Baby James fight for life.
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Meet Andrew, Katie, Wesley and James. Their life just got flipped all around from the moment little James was born. He was due to enter this world October 2nd. He surprised everyone by coming 2 weeks early on September 20th. Weighing in at 6 lb 14.5 oz he was beautiful and perfect. He was having some issues with his tummy being a little gassy, distended and his white blood count was elevated. They ran some tests and gave him antibiotics. He was discharged on September 24th. They managed about 3 hours home. Diaper change brought terror when there was blood in his stool. Rush him back to the hospital, ER ran tests, had trouble getting the IV in and getting the blood not to clot before it reached the lab so he was stuck multiple times. Pediatrician came back in to the ER to perform a lumbar puncture on him. They decided he needed to be sent to Nemours Children’s Hospital.
He and Katie were transported in the ambulance while Andrew went home to get stuff packed for them. They ran more tests, were thinking maybe umbilical cord infection or GI tract infection. There was an IV inserted and a picc line in his leg for nutrition. Nothing by mouth for the foreseeable future. Evening of the 25th he stopped breathing on them. Got put on oxygen to remind him to breathe. Drainage tubes to remove anything from his stomach. Finally started turning the corner, white blood count down, no more bloody stools. Figured infection in his intestines. Got discharged October 8th. Yay, finally the family is all together again. Time to settle into life with a newborn.
October 20th, he is officially 1 month old now. Here we go again...his tummy was distended, wouldn’t eat and was pale and lethargic. Plans to run him up to the ER as it’s Sunday. He gets paler and more lethargic so they call 911. Local paramedics can’t take him to Nemours but checked him over and felt he was stable enough to be driven. Off Katie and her mother go while Andrew stays behind to take care of Wesley and get him to school in the morning. Phone rings, things are not great so big brother gets brought over here to grandma and grandpas and Andrew heads to the hospital.
They found air in his abdominal cavity so they need to get in there immediately. He vomited, aspirated and coded on them. They did CPR for 22 minutes before finally getting him back. Couldn’t finish the surgery so his intestines were outside his body in a special bag. Tried to get lines in but with all the meds from CPR his arteries were to constricted. Called in the specialist, got one in his artery but couldn’t get the picc line in. They had to put in a subcutaneous line in his chest. Risk was it could puncture his lung but he needed that line for nutrition. That was a success thankfully. He has had multiple fluids...nutrition, meds, blood etc pumping into him constantly and his kidneys aren’t working as well as they should so he is swollen all over. They are watching him for aspiration pneumonia and checking to make sure there was no lasting damage from him coding for 22 minutes.
Diagnosed with NEC. They were able to restart his surgery Oct 23rd. Found herniated mesentery with a hole almost the size of a quarter. His small intestines went through and stuck, bunch of places twisted and weakened. Results were they had to remove 52cm of his small intestines, leaving him with 60cm. He can live with only half is small intestines but it will be a nutrition struggle always. He is in critical but stable condition. Bowels back in abdominal cavity but he is not sewn up as they have to go back in to put in colostomy bags. 3rd surgery Oct 25th, got the colostomy bags placed and his tummy sewn back up. He will have the bags at least 3 months. If all goes without issue he will be in PICU for 4-6 weeks more. It has been a hard first month of life for him but he’s proving to be a fighter.
They have a 9 year old along with baby James. Mom is staying with James at the hospital and Dad is driving back and forth daily so he can take care of big brother. There are many expenses in all this they simply can not afford. I am asking for help for them. The last thing they should have to worry about right now is finances. There are bills, fuel going back and forth to the hospital daily which is 40-45 mins away, food for mom while she’s there and dad and big brother at home. There are supplies they will have to get to be able to deal with the colostomy bag for months. The family has been taking care of everything since James was born but we can’t sustain that for the next couple of months. Any help would be appreciated beyond measure.
He and Katie were transported in the ambulance while Andrew went home to get stuff packed for them. They ran more tests, were thinking maybe umbilical cord infection or GI tract infection. There was an IV inserted and a picc line in his leg for nutrition. Nothing by mouth for the foreseeable future. Evening of the 25th he stopped breathing on them. Got put on oxygen to remind him to breathe. Drainage tubes to remove anything from his stomach. Finally started turning the corner, white blood count down, no more bloody stools. Figured infection in his intestines. Got discharged October 8th. Yay, finally the family is all together again. Time to settle into life with a newborn.
October 20th, he is officially 1 month old now. Here we go again...his tummy was distended, wouldn’t eat and was pale and lethargic. Plans to run him up to the ER as it’s Sunday. He gets paler and more lethargic so they call 911. Local paramedics can’t take him to Nemours but checked him over and felt he was stable enough to be driven. Off Katie and her mother go while Andrew stays behind to take care of Wesley and get him to school in the morning. Phone rings, things are not great so big brother gets brought over here to grandma and grandpas and Andrew heads to the hospital.
They found air in his abdominal cavity so they need to get in there immediately. He vomited, aspirated and coded on them. They did CPR for 22 minutes before finally getting him back. Couldn’t finish the surgery so his intestines were outside his body in a special bag. Tried to get lines in but with all the meds from CPR his arteries were to constricted. Called in the specialist, got one in his artery but couldn’t get the picc line in. They had to put in a subcutaneous line in his chest. Risk was it could puncture his lung but he needed that line for nutrition. That was a success thankfully. He has had multiple fluids...nutrition, meds, blood etc pumping into him constantly and his kidneys aren’t working as well as they should so he is swollen all over. They are watching him for aspiration pneumonia and checking to make sure there was no lasting damage from him coding for 22 minutes.
Diagnosed with NEC. They were able to restart his surgery Oct 23rd. Found herniated mesentery with a hole almost the size of a quarter. His small intestines went through and stuck, bunch of places twisted and weakened. Results were they had to remove 52cm of his small intestines, leaving him with 60cm. He can live with only half is small intestines but it will be a nutrition struggle always. He is in critical but stable condition. Bowels back in abdominal cavity but he is not sewn up as they have to go back in to put in colostomy bags. 3rd surgery Oct 25th, got the colostomy bags placed and his tummy sewn back up. He will have the bags at least 3 months. If all goes without issue he will be in PICU for 4-6 weeks more. It has been a hard first month of life for him but he’s proving to be a fighter.
They have a 9 year old along with baby James. Mom is staying with James at the hospital and Dad is driving back and forth daily so he can take care of big brother. There are many expenses in all this they simply can not afford. I am asking for help for them. The last thing they should have to worry about right now is finances. There are bills, fuel going back and forth to the hospital daily which is 40-45 mins away, food for mom while she’s there and dad and big brother at home. There are supplies they will have to get to be able to deal with the colostomy bag for months. The family has been taking care of everything since James was born but we can’t sustain that for the next couple of months. Any help would be appreciated beyond measure.
Organizer
Carrie Nelson Ouzts
Organizer
Titusville, FL