2012 Annual Appointment

We had Jake’s annual appt on Feb 20th. Dr. Hougen continues to be one of the best doctors we have ever had. There was no need for an EKG, this year, but he did do an echo. He and Jake talked baseball during the proceduire. As a mom, it is so wonderful to see your child having a grown up, intelligent conversation with another adult. I’ve seen so many kids at this age who can barely make eye contact with adults, so it always makes me proud of him. But in this context, it brings tears to my eyes because I am so aware of what a miracle it is that he is even with us today.

Dr. Hougen once again praised the surgeon who did the repair. Last year, we were told that the ASD had close completely. This year, he said that the VSD had also closed. Dr. Teodori had left the holes slightly open at the repair because they were afraid that Jake’s tiny heart could not have handled the pressure of closing them. We have no way of knowing what would have happened if they had closed them completely, but in my heart, I know that it was the right decision. At the time, Dr. Teodori said that they would likely close on their own, but if not, he could live with it. Now, 11 years later, my son no longer has a hole in his heart.

Dr. Hougen explained the echo to Jake, who was very interested in the mixing of the blood that occurs because of the leakage that still exists due to his compromises pulmonary valve. The leakage causes his right heart to have to work a little harder, so monitoring that leak and the condition of the muscle is the main concern at this point. The possibility of replacing his valve is still there. I remember the 13 year old girl that we met at the hospital when Jake was having his repair. She had TOF as well and had her valve replaced the same day as Jake’s repair. We ran into her at the cardiologist’s office a few weeks later and she was doing great. She would be about 24 or 25 now. I often wonder how she is doing and I wish I could tell her how much peace and hope it has given me through the years to have met her. She and her family were truly a gift from God.

I pray that Jake’s story can provide that same kind of hope to parents who are just starting out on this journey. Yes, I would change it if I could…of course I would. But, I am so grateful for the amazing person that he is and the joy that he has brought to the lives of people who know and love him. And I know that our experiences shape who we are….so in that sense I can say that I’m at peace with the way things are.

So our orders were to keep living life with no activity restrictions and to come back in a year. Dr. Hougen and Jake are looking forward to talking about the 2012 baseball season at his appointment next February.

And with that, we are off to Florida to catch a couple of spring training games…just living life as prescribed. And, life is good.

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4 Comments

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4 responses to “2012 Annual Appointment

  1. LIsaman

    Wonderful!

  2. Erica Nielsen

    Hi Stephanie, May I put the link to this story/blog on our face book and twitter? My…he is so handsome! What a beautiful child. Blessings! Erica

  3. Sandra

    I came across your blog as I am trying to do as much research as I can about a child living with tetralogy of fallot. Your story definitely gives me hope for my little blessing. I can’t believe how much your boy had gone through as an infant and I’m so happy that he is now doing so well! Our baby was diagnosed with tetralogy at the 20 week ultrasound. Having had two previous children with completely normal ultrasounds, it was a complete shock and devastating that our baby had a heart defect. I was immediately sent to the genetics department and was counseled that it was very possible that the baby would also have a genetic disorder. we refused an amnio to find out for sure. They said they wanted us to have “options” but for us there was no option. Whatever her condition was, we would not change anything and vowed to do the very best we can for our baby girl. We prayed and prayed for the very best outcome and when she was born, our prayers were answered. The cardiologist did confirm she did have the heart defect, but she was doing very well and was able to go home with me. She is now 7 weeks and you could never tell that she has a heart defect, which makes it even more difficult to hand her over for surgery. They want to do the repair between 4-6 months. I’m hoping and praying it all goes well. Thank you so much for posting your story, as it does give me reassurance that she can live a normal life. May God bless Jake and your family.

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