Update on poor little baby A

We had the echocardiogram of the babies yesterday. First off let me tell you, if you ever have to have a fetal echocardiogram, it takes a very long time. The scan itself was 2 hours because the babies were being very uncooperative and then another hour discussing the results with the pediatric cardiologist.

They found several defects on baby A's heart. The first being a smaller than normal aortic arch, a ventricular septal defect which is bascially a hole between the 2 ventricles and the presence of bicuspid valve, instead of a tricuspid valve in the aorta. Overall, even though it's more bad news, the MD didn't think it looked that bad and can be corrected after birth. She said she's seen a lot worse the the babies have done well. We go back in 4 weeks to see how things are progressing.

So it's another blow, but it's something we can deal with. At this point our luck has to change. So much has gone wrong during this pregnancy. I'm hoping that the TTTS threat will not progress and I'll just be able to carry these babies for another couple months.

Thank you all very much for all of your kind words and support. I hope no one else has to experience what I've been going through.

 

I have no words of wisdom for you, but my prayers are with you and your babies!

 

I am sorry to hear the bad news but glad to hear it can be corrected after birth. My SIL had heart surgery as a newborn and has one every few years as she has a 'plastic' piece that doesn't grow with her so as she has grown they have had to go back in an insert a larger piece. Medical technology has come soo far it truly is amazing!

Hoping right along with you that TTTS does not progress!

 

I'm so sorry you are going through this and just want you to know my thoughts and prayers are with you.

We don't have the heart issues and I cannot begin to imagine what you must be going through but we have had our share of TTTS scares this pregnancy and I know how overwhelming that can be. hang in there and please keep us updated.

 

Hi. I am so sorry to hear about the heart problem. I too have ttts stage 2 diagnosed right before 13 weeks and I am at 18 1/2 weeks right now. Waiting for the pocket of fluid to get to 10-12 cm so they can do the surgery. I have an anterior placenta so that will help them get a better view. So far the girls are doing good though. How were your babies doing up til now. Am I right that you are about 21 weeks? I hope nothing gets worse for you and you are so right I wouldn't wish this on anyone.

 

My son only had the VSD at birth and it healed on its own by the time he was 6 months old. Maybe that part of the problem will be self correcting?

I will keep your little one and the rest of you and your family in my thoughts!

 

I am so sorry you have to go through this. My thoughts and prayers are with you.

 

You and your babies will be in my prayers, hang in there and know you are doing everything you can for them.

 

:hug99:

 

Sending prayers to you and your babies

 

I can't imagine your stress and worry. You and your babies are in my prayers.

 

[SIZE=10pt]Thoughts and prayers are with you and your family.

April [/SIZE]

 

My two year old was born with Atrio ventricular septal defect without much of the valves that were supposed to be there. I know what you are going through and I'd be glad to talk to you if you want. His was corrected at 5 weeks old and he is doing wonderfully now. I'll keep you in my thoughts and prayers.

 

Just wanted to give you some encouragment. One of my twins was born with a CHD and had surgery at 12 weeks and is now a scrapping 2 1/2 yr old. Breakthroughs in medical technology are outstanding and I'm amazed at what they are able to do for these little ones.
Did they give your babys diagnosis a name ? My ds has Tetrology of Fallot, and it involves 4 different defects.

Good luck and my prayers are with you and your babies.

 

:hug99:

 

:hug99: I'm so sorry for all that you are going through. I'm glad that they will be able to do the surgery after your little one is born. I hope that the TTTS does not progress. I'll be thinking about you.

 

I wanted to add some positive news too. A good friend of mine found out this AT BIRTH. I am so glad you know beforehand. Her daughter was shown to her for a second then wisked off to a another hospital via medivac to have emerg surgery! The surgery was very successful and she is now a healthy happy almost 4 year old!!

Hang in there. I know its hard though knowing your baby is not perfect. My twin Zach was diagnosed with kidney blockage at 35 weeks pg. They said it most likely will clear up on its own. Well it didnt and he had surgery at 8 months old. It was hard going through it all but again another good ending. He is now 2 and perfectly healthly!!

:hug99:

 

I am so sorry you're dealing with this. I'm so glad to hear it's correctable, though, and will be thinking about you and sending good thoughts for Baby A....

 

QUOTE(Becca34 @ Apr 15 2007, 01:05 PM) [snapback]220826[/snapback]
I am so sorry you're dealing with this. I'm so glad to hear it's correctable, though, and will be thinking about you and sending good thoughts for Baby A....



Hi Buttercup,
I am so sorry that your pregnancy is so difficulty. I wanted to let you know that I was diagnosed with possible TTTS due to low amniotic fluid at about 20 weeks and have needed to see a specialist due to a heart arrythmia found in one of the babies. It has been a stressful pregnancy with a lot of ups and downs. The good news is that I am now almost 33 weeks pregnant with what appear to be healthy girls. I was suppose to be induced next week, but my fluid levels are NORMAL for the first time since 20 weeks, so they are holding off.

I wanted to add that I am your neighbor in Maynard. I am delivering at Newton-Wellesley and see Dr. Robinson at Maternal Fetal Medicine. I saw Dr. Becker at MGM for the heart. I am interested in hearing where you are being seen.

They did also bring up Hasbro to me and the possibility of surgery and I have done some research on surgery. I am shocked that they don't do it in Boston. I have heard rumors that there is a brand new TTTS specialist at St. Elizabeth's who does the surgery, but I don't know if it is true or not.


Sending you lots of prayers,
Elizabeth