Hello Everyone,

Im new to the board. My name is Vanessa and I gave birth to a beautiful baby girl named Arianna on 11-26-06 - 4 weeks premature and with Tetralogy of Fallot. She spent 5 days in the NICU. She never needed oxygen or anything else. She was very small 4lbs 13ozs. So the dr's said the 1st thing is to get her to gain weight. They couldnt due surgery on a baby under 6lbs. She is know somewhere around 7lbs, doing great. Only cyanotic when getting shots cause she crys so hard. I quite my job and take care of her full time and will remain to do that for a few years. she cannot be around any children or public due to the RSV season. So they only place I bring her to in my moms where its just my parents that lifve here and we are very sanitary. We have been seeing her cardiologist monthly and nothing has changed so far with her heart. She has another echo on Jan. 31st to see how things are looking. Her dr said we will do her surgery between 4-6 months old. She is 6 1/2 weeks now and Im starting to get scared. I keep telling myself it will be ok...but will it? I dont know what to expect and I wanted to know if anyone that has been through it can give me some advice. Are there things you wish you knew about or questions you asked before surgery time. How did you deal with the waiting period. How do you prepare yourself and your child for something like this. I really freak out about them cutting open her chest...the pain she will feel after and if I can give her the best care once I bring her home. My boyfriend says not to get ahead of myself and take it one step at a time...but come on Im a mother and thats my job to stress out. So any advice or just hearing some peoples stories would help. I know everyone is different but I want to be prepared for anything. Thank you all for reading and God Bless!

Vanessa & Arianna

Hi Vanessa and Arianna,
I don't know anything at all about your condition, and I am not ashamed to say that I have never even heard of it. However, your story touched me and I wanted to let you know that no matter what problems or troubles or defects your daughter might have there is always hope with prayer. God can do wonderful things. He can take away your fear and worry about the upcoming surgery, as well as give you peace in knowing things will be ok with Arianna. I wanted to reach out to you and let you know that there are people who might not be able to give you any medical advice but who still care and will be praying for you. God Bless you both.
Mileena

gGThank you for your kindwords. I know God is good. I pray every day. OIts nice to talk to people as well. Its hard to think that praying is all I can do for her.

Vanessa,

I have a daughter who is 2 1/2 and was born with TOF. She had her surgery when she was 11 months old and everything is fine now. Like I said in another post in a different thread, nothing can prepare you for the surgery. My wife and I prayed often and I asked everyone I knew to pray for my daughter, but like you said, that is your baby and you are going to worry about her, even if it's just a cold.

Also, your daughter will not be in as much pain as you may think. After our daughter had her repair, they kept her heavily sedated for about two days, after that they gave her pain meds through her IV. After we got her home, it would hurt her to cough or sneeze due to the incision on her chest, but that only lasted about a week, maybe less.

The one thing I did was that I kept reminding myself of was that once it is over, it will be over. If that makes sense to you. This procedure is fairly common, I work in surgery at a childrens hospital and we have probably 1 or 2 TOF repairs a week. When my daughter had her TOF repaired, there was another baby after my daughter who had a repair done the same day.

You mentioned not taking your baby anywhere due to RSV season. My daughter, before her surgery in the RSV season, would get monthly shots of a medicine called Synagis. It helps with the prevention of RSV. Maybe you could mention this to your baby's Cardiologist. But it is a good idea to keep them away from other school aged children.

Please know that this is a very supportive board. Keep us posted with her PROGRESS!! I do not know anything about what your lil sweetie has, I'm afraid. I will keep you BOTH in my prayers at this very moment. I have to remind myself all the time that God will not put more on us than we can handle. I would rather have ANYTHING , than have it happen to my child or grandchildren. The post from "dad" was good. It should make you feel a lot better!! Mimi

Thank you for your response. I keep telling myself just to pull it together and just get through this. Like you said once its over its over. She is getting the Synagis shots but they still tell me to keep her locked up at home. I bring her to my moms house and thats it. It sucks but its for her health. Once again thank you for your support



Vanessa,

I have a daughter who is 2 1/2 and was born with TOF. She had her surgery when she was 11 months old and everything is fine now. Like I said in another post in a different thread, nothing can prepare you for the surgery. My wife and I prayed often and I asked everyone I knew to pray for my daughter, but like you said, that is your baby and you are going to worry about her, even if it's just a cold.

Also, your daughter will not be in as much pain as you may think. After our daughter had her repair, they kept her heavily sedated for about two days, after that they gave her pain meds through her IV. After we got her home, it would hurt her to cough or sneeze due to the incision on her chest, but that only lasted about a week, maybe less.

The one thing I did was that I kept reminding myself of was that once it is over, it will be over. If that makes sense to you. This procedure is fairly common, I work in surgery at a childrens hospital and we have probably 1 or 2 TOF repairs a week. When my daughter had her TOF repaired, there was another baby after my daughter who had a repair done the same day.

You mentioned not taking your baby anywhere due to RSV season. My daughter, before her surgery in the RSV season, would get monthly shots of a medicine called Synagis. It helps with the prevention of RSV. Maybe you could mention this to your baby's Cardiologist. But it is a good idea to keep them away from other school aged children.