He is truly a miracle baby!

Jenny Butler, Jacob's mom

Jacob was a full term baby born in June of 2015 weighing in at 5lbs 15.9oz. He was very tiny with long skinny arms and legs and appeared to be a very healthy and perfect little baby boy.

It wasn’t until later in the day on Jacob’s second day of life that something just didn’t seem right. He was quite fussy and his respirations were a bit elevated. Lab work was ordered and done with his Newborn Screening. When the lab results came back, they indicated an elevated C reactive protein (CRP) level and Jacob was admitted into Bronson’s Neonatal Intensive Care Unit (NICU) that night as a precaution to monitor his symptoms.

Little did anyone know at the time that this would be the start of Jacob’s 83 day NICU journey. Jacob was a very sick little baby and at first the doctors really didn’t know why. He was on multiple antibiotics as he had sepsis, his platelets were very low, his CRP levels were still elevated and he started to have blood in his stools. He was not able to have anything by mouth for the first several weeks so all nutrition came through IV only.

Numerous tests had been ordered throughout his time in the NICU. He had a lumbar puncture, several abdominal ultrasounds, x-rays of his colon, upper GI’s with small bowel follow through, a Mekel scan and a rectal biopsy. Lots of blood work and cultures were done as well. Test results from the Mekel scan were consistent with Necrotizing Enterocolitis, but even after he had the normal protocol for treatment, he continued to have issues with his stomach and bowels. He had a hard time keeping anything down for very long once he started eating again. The rectal biopsy indicated that Jacob had Hirschprungs Disease.

Jacob had surgery a few days shy of 5 weeks old. He had a rectal pull through surgery called a Soave Procedure to correct this, however during this surgery it was discovered that he had a lot of adhesions on his small bowel that needed to be removed and a portion of his small bowel had in fact necrotized and had to be cut out and reattached. After about a week, Jacob was able to start feeding again only to realize he was still having issues and was now losing weight. A pediatric GI was called in and ran some tests. After several attempts, they found a formula that Jacob was able to tolerate and his weight finally began to increase.

When Jacob was discharged he weighed a little over 9 ½ pounds and was 9 days shy of 3 months old. He was diagnosed with necrotizing enterocolitis, low birth weight for a term baby, malabsorption, gastroesophageal reflux, and iron, vitamin D and protein deficiencies.

Today, Jacob is a healthy, growing and active little boy. He has come so far over the past few years that it’s almost hard to believe he was ever so sick and tiny. He is truly a miracle baby!

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