sacrament to pray for our daughter. 


Immediately after Mass our family headed over to the parish school and waited in the gym. Our pastor had arranged with the principal for there to be an all-school assembly immediately following Morning Announcements so that the whole school would be part of the prayers offered during L's reception of the Anointing of the Sick. It was awesome. Our family stood with her on that gymnasium floor as Fr. Julius administered the Sacrament. 


We then headed over to the Children's Hospital of Illinois, Travis, L, and me. From the tremendous outpouring on the blog, Facebook, and Instagram we knew that people were praying for us all over the country and world, and when combined with the powerful experiences at our parish we knew that we were being absolutely covered in prayer and graces. We were afraid and anxious but I can say with confidence that those prayers helped to bring us peace and calm our concerns. We were bowled-over by how many had pledged their prayers and we walked into the hospital knowing that you all were with us as we went.  


Some of Travis' students had made a special blanket for L when they heard about her surgery and as she waited for her surgery she wrapped herself in it. It was covered with hearts, the symbol of love, and anchors, the symbol of hope. I loved it. 

As we waited in the pre-op area we were again blessed in a special way. The hospital is a Catholic one, and in more than name only. The people who update loved ones throughout the operation process are from the chaplain's office. The man who just happened to be assigned to us is also a deacon at our parish's sister parish. He was able to give us a special blessing and as he prayed over us the nurse stopped what she was doing to pray with us, crossing herself when we were done.

After waiting for about an hour, playing Uno and chatting the whole time, it was finally time to go. Different doctors and nurses and specialists had come and gone the whole time, each chatting with L and reassuring us as they explained everything that was going to happen. When it was time for her to head to the OR she gave us hugs and kisses and she walked away from us, hair in a cover, love and hope wrapped around her, Cozy Heart Penguin in her arms, and a smile on her face. 

Travis and I went to the waiting room, getting updates along the way. The worst 
was when the deacon called us to let us know that L was on the bypass machine - meaning her heart was no longer beating. Crazy and horrible and amazing and terrifying, if you can imagine.

Surgery went incredibly well and they finished in just under two hours. We were walked up to the PICU (peds intensive care unit) but had to wait for a bit longer than expected to see her because she was having such a hard time coming out of the anesthesia. When the surgeons finally came out to talk to us they explained how happy they were with how the surgery had gone - they were able to use the hole in her heart as a short-cut to thread her veins through so it could finally be attached in the correct place. They used part of her heart sac to plug the rest of it up and ... all's well that ends well. But it's also just craaaaaaazy.

That first day was pretty tough. As she fought to come out of the anesthesia she was in a lot of pain and incredibly confused. At one point she yelled out, "Help me, Daddy!" and it was literally one of the worst moments of our lives because there was nothing we could do to help our baby girl. There was a chest tube to make sure fluid didn't collect around her heart, but it was what caused her the most pain and discomfort. She threw up several times because of it - can you imagine how painful that would be with a broken sternum?! 

But the nurses were rock stars. They took such great care of her and did everything in their means to make her comfortable. The whole cardiology team was just amazing and we were so grateful to be at one of the best children's hospitals in the country - just 20 minutes from our home. 

Over the next few days she napped. Once they removed her chest tube (and the pace maker wires) she started to feel much better. She moved from her bed to the chair, then her bed to the bathroom, then from her bed all the way down to the other end of the floor and then out to the roof-top garden. She rested there, then walked almost the whole way back until the nurse insisted that she ride in a wheelchair the rest of the way. It was twenty-four hours after her open heart surgery! The nurses said it was the longest walk they'd ever seen in a patient at that state in the game. Eventually she regained an appetite. I read aloud to her and we watched the live action Cinderella. Her uncles visited, along with her godmother and grandmother, mormor and grandpa.

I love this picture of me, 9 months pregnant, brushing L's hair for her and putting it up in a bun as she requested. She was so worn out she fell asleep while I was doing it, but it was so good to have something tangible I could do for her. 

Our sleeping beauty.

L, resting in the roof-top garden. She's wearing her super hero shirt, a gift from Trav's co-workers. 

Saturday morning breakfast.


Sunday, Mother's Day, L was given clearance to come home. After the surgery she had to cough a lot, clearing her chest, and her Cozy Heart Penguin - a birthday gift from her Mormor - was her go-to object to hug during the coughing. It was also used to soften the feel of the seat belt against her incision. 

