NICU - Part 1

This is the first in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Before you ask, I am writing this now for a couple reasons. 1) So I can move on. The first four months of Channing's life sucked and I'd like to get over it. 2) So I can remember and be thankful for everything that Channing is and does.

Also, this is Channing's story from my perspective alone. MG's version would probably be a lot different. However, he's read it and signed off on it.

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .

Three Words
Up until this point, we thought Channing was a normal, healthy albeit very premature baby. All the screening tests and ultrasounds I had throughout my pregnancy were normal.

Two days after Channing was born, I was sitting in her room in the NICU by myself. Her nurse came in and said “The Dr. is on the phone, he wants to talk to you about Channing’s head ultrasound”. I asked the nurse if she had a brain bleed. Brain bleeds are common among very premature babies and that’s what they are looking for with the ultrasound. Her eyes fell to the floor and she shook her head slightly, no. I knew something wasn’t right. I took the phone and all I remember from the conversation were three words “abnormal brain structures”.

There aren’t words to begin describe how I felt at that moment. A part of me died right then and there. I couldn’t even comprehend to ask the Dr. more questions or have him explain what this could mean for her. He asked if I wanted to meet with him to discuss and I said no. He said she needed a CT scan to confirm. I consented. I called Matthew in tears and mumbled something like “There is something wrong with her brain”. He rushed to the hospital (remember we were moving that day) and met with the doctor alone. I couldn’t face the doctor.

After the meeting, MG was walking to find me and I was walking to find him. I finally found him on a bench on one of the sky bridges. He had his phone in his hand. I knew he was googling the condition they said she had. I knew one thing; I definitely did not want to google anything. MG attempted to relay the information from the doctor to me. They said she had a condition called holoprosencephaly.

This is a congenital brain defect where the right and left hemispheres of the brain fail to divide in the early weeks of pregnancy. This fusion causes a wide range of problems from seizures, hydrocephalus, growth, feeding and breathing issues and developmental delays. There is no cure, no treatment, no medication.

They said they thought she had a mild form. The word mild was the only thing I took from the conversation with him. I clung to that word for dear life for three months. Kids with the severe form usually die within a couple months of birth, if they are even born alive. Kids with the moderate form fair slightly better but are still severely disabled with a shortened life span. Mild kids generally live longer but still have lots of motor and cognitive problems. One of the hallmarks of this defect is severe facial deformities. Not all kids have them but most do. I looked at her face for hours searching for the telltale signs of this brain defect.

Part Two tomorrow.