Words cannot describe the mess we've had to put up with in the last few days. It turns out that John was never sick, and unfortunately we have no idea what caused the ordeal in the first place.
Here's what happened: His temperature dropped, his digestion slowed, and then he started having more apnea. They put him on a warming bed, stopped his feedings, shoved a big tube down into his belly for 3 days, ran tests, gave him IVs until all of his good veins were gone, and threatened to run more tests. His tests for infection (the likely culprit of it all) came back negative. He was requiring more and more stimulation to come out of his apnea and oxygen desaturation fits, and was twitching a little in his sleep. Fearing that he was having seizures, they ordered an MRI and were going to transport him over to Primary Children's Hospital for it yesterday morning.
Here's what I think was going on: He was having a bad day. He swallows a lot of air, and some nurses have not been venting out his belly after each feeding (they don't get burped yet). His belly swelled up, he was in pain, and then he had a hard time keeping his temperature up. After they vented out the air, he was feeling better, and became uber responsive to the crap they were doing to him. I could see how badly he was in pain with the IVs and venting tube. Sick babies are too sick to care about these things, but John was pissed! He was holding his breath and twitching because he was in distress, and when the nurse was stimulating him right away it made him even more upset. After they pulled out the tube and started feeding him again, he was still desatting, but that blasted nurse was still jumping the gun and pounding him on the back every time he started dropping. I finally told her to leave him alone and that he'd pull out of it on his own, and I was right. Within a day, and after getting a different nurse, he was feeling much better. They dressed him and put him back in his bed, and they bumped him right up to his full feedings. He has been doing fantastic ever since. Now my views are not based on any medical training whatsoever, but I have a pretty strong feeling about it. I know my baby way better than the ever revolving staff.
Because of his improvement, they cancelled the MRI at the last minute and ordered another brain ultrasound for this Thursday. If anything looks off, they'll go ahead with an MRI. They did a chest xray to make sure his heart and lungs look good since he's still on a tiny bit of oxygen at 36 weeks (this is usually when they don't need oxygen anymore). Everything looks clear on that. He is still getting a little chilly in his crib, but the nurses are good at bundling him way up to keep him from getting too cold. Low body temperature can be catastrophic...first their digestion stops, and everything else goes downhill from there. I honestly don't know if he's really getting cold. They take his temperature in his armpits, but he always has his arms up over his head so they tend to be cooler than they should be. They do the temporal scanner or a rectal temp, and his temp is always fine. Then the nurses sit and debate over which temperature location should be the most accurate. It's totally frustrating.
So now that he's feeling better, we're back where we left off--nursing training. Yesterday he pretty much slept through his 11:00 feeding, and was too sleepy to do much during the 2:00. He thinks it's funny to just have it in his mouth and not have to work. He opens up for it, smiles a bunch once he has it, then goes to sleep. I don't blame him, he has no idea that he needs to get his own food since he's been fed through a tube for 2 months. The occupational therapist wants me there for more feedings each day since I'm usually only there for the 11:00 feeding. I agree, since it's going to be impossible for him to learn just practicing once a day, but it is really difficult to be there more because of the other two kids. I think I have it worked out for the next few weeks so I can be there for 3 feedings, and hopefully that's all we'll need. The trick is to be there in the evening since he has decided that 5:00 is the time to be wide awake. Big John went to visit him last night, and sure enough he was wide awake and had been playing in a bouncy seat like a big boy.
It's going to be a rough few weeks for me. I was finding it hard to be there for more than 4 hours, and now I'm going to be hanging around from 10:00-6:00. I pray I can keep what is left of my sanity, and my husband and kids can hang in there without me around as much (and my crabbiness when I am there). We all just have to focus on the goal though. We want this baby home!
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