Well we did indeed get spring from UVA last Thursday. While we still love our UVA family, it was time to GO! Our biggest test we had to pass before going was learning how to put the feeding tube in. My second try at putting in the ng tube went like this:
ME: ok I'll try again.
NP Carol: You'll do...
ME: I'm done!
NP CAROL:...fine.
Second time is a charm it turns out, for me. Brian was a pro from the beginning as we all expected. And because we found a smaller width tube, Molly doesn't really mind it at all. Phew. So instead of putting it in and taking it out every night, we just leave it in. Saves all of us some stress.
So we got our kit of parts for the ng tube (pole, pump, stethoscope and more supplies than you'll ever need) and it's quite easy to set up and use. Frankly it's a lovely backup net to have and we're all a lot less stressed because of it. With that said, MOLLY HASN'T EVEN NEEDED IT since day two home!! They say that they eat better at home, but I didn't really believe them because Molly has never followed conventional wisdom. It goes to show that when I'm all into the tube, Molly decides she doesn't want it anymore. And she's even been eating a bit over her mar. So go eater! Brian and I have spent the last few days just dumbfounded at how easy it is to feed a healthy(ier) baby. They just eat!!? Within a half hour!!? Of course she has the typical feeding distractions and gas and such. But geez. This. Is. Easy.
We also have a home nurse coming in a few days a week to make sure she's doing well and most important...growing. So far so good. From Friday to Monday, Molly gained 5 oz! As a comparison, Molly gained 6oz all of last month. Yes, month. She's coming back tomorrow so we can confirm that she wasn't just needing to have a 5oz poop or something.
And most of all this is a major indicator of her health improving. It turns out a healthy baby eats. At least a healthy Molly does. Right after surgery when we went up to see her I remember feeling her feet and they were warm. The doctors said it's an indication that her heart is actually pumping blood now to where it needs to be. A few days later I actually asked the doctors to check her out to see if her feet were too warm (I'm crazy town). I remember the doc looked at me and said, "Well, I guess you'll have to get used to what a baby should be like." It took us about 2.5 seconds this time to adjust to her eating well.
Go Molly go!
Oh and hospital pics to come soon on Facebook!
Baptism this weekend too so cute dress pictures to follow.
Tuesday, July 12, 2011
Thursday, July 7, 2011
Going home
Most likely today, and if not...definitely tomorrow. Woo!
We're back on the general pediatrics floor here at UVA. It made us nervous to leave the PICU since they monitor much more closely (and would have caught the whole kidney failure thing that the floor docs neglected to catch), but things have been rolling fine. We asked to stay in the PICU and they agreed if they didn't need the bed space. Well this was on the 4th of July. And guess what happens on the 4th of July? People blow their hands off with firecrackers. And not just people, but kids. So they had multiple traumas come in and we were bumped. Oh well. We got bumped back to a private room, so we can't complain.
Molly is still eating better than she ever has. But it just hasn't been as much as the nutritionists want her to eat. So we're going home with an ng tube (feeding tube through her nose and down into her stomach). We'll be bottle feeding her during the day (count those fucking calories!) and whatever she doesn't take will get put down the tube at night. We hope this is only temporary as Molly has been eating 80-90% of what they want her to eat. We're hoping that last 10-20% will come once she's back home and less stressed out by general hospital antics. We hear this is often the case. But in the meantime we don't have to worry about her not getting enough nutrition to heal and play catch-up growth. She's still only 8 1/2 pounds, so every bit helps.
If we go home today or tomorrow depends on how fast we learn how to put the ng tube in. I tried yesterday and it's not as easy as you would think. Turns out that hole at the back of the nose is hard to locate. Round 2, though, is in a few minutes. It's sad because she clearly hates it, but it's not as sad as when we had to give her the lovanox shots for her blood clot. So the methods that UVA sends us home with to torture our daughter are getting less and less severe.
Otherwise she's still doing great. Smiles at everyone who comes in (until they try to touch her), has discovered her feet and has no major organs failing anymore besides her heart (though the surgery we're here for seems to show promise for that too!). Win? We'll take it.
