NICU Diary - Day 4

Tuesday, October 10, 2000

Today was another busy day. First, I met my Grandpa Hostetler. He spent the day trying to help Mommy relax. With all of the concern for me, Dad's worried she needs some rest. She did, after all, just have a baby!


This morning, a pediatric genetics specialist examined me. He was a super guy and tried to help Mommy and Daddy understand what all of my abnormalities mean. He diagnosed me with Oculo-Auriculo-Vertebral Spectrum, also known as Goldenhar Syndrome and Hemifacial Microsomia*. Mommy and Daddy have only begun to learn things about what this means. They will be reading and learning a lot about it so that they can understand my unique qualities.


This afternoon at about 5:00 p.m., I was taken out of NICU to the University Hospital for an MRI. That was about a two-hour trip and was my first adventure outside the NICU since my birth. One of the neurosurgeons talked to Mommy and Daddy this evening about some of the preliminary findings from my MRI. He was primarily concerned with my spinal cord and central nervous system. I am a very challenging patient for the neuro doctors because of my small size. The preliminary findings look good, and Daddy still has hope that I might be able to play golf. Both the neuro and orthopedic doctors will have more detailed information tomorrow after my CAT scan, which is scheduled for 8:00 a.m.


My ENT doctor also stopped by this morning. They have me scheduled for my first surgery tomorrow afternoon at 4:30 p.m. They are going to test my airway to see if there is any blockage. Because my jaw is too small for my tongue to lie down, it will more than likely block my airway. Mommy and Daddy have already given the ENT consent to put in a tracheostomy if necessary. If I get the “trach” put in, I will have the breathing tube taken out of my throat. That will make me much more comfortable.


Today I also received a blood transfusion to help increase my red blood cells. This evening, I was taken off the bright lights and don’t have my sunglasses on anymore for jaundice. They also removed my catheter and started feeding me some protein and amino acids (TPN). Mommy and Daddy are hoping that the “nutrition” will get my bowels moving. There will be a big celebration over my first poopy diaper!

*Learn more from National Organization for Rare Disorders

Read from the beginning - Pete's NICU Diary - Day 1

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