Blog4CHD - Latest Comments

Re: A letter to my son

Yadira Carbajal Peña — Mon, 21 Feb 2011 18:18:12 -0000

Thank you so much for sharing this, very beautiful.

God Bless you.

Re: http://blog4chd.com/2010/02/18/643/

heat pump thermostat — Fri, 18 Feb 2011 07:08:27 -0000

I am married with 2 beautiful girls, Rachel (10yrs, heart healthy) and Naomi (18 months, with CHD's). We live in the most beautiful city in ..

Re: Crapshoot

Corinneellison — Mon, 17 Jan 2011 18:11:51 -0000

Have just found your site. Thanks so much for sharing all of this information. I was offered the Maze procedure at the same time as open heart surgery to close an ASD. I declined, for many reasons but also as you say, it sounds barbaric! Making these kind of decisions is exceptionally difficult. Best wishes to you and your famil.y

Re: Rastelli Procedure: At A Glance

Noahzeldafan — Sun, 09 Jan 2011 21:27:26 -0000

My son will be having the Rastelli procedure in September. He is an amazing little boy!

Re: 19 mo. old with Complex Congenital Heart Disease & Heart Failure

Rex Harrison — Thu, 06 Jan 2011 10:36:00 -0000

Good Morning John & Dee, my name is Rex Harrison and I am the manager of US Auto Sales in Athens. Sonia has made me aware of little Lex's condition and I must tell you how my heart aches on his and your behalf. May God be with you and yours during this difficult time. You are in my thoughts and prayers. Godspeed. Rex

Re: A letter to Michael-Evans

HeartBabyHome — Mon, 06 Dec 2010 17:17:28 -0000

I cried and cried reading your story. My youngest was born with a complex CHD. So, I've experienced just enough to know how much it hurts. Thank you for sharing your story - I hope you find peace. I found you from Stef's "every heart has a story" blog hop.
I'll send you an email - I'd like to draw Michael-Evan's heart for you.
http://www.heartbabyhome.co...

Re: What not to say to the Parent of a Sick Child

Elissa Niddery Balfour — Thu, 02 Dec 2010 14:37:19 -0000

me too :)

Our babies are all warriors with fabulous stories, but mommy pain will never go away - and it is hard to explain that to people who haven't been through it.

Re: Pampers Brand Discriminates Against a CHD Child?

Elissa Niddery Balfour — Thu, 02 Dec 2010 14:32:04 -0000

I changed from Pampers many months ago because a 'new' brand they put out actually burning the rump of my CHD baby. He had a blistery red butt for two weeks after I changed the diaper brand. I love huggies :) And after reading this I am so glad that I did, I am happy to know my money is being spent elsewhere. Someone should find huggies and let them in on this, maybe they can benefit by being proactive with our community, all the while helping our little CHD'ers :)

Re: RIP Funky Heart

Naomi — Mon, 29 Nov 2010 17:53:32 -0000

Everyone on facebook is talking :( I'm so sad :(

Re: RIP Funky Heart

Jessica L — Mon, 29 Nov 2010 17:32:52 -0000

OMG really!? Where did you see that? I am a follower of his blog and could find nothing. What happened?

Re: Raising the Bar on Heart Care

Josie Rae09 — Thu, 18 Nov 2010 22:13:24 -0000

This kind of goes along with our problem. When my daughter needed the ballooning 2 months after her surgery we didn't know that there was anything going on other than she was acting a little different. No one told us anything to look for no knowing something like this would happen. I feel if we would have had a pulse ox then we would have known to take her in. She came home on oxygen but now she is off and doing great so the doctor wanted it out of the home which was fine by me but when they came to pick it up they had to take the pulse ox with them. I guess our insurance wont let us keep it unless there is oxygen in the home. Knowing that she is going to have to have it done again it is pretty much waiting for it to happen. So what do we do now?! I have been looking into buying one and have found a few that dont cost that much but she is so young and small I dont know if a finger one will work on her. Im so lost.

Re: My little fighter

Lilsophie.wordpress.com — Wed, 03 Nov 2010 00:19:57 -0000

Awesome, awesome, awesome! Thank you for sharing this and reminding us how big God is.

Re: Tetralogy of Fallot: Compatible with Life?

Michelle — Thu, 28 Oct 2010 01:11:27 -0000

Thanks for sharing the story of your beautiful and amazing daughter! I very much agree with you. It saddens me to think what might have been for that child you mentioned. Thanks for sharing.

Re: Effective Support Systems

Dawn Bent — Tue, 28 Sep 2010 21:39:07 -0000

beautifully well put Lisa. I get lots of jokes about how I'm always washing my kids hands and sanitizing things. I will steer them in the direction of this. Thanks so much for writing this entry.

Re: Tetralogy of Fallot: Compatible with Life?

Guest — Sat, 18 Sep 2010 20:12:53 -0000

Trisomy 21 IS down's. Maybe you meant trisomy 18 or 13?

Re: Tetralogy of Fallot: Compatible with Life?

Nicole Skurjunis — Mon, 06 Sep 2010 08:31:58 -0000

Beautiful story!! Jake has ToF and he is DEFINITELY COMPATIBLE WITH LIFE!!