We're back on the general pediatrics floor here at UVA. It made us nervous to leave the PICU since they monitor much more closely (and would have caught the whole kidney failure thing that the floor docs neglected to catch), but things have been rolling fine. We asked to stay in the PICU and they agreed if they didn't need the bed space. Well this was on the 4th of July. And guess what happens on the 4th of July? People blow their hands off with firecrackers. And not just people, but kids. So they had multiple traumas come in and we were bumped. Oh well. We got bumped back to a private room, so we can't complain.
Molly is still eating better than she ever has. But it just hasn't been as much as the nutritionists want her to eat. So we're going home with an ng tube (feeding tube through her nose and down into her stomach). We'll be bottle feeding her during the day (count those fucking calories!) and whatever she doesn't take will get put down the tube at night. We hope this is only temporary as Molly has been eating 80-90% of what they want her to eat. We're hoping that last 10-20% will come once she's back home and less stressed out by general hospital antics. We hear this is often the case. But in the meantime we don't have to worry about her not getting enough nutrition to heal and play catch-up growth. She's still only 8 1/2 pounds, so every bit helps.
If we go home today or tomorrow depends on how fast we learn how to put the ng tube in. I tried yesterday and it's not as easy as you would think. Turns out that hole at the back of the nose is hard to locate. Round 2, though, is in a few minutes. It's sad because she clearly hates it, but it's not as sad as when we had to give her the lovanox shots for her blood clot. So the methods that UVA sends us home with to torture our daughter are getting less and less severe.
Otherwise she's still doing great. Smiles at everyone who comes in (until they try to touch her), has discovered her feet and has no major organs failing anymore besides her heart (though the surgery we're here for seems to show promise for that too!). Win? We'll take it.
Sunday, July 3, 2011
Who needs the beach and picnics and fireworks anyway?
Well this marks the 3rd holiday that we'll be spending here at UVA. Valentine's Day and St Patty's Day being the first two (hey at least we got Easter out). We're working on 3 months in and 2 months out of the hospital for Miss Molly girl. A sad percentage, but one we hope to fix really soon.
We were working on discharge either Sunday or Monday. For those of you counting that's today or tomorrow. Well Molly had other plans. So we got moved to the general pediatrics area of the hospital to work on feeding. The docs also wanted a few more days to tweak her medications before going home. Molly was going strong on feedings, then about 3 days ago hit a wall. And the wall hit her back. She went from eating 80 to 90% of what they wanted her to to 25%. It was really sudden and getting her to eat was a huge struggle. She kept this on for about 36 hours. We began having discussions about putting the tube back in, which was depressing because she was doing soooo well.
Brian and I began thinking up every reason in the book why this could have happened. At the same time we noticed her heart rate had dropped across the board about 20 points. We weren't sure if it was the pacer modifications or what. We thought the eating issues could be teething, thrush, sore throat...
Finally the morning came (Saturday) that the cardiologist came in. This was one we hardly deal with being the weekend and all. When I started giving him my list of reasons why she might not be eating, he cut me off and said she was just a crappy eater and that we were going home with the tube. Not only did he tell me that teething was "a myth", but he also said if something was wrong with her heart beat being lower, she would look sick. Which she didn't. Smiling away as usual.
So the nurse brought in the tube and we were prepared to just deal with it. Literally 5 minutes before the tube was going to be put in, one of the docs comes in to say that they need to recheck a blood level because it came back really high and they were sure it was a mistake but needed to recheck for their records. Then about an hour later, the same cardiologist came in and told us the level was not a mistake. It turns out Molly's potassium levels skyrocketed from dehydration and as a result her kidneys were failing. They moved us back to the PICU and immediately began giving her fluids and stuff to flush potassium. Fortunately she started responding right away. After a day of this, we're happy to report that her potassium is down (now too low and they are giving her more potassium...seriously) and her kidneys are functioning again. And guess what? Her heart rate has gone back to normal AND she's eating again. And not just eating, but ravenously eating. Full feeds eating. So suck it doctor who blew me off and told me she is just a bad eater.
Of course the inevitable "will they make her too wet again" is an issue. And one we have been vocal about. We're hoping they just let us cut and run before something else happens.
