We had to go and get the remaining shots today thankfully these aren't the nasty ones that make him sick. He's got a slight fever but other than that he's fine. Gave him some Tylenol and he'll be good to go in a few hours. Not like the last set of shots. The nurse said it was probably the pertussis (whopping cough) that caused his severe reaction to it last time.
Synergis is more of a medicine than a vaccine but it keeps them from getting RSV so I'm all for it :). He never has a bad reaction to that shot.
He weighed in at 9lbs 12 ounces today so he's nearly 10 lbs! He's definately a growing boy :).
I just uploaded some new photos of him on flickr. Hope everyone is doing well and we're just trying to rest and grow bigger ;).
Tuesday, March 24, 2009
Saturday, March 14, 2009
3-14-2009 Zachary Update
Whew.. it's been a busy, tired, crazy past few weeks.
To update you all :) I think I posted after his first pedi appt being the first 5 days he was home. He weighed in at 7lbs 15 ounces. He'd gained nearly 10 ounces since he'd been home in 5 days that was stellar.
So 2 weeks later (being this week) he had the high risk clinic appointment (all preemies go there after their hospital stay to evaluate if a regular pedi is ok or if he needs to be seen by them too). So he weighed in there at 8lbs 9 ounces on Tuesday. That's an average of 26 g per day. Their goal for him was 20 g so he's doing a lot better than they ever hoped.
Then today we had his second pedi appt (Friday) and he weighed in at 9lbs 3 ounces. So that's 10 ounces in 3 days! Needless to say he's a crazy good eater rofl.
Overall, not much to report other than his reflux issues have somewhat gone away. I've stopped giving him the meds as he didn't seem to need them anymore. I'm not seeing any adverse effects of doing so if anything no more low-grade fevers. The acid in your stomach really does fight off infections very well. He can't afford to not have it. I'll take the chances with reflux (that he really doesn't have much anymore). The milk that splashes up doesn't have acid in it so he should be fine.
Today he had his 4 months shots (not all of them I'm slowly graduating them after last time). Well once agian within an hour he started apnea on me THANK god I had the monitor on him. I had to take him to a lab to get his blood drawn and just as I'm getting him to the door his apnea monitor went off that'd he'd stopped breathing. I stimulated him and he came right back (sigh). I told the Doctor this was going to happen he swore up and down Zach should be fine now that he's older. Mind you he was supposed to get 2 more shots and I only got the absolutely necessary ones. Like the pneumonia one (I agree he really did need that one regardless the consecquences) he gets pneumonia he can die or be hospitalized up to a year easy and we don't want that. But it seems it's the PDT combo shot that's messing him up badly. The last time I couldn't tell which one it was but I doubt it's the pneuomonia one since he didn't get that last time and the only one he got both times was the PDT one. MMR used to give Alexis a lot of problems and I don't even want to know how badly that's going to mess him up.
So I get into the lab and expect they're just going to do a heel prick and take a little vial like they did in the hospital. No they hook his arm up and take 4 adult sized vials. Needless, to say I almost flipped. I was like listen he had problems in the hospital when they took 1/20th that amount and you think this is going to be ok. They're like he'll be fine! Well I tell you they better hope so after all he's already been through that day or I'm soo going to be up in their business!
So while I'm driving him home his apnea monitor went off 4 more times! Talk about giving me a heartattack. To boot it was very wet and raining out. At one point when he didn't start breating I had to swerve through 3 lanes of traffic nearly causing an accident to pull into the Sams by our house so I could stimulate him to get him breathing again. I rushed him upstairs as soon as I got home and put the oxygen on him. He hasn't needed that but 2x in the first couple days when he came home. Even then we did it just as a precaution he really didn't need it.
Once he had the oxygen for about an hour he was good and I was able to take it off. He's had to be held just about all night due to not feeling well. Sadly in 2 weeks I have to go back to give him his next couple shots. Though the synergis he didn't have a reaction to last time so we should be good. The Hep B shouldn't be too bad either (I hope).
He's got his circumsicion appointment next Thursday and I'll be taking the oxygen just in case. He'll probably have fewer problems with that than those stupid shots.
He hates his multivitamin and almost always throws it up. I am starting to wonder if he really even gets any of it. Sad thing is he needs it for the vitamin D that doesn't pass in breastmilk. We've got the Early Childhood Intervention people starting work with him now. He almost didn't qualify (which is a good thing). But the continued problems with bottlefeeding (he won't take a bottle at all now). There are times I need to go and do stuff like our friends are getting married etc when I can't be home for several hours. Also, there are some gross motor skills things he should be soon trying to do and he's not quite there. Technically he's gestationally 5 weeks old and it's amazing he's testing at a cognitive level of a 3 month old. He normally wouldn't be doing half of those gross motor things they want him to for antoher 1-2 months. So anyhew they're going to start working on some simple gross motor skills with him. I figure it can't hurt :) He'll sit and watch Baby Einstein videos for an hour + or play with his Baby Neptune floor gym for an hour and get mad when you turn it off, it ends or you pick him up. So, if I had to pick things for him to work I'd MUCH rather it be gross motor skills rather than the cognitive part.
