Less then 48hr since losing my son
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March 30th, 2014, 05:32 PM
Mega Super Mommy
Join Date: Nov 2006
I'm devastated and just completely grief stricken. My sweet baby boy passed away Friday night and I am a mess. I have so many feelings and thoughts. One minute I am doing my best holding it together. The next I am am literally having a panic attack. I never wanted to go through this even though I knew since I was pregnant it was a strong possibility. My son was diagnosed in utero with hypoplastic left heart syndrome, aortic stenosis and mitrale valve leak. His whole left side of his heart was pretty non existent. But we had hope. Doctors said they could do surgery and he could in time live a relatively normal life. Of course medication was forever in his life and regular visits to the cardiologist. And the surgeries were fairly new. But some young adults were still around today who had benefited from them. The day he was born, December 16th, has been nothing but a whirl wind since. He was 2 months premature which was very bad for his condition. I never even got to hold him after the birth. My first time holding him he was 3 weeks old. He had his first surgery at 10 days old and his heart started failing him less then 2 weeks later. They prepared us then for him to not survive the emergency surgery he had to undergo. He came out of it on life support and they again prepared us for him not to come off of it. 7 days later he was able to come off but was very critical and struggling. But he prevailed and he made it through. Just a week ago he was doing so well. Of all his medicine, he was eating well and gained a good amount of weight. We were looking forward to taking him home. I shopped for more clothes and was going to buy his car seat this week.
But then last Sunday an echo of his heart showed his function not good and two narrow spots within is aorta. By Wednesday they took him to the cath lab for a balloon to be placed in both area's. The procedure was successful and he came out doing just fine. Friday I visited him and his heart rate was dipping pretty low but no major concerns at that point. Everyone had praised him and said how good he looked and he was such a fighter. He beat so many odds. He had been in a baby swing and loved it so much. I went home that afternoon like always so happy my baby was ok. 9 p.m the hospital called us. I knew there was a problem, they never called us before. They said he was in bad shape and they lost his heart beat briefly but got it back. We needed to come now. It took us almost an hour to drop the kids off and get there. The docs were frank with us. He wasn't going to make it. They had been keeping him going and he was holding on waiting for his mommy and daddy. We went to see him and he was cold, barely alive. A good heart rate but only due to medication and the cpr he had gotten. His chest was bruised from the compressions and I was heart broken. Within minutes of us seeing him his heart rate sky rocketed then dropped and just went up and down and the bells and alarms went off. The doctors sprang into action but we told them stop. It's too much for him. We needed to let him go and it was clear. His heart just couldn't do it anymore.
They turned off the monitors and swaddled our boy up so we could hold him. We could tell when he was gone but the machine kept the appearance he was breathing. The doctor came and checked....No heartbeat. My baby was gone. Cold and quiet he was. My heart sank but I just whispered to him that it was ok to go. Mommy and daddy were so proud of him for sticking it out for 3 1/2 months. He did so well and I am so proud of him.
But how do I go on? I have 4 other children and I'm a mess. I stare at his pictures and I cry. I can't go to the hospital and see him ever again. I will never put his little clothes on him or feel his soft beautiful hair. All I have are pictures of him sickly in the hospital fighting for life. I held him 4 times in his life here on earth. Nothing about having him was normal and I am so mad that my son never got the chance to see the sun, smell the fresh air or even see his siblings. They never got to meet him. I'm angry he is gone and I just want my baby back. We have no idea what happened. He was fine one minute and the next he was in cardiac arrest. His blood flow showed good but his heart just wasn't working. I am devastated and just at a loss of what to do. I want to scream and fall to the ground and roll up in a ball. But I can't do that to my children. I can't fall apart. But I want to so bad. I want to beat the wall and ask why this happened to me, to HIM. I know my grief is my own selfishness. My son is no longer in pain or struggling and I should be happy for him that he is forever resting. But I can't let him go. I hate I was even forced to in the first place. All he ever knew was that hospital. He never even got to know his mother and father well enough. We couldn't barely hold him due to the operations. How do I go on? Tomorrow we need to pick his urn and finalize his cremation. No funeral, it's too hard for us and would be for the kids. We can't go through that, not after this long battle we have already been through. How do I go on you guys? How?
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