Cardio Appointmet

Legends appointment went ok. He had tons of fun kicking the paper before the doctor came in lol

 We got there and the doctor listened to his chest like he normally does and said he still sounds good. But since his stats are going back and forth from 72-77 percent we were going to do a echo and see if he can wait another month or if we need to schedule it sooner. This was the first echo he has had since hes been home from the hospital. They normally take the stethoscope and listen to him which at first concerned me because from status updates I see alot of kids getting echos every cardio appointment, but at the same time I trust his doctors with everything they haven't steered me wrong yet.He's doing really well. He wasn't sedated he slept for most of it then woke up and started kicking the ultrasound tech lol. They guy kept saying man hes strong! So they finished the echo and made us a appoinment for another month. The doctor had to leave so he is going to go over it and if theres anything concerning he will call me and we will schedule the cath sooner. As of right now unless he sees something we will wait another month and then the next appointment July 15th we will set it up for sure.

As far as feeds go, He's doing excellent! He went up in percentile and hes 13 Pounds 7 ounces 24 Inces long :) My little porker. Thats about it for now until we find out if theres anything else but hoping we will be able wait and be home with us another month ♥

A few updates

Im new at this whole blogging thing so please bare with me. Legend was born 2/22/11 at 7:37 pm. I went in that day to my obs for my normal Nst testing and his heart rate kept dropping to the 60s. It would come right back up then drop again he was having the brady rythems. So never the less my doctors scared the crap out of me they did a ultrasound called the paramedics and hooked me to a iv right away in the doctors office all while my mom and my son little vic were downstairs waiting in the car because vic had to work and they didnt allow kids in the doctors office. I asked to call my mom and tell her and the doctor said no we are getting you straight to the hospital so a nurse went down and told her. I was scared out of my mind not knowing what to expect. The plan was to be induced but they threw that out right away. They told me I was going straight to the hospital to have a c-section. I got to the hospital and they monitored me for a few hours and said they might let me go home they said they were going to call my ob and see what they said. My ob said no Legend was telling us he didnt want to be inside anymore. So after a few hours of being there i had a emergency c-section. I didn't get to see him for 12 hours just 3 little pictures of him which drove me nuts. As soon as they said i could go up i was gone! He was sooo precious as he still is. At 2 1/2 days old they did his norwood i was a ball of nerves. I cried my eyes out and was so scared something bad was going to happen. I have the worse of luck i feel like and this was going to be one of those things. Thank God he did great. His biggest problem was learning to breath without help. He finally got over that then it was feeding. They finally decided to send him home with the ng tube because feeding was the only thing holding him back. Well after a few weeks he decided he didnt like the tube. No matter what i did he pulled it out mittens and all. The nurse said we could take it out and try it for a few days but if he didnt pick up on eating we would have to put it back in after a week he picked up on eating and now hes a little fatty! He's 13 pounds and is eating so much ive had to buy extra cans of formula.

Well onto now. Legend is offically 4 months old ♥ and to look at him if you never seen his scar or didn't know any better he looks like a normal healthy baby boy. So far he has dont excellent which is great but also scares the crap out of me at the same time because im always worried that its been too good to be true and whens something going to happen. While also praying for it to stay going great. Well tomorrow or should i say today is his next cardio appointment and his stats have been dropping below 75 percent sometimes so we will be discussing setting up the cath soon. Im scared and excited at the same time I want it behind us but I dont want to hand him over again. Things have seemed so normal hes starting to sleep all night and everything I dont want to have him go back for another surgery but i also know he needs it :( Well i better be getting to bed I will try this again tomorrow after his appointment with a update.

Todays Appointment

Went to the pediatric Cardiologist today He said Legend Has HLHS, a Large VSD, and a malanoid av Valve. He sees to ventricles though one is large and the other is really small but they are not leaking which is a good thing! He also says his ventricular function looks good. He is setting it up where we get to meet with the surgeons in a couple weeks. So i guess we will go from there. I see him one more time before Legends born. So i guess as of now thats what we are waiting on the birth of my baby boy and we will go from there! Just hoping it all works out and hes meant to be here with us. I love him so much allready and the thought of losing one of my kids is the worst feeling ever. So until then its going to be pray pray and pray!!!!

My son Legend

I found out at 20 weeks pregnant my son has Left Hypoplastic Heart Syndrome along with another heart defect. They said the 2nd defect which is vsd is actually helping the left hypo but when he is born can be a problem. The day i found out i cried my eyes out. They talked to me a few times about termination but i am not okay with that at all. Id rather have him and go thru the surgerys and if something happens where he is taken home at least i know I tried everything i possibly could. Our pediatric cardiologist at the appointment before last said he had seen 2 vessals in the heart which was a good thing but then the next time we went the baby was uncooperative and he did not see it again. I told my obs about what the cardiologist said and she said if he said he seen hes "smoking". That really bothered me and it seems when i think things are looking up a little bit and we get a little good news they find a way to knock it right back down. We have our next appointment with the cardiologist this tuesday coming up 1/11/10 I am hoping he sees a little more.
I have a lot of support but it is very hard. I want to be at the hospital as much as possible and i want to bring my other son if they will let me as much as possible. My fiancee works alot so my son is used to being around me and I dont want him to feel left out hes so young he wont understand why moms not around. I think so far through out the whole thing ive been ok but now its gettng closer to time im getting more and more scared and i know finding out is just the beggining. I dont know what to expect at the hospital they havent told me if I will be able to hold him at all or if they are taking him immeditly which im sure they are. Ive never been that much of a religous person but ive been praying so much everyday lately. I pray everynight for my son i really hope he is meant to be here with me because i dont think im strong enough to plan a funeral for any of my kids. He seems to be a strong little boy inside me and im keeping the faith that he will be when he comes out too