Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 04-16-2009, 08:41 AM   #1
batsilvermoon's Avatar
batsilvermoon
Registered Users
Formerly:batmomof3
seller
 
Join Date: Jan 2009
Location: pa
Posts: 221
ANyone out their have lil one with congenital heart disease

My lil one was dignosed at 20 weeks inutero.with transposition of the great arteries,ventrical setal defect,and coarctation. He was born at 36 weeks and had his 1st of 3 open heart surgeries at 10 days old 1st went well but he was at chop(childrens hospital of Philidelphia) for 5 1/2 weeks. now we are going for testing next week to prepare for his 2nd on May 18th. They told us he could be delayed ( witch we are facing now) and that he could end up with mental retardation, and as for life expectancy they told us age 5 (since his condition is rare and the corrective operation has only been done in the last 5 yrs) He has physical therapy once a week and we practacly live at the pediatricion and the cardiologist.. Is their anyone out their with simuliar disability.

Advertisement

__________________
mom of 5 Samantha 14 , Colby 11 , Jaxon 4( my lil heart miracle) Gracie 2 and Tessie born 3/15/13 at 35 and 6 4pounds 15 oz
batsilvermoon is offline   Reply With Quote
Old 04-19-2009, 07:18 PM   #2
kal22
Registered Users
 
Join Date: Feb 2007
Posts: 56
My Mood:
Re: ANyone out their have lil one with congenital heart disease

Hi,

I know nothing about congenital heart defects but I couldn't read your post and not send healing thoughts your way. CHOP is one of the best (my son spent time there)...I just hope and pray that the corrective surgery is successful...just because it's new doesn't mean he won't come through it with more hopeful prospects...please hold on to that thought. As for the rest...the Drs have to give you the worst case scenario....I am hoping for a miracle for your little one. Hope someone else will jump in here that knows something about hearts. for you and your son.
kal22 is offline   Reply With Quote
Old 04-24-2009, 02:20 PM   #3
batsilvermoon's Avatar
batsilvermoon
Registered Users
Formerly:batmomof3
seller
 
Join Date: Jan 2009
Location: pa
Posts: 221
Re: ANyone out their have lil one with congenital heart disease

Thank you we actually just got back from testing they did a heart cath and it went well they may be able to do a diffrent surgery that will give him 2 working ventricles instead of 1 of corse their are down falls to it as well but we are hopfull and thankfull for him every moment. I am trying to start something for better awarness and support I have none where I live. Prenatal testing is soso soso important Jaxon would have not made it if they wouldnt have found it in ultrasound. The ultrasound tech's attention to detail saved my sons life! Chop is an experience I wish others could see
__________________
mom of 5 Samantha 14 , Colby 11 , Jaxon 4( my lil heart miracle) Gracie 2 and Tessie born 3/15/13 at 35 and 6 4pounds 15 oz
batsilvermoon is offline   Reply With Quote
Old 04-25-2009, 10:52 PM   #4
kal22
Registered Users
 
Join Date: Feb 2007
Posts: 56
My Mood:
Re: ANyone out their have lil one with congenital heart disease

Quote:
Originally Posted by batmomof3 View Post
Thank you we actually just got back from testing they did a heart cath and it went well they may be able to do a diffrent surgery that will give him 2 working ventricles instead of 1 of corse their are down falls to it as well but we are hopfull and thankfull for him every moment. I am trying to start something for better awarness and support I have none where I live. Prenatal testing is soso soso important Jaxon would have not made it if they wouldnt have found it in ultrasound. The ultrasound tech's attention to detail saved my sons life! Chop is an experience I wish others could see
I am so happy that things are going well so far but I know that the hardest part is that which you can't see...not knowing what will come next. You have the best outlook...one moment at a time. Jaxon is so so lucky to have a mom like you!! I agree w/you about CHOP...they figured out what was wrong w/my son when no one else could. An amazing hospital! I'll be keeping you and Jaxon in my thoughts and praying that the surgery is successful. Please keep us updated.
kal22 is offline   Reply With Quote
Old 05-07-2009, 01:21 AM   #5
iheartg&a's Avatar
iheartg&a
Registered Users
 
Join Date: Jan 2009
Posts: 32
My Mood:
Re: ANyone out their have lil one with congenital heart disease

My son was born with TGA and had his OHS at 5 days old. As of right now, he shouldn't need any other surgeries. He has some other issues with a kidney, vertabrae and limb which we continue to monitor.

Incidentally, his CHD was not picked up in the level 2 u/s so we were surprised at birth and lucky the doctors acted fast.

