The Day We’ve Dreaded Is Finally Here

So Evan’s body is telling us that it’s ready for his VSD to be closed.

I was expecting Evan’s cardiologist to utter these words today, but it didn’t make the news any easier to bear.

We’ve known since Evan was just a week old that he has congenital cardiac defects that will need to be repaired through open heart surgery; yet it’s been easy to ignore the inevitable as he’s defied the odds until now.

Evan at the Cardiologist

Evan getting an EKG at 6 weeks old.

A few weeks ago I took the twins for their 15-month checkup. Evan had only gained a few ounces since his one year checkup, which raised red flags, especially since he eats like a teenage boy. Our pediatrician suggested we try adding more calories to Evan’s food, get him on PediaSure, and make an appointment with the cardiologist to rule out cardiac causes for his slow weight-gain.

At the time, her suggestions seemed over-cautious, especially since he’s hitting all of his milestones and otherwise very healthy. But as the weeks passed, Evan started showing other symptoms. Most noticeably, he’s been waking up crying for food one or two times every night, and he’s now taking two 2-3 hour naps daily at a time when most toddlers are transitioning to one afternoon nap.

This afternoon the two of us headed down to Boston Children’s Hospital. We had a long wait, so Evan amused himself (and everyone in the waiting room) by watching the trains, drawing, and trying to walk out of the cardiology department.

Evan at the Cardiologist

It’s always a bit surreal sitting in the waiting room with the other parents. Our children are all connected as heart kids… yet we all have such different experiences. The woman next to me was with her 22-year-old son. We chatted about the holidays, and how many kids we have, but all I really wanted to ask her was, “What’s it like? How do you get through each visit worrying there’s been a change for the worse?” I guess I already knew the answer… you just do. Because you have to…

After a somewhat painful hour of waiting, we were called in for Evan’s EKG. Unlike previous EKGs, Evan did not lie still – he was hangry. The nurse managed to distract him long enough to get a decent reading, and then we hung out in the room eating snacks until his cardiologist came to check on him.

Evan at the Cardiologist

Evan trying to recover from his EKG with some chocolate milk.

Evan at the Cardiologist

What? Doesn’t everyone walk around the doctor’s office in a diaper and shoes?

After a brief chat, we were sent on our way for an echocardiogram. Evan insisted in walking a lap around the cardiac unit before going into the exam room. Unfortunately, despite trying to distract him with cartoons and songs, he wiggled and cried in my arms as the tech tried to get a clear view of his heart. A few minutes after we were done, his cardiologist returned with the news… it’s time for Evan’s surgery.

During his open heart procedure, the surgeon will close his VSD (hole in his heart) and remove the extra band of muscle in his right ventricle. The entire procedure will take about four hours from the time they wheel him away from us until he’s out of the recovery room. This will be followed by a week in the hospital, and six weeks of recovery at home.

Next week I am taking Evan back to his pediatrician for blood work. His cardiologist wants to rule out any other possible causes for the lack of weight gain, and to rule out DiGeorge Syndrome. (Evan actually has a third cardiac defect – a right aortic arch. Rather than curving to the left, Evan’s aortic arch curves right. It’s causing him no problems, and seems to be an anomaly, but because it can be a symptom of DiGeorge Syndrome, the doctors want to do a bit more testing.)

In two weeks we will go for his pre-op appointment, during which he’ll have a sedated echocardiogram. Depending on the results, he will have surgery the next day. Because some of Evan’s symptoms are not consistent with heart failure, his cardiology fellow is holding out hope that something else is keeping him from gaining more weight. We’re praying she’s right, but in the meantime trying to wrap around our heads around the fact that the day we’ve dreaded is finally here.

About Jen

Outdoor adventurer and traveler. Writer, Photographer & Communications Professor. Wife. Mom of twins plus one. Tubbs Snowshoes Ambassador. Blogger at gayfamilytrips.com.

, , , ,

30 Responses to The Day We’ve Dreaded Is Finally Here

  1. Jen December 13, 2014 at 12:28 am #

    Oh Jen I’m so sorry to hear this! I’ll be thinking of you all and hoping for good news. Evan is simply adorable, love those pictures. Jen

    • Jen December 28, 2014 at 11:11 pm #

      Thanks Jen :) Hoping for the best tomorrow at his pre-op.

  2. Mel A December 13, 2014 at 7:52 am #

    I am so so sorry you all are going through this, sending tons of love and well wishes , and you all are in my prayers ❤️❤️❤️

    • Jen December 28, 2014 at 11:11 pm #

      Thank you Mel :)

  3. Leah December 13, 2014 at 12:40 pm #

    You all are in my prayers!!!

