4 weeks old lost to meningitis 2/7/11

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Hunter My son Hunter was born on 1/11/11 at 11:44 in the morning. He was a beautiful baby boy. He weighed 4lbs 13 oz. He died 2/8/2011. We have had a rough pregnancy. Not only was I sick until I had him, My son was diagnosed with down syndrome at about 20 weeks. My boyfriend and I were alittle concerned concidering I was only 20, my boyfriend being 23 at the time of future health problems. We had started going to Portland Maine 3 times a week for health problems. They thought he was going to have heart and weight gaining problems. On December 20th 2011 I was addmitted to the Maine Medical Center due to my placenta ageing quick and my dopplers were high. They still thought with even putting me on bed reast he may still not make it and if he did would have server health problems. I was in the hospital for a total of 4 weeks. The day before we had him they said he wouldnt even weigh 4lbs but they had to get him out because my placenta was going. Then 1/11/11 at 11 in the morning, I was secdualed for my C-section. We had our beautiful baby boy, he weighed 4lbs 13 oz. And had NO HEALTH problems. And pushing 5 lbs. Strong little boy concerdering they didn't even think he'd be 4lbs. Now my son had to stay in countiuing care for 3 weeks due to he couldn't stay awake long enough to finish his bottle. He was 4 weeks early, they said this was normal. He was healthy as could be. We finally got to take him on January 30th. It was a Saturday morning. Everything had went great he had been alert and eating he was even looking at this fish tank with Daddy for a while looked happy as could be. Until 2 am that morning, we had to wake Hunter up every 3 hours to feed him, he wasn't due until 3. I figured he just woke up early hungry. He wasn't crying but wining. So I picked him up changed him and made him a bottle, he didn't want it at all. So I layed with him for a few minutes until he feel back asleep, I put him back. Not even till I reached the bed, he started wining again. So, I tried to feed him again. He still didn't want it. We contiued this till about 5am when he still wouldnt eat and was wining just until we picked him up, 3 weeks old, we didn't think he was already at the stage he just wanted to be held. We called the ER and took his temp at 8 am, he had a temp of 99 the doctor on call said not to worry give him a bath maybe he needs to go to the bathroom and can't so we did. He seemed to feel alittle better about 2pm he was back to being alert and hungry and his temp back down. However, at 2am that morning same thing repeated his temp now went to 100, now very consered we did the same thing but I called my Pedicaric Doctor at home. He said let him sleep till noon and wake him us and see if wants to eat and if his temp went back down. It did and he was fine again. But he wanted to get him right in the morning to make sure. We were only at Lilac City Peds for maybe 15 mintues. He wasn't too conserned but thought it was a UTI. Told us to rush to Maine Medical again because he only about 5 pounds we couldnt give him anything over the counter and that Portland is accipt to deal with babys of this size, and we were familor with Portland anyway. So we rushed to Portland. On the way he had started drouling and he was too young to be doing that, he also was turning red. By the time we got the ER my had already started seizing, which we found out later. He had so many doctors in and out, they didn't leave us alone for more than 5 minutes at a time. I was impressed. We had gotten to Portland at about 11 am that morning, by 6pm he had so many proceders done including a spinal tap. They had a bag on him to get a pee sample a huge johny on alittle guy, and an IV which we were used to anyway but this huge thing attatched to his arm to hold it in place. By this time he was already having seizers every 3 minutes. A woman from the Barbara Bush had came down to talk to us about what was going on. He was got bactrical meningitis. The doctor tried to assure us that he had not got it from home. He wasn't home for a whole 2 days. Filled with guilt, they rushed up to the NICU, where we meet our doctor who delieved him. Him filling us in to how saver it was. After 4 days of being there they finally figured out everything that was going on, he was too sick before to even go for a CAT. So once they did, they came to us with a picture of a normal brain and his. They said the black is bad grey is good. His brain was almost all black. The doctor informed us that he was saverly brain dead and didn;t even know who we were. He knew who we were! By Friday they let us now that it was too late to do anymore treatment and that we would have to make a decition come Monday morning to either stop feeding him or let him be a baby for the reast of his life. Come Monday, our doctor came in an assured us that there was nothing more they could do. He was dying. The seizers, strokes, and meningitis was too bad, it was taking him away from us. We did not have to make and decistions to not feed him he was going on his own. They didn't want to feed him because it was making him sicker. Gradually threw out the day his heart rate was fading. If it wasn't for that weekend, we are so greatful we knew what was going to happen, we got to spend his last moments with him. My boyfriend and I were able to spend the night because of the cercomstances. We had layed him down on the bed between us for a few hours just cuddling him. As we heard his breaths getting about 5 mintues apart between each. We kept assuring him he would be okay, and his pain would subside once he would pass. Then, Feb 7th at 11:44 pm he passed. That was his due date to begin with and the time he was born. He passed so peacefully. Our son was an angel now. He was my first and it's only been a month and a half now. We miss him so dearly but we know he's being taking care of now, no longer in any pain and being poked at. We love you Peanut!

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Christina - posted on 08/29/2011

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I am so sorry for your loss. How are you coping? Do you feel you have support? Is there anything I can do?? I hope you know that it is not your fault and I hope you get the encouragement and support you need and deserve.

Jennifer - posted on 06/25/2011

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HI, My 22 month old son passed away from bacterial meningitis on April 12, 2011. Your story is similar to ours except our boy died before being diagnosed so we had no clue what was wrong with him and the doctors and nurses just kept telling us he had the flu. My thoughts are with you, I know how horrible this journey is!

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