I've finally had to put up all his preemie clothes they were getting way too tight. A lot of his newborn clothes are getting too small too. So I've broken out the 0-3 months clothing. Most of that is still pretty big on him but at least it's not too tight.
So it's been a rough day. Thankfully, we've had almost all wonderful days and very few rough days. I'll keep udpating as there are significant thigns to note :)
To update you all :) I think I posted after his first pedi appt being the first 5 days he was home. He weighed in at 7lbs 15 ounces. He'd gained nearly 10 ounces since he'd been home in 5 days that was stellar.
So 2 weeks later (being this week) he had the high risk clinic appointment (all preemies go there after their hospital stay to evaluate if a regular pedi is ok or if he needs to be seen by them too). So he weighed in there at 8lbs 9 ounces on Tuesday. That's an average of 26 g per day. Their goal for him was 20 g so he's doing a lot better than they ever hoped.
Then today we had his second pedi appt (Friday) and he weighed in at 9lbs 3 ounces. So that's 10 ounces in 3 days! Needless to say he's a crazy good eater rofl.
Overall, not much to report other than his reflux issues have somewhat gone away. I've stopped giving him the meds as he didn't seem to need them anymore. I'm not seeing any adverse effects of doing so if anything no more low-grade fevers. The acid in your stomach really does fight off infections very well. He can't afford to not have it. I'll take the chances with reflux (that he really doesn't have much anymore). The milk that splashes up doesn't have acid in it so he should be fine.
Today he had his 4 months shots (not all of them I'm slowly graduating them after last time). Well once agian within an hour he started apnea on me THANK god I had the monitor on him. I had to take him to a lab to get his blood drawn and just as I'm getting him to the door his apnea monitor went off that'd he'd stopped breathing. I stimulated him and he came right back (sigh). I told the Doctor this was going to happen he swore up and down Zach should be fine now that he's older. Mind you he was supposed to get 2 more shots and I only got the absolutely necessary ones. Like the pneumonia one (I agree he really did need that one regardless the consecquences) he gets pneumonia he can die or be hospitalized up to a year easy and we don't want that. But it seems it's the PDT combo shot that's messing him up badly. The last time I couldn't tell which one it was but I doubt it's the pneuomonia one since he didn't get that last time and the only one he got both times was the PDT one. MMR used to give Alexis a lot of problems and I don't even want to know how badly that's going to mess him up.
So I get into the lab and expect they're just going to do a heel prick and take a little vial like they did in the hospital. No they hook his arm up and take 4 adult sized vials. Needless, to say I almost flipped. I was like listen he had problems in the hospital when they took 1/20th that amount and you think this is going to be ok. They're like he'll be fine! Well I tell you they better hope so after all he's already been through that day or I'm soo going to be up in their business!
So while I'm driving him home his apnea monitor went off 4 more times! Talk about giving me a heartattack. To boot it was very wet and raining out. At one point when he didn't start breating I had to swerve through 3 lanes of traffic nearly causing an accident to pull into the Sams by our house so I could stimulate him to get him breathing again. I rushed him upstairs as soon as I got home and put the oxygen on him. He hasn't needed that but 2x in the first couple days when he came home. Even then we did it just as a precaution he really didn't need it.
Once he had the oxygen for about an hour he was good and I was able to take it off. He's had to be held just about all night due to not feeling well. Sadly in 2 weeks I have to go back to give him his next couple shots. Though the synergis he didn't have a reaction to last time so we should be good. The Hep B shouldn't be too bad either (I hope).
He's got his circumsicion appointment next Thursday and I'll be taking the oxygen just in case. He'll probably have fewer problems with that than those stupid shots.
He hates his multivitamin and almost always throws it up. I am starting to wonder if he really even gets any of it. Sad thing is he needs it for the vitamin D that doesn't pass in breastmilk. We've got the Early Childhood Intervention people starting work with him now. He almost didn't qualify (which is a good thing). But the continued problems with bottlefeeding (he won't take a bottle at all now). There are times I need to go and do stuff like our friends are getting married etc when I can't be home for several hours. Also, there are some gross motor skills things he should be soon trying to do and he's not quite there. Technically he's gestationally 5 weeks old and it's amazing he's testing at a cognitive level of a 3 month old. He normally wouldn't be doing half of those gross motor things they want him to for antoher 1-2 months. So anyhew they're going to start working on some simple gross motor skills with him. I figure it can't hurt :) He'll sit and watch Baby Einstein videos for an hour + or play with his Baby Neptune floor gym for an hour and get mad when you turn it off, it ends or you pick him up. So, if I had to pick things for him to work I'd MUCH rather it be gross motor skills rather than the cognitive part.
