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-   -   Is anyone still here?? (https://www.justmommies.com/forums/f783-children-heart-conditions/2687002-anyone-still-here.html)

PrettyMommy October 19th, 2013 07:29 PM

Is anyone still here??
Came to this section for some advice and support. Not sure anyone comes here, no post in a while. Either way I will introduce myself. My name is Kesha, I am a SAHM of 4 and we are expecting a 5th. I suffered two miscarriages back to back before getting pregnant with our current son. I was excited to reach my 19 weeks and go for our ultrasound. I thought my biggest worry was if I was having a boy or girl, I wanted a girl lol. But during the check of his heart the tech felt his left ventricle looked very small and advised my OB to send me for an echocardiograph with the high risk specialist. Well that appt happened 2 weeks later when I was 21 weeks. He confirmed it was a vessel that was small, not the ventricle. He couldn't say for sure all that was wrong and needed the pediatric cardiologist to look at it.
I had that appt just two days ago and received bad news. My baby boy, although healthy in every other way, has a leak in one of his heart valves as well as the vessel being so small that he is barely getting any blood flow through his left ventricle and the right is enlarged because of this. We do not have a full diagnosis yet since he wants me and my dh to come in his office next Friday and explain it all to us including our options. However after seeing my OB yesterday she advised me that the cardiologist says it is not good at all and very bad. They have no idea if my son will survive and if he does once born he is looking at major and complicated heart surgery. They seem to feel is has HLHS. His whole left side of his heart is just a mess and did not develop correctly. I'm devastated and an emotional mess. I may lose my son and that thought makes me want to just scream and throw myself to the ground with hurt and grief. I hold it together as best I can because I have 4 other kids, 3 of which of young and don't have a clue what's going on. They are looking forward to their baby brother. How can I tell them he will never be coming home if the worse should happen? I don't know what to do and I feel mad, sad and just cheated all around. I have 4 other healthy children. How can something be wrong with my son? How did this happen to us? What kind of life is my son going to have if he does survive and for how long? I have so many questions and no answers yet. I may never get some of the answers I am looking for. All I can do is hope. Hope he is ok and hope by some miracle his condition does not worsen or is not as severe as it looks right now. He is so strong and active right now and my heart breaks every time I feel him move. I'm scared and sad for what his first moments of life will be like. Right now he is safe in my womb and I'm nurturing him as best I can. But once he is here, it's out of my hands.
We are not sure if we need to travel out of state to seek the best care of if he will have adequate care here in Las Vegas. All I know is I have to do whatever I can to keep him fighting and alive. I have heard some positive stories via the internet of other people's children surviving and being pretty normal toddlers. I just hope I can be one of those people.

SassyMama December 5th, 2013 05:09 PM

Re: Is anyone still here??
I don't know if you still check this board. I haven't been around in awhile. I'm so sorry to hear about your son's diagnosis. Is it possible that they could be wrong and it's not something serious? Please KUP

Hazel December 13th, 2013 07:25 PM

Re: Is anyone still here??
{{hugs}} the board here is very slow but Babycenter has a really great support board: Babies and Children with Heart Problems - BabyCenter

Kinsma90 March 26th, 2014 10:14 PM

Re: Is anyone still here??
I'm in the BabyCenter group as well and it is pretty active!

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