Tetralogy of Fallot | Forum profile

It gets easier... I was so paranoid in the beginning...Jake would turn purple when he would cry too..so I never let him cry...now I have a VERY spoiled VERY attached mamas boy!!!!

Hi i am wondering if any one else has? A BT Shunt? Also did any one notice a different breathing pattern with there TOF baby. I cant put my finger on it. It?is like she is SOB at times. I see a little more blueness around her lips and nose. I don't want to seem paranoid but i did make a appointment with her Dr. How long did some of you wait for surgery? Our Dr seems to think surgery at 1 year But i see alot of babes going in at 4-6 mo....

Are they checking her oxygen sat levels? What are they? I don't know about the shunt but lower oxygen levels would explain the shortness of breath I would think. As for waiting on surgery, I would ask the cardiologist why they are waiting. I know they want Sean to get above 11 pounds before surgery, and they've targeted 4 months for OHS because they don't want him to get worse.

We were told our son Grady had a heart murmer right before leaving the hospital to go home and that we should go see a cardio but that its probly nothing and should go away on its own. Then at 19days old we had to take Grady to the er bc his jaundice level had gotten high and the doctor in the er heard his murmer and wanted to go ahead and run an ekg and chest xray since we were already there. Then the next morning they came in and did an...

Well, our little one decided to make an entrance a bit earlier than expected.? I was waiting in line at the pharmacy and my water broke... I rushed to the hospital and they were able to stop labor temporarily.? I went on bedrest for 6 days, but continued to contract and Fin was born at 35 weeks old on November 23rd.? He weighed 4 lbs. 5 oz. and was 16.5 inches long.? We just spent the last 10 days in the NICU (which was an awful experience)...

My TOF story... ? I found out one of my twins (Sydney) had Tetralogy of Fallot in June 2009, when I was 4 months pregnant.? I got very lucky I found out early so besides that one suprise, there wasn't any other BIG suprises..? Right now my girls are 5 wks and 4days..? Sydney was born at 4lbs 3oz, and my other twins (Aubrey) was 5lbs 6oz.? Sydney has had 2 catheter procedures so far, one to put in her stent and the 2nd was to fix the...

Congratulations on Fin's arrival! I'm so glad he's doing so well. As for the BF'ing. ?Sometimes it tricky and babies just don't take well to it. ?If it's important to you, keep trying, but don't beat yourself up if you have to pump and give a bottle. ?At least he's getting your breastmilk. ?I know it's not the way you had it pictured, but sometimes babies have other plans. ?You can talk to a...

My son was born october 28th and her was diagnosed with TOF the day before we left. He was never put in NICU and he came home with me when i was discharged. He does go to the Dr once a week for and EKG and an eltrasound of the chest but his oxygen is always 97% and higher he does not even turn blue... The dr said sometimes TOF children dont show symptoms intil 6-8 weeks old. I dont leave my son with any one either. I am living ina city away...

Hi, My son Christopher was born NOv. 5, a seemingly healthy and 2 week late baby boy. 36 hours after his birth he was in the NICU and diagnosed with T of F with pulmonary atresia. I remember being just absolutely devastated and hardly remember anything the cardiologist said. Finally, last Saturday, he was allowed to come home. Since then things have been wonderful and very stressful. He is on LAsix to keep the fluid from building up in his...

Julie, I know your scared right now.? And wow about loosing your job, talk about adding insult to injury!? I'm so sorry.? Part of me was relieved however when they scheduled Chase's surgery, we would finally be able to move on to the next stage, and we have,? I hope things go smoothly and perfectly for Max, and I wish you luck in your job search!? By the new year, Max will have a fixed heart!