I've finally had to put up all his preemie clothes they were getting way too tight. A lot of his newborn clothes are getting too small too. So I've broken out the 0-3 months clothing. Most of that is still pretty big on him but at least it's not too tight.
So it's been a rough day. Thankfully, we've had almost all wonderful days and very few rough days. I'll keep udpating as there are significant thigns to note :)
Thursday, February 26, 2009
2-25-2009 Zachary Update
Today was Zach's first Pediatrician appointment. They got us back quickly so Zach wouldn't be exposed to germs lord knows the Pedi office is a germ nightmare.
The doctor reviewed the discharge paperwork and we went through everything. Basically, a lot of follow-up appointments with specialists. They weighed him and he's 7lbs 15 ounces, he gained 10 ounces since he's been home that's 2 ounces a day! Honestly, that's crazy awesome gain. The last few weeks at the hospital he was lucky to gain 5 grams a day if not lose. Tells me he wasn't getting enough at the hospital, which doesn't surprise me since they were trying to force the bottle on him. He's 20 inches now too so he's sprouted quickly. I was pretty sure he was going through a growth spurt with all the cluster feedings but now he is for sure.
His adjusted age is 3 weeks old (ie 43 weeks). So he's doing pretty darn well weight wise for his adjusted age.
The doctor agreed with me for taking him off the Reglan. He's been a MUCH better baby since we got him off that awful crap. He's more focused, not antsy during feeds anymore, he just seems more "there". Also, a lot less sleepy. The doctor discussed weening him off the prevacid soon too. That, I'm thinking he kinda does need atm so until he starts solids I'll keep him on it. He's worried about there not being enough acid in the stomach to kill off bacteria which is a valid concern. He's not convinced the reflux is as bad as the doctor was making it seem (I agree). From looking at the radiology report from the upper GI they did it was not significant reflux and minor at best.
So it was a really nice visit, we'll go back in 2 weeks for a follow-up and blood work to make sure all his levels are in check. Preemies have a host of blood work issues that only labs can tell.
He's doing well now at day 6 at home. He sleeps 2-3 hours feeds well sometimes even goes back for seconds :P. We're slowly working in a bottle or 2 so that when Grandma needs to watch him in a few weeks he'll hopefully take it. He's been refusing the bottle since he's been exclusively breastfed at home. That's not always good because we have to give him his vitamins in milk and his other medicine in milk rofl. I've resorted to putting the vitamins in peppermint tea lol that masks it JUST enough that he'll drink it down pretty quickly.
I'll keep you all posted on his progress and update the photos as I have time :)
S
The doctor reviewed the discharge paperwork and we went through everything. Basically, a lot of follow-up appointments with specialists. They weighed him and he's 7lbs 15 ounces, he gained 10 ounces since he's been home that's 2 ounces a day! Honestly, that's crazy awesome gain. The last few weeks at the hospital he was lucky to gain 5 grams a day if not lose. Tells me he wasn't getting enough at the hospital, which doesn't surprise me since they were trying to force the bottle on him. He's 20 inches now too so he's sprouted quickly. I was pretty sure he was going through a growth spurt with all the cluster feedings but now he is for sure.
His adjusted age is 3 weeks old (ie 43 weeks). So he's doing pretty darn well weight wise for his adjusted age.
The doctor agreed with me for taking him off the Reglan. He's been a MUCH better baby since we got him off that awful crap. He's more focused, not antsy during feeds anymore, he just seems more "there". Also, a lot less sleepy. The doctor discussed weening him off the prevacid soon too. That, I'm thinking he kinda does need atm so until he starts solids I'll keep him on it. He's worried about there not being enough acid in the stomach to kill off bacteria which is a valid concern. He's not convinced the reflux is as bad as the doctor was making it seem (I agree). From looking at the radiology report from the upper GI they did it was not significant reflux and minor at best.
So it was a really nice visit, we'll go back in 2 weeks for a follow-up and blood work to make sure all his levels are in check. Preemies have a host of blood work issues that only labs can tell.
He's doing well now at day 6 at home. He sleeps 2-3 hours feeds well sometimes even goes back for seconds :P. We're slowly working in a bottle or 2 so that when Grandma needs to watch him in a few weeks he'll hopefully take it. He's been refusing the bottle since he's been exclusively breastfed at home. That's not always good because we have to give him his vitamins in milk and his other medicine in milk rofl. I've resorted to putting the vitamins in peppermint tea lol that masks it JUST enough that he'll drink it down pretty quickly.
I'll keep you all posted on his progress and update the photos as I have time :)
S
Monday, February 23, 2009
2-22-2009 Zachary Update
I'm happy to report Zachary is doing well. He's breastfeeding 100% of his feeds and won't take the bottle even if I try. He knows he can get boob so wants nothing to do with the bottle. Sometimes I just try to give it to him if I've pumped off thinking he's done. He'd rather try to eek out a little of what's left instead.
