Here is the update from the Millers. It's just such a waiting game isn't it? Just not a FUN game of any sort!
The specialist has decided that Seth's problem is due to a volume of milk problem rather than this bacterial problem. So Dr. Brady (the specialist) said they would increase Seth's probiotics and take him completely off of antibiotics. Only problem is she never told the doctor about increasing the probiotics, so Seth doesn't have an order for that.
As for the volume problem, she said that he would eat from a bottle during the day, and get a continuous drip from a feeding tube during the night. She said that if that works, then once he's off of IV fluids he could go home like that--I would just have to learn how to put the feeding tube in, and I'd have to bring home a machine that can do the continuous drip.
Andrew and I don't think it's a volume problem--we think it's a bacterial problem. So now that Seth is off of antibiotics, we are waiting for everything to fall apart again. I suppose we'll know in the next day or two.
Seth is growing well, though. At 11 weeks old, and almost 2 weeks adjusted age, he is 7 pounds, 14 ounces.
Tuesday, August 31, 2010
Thursday, August 19, 2010
Going home in a week or two MAYBE....HOPEFULLY!
Here is the latest from Jamie. Pray pray pray and pray some more that Seth will be able to come home within the next week or two! The Millers SOOO need to all be together as a complete family each and every day! Keep fighting Seth! Soon you can come home!
Okay, so Seth had another setback. Took him off of antibiotics, and things started falling apart again--diarrhea, blood in his stool.. he didn't want to eat at all. So we cut his feedings again, and called the specialist. So Seth saw an infant gastrointestinal specialist yesterday. She said that his problems are most likely from the overgrowth of bacteria (interobacter) that his antibiotics can't get rid of. So she's put him on a better antibiotic (flagyl), and he'll be on that for 21 days. She also said he needs to be on breastmilk (hooray!!! she doesn't think he's lactose intolerant! My continued pumping has not been in vain!). So he started eating again today at 10 ml (about 2 teaspoons), and they're going to move that up slowly but I don't know how slowly--I haven't been able to talk to the doctor yet. So Dr Brady (the specialist) said that if he does well eating breastmilk, then in 7-10 days, so long as he's off of his TPN (IV fluids), he can go home, and will finish the antibiotics at home. Wow! I'm almost afraid to get my hopes up yet again, but as always, can't help myself! I am gearing up for him to come home next weekend! We painted the kids bedroom downstairs, and now have their bunk bed moved down there! I've been using the steam vac on their carpet down there, and wow--it is DIRTY! So we're getting them all moved so we can start setting up Seth's room! So exciting! Okay, that's today's update!
Okay, so Seth had another setback. Took him off of antibiotics, and things started falling apart again--diarrhea, blood in his stool.. he didn't want to eat at all. So we cut his feedings again, and called the specialist. So Seth saw an infant gastrointestinal specialist yesterday. She said that his problems are most likely from the overgrowth of bacteria (interobacter) that his antibiotics can't get rid of. So she's put him on a better antibiotic (flagyl), and he'll be on that for 21 days. She also said he needs to be on breastmilk (hooray!!! she doesn't think he's lactose intolerant! My continued pumping has not been in vain!). So he started eating again today at 10 ml (about 2 teaspoons), and they're going to move that up slowly but I don't know how slowly--I haven't been able to talk to the doctor yet. So Dr Brady (the specialist) said that if he does well eating breastmilk, then in 7-10 days, so long as he's off of his TPN (IV fluids), he can go home, and will finish the antibiotics at home. Wow! I'm almost afraid to get my hopes up yet again, but as always, can't help myself! I am gearing up for him to come home next weekend! We painted the kids bedroom downstairs, and now have their bunk bed moved down there! I've been using the steam vac on their carpet down there, and wow--it is DIRTY! So we're getting them all moved so we can start setting up Seth's room! So exciting! Okay, that's today's update!
Monday, August 16, 2010
It's not over yet...please keep praying!
Below is the update from Jamie Miller. Sorry for a delay in updates. We went on a family reunion. Our life keeps going on...all the while the Millers continue in the waves of uncertainty with little Seth. I think many of us think that if we are 'forgetting' about Seth and the Millers that must mean that they are all doing great! Unfortunately that is so not true though. They have to keep fighting. Keep hoping. Keep going back to the hospital faithfully everyday knowing that once again they will have to leave their baby there. He does great...hopes are high...then something else goes wrong and hopes are dashed and tears are cried and faith is tried some more. Please keep praying for the Millers. While our lives may keep twirling and whirling just fine theirs is not. They still need our prayers at least. And if we have any more money to give their gas guzzling van could really use the support as they continue to make daily trips to the hospital 45 minutes away that is until Drew and Joseph start school again all too soon!
