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kathleeng
Member since 5/05 3775 total posts
Name:
Kathleen
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Please pray for our baby!!!!!! UPDATED 5/16
Unfortunately, we received some rather devastating news at our Level II. Long story short, the baby was diagnosed with something called Hypoplastic Left Heart Syndrome. It basically means the left side of his heart is functioning at little capacity. It is shrunken and did not develop properly.
What does this mean? We do not yet know the severity of our particular condition but there can be various outcomes. The worst being that the pregancy will not be able to contiune. Best case scenario, and depending on the specific diagnosis, the baby will be put through a three-stage surgery process within the first 18 months of his life. There is no guarantees that he will make it through any one of them. There are some children that make it and go on to be happy children. Whatever the case may be, he will most likely be in and out of hospitals for the rest of his life.
It has only been approx 20 years since they started doing the three stage procedure. Before then, there was no survival rate. Because of this, long-term survival is unknown.
All we are asking for now is thoughts and prayers!!!!! Please!!!!!! We are hoping the hospital made a terrible mistake and we can have better news next week. Our own hearts are torn apart and please pray for a miracle!!!!
Much love to everybody!!!!!
And I will try to keep everyone updated as I do not know how often I will be on anymore.
5/3 Update:
We have an appt scheduled this Friday with specialists at Columbia Presbyterian. They will be doing another ultrasound, genetic counseling and another fetal echo.
I *hopefully* will be getting an amnio this Tuesday to see if there are any other problems, which is unfortunatley possible.
We hope to get more answers on the severity of the babies condition, plan of attack and so on.
Our prayer is that a wrong diagnosis was made!!
Thank you for all your prayers for the baby!!!! Daddy and I love him so already and are so proud of him.
I never thought I would be starting a thread like this!!
Please keep prayers, thoughts, whatever coming for our little boy!!!!!!!!
Update 5/8:
First off, thanks sooooo much for the kind words of support, fms, prayers etc... It means so much, I can't even describe. I intiallly thought there was no way I was going to get through this but I am getting stronger day by day!!!
My OB/GYN urged me to get an amnio due to the fact that there may be other existing defects besides the heart. I found out yesterday that my amnio results were great!!!!  I am grateful and relieved!!!
Tomorrow is the big day!! We meet with specialists at Columbia Pres to find out the nature of our babies conditon. Hopefully, we will have more answers and things will look more positive!!!
Thanks again and if you could spare a prayer, good thought, we soooo appreciate it!!!!!
Update 5/16:
Just thought I would post a quick update:
We did go to Columbia Presbyterian and the diagnosis was confirmed as Hypoplastic Left Heart.
We weren't terribly shocked but as you can imagine, we were hoping for better news.
Where this leaves us:
I will be transferring all of my care to this hospital and will probably be induced around 38 weeks.
The baby will go through his first heart operation within the first few days, the second around 6 months and the last around 18 months to 2 years. This is really serious stuff and we are scared out of our minds.
Our hope and prayer: a very happy and otherwise healthy baby when all is done!!!! It is going to be a long road and he will constantly require cardiac care; but this is our goal.
I have been reading some very postive outcomes and this is our goal. Of course I feel awful this happened and it has been pretty hard to resume with this pregnacy as normal, but I am trying the best I can. I do have moments where I have been pretty depressed. I am crying just posting this.
So please, if you could, just maybe send a positve thought, prayer, whatever, our babies way!!! It would mean so much!!! He is very well loved and I can tell he is a fighter already!!!!!
I will be on sporadically, it is just very hard to post and read right now!!!!
Much love
Message edited 5/16/2008 9:58:43 AM.
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Posted 5/1/08 10:39 AM  |
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Long Island Weddings
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JandJ1224
Member since 6/06 5911 total posts
Name:
Jannette
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Re: Please pray for our baby!!!!!!
I will pray for your baby and your family
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| Posted 5/1/08 10:41 AM |
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pickles16
Real Estate Professional
Member since 11/07 17227 total posts
Name:
Jen
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Re: Please pray for our baby!!!!!!
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| Posted 5/1/08 10:41 AM |
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bicosi
life is a carousel
Member since 7/07 14956 total posts
Name:
M
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Re: Please pray for our baby!!!!!!
I do not know what that means but I wanted to send you many hugs and prayers! 
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| Posted 5/1/08 10:41 AM |
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mamabear
LIF Adult
Member since 3/08 4539 total posts
Name:
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Re: Please pray for our baby!!!!!!
i am so very sorry. i truly hope it was some terrible mistake.
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| Posted 5/1/08 10:42 AM |
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futuremommy
LIF Adolescent
Member since 8/07 840 total posts
Name:
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Re: Please pray for our baby!!!!!!