He seems more awake, alert and just overall in better condition since he's been home. He doesn't make any more sad noises and he's back to his normal self with the happy noises and laughing a lot more. He's smiling a lot more too. Seems very interested in his environment and loves all the toys etc we have for him. He especially loves his floor gym it's a Baby Neptune Baby Einstein floor gym with all sorts of toys and things to look at it is good for tummy time and back time. (I attribute a lot of this since I've taken him off the Reglan it seemed to really affect him mentally).
I was reading about breastfed babies last night and come to find out the act of breastfeeding does all the things Reglan is supposed to do. Starts the parastalsis type movements to get food moving and emptying of the stomach faster. I already was trying to get him off of it but I just stopped it completely after I read that. Ie. no weening should be necessary because he wasn't on it long and breastfeeding is doing what Reglan was supposed to do. So I was correct in thinking he didn't need it. Funny how the doctor NEVER mentioned that. Yes, lets give a brain damaging, permanent damaging drug KNOWING he's breastfed and it does the same thing. So day 2 no side effects of taking him off Reglan he doesn't spit up any less than he did before and if anything he seems to eat better now, he's not as ansty during feeds and seems WAY more focused during feeds. I can definately tell a difference since he's been off the Reglan he seems like a much happier baby and is sleeping 110% better!
Seriously, WTF is wrong with these doctors. I can't belive she questioned that I would be breastfeeding him exclusively ROFL. She really didn't think 24 hours a day I would BF him, uhm.. newsflash I did it with my daughter there's no reason I wouldn't do it with Zach. I've been pumping off breastmilk for him for the past 4 months every 3 hours. It's pretty much the same thing sooo.. actually he empties my breasts faster than the pump so in some ways he's better becuase I get back to sleep sooner than if I'd had to pump. /rant off.
Anyhew he's doing well, I can't weigh him as well as when he was at the hospital but doing the weigh myself, then weigh with naked baby it looks like he's gaining very well :). His first doctor's appt is Weds. so hopefully we'll see massive weigh improvements. I'm thinking we will becuase he's fed on demand :) and boy this kid can eat like nobody's business. You'd think he was breastfed all along and never bottlefed.
He's super cute and making more and more eye contact. He's got huge eyes and we're pretty sure they're turning brown sometimes you can see a bit of brown in them when the light hits them just right. He's about 20 inches long (using tailoring tape measure) so he seems to have grown in length pretty quickly.
I'm working on finishing out the Baby Einstein videos that my mother-in-law started for him. There are a ton of those videos out there it's going to take a while to collect them all.
He seems more awake, alert and just overall in better condition since he's been home. He doesn't make any more sad noises and he's back to his normal self with the happy noises and laughing a lot more. He's smiling a lot more too. Seems very interested in his environment and loves all the toys etc we have for him. He especially loves his floor gym it's a Baby Neptune Baby Einstein floor gym with all sorts of toys and things to look at it is good for tummy time and back time. (I attribute a lot of this since I've taken him off the Reglan it seemed to really affect him mentally).
I was reading about breastfed babies last night and come to find out the act of breastfeeding does all the things Reglan is supposed to do. Starts the parastalsis type movements to get food moving and emptying of the stomach faster. I already was trying to get him off of it but I just stopped it completely after I read that. Ie. no weening should be necessary because he wasn't on it long and breastfeeding is doing what Reglan was supposed to do. So I was correct in thinking he didn't need it. Funny how the doctor NEVER mentioned that. Yes, lets give a brain damaging, permanent damaging drug KNOWING he's breastfed and it does the same thing. So day 2 no side effects of taking him off Reglan he doesn't spit up any less than he did before and if anything he seems to eat better now, he's not as ansty during feeds and seems WAY more focused during feeds. I can definately tell a difference since he's been off the Reglan he seems like a much happier baby and is sleeping 110% better!
Seriously, WTF is wrong with these doctors. I can't belive she questioned that I would be breastfeeding him exclusively ROFL. She really didn't think 24 hours a day I would BF him, uhm.. newsflash I did it with my daughter there's no reason I wouldn't do it with Zach. I've been pumping off breastmilk for him for the past 4 months every 3 hours. It's pretty much the same thing sooo.. actually he empties my breasts faster than the pump so in some ways he's better becuase I get back to sleep sooner than if I'd had to pump. /rant off.
Anyhew he's doing well, I can't weigh him as well as when he was at the hospital but doing the weigh myself, then weigh with naked baby it looks like he's gaining very well :). His first doctor's appt is Weds. so hopefully we'll see massive weigh improvements. I'm thinking we will becuase he's fed on demand :) and boy this kid can eat like nobody's business. You'd think he was breastfed all along and never bottlefed.
