update on twins to be

[Frankie]

My daughte is having twins, due on Valentines day, one girl and one boy.

Yesterday she had an ultra sound and they found a problem with baby boys heart. She lives in NY and they sent her straight to Columbia Hospital where she, baby girl and baby boy underwent almost 6 hours of testing. Baby boy has a defect in his heart. The output valves and tubes are only going to one lower chamber, not both as they should. My daughter will now continue to go to Columbia for all pre-care as she will deliver the twins there. Baby boy will have to have open heart surgury within 48 hours of birth. On a scale of 1-10 for severity, his is a 7. 10 being worst.

All tests on my daughter and baby girl were fine. Both babies are growing.

Now when the twins are born, she will have about a 20 month old at home, a newborn girl to bring home, and a baby in Columbia for what they are saying, 3 months.

It is going to be a long several months. Any prayers for our baby boy during that times would be greatly appreciated.

 

[CyndiM]

Sending prayers for all of you and especially the little baby boy. ((((HUGS))))

 

[luv2ridesaddleseat]

I'm so sorry. I will pray all goes well, and baby boy does just fine. I can't imagine the feeling.

 

[crponies]

Oh, no! I am so sorry to read this news and am praying that things go well with this baby and that he will be healthy eventually. It is so incredible what they can discover so many months ahead of the birth now and be prepared to treat.

 

[Mona]

Oh no. So sorry to hear of the bad news. Sending prayers that all will go well with his surgery when he is born. Best wishes to all...it must be a very hard time for your daughter to be worrying about this now until the babies are born.

 

[TheCaseFamily00]

It sounds like they're in good hands,they're in my thoughts.

 

[Connie P]

Many prayers being said for all.

 

[Frankie]

Thank you all so much. Unless a problem occurs, such as a back flow of fluids or blood, he should remain the same, condition wise as long as she carries them. They will be watching for that.

Columbia is tops in the country for both critical newborns and their care and cardiac surgery, I am sure she couldn't be at a better place.

The number one goal right now, is for her to carry them as long as possible, to make baby boys chances better, they want him at 6 pounds. Not an easy task when carrying twins, but, my daughter is doing great so they do not see any reason why she won't carry them that long. Even doing well, to be sure, she will be put on bed rest soon.

When he is born their hope is that valve and tube is in there, just blocked, or not connected right, both can be repaired, if not in there, it becomes much more extensive.

I talked with her this morning and she sounds better. She has 2 close friends who are also pregnant, when talking with them, her friends say they are ready to be done and how odd it is that she wants to carry them forever if that is what it takes. Target date is January 25, want her to go that long.

Thank you all for your prayers and good thoughts.

 

[PromiseAcres]

It is a amazing what they can find out before the child is born?

Prayers to your family.

Danielle

 

[Sabrina]

our prayers and hearts are with you and your family.

 

[rockin r]

Tons of prayers from Oklahoma

 

[CharlesFamily]

Sending lots of prayers for your daughter, her son and for you! My youngest daughter was also born with a severe congenital heart defect. She was not diagnosed before she was born, and was actually 9 days old before we even knew something was wrong. She had her first heart surgery when she was 2 weeks old. She had her second at 5 months and her third just after she turned 3. She was born missing one of her heart valves and so the bottom right chamber of her heart did not form. Now, she basically only has a two chamber heart, or "half a heart." With all of that, she is now 7 years old, in second grade and doing fantastic!

It sounds like your grandson has either Double Inlet Left Ventricle (DILV) or Double Outlet Right Ventricle (DORV). I have several on-line friends whose children had those diagnosis and they are doing great! It is a scary time, but absolutely amazing what they are able to do now.

If you or your daughter want to talk about anything, please feel free to contact me through here or e-mail me at [email protected].

Hugs and prayers,

Barbara

 

[Frankie]

The DORV sounds right, but I'll be honest, I was more concerned with listening to the, how do they fix it answered compared to the what it was answer. I will have to asked again to be sure.

I hate it that my daughter has to worry about this for so long, but according to the doctors, it is very important to be caught while still in the womb. So if he has to have this, his chances got better even before he arrived.

Thanks again for all your thoughts.

 

[CharlesFamily]

I remember that feeling. It took me a while to understand exactly what was going on with my Maddy's heart. There is a wonderful on-line group called Hypoplastic Right Hearts, which is what Maddy has. And sometimes DILV and/or DORV results in this, too, so there are parents on there who your daughter may want to chat with. Go to www.hypoplasticrighthearts.org - it is a fantastic resource with lots of information and support. We have many expecting parents on there right now and many parents who have carried multiples with one having a heart defect.

Barbara

 

[minih]

I will be keeping you and your family in my thoughts and prayers, especially the little boy. It is going to be hard waiting and worrying.