He has eaten twice and has done really well both times so I know he knows how to do it. He took 30 ml the other day when his full feed is 40 ml 75% is exactly where he needs to be. Unfortunately he's supposed to be eating several times a day. Instead, he sleeps through the feeds. It is the most frustrating experience I've ever gone through.
The apnea issues are even more concerning. His heart rate doesn't drop so theyre not the typical A and B spells that come with prematurity. Something is causing him to do this. They thought he was sick so they gave him antibiotics only to have all tests come back fine. Then they thought it might be seizures but his head ultrasound came back fine (thankfully they didn't make him have the MRI, since they'd have to sedate and intubate him to do it). John and I keep telling everyone that we think he's just overstimulated but they keep discounting our opinions.
We reached a breaking point last night when they decided to treat him for infection again though test results really show no indication. They told us they were going to stop feeding him, and were going to do urine, blood, and spinal cultures again. John kept insisting they at least feed him, and thankfully they listened to that part. When questioned about their reasoning they give BS answers such as "we dont think the apnea is because of overstimulation because he had several episodes today when nothing was happening." This is complete horseshit because I spent 8 hours with him before they made this decision and every single episode was initiated by something--from having his position changed, or even from straining to poop. Then when we try to tell them our point of view and everything we've observed, they just get backed into a corner but do what they want anyway. I'm sick of these docs thinking they can pull the wool over our eyes because they assume we're like 75% of the other NICU parents who are hardly present. They need to listen to us because we've spent the most time with him. They always say they want the parents to be involved, and say the parents are the experts, but whenever we try to share our thoughts they try to find excuses as to why our ideas aren't the cause.
So this morning John was all over the place with apnea. The OT came to check him out. I really like her...I call her the baby whisperer. She observed his behavior in his crib and when I tried to feed him. She says he is acting really agitated and anxious and that he's not falling asleep when I try to feed him, he's playing possum because he's too overwhelmed. She says he doesnt like being touched and isn't trusting anybody when theyre handling him. She listened to my theories and 100% agreed with me. She doesnt think his apnea is a medical issue, she thinks it's psychological. The feeding issues seem to be related. She is going to develop a care plan for him, and is going to work with us for the next few days to see how he responds. She advised that I do skin-to-skin more to see if that helps him feel more comfortable. We haven't done much of it since he started feeding training because we're always just working on eating.
I held him skin to skin for 4 hours today and he did not have any apnea spells. When 2 o'clock (feeding time) rolled around he was wide awake and started rooting so we tried eating again. He didn't eat a ton, but he gave it a good effort and ate 10 ml before falling asleep.
The docs are going to stop antibiotics tomorrow unless one of his cultures comes back with growth. For now it appears to be another false alarm. In the meantime I have to snuggle my naked baby close and try to calm him down since he's so freaked out by all of these procedues they've been doing.
I'm so mad at his doctors right now, I could scream!
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