He's super cute and making more and more eye contact. He's got huge eyes and we're pretty sure they're turning brown sometimes you can see a bit of brown in them when the light hits them just right. He's about 20 inches long (using tailoring tape measure) so he seems to have grown in length pretty quickly.
I'm working on finishing out the Baby Einstein videos that my mother-in-law started for him. There are a ton of those videos out there it's going to take a while to collect them all.
Thursday, February 19, 2009
02-19-2009 Zachary Update
Well for the day nurse he had sort of a rough day (well supposedly) when I came in I found his pulseox monitor not on his food very well so it was giving bad readings.
I did the "car seat challenge" last night and he did wonderfully. He got hungry near the end so I gave him a pacifier and apparently I wasn't supposed to "stimulate him" during the test so the doctor failed him and re-did it this morning. For those of you thinking this is a load of crap.. yes, I think she was just trying to screw with me any way she can. Ohh and when they re-did the test when I wasn't here he destated low for them. (I wonder now if someone didn't mess with his pulseox or even both to look if it was on his foot). What makes me go hmmm... was that if he truly did destat as low as she said (which seems impossible since he's never done that before, ever) she didn't seem concerned. That kinda tells me she may have known it was off or did it herself. So the result of this is we have to go home in a laydown car seat. I don't plan on using it since he did fine last night they can "bite me". I wasn't here for the 2nd test so I have no idea what they did or didn't do. For all I know they didn't burp him enough after feeding him that'll cause destats too. Honestly, this is really just getting retarded with some of these things. He does VERY bad lying completely flat so I bet he'd do worse in the lay down one than the sitting up one. Last night he was so happy in his car seat (until he got hungry) that he didn't want to get out to eat hehe. He wanted to stay in it and was satting very high oxygen wise.
We're in the what's called "care by parent" time at the moment. This is where he's only hooked up with our take home monitor (monitors heart rate and breathing). All of their monitors are off of him. So far he's been a little sleepy tonight but doing well. I'm starting to see a trend with him at this time of night that he only eats a little bit then sleeps a long time. Then he'll wake up and be famished eat tons and then stay up. So I think early evening/mid night is like his overnight lol. Hopefully, we can shift him where he sleeps these long period more during later night :).
So he's sleeping well at the moment and very quiet. I'm sure with all the monitors off and the nurses not bothering him as much he's sleeping much better.
The doctor decided to do an echo today to make sure the PDA really was closed or not. Funny how she orders all these tests last minute that I'd asked for a while back that she said was unnecessary then. Also the upper GI yesterday. I'd asked for both of those a while back when she suggested he may have reflux (as most babies do). The only way to truly tell is with an upper GI. I wanted that done before medication to see how bad it was or if it was minor. From what the nurse who sat in on it said it barely came back up but the doctor made it sound much worse than it was and she wasn't even there lol. Way to try and justify the nasty meds she's been giving him.
So do I think she's trying to Cover Her As... of course I do. I'm glad they did the echo and upper GI though gives me peace of mind of knowing how he's doing etc. We'll get the final results of the echo tomorrow. The tech who did the echo said it looked good overall and she didn't see the PDA so if it's there it's so small that it's not causing any issues. His heart looked good. To me everything looked normal so that's good :).
I do wish my last day here was a bit more positive I kinda got in the doctor's face about the car seat thing and explained that was not fair for her to fail him after he did so well last night. I was not told I could not do anything to him while he was in the seat since I'll be riding in the back seat with him on the way home. It's not like I'm driving alone with him places. I surely don't plan on that for a while.
His day nurse although nice she'd never had him before and I suspect that's why she had so many problems with him (well dstats that can be attributed to the pulsox monitor not working right).
All in all I didn't have any problems with him since I've been here and he's been doign well since. So.. this just backs up my position he does better in my care and therefore should be home where I can care for him 24/7 and then it won't be a problem anymore. I'm tired of him doing wonderfully when I'm here then I have to leave to go home and "something" happens. Odd how the 12-18 hours I'm here a day he doesn't do this. So anyhew I'm glad to be getting out of here tomorrow. Come hell or high water I'm getting him out of here. 4 months is too long IMO.
.. looking forward to some much needed rest and my 10 weeks off from work :)
S
I did the "car seat challenge" last night and he did wonderfully. He got hungry near the end so I gave him a pacifier and apparently I wasn't supposed to "stimulate him" during the test so the doctor failed him and re-did it this morning. For those of you thinking this is a load of crap.. yes, I think she was just trying to screw with me any way she can. Ohh and when they re-did the test when I wasn't here he destated low for them. (I wonder now if someone didn't mess with his pulseox or even both to look if it was on his foot). What makes me go hmmm... was that if he truly did destat as low as she said (which seems impossible since he's never done that before, ever) she didn't seem concerned. That kinda tells me she may have known it was off or did it herself. So the result of this is we have to go home in a laydown car seat. I don't plan on using it since he did fine last night they can "bite me". I wasn't here for the 2nd test so I have no idea what they did or didn't do. For all I know they didn't burp him enough after feeding him that'll cause destats too. Honestly, this is really just getting retarded with some of these things. He does VERY bad lying completely flat so I bet he'd do worse in the lay down one than the sitting up one. Last night he was so happy in his car seat (until he got hungry) that he didn't want to get out to eat hehe. He wanted to stay in it and was satting very high oxygen wise.
