The Bertils Family

Crookston, MN
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Name
Julian Bertils
Injury/Illness
Infant-Related Illness

Julian was born on August 30th in Crookston, MN. Shortly after his birth, at two days old, we were sent to Sanford Hospital in Fargo, ND as he hadn't passed his meconium. We spent 4 days in the PICU while they tested for Hirschsprung disease and cystic fibrous. He was diagnosed with meconium ileus. We were able to go home and he seemed to be doing better and started to gain weight. When he was 7 weeks old he became extremely fussy. We took him back to our family doctor and he suggest it could be colic. He went from a baby that slept and ate, to one that would hardly sleep and it was a battle to feed him. At the end of October, we discovered he had an inguinal hernia. We went back down to Sanford Hospital in Fargo, ND on November 30th for his bilateral inguinal hernia surgery. After his surgery he seemed to get worse instead of better. Extremely fussy and went from sleeping in 2-3 hour chunks to sleeping no more than 45 mins at a time and was barely consuming 15-17 oz of formula a day. After another trip to our family doctor in December, we were sent back down to Sanford in Fargo where he was hospitalized for 5 days due to failure to thrive and was diagnosed with reflux. He had dropped just below 9 lbs and was losing weight. We were discharged on 21st once he had shown weight gain, but once we were back home, feedings and sleep were still a struggle, even while being on his antacids. At his four month check up on the 30th, we discovered he had only gained .2 lbs. Feeling defeated and emotionally exhausted, our family doctor suggested we come to Children's Hospital in Minneapolis for further treatment. After a long 4 1/2 hour drive, we rang in the New Year in his hospital room here, and we will remain here until we can get answers as to why he continues to not thrive and gain weight. He struggles to breathe most of the time and they have determined he has laryngomalacia and are looking to schedule surgery for tomorrow to scope him as well as fix the laryngomalacia at the same time. He is currently being feed through an NJ tube to ensure he is getting the nutrients he needs and to help ease the reflux. Our 6 year old son is at home with Grandma and Grandpa while we are down here with Julian. We are very thankful to everyone at Children's for all they've done for our sweet little boy. We are praying that we will be able to get answers and begin on the path to healing and recovery.

January 12, 2021
Julian Bertils
1/12/2021: As of today our little guy has been through so much with not many answers. He did have this laryngomalacia surgery last Tuesday and seems to be healed from that. His breathing and strider has gotten better but his weight is still at 9 lbs 6 oz. For a 4 month old, this should be closer to 13 pounds. He had gained some weight but once we tried to decrease the NJ feedings and go back to more bottle feedings, he lost all the weight he had gained. We've met with the neurology team and after his MRI, they discovered that he has Chiari Malformation I. We don't know how much or little the Chiari is causing problems for Julian. We've also spoken to Genetics and multiple blood and urine test have been sent off. It will take 2-3 weeks to get these back. The geneticist believes Julian's issue to be neurological. We are also going to meet with the GI doctor as after every bottle feeding he becomes irritable and extremely fussy. We are praying to get answers soon for JP as it is so hard to see him struggling with his feedings, weight gain and just not being comfortable.