Best of luck to you.
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| Posted 5/1/08 10:42 AM |
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betty
My boys
Member since 5/05 4380 total posts
Name:
Beth
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Re: Please pray for our baby!!!!!!
Many
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| Posted 5/1/08 10:42 AM |
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GraciesMom
LIF Adult
Member since 7/05 1636 total posts
Name:
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Re: Please pray for our baby!!!!!!
I am so sorry you received such devastating news. I am praying for you and your baby.
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| Posted 5/1/08 10:42 AM |
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NinaLemon
It's a boy!!!
Member since 10/07 6453 total posts
Name:
Jeannine
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Re: Please pray for our baby!!!!!!
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| Posted 5/1/08 10:42 AM |
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neener1211
:-)
Member since 4/07 22952 total posts
Name:
J
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Re: Please pray for our baby!!!!!!
This is not fair. I am sending you as many hugs and prayers I can...if you need to talk anything out, please do not hesitate to ask. I know how hard these decisions can be after 20 weeks along.
Message edited 5/1/2008 2:24:23 PM.
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| Posted 5/1/08 10:44 AM |
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twinkletoes807
Mommy's Girls! ♥
Member since 11/07 10116 total posts
Name:
Gabi
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Re: Please pray for our baby!!!!!!
Sending you and your hubby lots of hugs!! Sending baby lots of prayers!!
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| Posted 5/1/08 10:46 AM |
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Nicole728
My Happy Girl
Member since 7/06 8198 total posts
Name:
Me
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Re: Please pray for our baby!!!!!!
OMG, many prayers for your baby and your family
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| Posted 5/1/08 10:50 AM |
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headoverheels
s'il vous plaît
Member since 6/07 42079 total posts
Name:
LB
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Re: Please pray for our baby!!!!!!
oh kathleen i hope the doctors are wrong... many many for you and your baby!!! please keep us updated if you can, and in the meantime try to take it easy!! you are in my thoughts.
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| Posted 5/1/08 10:51 AM |
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katiebug
I'll love you for always
Member since 2/08 4624 total posts
Name:
Katie
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Re: Please pray for our baby!!!!!!
Tons of prayers for you and your family!
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| Posted 5/1/08 10:54 AM |
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Marcie
Complete Happiness :)
Member since 5/05 27789 total posts
Name:
LOVE being a Mommy!
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Re: Please pray for our baby!!!!!!
Many prayers for you and your family
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| Posted 5/1/08 10:57 AM |
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Karebaby
Precious
Member since 10/06 5304 total posts
Name:
Karyn
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Re: Please pray for our baby!!!!!!
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| Posted 5/1/08 10:57 AM |
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1stimemom
Love my boys
Member since 2/08 8766 total posts
Name:
Mrs Dee
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Re: Please pray for our baby!!!!!!
You have my prayers
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| Posted 5/1/08 10:57 AM |
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Saltricia
Hello...it's been awhile!
Member since 8/07 1035 total posts
Name:
Patricia
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Re: Please pray for our baby!!!!!!
My prayers are with you and your baby!!!
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| Posted 5/1/08 11:01 AM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Please pray for our baby!!!!!!
We have some of the best pediatric cardiac surgeons in the country right here!!! Please take some comfort in that!!!
My daughter has a congenital heart defect as well...
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| Posted 5/1/08 11:02 AM |
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MrsS2005
Mom of 3
Member since 11/05 13118 total posts
Name:
B
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Re: Please pray for our baby!!!!!!
My thoughts and prayers are with you and your family.
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| Posted 5/1/08 11:03 AM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: Please pray for our baby!!!!!!
I am praying for you and your baby. I hope it's all wrong..
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| Posted 5/1/08 11:05 AM |
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pinkandblue
Our family is complete, maybe
Member since 9/05 32436 total posts
Name:
Stephanie
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Re: Please pray for our baby!!!!!!
many prayers for you and your baby
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| Posted 5/1/08 11:08 AM |
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Christina
LIF Adolescent
Member since 10/06 891 total posts
Name:
Christina
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Re: Please pray for our baby!!!!!!
You, your DH and your baby are in my prayers...I'm so sorry you are going through this.
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| Posted 5/1/08 11:16 AM |
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Stephybaby
Love my two girls!!
Member since 11/07 1966 total posts
Name:
Stephy
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Re: Please pray for our baby!!!!!!
I will be praying for some good news!!!
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| Posted 5/1/08 11:24 AM |
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chikita315
Love
Member since 8/06 7945 total posts
Name:
M-lo
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Re: Please pray for our baby!!!!!!
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| Posted 5/1/08 11:25 AM |
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