I am 29 my baby boy Bentley Michael Sakel is in Children's Hospital of Pittsburgh of UPMC
fighting for his life and FINALLY started taking formula by feeding tube a few days ago he kept rejecting it and throwing it up and now went from 15 units up to 20 units of it a day without throwing it up but when I went to see him a few days ago they tried giving him 25 and he threw it up :(
it was only the second time since he was born on the 19th that I got to even hold him since he has had so many complications from being so premature because of his mother's heart condition....
my girlfriend/baby of my child Brittany Mancini (age 23) and love of my life was in Washington hospital for 10 days in a completely separate hospital which she has only got to hold him twice since he was born 6 weeks early on the 19th of Nov.
she is still trying to recover from emergency open heart surgery that was done to replace her tissue/valve on the aeortic valve of the heart,( aerotic valve tissue replacement surgery
the nurse (the only nurse/doctor that I didn't ask to run test on for her legs being so swollen), which I consider an angel, heard her coughing in the middle of the night just hours before her planned discharge from the hospital and took the time to take her for a chest x Ray which found the heart problem. Which we had no idea about but explains her extreme fatigue/falling asleep, extra swollen legs which are Still retaining allot of fluid and the coughing/short of breath which we were told and thought was just from her carrying our baby.....we were told by the surgeon that she would of definitely died if my baby was carried the full term (9 months) and possibly even my boy or if the nurse wouldn't of caught it she would of slowly bled out over the next few weeks at home and I would of found her dead when I came home from work one day :(...
she is recovering but is battling a bad blood infection on top of everything else so please keep my baby and my girlfriend in your thoughts and prayers. We can't emphasize the appreciation we have for all the support people have given us even if it's just a simple I'm sorry message or saying prayers for us it helps us keep going and keeping the faith in God that everything will be ok
~my baby girl Brittany Mancini just got discharged FINALLY from Washington hospital and has home/traveling nurses, physical therapist`s, and social workers visiting all the time. The nurses put her anti-biotic in her pick line (iv that runs straight to her heart) and they also draw blood from her heart to keep running tests on her blood so that the infection doesn't spread anymore. My parents took us to see Bentley last night and it was the first time she got to hold him since her open heart surgery over a week ago (before that she only got to hold him once after birth).....he is gonna be in Children's hospital for an undetermined amount of time and is not gaining any weight, actually is loosing weight :( it's gonna be a long rough road until she gets the pic line out and able to lift over five pounds and is going to be a long time (hoping not) before we get to have our baby Bentley home with us which we have to have home care for the baby as well which we would have to pay out of pocket for that which is gonna be tough since she got denied short term disability from her employer (Cvs) and I had to put my work completely on hold and have lost many jobs I was going to start or look at because of me having to go from Washington hospital where she was for 10 days and then bouncing back and forth to children's hospital in Pittsburgh where our baby was/is since the 19th until an undetermined amount of time and our rent is due plus all our bills have been pilling up.
If anyone could help in any way even if it's only a couple dollars to help get us through this winter until she can get back to work hopefully/possibly disability from social security (which takes 6 months to a year) and is not helping us get through right now, thats if she even gets approved. ANY help would be GREATLY appreciated by my entire family ....thanks for all the continued support and prayers!! :-) :-)
Ben Sakel , Brittany Mancini, and our precious baby boy Bentley Michael Sakel
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