NICU Diary Day 39

Updated: Jan 15, 2019

Tuesday, November 14, 2000

After much frustration on Monday, Mommy and Daddy finally got some answers to their many questions and, most importantly, they got to hold me for the very first time!!! Mommy cried and Daddy smiled a lot when they each held me. I LOVED being held because for once I was out of that darn ortho board and could have some relief. Daddy held me for a long time. He rubbed my back and that really felt good.


The Chief of Pediatric Orthopedics said Mom and Dad could hold me as long as my neck isn't extended very far forward. He also said that we should be able to tell if my C1 and C2 vertebrae are going to fuse together within a couple of months. He showed Mommy and Daddy the CT scan of where my C1 and C2 vertebrae have extra space between them.

The specialist feels that my vertebrae should fuse and be OK, but they have never had a 30-week preemie with these anomalies. If my vertebrae don’t fuse together, I will need to have spinal fusion surgery. He thinks that the prospect for my spinal cord to grow normally also looks good based on the MRI and CT scans. Hopefully, that means no scoliosis for me in the future.


The Chief of Orthopedcs takes care of other kids who have Goldenhar syndrome, so he is familiar with my uniqueness. He'll be following my development about every six months. In the meantime, orthotics is working on another new ortho board for me. We are hoping to have it sometime tomorrow.

I was completely off the ventilator for 30 minutes while Daddy held me, and I did just fine. The doctors have a new strategy for my vent weaning. I'm going to be off the ventilator for 30 minutes four times a day and gradually increase the time I’m off the vent every 24 hours. This way I get more breaks instead of having to go so many consecutive hours like I was before.


The neonatal docs also took some time to review my “overall plan” with Mommy and Daddy. The priority is to get me off the vent. In addition to that “little breathing on my own issue,” I will be getting occupational therapy to see if I can learn how to suck and swallow. I suck a little bit right now, but I’m not very strong. I also need to learn to swallow before I can take a bottle.


The speech therapist showed Mommy and Daddy a bottle called a Haberman Feeder that's designed for babies with cleft palate. The bottle was developed by a mother who had a baby just like me (small jaw with cleft palate). We are hoping that I will learn how to eat with this bottle so that I won’t need a feeding tube through my nose or stomach.


Three things need to happen before I can come home: 1) breathing on my own, 2) keeping down enough nutrition through either a bottle or tube, and 3) released with a plan to keep my neck stabilized. Orthopedics will run another set of X-rays to see how my vertebrae are growing. They will also develop a different brace that stabilizes my neck but enables me to be transported in a car seat, dressed, bathed, etc.


There is a slim chance that I might arrive home just in time to be Mommy and Daddy’s extra special Christmas present this year!!!


P.S. I got a blood transfusion tonight to help with my anemia, so I’m feeling much better now!


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