New Friends!!

Immanuel born with TOF like Maccoy... Isn't he a Doll!!


The support group here in KC for Congenital Heart Defects has given me a wonderful Gift! A new Friend! Her name is Kendra and her son Immanuel was born a few weeks after the twins and like Maccoy has Tetralogy of Fallot and is tentatively scheduled for repair in March at Children's Mercy. Kendra and I have talked on the phone a few times and via email! We have a lot in common and have turned into good friends! It so helps to have someone to talk to that knows what you are feeling. You see if you don't live with a sick baby and take care of them you don't know how much it hurts. To you they are sick but others can forget about it until the next time they see them or talk to them but for us parents we see it everyday, we think about it every min,hour,day. We fear that day when they say its time for surgery, we analyze every breath wondering if it is normal, we look at their skin color every hour to see if we even see a hint of blue we worry and wonder and wait and we know that this condition will never be gone. That our child is forever going to carry this with them. We are forever great full that there is a surgery that can "repair" our child's heart so that he may go on living a "normal" life but in the back of our head I have to assume my child's broken heart will always be something to worry about.. You see even though they can perform Open Heart Surgery on him to repair the defects his heart will always be considered "repaired" and there is always a chance that he could continue to have problems that will need to be corrected. This isn't just a simple hole in his heart that will just vanish this is a Defect that needs to have open heart surgery to be fixed. Oh how we wish one day we would wake up from this nightmare and it would just be gone, but that is not going to happen. Our son is going to have a HUGE Open Heart Surgery in just a few short months to repair this defect, he will be on heart/lung bypass, in the ICU fighting for his life and he will forever have Tetralogy of Fallot in his medical history, he will forever be seen at least yearly by his cardiologist. His condition is SERIOUS it's not just something we can forget about until next week we think about it from morning to night, while he is awake, while he sleeps.. we worry and we worry. I am not asking you to feel sorry for him or us,but please pray that my baby comes out of this okay..and please pray for our new friends