May 5, 2017

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.

42 comments:

  1. Oh, wow! I will pray for a very successful surgery and for your mama's heart. I don't think there is anything harder than parents enduring worry for one of their kids! 🙏🏻🙏🏻🙏🏻

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  2. Oh Bonnie! I will be praying for all of you!

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  3. Bonnie!!! I wish I could hug you! Oh, I'm so sorry you're all going through this. She and you all will most definitely be in my prayers. God is right there with you, I know it. <3 <3 <3

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  4. Oh Bonnie! How scary! You will all be in our prayers.

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  5. You know you have my prayers. May the Divine Healer keep Lydia safe and healthy while
    He guides the hands of the physician. And may Our Dear Lord wrap his arms around all of you and keep you safe and strong.

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  6. I will absolutely pray for you and Travis and your sweet baby girl. Thank you for sharing this. You should email Father Nathan if you have not already. He is a wonderful priest (in my diocese...yes I know how lucky I am) and he belongs to a fraternity of very holy and wonderful priests. I am certain they would pray for you. If you need contact info, I can find it.

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  7. OH yes, plenty of prayers headed your way.

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  8. I am going on Silent Retreat this weekend and I will be offering lots of prayers for you all.

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  9. It sounds like Lydia is in very good hands all around. I'm praying for you and your beautiful baby girl.

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  10. Dear Bonnie, I am praying for Lydia, and for you and your whole family. I'm marking my calendar to pray extra on the 11th! Love, Ginny

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  11. Bonnie, I will add your sweet girl and you all to my prayers. I'm so glad they could get her in so quickly.

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  12. Bonnie, I will add your sweet girl and you all to my prayers. I'm so glad they could get her in so quickly.

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  13. Oh Bonnie! Praying for you guys and for L especially. You mentioned it briefly on instastories a while ago but it was right after my baby was born so I was starting to think I dreamed it. I'm so sorry that's not the case. :(

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  14. Bonnie we will pray a rosary and a divine mercy chaplet on the 11th while she's in surgery. I'm asking a couple priest friends to offer masses for her too. Jesus, we trust in you!!

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  15. Oh Bonnie, I'm so sorry you're facing this. I will be praying for you. My son Steven had the same surgery with an almost identical diagnosis: large ASD the size of a dime (17mm!) in a difficult location, with pulmonary vein anomoly. He had surgery at age 3 and is now perfectly healthy at age 9! I know the surgery is so scary, and I will pray that it all goes very smoothly. Here's my blog post about Steven's surgery if you think it might help:
    http://blairandsteven.blogspot.com/2011/12/stevens-asd-open-heart-surgery-story.html
    Let me know if you have any questions or just need encouragement or advice from someone who's been there (blairandstevenATyahoo). Blessings and prayers <3

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  16. Oh Bonnie, I am so so sorry. Praying for you all and for sweet Lydia's healing. ❤

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  17. Bonnie, I'm praying for Lydia, and for all of you.

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  18. Lots of love and prayers for Lydia!!! My dad has had open heart surgery thrice in his/my lifetime, at ages of 34, 40 & 47 - only recently did I realize how young he was when it all started! (I was 4, 10 & 17). On the feast of the Sacred Heart three years ago he had a Cardiac Cath to see if he needed it again - had been having pains - we found out that through God's healing hand + my dad's diligent exercise/diet/medicinal regiments, lots of collateral arteries had grown and allowed bloodflow when a stent failed - Praises!!! Anyway, heart issues are dear to ours (ha!) and our whole family has benefitted from the awesome developments in cardiology over the last many decades. Please tell L some cardiac groupies in NY are cheering her on and praying for her! (And totally her amazing brave parents. them especially. Sending you lots of Mama Memoraries!)

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  19. Will be praying for Lydia and for all of you!

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  20. Oh Bonnie, I am so sorry you are all going through this, my heart aches for you, I cannot imagine how you are feeling as your sweet little girl's mother. So so many prayers for you and sweet L!

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  21. Oh Bonnie, my heart goes out to all of you! I'll keep L and the rest of your family in prayer, especially on the 11th.

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  22. Have been and will be praying for you all, especially sweet Lydia! <3

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  23. So many prayers for L and your entire family!!! <3

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  24. Bonnie, I've been a faithful reader since L was a baby. I've watched her grow up. I will be praying for your sweet girl.