We're in the what's called "care by parent" time at the moment. This is where he's only hooked up with our take home monitor (monitors heart rate and breathing). All of their monitors are off of him. So far he's been a little sleepy tonight but doing well. I'm starting to see a trend with him at this time of night that he only eats a little bit then sleeps a long time. Then he'll wake up and be famished eat tons and then stay up. So I think early evening/mid night is like his overnight lol. Hopefully, we can shift him where he sleeps these long period more during later night :).
So he's sleeping well at the moment and very quiet. I'm sure with all the monitors off and the nurses not bothering him as much he's sleeping much better.
The doctor decided to do an echo today to make sure the PDA really was closed or not. Funny how she orders all these tests last minute that I'd asked for a while back that she said was unnecessary then. Also the upper GI yesterday. I'd asked for both of those a while back when she suggested he may have reflux (as most babies do). The only way to truly tell is with an upper GI. I wanted that done before medication to see how bad it was or if it was minor. From what the nurse who sat in on it said it barely came back up but the doctor made it sound much worse than it was and she wasn't even there lol. Way to try and justify the nasty meds she's been giving him.
So do I think she's trying to Cover Her As... of course I do. I'm glad they did the echo and upper GI though gives me peace of mind of knowing how he's doing etc. We'll get the final results of the echo tomorrow. The tech who did the echo said it looked good overall and she didn't see the PDA so if it's there it's so small that it's not causing any issues. His heart looked good. To me everything looked normal so that's good :).
I do wish my last day here was a bit more positive I kinda got in the doctor's face about the car seat thing and explained that was not fair for her to fail him after he did so well last night. I was not told I could not do anything to him while he was in the seat since I'll be riding in the back seat with him on the way home. It's not like I'm driving alone with him places. I surely don't plan on that for a while.
His day nurse although nice she'd never had him before and I suspect that's why she had so many problems with him (well dstats that can be attributed to the pulsox monitor not working right).
All in all I didn't have any problems with him since I've been here and he's been doign well since. So.. this just backs up my position he does better in my care and therefore should be home where I can care for him 24/7 and then it won't be a problem anymore. I'm tired of him doing wonderfully when I'm here then I have to leave to go home and "something" happens. Odd how the 12-18 hours I'm here a day he doesn't do this. So anyhew I'm glad to be getting out of here tomorrow. Come hell or high water I'm getting him out of here. 4 months is too long IMO.
.. looking forward to some much needed rest and my 10 weeks off from work :)
S
Wednesday, February 18, 2009
2-18-2009 Zachary Update
Only good news today to give. After several rather rough days there's some light. I did have to push the issue and get the Case Worker, his Pediatrician and a few others involved but in the end it was worth fighting for.
So first off, he had his upper GI done today. This is something he needed to confirm the GERD (reflux) and make sure he wasn't aspirating. Aspirating during feeds can cause pneumonia which can be fatal to preemies. Thankfully, no aspiration during the test however, he's having some significant reflux. He was already on the Zantac and that was helping some but she's now putting him on Prevacid it's just harder to get because you have to go to a compound pharmacy for it.
So he's been doing really well with the breastfeeding no bradys no destats and the only times he did those things were while bottle feeding. So I had told the doctor yesterday that I needed a firm reason why he was still here and if she felt he needed to stay longer than a few days to get the transfer process started to get him moved back to the hospital he was born at which is about 15 mins away from the house. So at least if the Pediatrician and Neonatologist felt it was medically necessary for him to stay hospitalised then he'd be closer to home. Parking is free and I could go home to eat meals instead of eating out every day. The financial toll daily here is really starting to negatively affect my bank account. I spent $10+ on parking a day + 1/5th a tank of gas there and back + $23+ on meals at the hospital. Needless to say him being here hemorrhages money.