    • Jen December 28, 2014 at 11:12 pm #

      Thank you :)

  4. Kathy Dalton December 13, 2014 at 1:10 pm #

    Oh honey, I’m so sad to hear this news. What brave family you are. You are in our thoughts and prayers. Wish you lived closer and I’d bring you dinner.

    • Jen December 28, 2014 at 11:12 pm #

      Aww thanks Kathy. Someday we will do dinner under awesome adventurous circumstances!

  5. Anastasia Rasulova December 13, 2014 at 1:19 pm #

    oh no, such a sweet little guy! Sending hugs to you and him. It’s all going to be ok! We are also going to boston children’s hospital and I trust their specialist, they will do their best to help you i’m sure. Hang in there!

    • Jen December 28, 2014 at 11:12 pm #

      Thank you so much :)

  6. Mommy Hiker December 13, 2014 at 3:36 pm #

    We are sending you guys ALL of our strength and healing love!!!

    • Jen December 28, 2014 at 11:13 pm #

      Thanks Jennifer :)

  7. Allison December 13, 2014 at 6:44 pm #

    How challenging it must be for you to be brave for your little boy. I know a few “heart babies” and though they have all been through difficult times, the children are all thriving now (after having surgeries). Best to you all.

    • Jen December 28, 2014 at 11:11 pm #

      Thanks Allison – we’re are hoping our little heart baby will rock this. I know he can!

  8. Marianne Merritt December 14, 2014 at 9:54 am #

    Jen,
    This broke my heart. But you and Kendra are strong women and full of such incredible love. Evan will surely thrive on that, as will you. You are in the best hands, God’s, and also the doctors at Children’s. Praying for you all in spades. Much love,

    • Jen December 28, 2014 at 11:10 pm #

      Thank you Marianne.

  9. wandering educators December 14, 2014 at 2:33 pm #

    Much love. you’re in our thoughts.

    • Jen December 28, 2014 at 11:09 pm #

      Thank you :)

  10. Linda December 14, 2014 at 8:36 pm #

    I’m so sorry to hear this – I can’t even imagine what it’d be like to be in your shoes right now. I’m sending positive thoughts your way.

    • Jen December 28, 2014 at 11:10 pm #

      Thank you Linda – we appreciate all the positive energy we can get!

  11. Laurie Gentry December 16, 2014 at 9:23 pm #

    It is easy to see that you are surrounded by the love and positive energy of all of your friends and family. Evan will not remember any of this you know..his loving moms will and maybe his big sister but trust the docs and surgeons and “this too shall pass.” We wish you peace in the next weeks and the happiness of Christmas will prevail. We love you guys, Ellie and Laurie

    • Jen December 28, 2014 at 11:09 pm #

      Thank you!!! My love to you and Ellie!

  12. Rob Gentry December 17, 2014 at 6:18 pm #

    Putting you all on the church’s prayer list.

    • Jen December 28, 2014 at 11:09 pm #

      Thanks Rob :)

  13. Betty Jane Crandall December 21, 2014 at 8:21 pm #

    All you and Kendra and Jane and Boris are going through breaks my heart. What is so encouraging is that you all are strong and Evan is in a wonderful place to be treated. You are in my prayers…

    • Jen December 28, 2014 at 11:08 pm #

      Thank you Betty Jane!!!

Trackbacks/Pingbacks

  1. When LGBT Microaggressions Add Up - Adventurous MomsAdventurous Moms - December 23, 2014

    […] I got a call from the nurse practitioner that will be working with us when Evan has his sedated echo next week. It was a typical pre-op phone call, mostly to rule out any risks and confirm […]

  2. From Surgery to Stool Samples - Adventurous MomsAdventurous Moms - December 29, 2014

    […] surgical fellow who described in horrifying detail exactly what they will do during Evan’s open heart surgery to repair his cardiac defects. Being the ever-curious person that I am, I’d done a bit of […]

  3. Goodbye 2014, Hello 2015! - Adventurous MomsAdventurous Moms - December 31, 2014

    […] end of 2014 has been a roller coaster ride as we’ve dealt with Evan’s cardiac defects. Christmas was a whirlwind as we prepped for his open heart surgery which was scheduled for […]

  4. Skirting the Line: Evan's Heart - Adventurous MomsAdventurous Moms - June 13, 2017

    […] last week. Not much has changed since his last one – at least, not physically. He still has three cardiac defects – a right aortic arch, double-chambered right ventricle, and most pressing, a ventricular […]

Leave a Reply

UA-28250280-1
%d bloggers like this: