[tri-wings] Re: Hi I just joined~long!

Hi Barb,
I too am sorry for your loss. Thank you for your reply. I'll try to sum up 
Jamin's story as short as I can its pretty long.

Jamin was born with bilateral cleft lip and palate, 1 dilated kidney, and we 
later found out Tetralogy of fallot (a heart condition). We did not have a 
good experience with the doctors at all. As soon as he was born (I was with my 
sister during labor and delivery) the nurse took him over to the warmer then 
came back only a few seconds later to say well Tiffany he took his first breath 
and cried but it looks like that is all he is going to do. We all started to 
cry but then we heard him crying and my sister said that's bull he is crying so 
I went to him and sure enough he was crying,moving,and fighting. I told the 
nurse he is fighting then I ran to my sister and told her that's when the nurse 
came back to tell Tiffany that he was having trouble breathing and did she 
want to help him with some oxygen? My sister had already explained over and 
over 
before he was born what she wanted done! Yes, she wanted him to have what any 
normal baby would get!! We had to give him blow by oxygen but he was requiring 
less and less. My sister wanted him to go to the NICU where he could be 
monitored. They asked her if she wanted him fed she got furious she said of 
coarse 
I want him fed I told you to treat him like any other baby like he doesn't 
have Trisomy 13! To sum it up my sister had this constantly so she continued to 
stress she does not want to hear what the percentages were that it was all in 
God's hands not theirs or hers and she wanted to keep him alive and not live 
everyday waiting for him to die. He left the hospital at 3 days old like any 
other baby and off of oxygen his levels were good but she had to beg to take 
home 
monitors and oxygen for just in case. They wanted to know why like she was 
crazy she said because if he stops breathing I want to know and if he needs a 
little ox to get his levels up I want to do that too just like a normal baby 
would get that was having a little trouble breathing.
After Jamin came home he was doing really good his breathing was better. He 
ate,slept,pooped,peed,looked around, heard noises, and smiled like any other 
baby. He was strong! He drank a bottle despite his bilateral cleft. Then he had 
a couple of episodes where he quit breathing. Tiffany gave him ox and called 
911.
 When it really turned bad was 2 days before he died my sister said  he was 
having a lot of trouble breathing we thought it was his heart because the ped 
cardiologist had been giving her a run around. Then Jamin had another episode 
of central apnea and my sis couldn't get him breathing on her own the ambulance 
came and got his ox level from 8 to 40 in no time. The hospital said the 
difficulty breathing was either RSV or pneumonia. They were running tests and 
treating with antibiotics. Then he had another episode of central apnea but 
this 
time his heart stopped. My sister was holding him I had just left the hospital 
thinking he was doing so much better they had just moved him out of ICU into a 
regular room. The hospital called me and told me to come back my sister 
needed me but they wouldn't tell me what happened. It was awful! I have 3 kids 
of 
my own my youngest is 3 months older than Jamin. I had high hopes that they 
would grow up together. I still see his cute little face in my head. I keep 
seeing him looking up at me when I kissed him the last time before I left the 
hospital. This is soo hard for me I couldn't imagine how hard it is on my 
sister. I 
loved him like my own and the smallest thought of losing one of my kids sends 
me into an awful whirlwind of pain so I don't think I could handle it. I 
don't know if we will ever get over this but we will try to just take it day by 
day and hope God will give us the strength to just think of the good that came 
from this....We did get to meet Jamin and love on him for 5 weeks and now he is 
in Heaven where there is not pain,poverty,crime, and all is innocent. One day 
I believe we will meet again! Like my daughter said at his funeral Jamin is 
now free to be whatever he wants to be!

Stacy


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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