    Jordan

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  25. We will be praying for all of you.

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  26. I'm so sorry; I will pray for you and your family as hard as I can. I know how scary it is -- my oldest had heart surgery just a few months after he was born.

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  27. I'm adding her to Our Lady of Fatima novena. I love seeing the faith of your family throughout this story.

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  28. I'm sure you already know this, but this is Fulton Sheen's birthday week. Certainly he will be interceding for your daughter and your entire family throughout this week!

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  29. Bonnie, I can't imagine. Your poor, sweet girl. This brought tears BUT, God has her in his hand and he will see her and the whole family through. Many prayers and lifting her up!! :)

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  30. Please know of our heart-felt and constant prayers for L and your entire family - for healing and peace. Fulton Sheen, pray for us!!

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  31. Do you have a Go Fund Me or Pay Pal account set up? This can't be cheap! Prayers sent your way.

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  32. My daughter will be having surgery scheduled soon to close an ASD as well (she's almost 3). Big hugs and prayers to your family!! Please know that you are not alone! CHD affects approximately 1 in 100 babies 😞

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  33. My daughter will be having surgery scheduled soon to close an ASD as well (she's almost 3). Big hugs and prayers to your family!! Please know that you are not alone! CHD affects approximately 1 in 100 babies 😞

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  34. Hi,
    I will be praying for you and your daughter.

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  35. Wow! What an overwhelming situation! I am praying for your family!

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  36. I posted this also on Hallie Lord's facebook (she mentioned your blog, which is how I got here), but I wanted to make sure you see it.

    My mother had an ASD and had pediatric open heart surgery for it - the same thing you mentioned, with the oxygenated and nonoxygenated blood mixing and some staying in the heart -
    back in the dark ages of medicine (UCLA, 1961... she was three and a half). She's since led a quite full and active life and wasn't even medicated until just a few years ago. They did tell her not to have children, due to the stress (of pregnancy and delivery, not afterward!), and she ended up having all us kids by c-section, but... yeah. Most people didn't even know, and growing up, she was the leader of my sister's very outdoorsy girl scout troop, etcetera. For many years, she participated in the Heart Association's fundraiser walk (actually how my parents met; when she was a freshman in high school, she asked a parish/school friend who was a junior to sponsor her, and he didn't have any money but introduced her to several friends who had jobs; my dad was one of those friends) and refused to do the (shorter) 'survivor's course', preferring to do the longer course instead... but she wore the survivor hat and people were amazed that a survivor was on the regular course until they asked and found out that hers was a birth defect and not heart disease.

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  37. May God be generous with his grace and mercy! Venerable Fulton Sheen, be with this family as they overcome this challenge that God has lain before them, we pray to the Lord. Lord, hear our prayer. As we approach the 100th anniversary of Mary's appearance at Fatima to the three shepherd children, I pray that Lydia's life may be as long as Sr. Lucia's! May Our Blessed Mother wrap a mantle of protection around your daughter's heart and chest and may Sts. Jacinta and Francisco heal her from the inside out, we pray to the Lord. Lord, hear our prayer. May Lydia's life be long and courageous and filled with unexpected grace and happiness, we pray to the Lord. Lord, hear our prayer! Dear Lord, release them all from this earthly purgatory, we pray to the Lord. Lord, hear our prayer! Amen.

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  38. Praying and holding your family in my heart today.

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  39. I know you have a lot going on, but if you remember the date of the homily you heard that inspired you. Can I subscribe to his homilies? My niece is recovering from a TBI and just had a baby in the middle of it. We've been praying for her healing, but becoming overwhelmed that our prayers aren't being answered as of now. It's been 7 1/2 months and now her first baby is here and her absence is mind blowing. ANy inspiration would be so helpful.

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  40. I just read your devotion at BIS today, and it gave me goosebumps, as we just went through open heart surgery with our now 5-month-old. I could relate so well to your fear, your fervent prayers, and your submission to everyone's help! Our baby girl, Zelie, was born with a pulmonary valve defect. Thankfully, her surgery went very well and she is doing great! We're hoping she won't need a total valve replacement until her teen years, when it can hopefully be done via catheter. Thank you for sharing your story--it touched my heart to feel that connection with another mom! God bless you and your family!

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