Prayers needed

Hello everyone Adam is having his fontan open heart surgery Wednesday August 7th please keep us in your prayers.

Preschool Graduation And Fontan Surgery

Adam graduated from preschool today I was a happy mommy. Although he has to have a fontan surgery August 7th I am terrified. Here is some pictures from graduation

Prayer Request

Adam is having a heart cauterization on March 20. Please pray that everything goes good.

Question

Does anyone know where I can find crochet patterns for CHD awarness? Please let me know

Happy Thanksgiving

Happy Thanksgiving to all the heart families. Adam has been doing excellent health wise. Does any one know the best way to break him off a sippy cup that is our next big challenge?

Cardiologist Update

Adam cardiologist appointment went excellent. He said that he did not want to see Adam back for 9 months. He also told me that it is time for Adam to start interacting with children his own age. I was happy hearing that. Thank you for all the prayers.

Long Over Due

Finally things are starting to slow down. Adam has been doing really well and finally sleeping in his own bed. Adam has a cardiologist appointment September 21st please pray that everything will go good. I will update after the appointment.

Prayers Needed

Hi Everyone, can you please pray for Adam on Thursday. He has a cardiologist appointment and I am terrified about it. His fingernails and toenails are looking a lot more blue than they ever had. Than you.

Question

Hi everyone! I was thinking of signing Adam u for karate I just wanted to know if any heart kids does karate. Or if someone knows if heart kids are able to or not please let me know. Thank you

Merry Christmas

Merry Christmas to all heart family's. Adam is doing wonderful he started preschool. Which he really likes.

Every Heart Has A Story

When Adam was born on November 4 2008 he was blue and as soon as he cried he started to turn pink. But a few hours after birth I noticed that he was breathing really fast and I started to get scared I called the nurse in she said that he was fine. Which I knew he was not because my other 2 children never done this. They sent us home after 24 hours and we had to follow up with the pediatrician in a week. When I did he said that he heard a heart murmur and wanted an echo done at the hospital and for me not to worry. Well we scheduled the echo and finally got in and the lady was doing the echo and she turned white I asked her what was wrong and she said she had to get someone else to come in and see if he could get better pictures. Well when he came in and tried he said to stay here that he had to call the doctor. Well the doctor talked to me on the phone and said do not leave the hospital to go straight the ER that Adam had something wrong with his heart and that he was going to be life flighted to the Cleveland clinic. When we arrived at 9 p.m. we could not even get in the room with Adam due to all the doctors by him I was really scared. They preformed their own echo and they waited until the morning to tell what us what was wrong. Then that morning the doctors finally told us that our son had a broken heart he had tricuspid atersia, 2 wholes in his heart which are called asd, vsd and transposition of the greater arteries and that he would need 3 open heart surgery. I remember when he was 3 months old I noticed that he was panting like a dog but he was not blue and he was sweating I called his doctor to get him in and he seen him when we got there and said that he was just sick and would be okay. I was not satisfied with that answer and called his cardiologist and told him what was going on and he said to bring Adam to see him right now. So when we got there they already had a room waiting and he was seen and we were told that he was in congestive heart failure. I was so mad that the doctor said nothing was wrong but he was sick I called that doctor back and yelled at him. I found a new doctor who knows about his heart. When Adam was 6 months old he had his first open heart surgery which was to put a band around his lung artery because his lungs was getting to much blood. After about a week we was sent home. It was hard handing him over and seeing him afterwards. He was doing well until he was 2 years old and his cardiologist said that Adam needed his second surgery a Glenn shunt. It was really hard walking with him in the OR and being by his side holding his little hand until he was put to sleep. I remember the nurse put me in a wheel chair and took me to the waiting room he is a mommy's boy. When we got to see him afterwards the surgeon Dr. Mavroudis was in there with him and he told us that his blood pressure was really high and I remember that he stayed at least 2 hours with him. I was really worried and he said that it happens like this sometimes. Adam was released after 5 days. I asked the cardiologist when will his next open heart be and he told me when Adam is 4 to 6 years old. I am so thankful for my mother because she has been there with me the whole way. Especially when she would stay the night with me at the hospital after the surgeries when my husband had to work. She would stay until Adam was moved out of the PICU. I am so thankful that god gave me Adam and I will continue to fight with him until whenever.

Prayers Needed

Adam has been doing so good for so long. Please pray for him he needs a sedated EKG and EEG because they think that his hole in the heart is closing. Please pray that he does well with the sedation and that everything is good with his heart. I do not know for sure when this is supposed to happen they are supposed to call me with info since its an or procedure.

So Long

Hello everyone! Adam is doing wonderful he is going to start preschool in fall. I am freaking out about that because I am scared to leave him. Will the teachers know when he starts to get out of breath to sit him down and give him something to drink before he starts turning blue? That is my biggest fear! His cardiologist seems not fazed by my reaction. If any has advise I would really appreciate. I am going back to school in fall for a pediatric cardiology nurse. If anyone has went back to school when you have a heart baby at home is it hard any advice will be good.

Answers Needed Please

Adam is very healthy. He went to the cardiologist appointment they do not want to see him again for 6 months and they took him off of all his meds. I have noticed when he runs and plays he is out of breath has this happened to anyone else. If so what can I do to prevent him from getting out of breath?

HAPPY NEW YEAR!

Hi everyone happy new year! I hope that this year all will be well with your family.

Suggestions Helpful

Hi everyone! Does any one have suggestions on how to get Adam off the pacifier and how to make him sleep in his own bed all night without coming in to mine. Just can't sleep with him no more he is a bed hog and will kick you out if he can. Every time I ask the doctor's they tell me he still needs it is soothes him but he is now 2 years old and needs to come off.

Teeth Removal

Adam did really good with his 4 front teeth being removed. He is upset right now because he can not drink from a sippy cup. O well I guess its a good time to get him off of them now. The dentist said there is nothing that anyone can do with the teeth when the child is on pediasure. No matter how much you brush them it still will cause the teeth to decay.

Finally Back

I have been really busy after mother's day. Especially with summer and doctors appointments. I hope all is going well with our little heart friends. I have a question has anyone had this problem with pediasure making the child's front teeth bad. The only reason I asked is because Adam has to get his 4 front teeth pulled they said it was from pediasure. They are not going to put him to sleep they are going to numb his mouth. Poor little guy.

Happy Mother's day

Happy Mother's day to all the heart mommies! Thank you all for your suggestions on Adam. I think that the pediasure is keeping the weight steady and he is eating a little now.

Answers needed please

Hi Everyone! I am having a problem with Adam eating now. Before the open heart surgery he had a very good appetite. But now after the surgery he is refusing to eat. Has anyone had this problem and if so what did you do to get them to eat? He only weights 21 lbs and 12 oz I am scared of him losing more weight that he can not afford to lose.