Well, Seth is doing really well. Almost ready to go home--the only thing stopping us now is he is a bit anemic again, and his stools are a bit loose with an occasional speck of blood in it.
The anemic thing might not be a problem--on Tuesday they're going to check his blood again to see if he has immature red blood cells. If he does, then his body is working on the problem. If he doesn't, he'll probably get another blood transfusion. Either way.. not a HUGE deal. Easy to deal with.
The stool thing is more of a concern, since these were the issues when he had his really bad night (oh, and speaking of his bad night.. I talked to his nurse last night, and he was working the night that Seth got really dehydrated (but he wasn't his nurse that night) and lost 12 ounces. He said it was a pretty big deal--there were 6 people in his room all night. And he said if the doctor calls verses the nurse.. then it's a pretty big deal. Kinda glad I didn't realize how serious things were at the time. They later told us that his potassium was dangerously high.. to the point that he could have started to have heart arrhythmia). They just put him on mylanta for his acid reflux (which he has really bad), and apparently that can cause loose stools.. so they've taken him back off, and now we're waiting to see if that makes a difference. They've stopped increasing his feedings until we can get his stool regulated again--so he's at 35 ml until things start to straighten out, and then we'll start going up by 5 ml/day again. Once we can start increasing his feedings again, he'll need to be somewhere in the 40+ ml range before he can go off of IV fluids.. once we do that, and he's tolerating everything, and growing.. then he can go home! Currently he's on a special formula that you have to order through the pharmacy, called Elecare. His doctor would like to start switching him back to breastmilk soon, in hopes that he'll be able to tolerate it, so that would be good!
When he goes home he'll probably go home on a monitor because he still has bradycardia. Most of his heart rate drops are due to the acid reflux, but I don't think all of them are. He'll also probably go home with some sling thing to keep him elevated in bed because of his acid reflux, but that isn't for sure yet. I'm just assuming it's bad enough that they'll want to do that.
That's the update! Hopefully things will get resolved soon. We're so close!
Well, Seth is doing really well. Almost ready to go home--the only thing stopping us now is he is a bit anemic again, and his stools are a bit loose with an occasional speck of blood in it.
The anemic thing might not be a problem--on Tuesday they're going to check his blood again to see if he has immature red blood cells. If he does, then his body is working on the problem. If he doesn't, he'll probably get another blood transfusion. Either way.. not a HUGE deal. Easy to deal with.
The stool thing is more of a concern, since these were the issues when he had his really bad night (oh, and speaking of his bad night.. I talked to his nurse last night, and he was working the night that Seth got really dehydrated (but he wasn't his nurse that night) and lost 12 ounces. He said it was a pretty big deal--there were 6 people in his room all night. And he said if the doctor calls verses the nurse.. then it's a pretty big deal. Kinda glad I didn't realize how serious things were at the time. They later told us that his potassium was dangerously high.. to the point that he could have started to have heart arrhythmia). They just put him on mylanta for his acid reflux (which he has really bad), and apparently that can cause loose stools.. so they've taken him back off, and now we're waiting to see if that makes a difference. They've stopped increasing his feedings until we can get his stool regulated again--so he's at 35 ml until things start to straighten out, and then we'll start going up by 5 ml/day again. Once we can start increasing his feedings again, he'll need to be somewhere in the 40+ ml range before he can go off of IV fluids.. once we do that, and he's tolerating everything, and growing.. then he can go home! Currently he's on a special formula that you have to order through the pharmacy, called Elecare. His doctor would like to start switching him back to breastmilk soon, in hopes that he'll be able to tolerate it, so that would be good!
When he goes home he'll probably go home on a monitor because he still has bradycardia. Most of his heart rate drops are due to the acid reflux, but I don't think all of them are. He'll also probably go home with some sling thing to keep him elevated in bed because of his acid reflux, but that isn't for sure yet. I'm just assuming it's bad enough that they'll want to do that.
That's the update! Hopefully things will get resolved soon. We're so close!
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