We couldn't believe that just three days after having open heart surgery she could come home! As soon as we arrived at our house the very first thing she asked to do was go outside and sit on the swing. Once again: crazy. 

Early on L had a lot of limitations. She mostly napped that first post-op week, took pain meds, and was sore. Many people gifted her with books and crafty things and so she colored, molded, sketched, created, and read. Since she could not lift anything over 5lbs, be in public, or do anything that might lead to a fall she could not run, dance, skip, do stairs, ride her bike, swing high, use the slide, climb anything, attend school or Mass, and so on. But a friend from church dropped off the hula hoops her daughters used to play with - 20 some years ago! - and L became a master hooper! Thank God - literally - that Chris was moved to bring those hula hoops over because they were *just* what L needed - something physical, something new to master, and something that was allowed by the surgeons. Several times a day she'd walk around our house, hooping as she went. She'd hula hoop for minutes - over 8 minutes straight once - and even do the chicken dance while hooping! 



With special permission from her doctors L was able to attend the last day of school, two weeks post-op. As a family we went to the all school Mass and she got to sit with her class, though she had to wear a face mask and she carried her cough-buddy penguin. As a special treat she made heart-shaped sugar cookies for her classmates, which she and her daddy took to her class after the Mass. She chatted with her friends and was able to thank them for their prayers. 

At this point L is able to swim, slide, swing, run (with shoes - no flip flops!), and do most of her usual activities. She cannot roller skate, ride her bike, climb trees, or play contact sports until November (so that her sternum is not re-broken) but otherwise she is free to live her life. One of the beautiful things about this time is that L has really fallen in love with reading. In the past the only books she really read were the Junie B. Jones series but now she's been plowing through the Lemony Snicket books, has started the Narnia books, and has read The Secret Garden, Anne of Green Gables, and a few others along the way. 

Over and over again I have said that how well L is doing is a testament to the power of prayer and modern medicine. To everyone who sent money or gift cards or presents or prayers: thank you! Our family was so well cared-for during those difficult hours, days, and weeks and we are so grateful. Learning that L had heart issues was terrifying and we were so scared about the surgery. I admit I was angry at God for giving us another hardship to endure. But on this side of it I also have to admit that we had it easy. L had one surgery, it went well, her incision has healed well, and she has a 99.9% chance of going on and living a normal, healthy life - free to do whatever she wishes - once her body is completely healed. So many heart kids have repeated surgeries and they and their families truly are suffering for a long, long time. We had a community of loved ones supporting us. We were blanketed in prayers. Our daughter is healthy and alive. We are so fortunate and honestly, looking back at the tantrums I threw in prayer I am embarrassed. We've had it so easy. May God comfort and restore those who have not. 

And once again I very sincerely want to say Thank You to everyone who has prayed for us, cared for us, and gifted something to us. I am slowly working on sending out Thank You cards and I'm really hoping that in the chaos that was our life we didn't leave any of the gifts off our record log. Please know that we are so grateful - to God and to you. 

Spiritual bouquet embroidered by Jenna from Call Her Happy




14 comments:

  1. Trying not to get all choked up with happy tears as I sit at fencing practice. Thanks for sharing all this Bonnie.

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  2. I'm so glad she is okay and thank you for the update!!!! Hula hoops, who would've thought! You are a brave mama!

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  3. Thank you so much for the update -- wonderful news :)

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  4. This post makes my heart smile. I'm glad your princess is doing so well!!!!!!

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  5. She's beautiful just like her mama - thank you for sharing this Bonnie!

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  6. what a beautiful faith community and school. I imagine this must have been so much with pregnancy too! You are amazing!

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  7. Love you guys! You and your beautiful Lydia are so brave and strong. Hugs to all of you.

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  8. Wow Bonnie this is just awesome...I've been wondering how shes' been doing since the surgery, so good to hear! You go Lydia!

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  9. So grateful to read this! God is so faithful and generous.

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  10. So glad she is doing better, and what a brave little girl! <3

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  11. beautiful! so moving. can't imagine this as a momma - had appendectomy at 8 (small potatoes compared to an open heart!) and my dad has had 3 bypasses - but from a parent's perspective, whole new ball game. you are ALL brave and blessed and beautiful! Praise Him!!!!

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  12. This was amazing! Thank you for sharing, Bonnie. God bless your daughter and all your family. :)

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  13. I'm so pleased it all has gone so well. May she continue to heal and grow strong.

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