Wednesday, June 29, 2011

Trevor is Back!

I'm a bit overdue in giving an update, as this journey can be physically and emotionally draining. Since we've been home I just needed some time to relax and hang out with the family. I can't believe it was six weeks ago that Trevor had his third open heart surgery. Even more, I still can't believe he was out of the Critical Intensive Care Unit in one day and home ten days later. He's my fighter! My little guy is so amazing and strong! I hold him close every day, so blessed to have him in our lives.

When we first came home from the hospital we were busy going for appointments to the Surgeon office, Cardiology, and to the lab for blood draws, learning his new medication routine, shopping for fat free & non-fat foods for his minimal fat diet (no more than 20 grams per day), and changing habits, like not lifting him up under the arms for at least six weeks. Each day we were trying to get him outside more and to be more active, to help keep fluids from collecing in his chest (pleural effusions), the very thing that gave him his rocky start right after the surgery. We didn't have to worry about his eating once we were home, as he was constantly hungry, eating every hour to hour an half. Within the first two weeks he had already gained back his lost weight, weighing in at 30 lbs. 10 ozs. A huge accomplishment for Trevor after our years of struggling with his weight gain!

With every appointment, things continue to improve. Praying this trend continues!! We have cut down on the meds, he first came home with 8 different meds, some two to three times a day. Now he is down to 3 meds. At his last couple of Cardiology appointments, awesome news again... xrays look great! Trevor was so excited at his last appointment when his Cardiologist told him we could add in small amounts of chicken to his diet. As soon as we arrived home, chicken was on the table. The couple of ounces of chicken didn't last long as he gobbled it right down, not even giving me a chance to grab my camera to take a picture of his huge smile as he was eating. That was his big news of the day and he had to let everyone know that he could eat chicken again. At his last weekly blood draw, to check on his Coumadin levels for his blood thinner, again great news... his INR levels were Perfect!  It was great to hear that we didn't have to come in for another blood draw for three weeks. Yippee!

Six weeks later... I can now say that Trevor is back to his happy, energetic self!!

Can you believe this video was taken three weeks after open heart surgery?!

Here are some favorite pictures over the last few weeks...

Travis & Trevor walking along Lake Poway

The boys feeding the ducks & geese.

Enjoying the day at the San Diego Fair.

Hanging out at Sea World.

I wanted to share a few things that really touched our hearts during this last surgery. First off, I want to say that I am so grateful & amazed of the outpouring of support, prayers, and love that has been sent Trevor's way, from family, friends, and the heart community. Thank you all from the bottom of our hearts!!
  • We had amazing friends that organized & gave blood donations that were needed for Trevor's surgery. Thank you for saving a life!
  • We had many visitors stop by during his hospital stay, but there was one very special visitor. An adult congenital heart survivor, also with a single ventricle heart, stopped in and visited with us for a couple of hours. She shared her life experiences, feelings, and gave us advice that we were grateful to receive. Thank you for the visit, it meant the world to us!
  • This comment made me such a proud momma that I wanted to share....One of the nurses told me that our son was amazing and if she ever had a child, she hoped he would be just like Trevor. Also, all the nurses commented on how easy going he was. My little heart warrior!
  • A huge 'THANK YOU' to Jenny Lincoln (& her heart warrior Aly Jean) for having the kids at the Central Michigan Congenital Heart Walk make get well cards for heart kiddos undergoing surgery. It put tears in my eyes reading the cards from kids who didn't even know Trevor, but were sending him get well wishes.

  • Thank you for the special get well gifts from his heart warrior friends Colin, Grace, Lindsay & Hailey!

  • Making his hospital stay a little more comfortable, Heartfelt Couture made this awesome gown for Trevor. Thank you!

Trevor has been through so much in his short life, more than most of us will ever go through in our lifetime. I'm amazed when I look at him every day, full of energy and a happiness for life, playing like any other four year old. But knowing that there are no guarantees with his little heart, it saddens me to think that our little boy may not out live his mommy & daddy. I wonder at times where the strength comes from to get through these hard times, but I believe, as it is said, God will not give you more than you can handle. I will never give up hope and will fight along side him for the rest of his life. Along our journey we have met some amazing families with heart kids that are fighting the fight and ones that fought to the very end. These little heart angels & families will always have a special place in our hearts. I pray that one day there will be a cure for all the special heart kiddos and adults, as Congenital Heart Defect Awareness continues to spread. It's encouraging to know that with medical advancements, it has led to significant improvemnents in the life expectancy of single ventricle kids and they are now surviving into adulthood, reaching their 30's and 40's. 

1 in 100 babies are born with a CHD! Give HOPE, Spread AWARENESS!


  1. Awwww... yea! I'm so glad life is back to normal and Trevor is feeling good!! :) :) I'm glad he liked the cards-thanks for posting a picture!
    We can finally take a deep breath now... our kiddos are officially POST FONTAN!!! :) :)

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