Today was a more relaxing day. Jonathin and I made sure to make it to rounds this morning, cause it was "new doctor day." We now have our last doctor's wife, and wow they are different. She didn't think Luke was ready to turn down the vapotherm, instead we started inhaler steroids. We are also getting a x-ray in the morning, just because we haven't had one in a while. This x-ray may lead to a daily regime of diuretics if his lungs look "wet." This will help with his casual "desatting" hopefully. We were also planning on starting formula at 38 weeks gestation, which would be Sunday. However, she would like to wait till 40. I might ask about that tomorrow, because I want him to be as comfortable as possible when we go home. I would like most of the bugs out of the system before we leave. I think Luke is finally getting used to the big boy crib. He didn't have any bradys today, which is great. They always leave me tense when they happen. It is just a preemie thing, I know, but still. He did drop his oxygen once today while Jonathin was holding him. That doesn't sit well with me, but that is just him. I notice a lot more little things Luke does now since he is out of the box. I never really realized he would get red and push his food back up his tube some, or that Luke doesn't cry. Every once and awhile he will let out a noise, but in all honesty, crying isn't a big thing for him. The nurses are calling him the "golden child" of the module. He doesn't cry, he isn't needy, he just hangs out. Not to mention, I think they like it that we are there a lot to take care of him. Finally with the crib I feel like a mom of a baby, not a boxed up surprise. I can love on him and take care of him like we are home, but still be surrounded by help. I pretty sure the next step is for us to start learning more of his feeding tube care. I'm comfortable with pushing his food and caping off the tube when we hold him. However, now we need to learn to place the tube and check placement. I did this in school, but it is a little different now since it isn't a dummy, it is our child. Jonathin seems a little iffy on the idea, but if he plans on going home it is a must. The nurses are ready for me to learn how to mix his formula also. This isn't your typical "just add water" formula. Luke has donor milk, then protein is added at the pharmacy before it is shipped to us. Once it is in the room, they measure it out for his daily feedings and add more power for the extra calories. There are A LOT of little packages that go into the one bottle. I will have to add this at home. Right now he is still getting 27 calorie, but when we go home we will probably be on 24 calorie. That reminds me, Luke's feedings once again went up today to 42 cc's every 3 hours. This is due to his weight gain to 4 pounds and 10.5 ounces. Hopefully we have another good day, and have a good x-ray in the morning. We are in the home stretch, which might seem like the longest. We are on day 78, I would love to be home by day 110 but I don't want to push him...
Jordan
Just for kicks I wanted to see where Emery was at on day 78 (I honestly couldn't remember.)
ReplyDelete*We had talks about doing a trach.
*He was still on the vent, had just moved off the conventional and to the jet since they felt he'd be intubated much longer.
*The goal was to be home 3 months post dates (he was due March 27 - so due home end of June... and ended up staying a month longer than that.)
*He weighed 4 pounds 9-1/2 ounces.
* He was getting 32 mL of 30 k/cal enhanced breast milk with vitamins.
*50% O2 - I can't find his settings anywhere. I think by this point I stopped keeping track.
*Ursodiol was discontinued.
Luke is doing great! Inhaled steroids actually helped Emery grow really well. You guys are right on track for going home soon. And you'll will become super stellar at the NG. You'll be the one that everyone on the floor comes to in years to come because you know all of the tricks of the trade.