So the doctor was waiting on his test results before calling me. She was clearly avoiding calling me before and Zach's Pediatrician had to call her several times before getting in touch with her. I re-iterated about the transfer knowing she hadn't called the case worker. (I'd called the Case Worker that morning to see what needed to be done for the transfer since I knew the doctor was stalling). She wanted to try to use the Simply Thick again and I was honest and plain and told her that after the last Tues - Sat without a poop that I'd rather not since he'll be breastfed at home and it's only an issue with bottle feeding. The Simply Thick bound him up so badly he literally didn't poop for 5 days and was in terrible pain every time he passed gas etc. I told her that "not to be rude" but she's not there all night with him as he's crying and whimpering in pain when he's trying to poop/pass the gas. When he can't burp because the thickener keeps the burps from coming out. He's already got pooing issues and burping issues without a thick substance. So yes, it works wonderfully on keeping them from spitting up but HE DOESN'T currently spit up. It can help some with the reflux but if you fill him up he'll still reflux no matter what you give him. The Simply Thick is also used to help them suck swallow rhythm better but he does fine breastfeeding, once again only a bottle issue which he does fine with his suck/swallow there too (nothing out of the ordinary for full-term baby).
So after repeating myself about 3 times stating why are we working on an issue that's only a problem in the hospital. Why would we try to give him something that even has a possibility of causing him discomfort and pain? I think she finally understood what I was getting at. I told her I completely understand why they want to try it again but I think for him the downsides outweigh the benefit. Plus, at home he'll be breastfed 90% of the day so it really won't be an issue. I asked her if it was really medically necessary to keep him here when we're working on a problem that won't be a problem at home? He won't be going to a day care for a long time and that's about the only time he'll be bottle fed. She wanted me to assure her that I was only going to breastfeed him at home ... after I'd said that was the plan I don't know how many times. He does very well breastfeeding at the hospital the 12-18 hours I'm there. The only time I have to bottle feed him is if I pumped off and he's hungry and my milk hasn't refilled.
After we got the go-ahead from the doctor the Case Worker started on the prescriptions and the multitude of doctors he needs to see when he's out. Mostly for follow-ups. A Cardiologist (to make sure the PDA is closed), an Audiologist for a hearing test (although he passed the first one beautifully they like to do a follow-up to make sure due to him being a VLBWP - very low birth weight preemie), the Pediatrician 5 days after he's home, a Urologist to get his circumcision done and the eye doctor in a year to follow-up and make sure his eyes are still doing well.
Thankfully, he'll have a monitor sent home with him and as soon as we get the training on that we can do the care by parent 24 hour where he's only on the take home monitor and we do all of his care. I generally do all of his care anyway when I'm here so it's no biggie.The people that do the training for that will be here tomorrow at 1pm. I probably won't stay tonight as long as I usually do so I can be well rested for Thurs-Fri.
He just got his RSV vaccine (that's a nasty virus that often causes pneumonia etc in preemies and those with compromised immune systems). He'll get his second shot of that in March. He didn't like that at all ROFL. I just got taught how to give his meds talk about precise.. 1.13 ml of Prevacid lol. One thing I know about that is it's weight adjusted so important to make sure he's getting that adjusted as he gets bigger.
Overall, he's kinda tired today after his upper GI but doing well and sleeping good. He needs a good sleep :). Last night he was up to 7lbs 8.1 ounces hopefully he continues to gain. Small gains but gains all the same. I'm hopeful his discharge from here will continue to go well and we'll be home by midday Friday.
Sarah
So first off, he had his upper GI done today. This is something he needed to confirm the GERD (reflux) and make sure he wasn't aspirating. Aspirating during feeds can cause pneumonia which can be fatal to preemies. Thankfully, no aspiration during the test however, he's having some significant reflux. He was already on the Zantac and that was helping some but she's now putting him on Prevacid it's just harder to get because you have to go to a compound pharmacy for it.
So he's been doing really well with the breastfeeding no bradys no destats and the only times he did those things were while bottle feeding. So I had told the doctor yesterday that I needed a firm reason why he was still here and if she felt he needed to stay longer than a few days to get the transfer process started to get him moved back to the hospital he was born at which is about 15 mins away from the house. So at least if the Pediatrician and Neonatologist felt it was medically necessary for him to stay hospitalised then he'd be closer to home. Parking is free and I could go home to eat meals instead of eating out every day. The financial toll daily here is really starting to negatively affect my bank account. I spent $10+ on parking a day + 1/5th a tank of gas there and back + $23+ on meals at the hospital. Needless to say him being here hemorrhages money.
So the doctor was waiting on his test results before calling me. She was clearly avoiding calling me before and Zach's Pediatrician had to call her several times before getting in touch with her. I re-iterated about the transfer knowing she hadn't called the case worker. (I'd called the Case Worker that morning to see what needed to be done for the transfer since I knew the doctor was stalling). She wanted to try to use the Simply Thick again and I was honest and plain and told her that after the last Tues - Sat without a poop that I'd rather not since he'll be breastfed at home and it's only an issue with bottle feeding. The Simply Thick bound him up so badly he literally didn't poop for 5 days and was in terrible pain every time he passed gas etc. I told her that "not to be rude" but she's not there all night with him as he's crying and whimpering in pain when he's trying to poop/pass the gas. When he can't burp because the thickener keeps the burps from coming out. He's already got pooing issues and burping issues without a thick substance. So yes, it works wonderfully on keeping them from spitting up but HE DOESN'T currently spit up. It can help some with the reflux but if you fill him up he'll still reflux no matter what you give him. The Simply Thick is also used to help them suck swallow rhythm better but he does fine breastfeeding, once again only a bottle issue which he does fine with his suck/swallow there too (nothing out of the ordinary for full-term baby).
