It’s hard not to get upset by having another “backwards day” in regards to feedings by mouth. Gideon is allowed to have 3 feedings by mouth per day but he’s only allowed 10 minutes per try, 15 at the absolute most if he’s doing really well. He should be eating about 60 ml between his 3 oral feedings and today, he totaled 7 ml. Seven. That’s all. It was VERY disappointing. I tried not to get upset about it though realizing it was a rough day, we didn’t really get any sleep last night, we were tired, and for some reason, he just wanted to chew on things today. The occupational therapist checked for a tongue tie which he does not have (thank goodness), for some reason, he was just being very lazy chewing rather than sucking to actually get milk from anything.
I was really disappointed but decided to focus on the positive things from the day instead.
– We calculated all his calories lost from his by mouth feedings and made up for them in his tube feedings.
– He had a stable day with heart & lungs.
– I had a great meeting with some management and nursing staff here that was very reassuring.
– He got a ‘wedge’ today to help with his position while sleeping. They had just raised the head of his bed but he would sink down into the crack and his head is so big, he needs some additional head support too so he got his wedge and a head roll to help his airway while sleeping.
– He maintained fantastically off of the high flow air.
– He graduated from an ultra preemie nipple to a preemie nipple on his bottle
– He gained 25 grams!!!!!!!!!!!!!!!!!!!! 25 grams!!!!!!!!!!!!!!! Yesterday he had gained 5 grams, today, 25! YESSSSSSSSS. This is very exciting for me.
– He has the sound of boogers. He’s been suctioned 3x today and got a little bit out but not all that I can hear in there. Boogers are what caused his huge setback last Saturday and got him put on the high flow air. He can’t afford to have boogers so please pray his airway remains completely clear and any boogers or obstructions would be cleared. Also that his O2 saturation would remain the same as it has been.
– Pray for improved cardiac output and rhythm. He’s done very well today but still throws some wonky things from time to time and I would like his rhythm to be perfect, as perfect as it can be for having a complete AV Canal Defect that has yet to be repaired. :)
– That his by mouth feedings tomorrow are successful. That he will use his tongue the way he should to actually suck from the bottle not just chew on the tip of it and get no milk. That he gets fat! :)
– Rest for tonight for everyone in our room. I slept for 2 hours last night and got about a 15 min nap in today so hopefully he will behave very well as will the little gal in the room with us so we can all sleep peacefully all night long.
That’s a lot of prayers! Thank you for being specific with us to pray for the best for him!
This is his crib. The ‘wedge’ is quite a monstrosity of a thing. That won’t even come close to fitting in his co sleeper at home… we have to get creative with a safe sleeping option for him.