I hope they can find an alternate route in helping your DS. I am constantly amazed at what doctors can do. Heart Hugs!

Drea
iheartg&a is offline   Reply With Quote
Old 07-19-2009, 02:11 PM   #6
sterling
Registered Users
 
Join Date: May 2007
Posts: 34
Re: ANyone out their have lil one with congenital heart disease

Best wishes to your son. CHOP is certainly the best for children's cardiology. Both my kids have congenital heart block and have undergone surgery to implant pacemakers. My son was born at 33 weeks and had 3 surgeries in the first year resulting (together with preemie issues) in some developmental delays. I am happy to say that at 3 (and even with one additional surgery), he is more than caught up developmentally and is thriving. I hope you will celebrate the same victories with your little one.
sterling is offline   Reply With Quote
Old 07-19-2009, 02:19 PM   #7
Judesmommy's Avatar
Judesmommy
Registered Users
seller
 
Join Date: Dec 2008
Location: Kamloops BC Canada
Posts: 1,952
My Mood:
Re: ANyone out their have lil one with congenital heart disease

Although my son did not have heart issues, he did require surgery at 6 weeks old for another much more minor issue, but reading your post made me cry, I remember how hard it was to give him to the nurse for surgery. I really hope your son thrives I am sure he is very much loved and knows that as well! Best of luck with everything he needs to go through I know it's tough but these little guys are tough too!
__________________
Amanda - Happily married to my favorite geek (10/07/06), CD mama to Jude (11/19/08) and Jackson waterbirth @ home 05/29/10
Judesmommy is offline   Reply With Quote
Old 07-22-2009, 06:46 AM   #8
PamB4Bears
Registered Users
 
Join Date: May 2009
Posts: 204
My Mood:
Re: ANyone out their have lil one with congenital heart disease

Hey mama!!!

My son was born with numerous birth defects heart, kidneys, cranialfacial, lungs, and a few others. ANYWAY. . .his first surgery was when he was 2 days old. My son was given a time frame to live as well. 3 years they said. . .he is now 11. BELIEVE and KEEP FIGHTING. The surgeon that created one of the devices they had to place in his heart actually flew down from Boston to perform the surgery. We lost my son that day, but he came back to us and has been a fighter ever since. OMG. . .I feel your pain. We lived at the hospital for the first 12 months of his life. Do NOT believe EVERYTHING the doctors say. They do not hold the future for this young man, at all. Yes, he may be delayed, but if that is all you have to worry about AWESOME. For the first 5 years I had to give lethal doses of meds to my son for his heart, the doctor scared me so bad I would shake and cry every single time I had to give him his meds. I guess what I am trying to say and please forgive me if I am not making sense because I have been up the last two days with him being seriously ill so I feel scattered brain right now. . .what I am trying to say, you HAVE TO TRUST YOUR TEAM of doctors. You are not working for them, they are working for you. If you are not 100% on what they are telling you, get another opinion. that is how I found the most wonderful team of doctors. Believe in yourself, Believe in your son and Believe in the power of prayer and love. . .My heart goes out to you because while I was reading your post, I began crying remembering those times. HAVE FAITH!!!!! I did not have a support group AT ALL. . .I think that is the best thing. . .to have someone to vent and cry too so you can face the next day. . .BELIEVE, HOPE, FAITH, LOVE,COURAGE and FIGHT. . .key words to this journey God love you and you and your son will be in my prayers
PamB4Bears is offline   Reply With Quote
Old 07-22-2009, 10:48 AM   #9
thegreatone
Registered Users
 
Join Date: Jul 2008
Posts: 594
My Mood:
Re: ANyone out their have lil one with congenital heart disease

My son did have heart poblems at one time that steamed from something else. I just wanted to post and let you know to never give up and we are here for you. After my emergancy c-section, my son was not sapposed to live long enough for me to wake up and see him, he will be turning 4 soon! He has had 20 opperations/procedures and after each one, we were told his outlook wasnt good. For the past year and a half, we have had no major illness and they are saying he is just like any other kid. (except some sever devlopmental delays...but he is here and thats all that matters)
thegreatone is offline   Reply With Quote
Old 07-22-2009, 10:51 AM   #10
Mommyplunder's Avatar
Mommyplunder
Registered Users
seller
 
Join Date: Jun 2009
Location: middle of nowhere Indiana
Posts: 2,247
My Mood:
Re: ANyone out their have lil one with congenital heart disease

Just wanted to give you a . I know haveing a LO that needs so much help when they're so little is rough but it gets better.
Mommyplunder is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.