In the midst of all this craziness, they stopped one of Molly's meds that is a bit hard on the kidneys. Last night they discussed putting her back on Milrnone (aka fucking Milrinone) if she couldn't go back on the enalipril. So they did bloodwork this morning to check her BNP to make the call about enalipril or not. This led to our best news of the day...to recap, BNP is a marker of heart failure. The higher the number, the worse the failure. While the numbers themselves don't mean anything specific, in general zero is best and the farther you get from zero is not good. Molly's was 3200 on admit. 15,000 post-surgery. 2500 a week ago. And now? 135! Yup. Not a typo. 135. We're not sure what this means as far as her function yet because they haven't done an echo in over a week, but it's a really good sign. Hopefully they'll do an echo tomorrow and we can see what's going on in there.
So the ups and downs and ups continue. I think Brian and I are the only parents who are happy to go back to the PICU from the general floor. Molly is now doing great AND we get our much comfy in-room bed back.
So Happy 4th. We hear that we'll have a good view of fireworks from our hospital room. Molly does like looking at lights so we consider it a win.
We were working on discharge either Sunday or Monday. For those of you counting that's today or tomorrow. Well Molly had other plans. So we got moved to the general pediatrics area of the hospital to work on feeding. The docs also wanted a few more days to tweak her medications before going home. Molly was going strong on feedings, then about 3 days ago hit a wall. And the wall hit her back. She went from eating 80 to 90% of what they wanted her to to 25%. It was really sudden and getting her to eat was a huge struggle. She kept this on for about 36 hours. We began having discussions about putting the tube back in, which was depressing because she was doing soooo well.
Brian and I began thinking up every reason in the book why this could have happened. At the same time we noticed her heart rate had dropped across the board about 20 points. We weren't sure if it was the pacer modifications or what. We thought the eating issues could be teething, thrush, sore throat...
Finally the morning came (Saturday) that the cardiologist came in. This was one we hardly deal with being the weekend and all. When I started giving him my list of reasons why she might not be eating, he cut me off and said she was just a crappy eater and that we were going home with the tube. Not only did he tell me that teething was "a myth", but he also said if something was wrong with her heart beat being lower, she would look sick. Which she didn't. Smiling away as usual.
So the nurse brought in the tube and we were prepared to just deal with it. Literally 5 minutes before the tube was going to be put in, one of the docs comes in to say that they need to recheck a blood level because it came back really high and they were sure it was a mistake but needed to recheck for their records. Then about an hour later, the same cardiologist came in and told us the level was not a mistake. It turns out Molly's potassium levels skyrocketed from dehydration and as a result her kidneys were failing. They moved us back to the PICU and immediately began giving her fluids and stuff to flush potassium. Fortunately she started responding right away. After a day of this, we're happy to report that her potassium is down (now too low and they are giving her more potassium...seriously) and her kidneys are functioning again. And guess what? Her heart rate has gone back to normal AND she's eating again. And not just eating, but ravenously eating. Full feeds eating. So suck it doctor who blew me off and told me she is just a bad eater.
Of course the inevitable "will they make her too wet again" is an issue. And one we have been vocal about. We're hoping they just let us cut and run before something else happens.
In the midst of all this craziness, they stopped one of Molly's meds that is a bit hard on the kidneys. Last night they discussed putting her back on Milrnone (aka fucking Milrinone) if she couldn't go back on the enalipril. So they did bloodwork this morning to check her BNP to make the call about enalipril or not. This led to our best news of the day...to recap, BNP is a marker of heart failure. The higher the number, the worse the failure. While the numbers themselves don't mean anything specific, in general zero is best and the farther you get from zero is not good. Molly's was 3200 on admit. 15,000 post-surgery. 2500 a week ago. And now? 135! Yup. Not a typo. 135. We're not sure what this means as far as her function yet because they haven't done an echo in over a week, but it's a really good sign. Hopefully they'll do an echo tomorrow and we can see what's going on in there.
So the ups and downs and ups continue. I think Brian and I are the only parents who are happy to go back to the PICU from the general floor. Molly is now doing great AND we get our much comfy in-room bed back.
So Happy 4th. We hear that we'll have a good view of fireworks from our hospital room. Molly does like looking at lights so we consider it a win.
Subscribe to:
Posts (Atom)