Re: A letter to Michael-Evans

Carolinacarters — Mon, 23 Aug 2010 21:39:36 -0000

Wow, what beautiful story. I've been crying since about half way through it, my heart aching for your heartache. I'm so glad that you've truly found the love of Jesus through your suffering, and that you've been able to share that love with others.

Many prayers for your continued healing and strength.

Shannon, heart mom to Derrick
www.carolinacarters.com

Re: Shooting our wounded

Teri Sweet — Sun, 22 Aug 2010 14:24:22 -0000

Lisa, thank you so much for putting words to what I've been feeling the past few weeks. As a heart warrior and stroke survivor, it's painful to see heart parents attacking each other. We should all be taking that anger and turn it into energy to only be used in bringing awareness to those around us.
Hope for all,
Teri Benson

Re: A letter to my son

Ami — Sat, 21 Aug 2010 23:35:15 -0000

that tugs at the heart...beautiful..

Re: Tetralogy of Fallot and Scoliosis: 1 in 10,000

Ami — Sat, 21 Aug 2010 23:22:48 -0000

Thank you for bringing much needed awareness to this subject! I have been trying to do so on FB as my HH daughter was diagnosed with severe progressive scoliosis just a few months ago. She is 3 years old, it took over a year of raising concerns for the doctors to figure what was going on. I wanted to add there was one type of scoliosis not in your blog post, and that is the kind my daughter has, called progressive idiopathic scoliosis. It is severe, hard to treat, there is no known cause and can occur at any age from infant to teenager, it accounts for less than 10% of scoliosis cases. My son, born with TGA/VSD/ASD also has scoliosis, he has a 13 degree C-Curve and is 2 years old. We are watching him and considering bracing soon. My daughter Abby has a double S-Curve with a 45 upper, 35 lower and a 21 degree rotation. She is currently being casted at Shriner's in Philadelphia in the hopes we can achieve some correction before she is too old. As you said there is an increase in scoliosis with kids with CHD's...about 30%, and about 50% of those kids will need surgery for correction, that's what the doctor at Shriner's told me. It is sad to think that the doctors know this but do not screen our kids for it. We are hoping to avoid fusion with Abby and try out VEPTR..are you a member of CAST, the awesome support group for parents with kids with scoliosis? There are a few heart parents on this group...you are not alone and they can help when it comes time for your daughter's surgery. Once again thanks for bringing much needed attention to this overlooked aspect of CHD's!

Re: Shooting our wounded

Nevhyde — Thu, 19 Aug 2010 23:36:57 -0000

Hi Lisa, i was interested in the amount of times the word "fight" was used in your blog and our children do have a major fight whether it be from an asd close through to hlhs its all life threatning. From what i've observed a lot of parents seem to think its about them, a certain level of narcissism hidden just underneath the surface fasaded as support. They fight to give the support but if they don't receive it when they think they should regardless of whats going on in other peoples worlds they are incensed. Its not about us, it never was, what we go through as parents is horrific but compared to our children, irrellivant and as parents in our situation a problem shared is sometimes a problem doubled not halved. It is stressful, life impacting, soul crushing watching your child go through it all but if we want the best for our kids in the future we do have to stick to the positives and that is trying to save lives. Support groups are a great medium for letting everyone know how their children are progressing, asking for prayers during difficult times and acquiring information that normal healthy children don't need. I certainly don't disagree with anything you've written, more so, just adding my own personal observations. If you are looking for more from the community you are making it about you. Raising awareness will come from our childrens stories, not ours and if you can't be part of the solution quit being part of the problem. Thank you for writing this Lisa.

Re: Shooting our wounded

Nikki — Thu, 19 Aug 2010 16:49:15 -0000

I think another thing to remember is that we are ALL trying to survive our battles. We say things that may sound insensitive to others, not intending to hurt them, then, in their offended and hurt state, they reply back hastily and it gets heated from there. I don't think anyone maliciously thinks "Im going to attack a grieving mother today" but we all need to realize emotions are so high for all of us and we are in survival mode.

Re: Shooting our wounded

Elmarshal04 — Thu, 19 Aug 2010 16:09:48 -0000

LIsa - all I can say is WELL SAID. Thank you for speaking the words that have been in many of our hearts and on our tongues. I, too, live in fear of losing my child EVERY MINUTE OF EVERY DAY. I HAVE planned her funeral once, the night she was born and we were told she would not live through the night.

I give my all and fight hard to support ALL heart families, to spread awareness and education, to advocate for more research, awareness and support. I get up in the morning doing this and go to sleep at night trying to figure out more ways to do it, starting again the next morning. I fight for MY child and ALL heart kids. I'm so sick at heart that we cannot work together. No one individual or organization is better than another. We HAVE to, NEED to work TOGETHER in order to accomplish what we MUST accomplish NOW, not later. Thank you for speaking your heart and mine.

Erin Ayscue

Re: Shooting our wounded

kristi Pena — Thu, 19 Aug 2010 15:50:08 -0000

I know we can overcome this as a community! We are too strong and too many things are hapening to crumble now! Please everyone let's suppot each other, no matter where our journey may be in the chd world, we all have that common denominator, regardless of any other difference. Love to you all

Re: Shooting our wounded

Kristi pena — Thu, 19 Aug 2010 15:48:13 -0000

Wonderfully said. I feel the exact same way. Thanks for posting :-)