Update 26

THINGS ARE GOING WELL

Well, Thaddeus has been out of the hospital for five days now and things are going very well. We have not had a problem adjusting to giving him his meds. Having him attached to oxygen tubes everywhere he goes has been a bit of a challenge. However, a very challenging part so far has been the simple lack of sleep. He is supposed to eat every three hours. Generally he likes to go about two and a half. He tends to eat less each time and eat more often than our other children did. So, you can do the math. He likes to eat about every two and a half hours and it takes about a half an hour to feed him, that leaves about two hours in between to sleep. Dede has been doing more of the actual feeding at night while I tend to take care of getting bottles ready, doing the meds and such. That way I get more running around, but I get to go back to sleep sooner. I am still exhausted all day long. You can imagine how Dede feels! However, it doesn't bother us as much as you might think, because of the simple fact that OUR BABY IS HOME!

The doctors want him gaining about 25 grams per day. So far he has been averaging close to 50 grams per day. They also want him eating a minimum of close to 400 cc's of formula. He has been averaging close to 500. He is wiggling around quite a bit. He even lifted his head and turned it to the other side while he was lying on me yesterday. I know that doesn't sound like much, but for a baby who had open heart surgery a few weeks back, that is a very good developmental sign. We even hooked up the portable oxygen and took him on a trip. So far everyone involved could not be more pleased with his progress. The only disappointed ones are his brothers who can't wait until he is old enough to play with. Charlie is having a great time holding and feeding him and has been a fantastic help to us.
Our visiting nurse has been here twice already. She seems very nice. I for one was comforted knowing that she served as an ER nurse for about a decade before doing this. We have also seen the pediatrician in FDL and that went well. Next week Dede will take Thaddeus back down to Milwaukee for another check up. We are also trying to set up an appointment with the lady from the birth to three program. Thaddeus is at risk to develop learning disabilities, or at least developmental delays. The birth to three program is designed to watch for signs of a problem and if any are seen, to start early intervention. (The previous lesson in my graduate class on learning disabilities was on the importance of early intervention.The Lord works in mysterious and some times not so mysterious ways.)
So all in all we totally underestimated how much time and effort it takes to deal with all of the medical calls and appointments, but it is made easier knowing what great progress Thaddeus has been making.
The worst part of the entire thing though, isn't the almost daily reports to medical personal, or the total lack of sleep, or the dirty diapers, (times two remember, although Quintin did pee in a child potty chair for the first time today) it is dealing with the insurance companies. Granted I'd rather deal with the mixed up bills and the multiple half hour phone calls rather than have no insurance, but it is no picnic. The worst part is that about when we get it all straightened out, the new budget plan will change everything again. Sigh. Well, somehow the time has gotten away from me again and I best sign off before I fall asleep on the keyboard.

Night all.

26 B:

JINX!

Is it just me or do things change right ever I send an update? Apparently I spoke too soon. Thaddeus had a light eating day yesterday and lost around 60 grams. After going up around 50 grams a day for the first few days, he slowed down, and now is actually at a loss for the past three days average. Say a prayer that he pigs out today and gains some grams because I really don't want to have to re-admit him. In fact how about a prayer that I lose some weight and he gains some. That would be even better!

By the way, as a side note, for those of you who are getting these updates by way of forwards, if you look at the bottom there is a button for update your profile. Clicking on this will allow you to add yourself to the subscription list if you so desire. We can use all the prayers we can get.

I did break down and pay the big bucks for the video monitor. We found out that you can even hook it up to the TV and watch and listen on the TV. The kids like watching Thaddeus TV and it has been a great comfort to us, especially since he is so quiet and the oxygen compressor is so loud, it helps to be able to see him as well as hear.  

 

26 C:

His weight is up!

He gained enough weight yesterday to make up for Friday's loss and still come out 16 grams ahead. Thanks for the prayers!