The Facts

Last day of the hospital

NICU Grad Clinic

Pediatrician visit (Ellie left, Rex right)

Rexy 

We were discharged from Primary's after five days. Discharge day was a little crazy because Daddy had to work. He was planning on coming up after work to pick us up as we were anticipating being discharged around 4 or 5. But after the doctors' rounds that morning they said they would let us go earlier. Then Rex's speech therapist in Orem called to tell us they had a cancellation and could see him at 2 pm that day. Long story short we didn't make it to speech therapy because things in hospitals take FOREVER and we didn't  have a car so grandma to the rescue.

Then Wednesday we had a pediatrician appointment and Thursday we had a NICU grad follow up clinic up at Primary Children's (again). This appointment was overwhelming for me. I've been trying to think of how I want to convey the information we received and I'm trying to figure out my thoughts and feelings about it all still. So I decided I will just write out the facts of the appointments and not go into my thoughts/feelings on them. That would literally take up pages and pages.

1. Ellie isn't gaining weight well and still has thrush and possibly silent reflux like Rex.
2. Ellie is probably teething. Which is ridiculous for a 3.5 month old, but not for a 7 month old.
3. Ellie's developmental assessment shows that she is right on track for a 3.5 month old (her adjusted age) and they expect her to not have any long term affects from her early birth.


4. Rex didn't gain any weight over his hospital stay.
5. Rex is visually impaired. We have a probable diagnosis of Cortical Visual Impairment (CVI), but they won't make it official until he is a little older and possibly had an MRI.
6. Rex is very high risk for Cerebral Palsy (CP). Again they won't make the diagnosis official until he is al little older, but they don't expect him to be able to sit independently until he is 18-24 months old. They also predict that his left arm and both legs will be severely affected by CP and his right arm will be somewhat functional.
7. After talking with his pediatric neurologist she believes his feeding difficulties are directly related to his brain trauma. Babies lose the sucking reflex at 3-4 months old and it requires more cognition to coordinate the suck, swallow, breathe pattern. The loss of this reflex plus his silent reflux is the best explanation we can come up with as to why he isn't able to take his feedings orally.
8. Rex has stopped taking any food by mouth since we came home from the hospital.
9. We are going back to see his old GI doctor to help us know when it is time to switch to a G-tube.


10. Obviously we knew shortly after Rex and Ellie's birth that all these things were possibilities. We are extremely lucky to have both our children and see them smile everyday.