Comments on: Missing my son on his birthday today…

By: Olivia Easley

Olivia Easley — Tue, 21 Jul 2009 14:36:22 +0000

Hello — I am so sorry for the loss of your son. I too found your blog when googling TAPVR.

My daughter Veronica died suddenly and unexpectedly on June 18, 2009, from TAPVR at 7 weeks of age. We had no idea she was ill.

I would love to talk/email with Vi Kennedy who commented above, as her daughter’s story sounds nearly identical to Veronica’s.

Would you mind passing along my message to her?

Thank you very much.

By: gratefulmommy

gratefulmommy — Thu, 16 Jul 2009 06:51:12 +0000

Thank you for your comment and kind words on my blog. I am so sorry to hear that your son has TAPVR. I will pray that he recovers fully. What is his name? I know how exhausted you must be. I spent many long days and nights in the PICU….

God bless you. If you ever need to talk or ask me anything about it, please don’t hesitate. I truly don’t mind talking about it.
((hugs))
Lora
http://GratefulMommy.wordpress.com

By: Blue Girl

Blue Girl — Wed, 15 Jul 2009 21:00:10 +0000

Hello. I just typed in TAPVR and your blog came up. My son was born 14 days ago and they discovered his TAPVR withing the first 12 hours and he had open heart surgery. We are learning about this heart defect and i just started blogging about this new journey. He is recovering now. I am literally moved into the PICU at the hospital. I am still trying to learn about this defect and what life will be like.

I am sorry for your loss.

Bless you and your family.

By: Stacey

Stacey — Mon, 09 Feb 2009 01:42:57 +0000

I am so, so sorry for your loss, and also to Vi Kennedy. I will remember your children always.

Like the above commenter, I found your blog while looking up TAPVR on google. My daughter died on December 24, 2008 from complications after surgery for TAPVR- she was only two days old.

By: Vi Kennedy

Vi Kennedy — Thu, 05 Feb 2009 17:15:40 +0000

Hi,
I was doing research on TAPVR and your blog came up. I am sorry about your son.

On January 9, 2009, we lost our precious daughter to a CHD (TAPVR)….Taryn was 29 days old when she passed away. We are trying to make through each day and we are still shocked, scared, and devestated. Our hearts are broken.

Taryn was our first born. She didn’t have any symptoms (no cyanosis, no heart murmur, she was gaining weight). We never noticed any difficulty breathing. Taryn cried one afternoon and made these “wahh wahh” sounds. She did the same thing the week prior, but she stopped after my husband held her and we didn’t think much of it. On this particular day, after she made these sounds, I put her on her changing table and I saw her stop breathing. I freaked out, called 911 and started CPR. After going to the nearest ER and being careflighted to the children’s hospital, we learned there that she had TAPVR, infracardiac.

I am curious about how your son presented, did he make to surgery?

Take care and I will be thinking about our angels in heaven.

By: gratefulmommy

gratefulmommy — Sat, 31 Jan 2009 01:00:37 +0000

Thank you.

By: gratefulmommy

gratefulmommy — Sat, 31 Jan 2009 01:00:19 +0000

Thank you for your thoughtful words.

Trust me, I find myself asking for a few minutes of peace too…I have my 5 year old that never stops talking, moving and making messes. I wouldn’t trade her for the world, but WHEW, it is exhausting! I think all moms feel that way at one time or another….

Anyway, I just wanted to say thank you for your comment. =)

By: Cindy

Cindy — Sun, 25 Jan 2009 20:59:17 +0000

I can’t imagine the loss that you feel. As a mom, I find myself wishing for 10 or even 5 minutes of peace at times. But if it had to be permanent, I’ll take the wild and craziness instead.
I am sorry for your loss and I am giving you a big hug right now.

Love,
Cindy

By: riddlej

riddlej — Wed, 24 Dec 2008 01:05:18 +0000

I am so sorry for your loss.