So after repeating myself about 3 times stating why are we working on an issue that's only a problem in the hospital. Why would we try to give him something that even has a possibility of causing him discomfort and pain? I think she finally understood what I was getting at. I told her I completely understand why they want to try it again but I think for him the downsides outweigh the benefit. Plus, at home he'll be breastfed 90% of the day so it really won't be an issue. I asked her if it was really medically necessary to keep him here when we're working on a problem that won't be a problem at home? He won't be going to a day care for a long time and that's about the only time he'll be bottle fed. She wanted me to assure her that I was only going to breastfeed him at home ... after I'd said that was the plan I don't know how many times. He does very well breastfeeding at the hospital the 12-18 hours I'm there. The only time I have to bottle feed him is if I pumped off and he's hungry and my milk hasn't refilled.
After we got the go-ahead from the doctor the Case Worker started on the prescriptions and the multitude of doctors he needs to see when he's out. Mostly for follow-ups. A Cardiologist (to make sure the PDA is closed), an Audiologist for a hearing test (although he passed the first one beautifully they like to do a follow-up to make sure due to him being a VLBWP - very low birth weight preemie), the Pediatrician 5 days after he's home, a Urologist to get his circumcision done and the eye doctor in a year to follow-up and make sure his eyes are still doing well.
Thankfully, he'll have a monitor sent home with him and as soon as we get the training on that we can do the care by parent 24 hour where he's only on the take home monitor and we do all of his care. I generally do all of his care anyway when I'm here so it's no biggie.The people that do the training for that will be here tomorrow at 1pm. I probably won't stay tonight as long as I usually do so I can be well rested for Thurs-Fri.
He just got his RSV vaccine (that's a nasty virus that often causes pneumonia etc in preemies and those with compromised immune systems). He'll get his second shot of that in March. He didn't like that at all ROFL. I just got taught how to give his meds talk about precise.. 1.13 ml of Prevacid lol. One thing I know about that is it's weight adjusted so important to make sure he's getting that adjusted as he gets bigger.
Overall, he's kinda tired today after his upper GI but doing well and sleeping good. He needs a good sleep :). Last night he was up to 7lbs 8.1 ounces hopefully he continues to gain. Small gains but gains all the same. I'm hopeful his discharge from here will continue to go well and we'll be home by midday Friday.
Sarah
Tuesday, February 17, 2009
2-17-2009 Zachary Update
He seems to be doing well today the doctor called me and said he had some bad Brady's during the night. Everyone went up to watch the CPR video last night so we left around 8pm. He was really tired when we left so I'm guessing that had a lot to do with it. The doctor said she'll be putting him back on oxygen for his feeds he doesn't need it any other time but it should help with the brady's he is having. I'd asked a while back about sending him home on supplemental oxygen at least so I'd have it if it was needed. She seemed ok with that so hopefully we'll have it as long as he needs it for his feeds. Though when I feed him usually he doesn't need it becuase I know the signs of him about to brady and usually catch it. An unfamiliar nurse (They get a different nurse every day usually) would not know to look for his signs and has a greater chance of him bradying. Hence, why he just needs to get out of there. However, there's a lot of things we're starting to have concerns about.
I told Zach’s doctor today that if she didn’t think he was ready to come home in the next few days to prepare to transfer him to Memorial City Hermann. There’s a couple reasons for that… most of the nurses and us don’t feel he needs to be there anymore so if he gets transferred out here where they have limited space they’ll most likely agree and send him home. Secondly, I’m starting to doubt the abilities of his current doctor so .. this is a way of getting a second opinion w/out stepping on toes.
Also, with Alexis (she broke her right hand/knuckles Sunday) in the condition she’s in at the moment she needs a lot of help and I simply can’t be up at the hospital for 36+ hours at a time (I often spend overnight for his feedings). It’s getting too expensive, too time consuming and just a severe drain on the family and we’ve all about hit our limit.
He's overdue for coming home and we all feel a change would be better for him (he's been there now almost 4 months). Not to mention it’s a heck of a lot closer to home for us. He doesn’t need acute care at all so really the hospital is unnecessary at this time which we’re convinced they’ll see.
I told Zach’s doctor today that if she didn’t think he was ready to come home in the next few days to prepare to transfer him to Memorial City Hermann. There’s a couple reasons for that… most of the nurses and us don’t feel he needs to be there anymore so if he gets transferred out here where they have limited space they’ll most likely agree and send him home. Secondly, I’m starting to doubt the abilities of his current doctor so .. this is a way of getting a second opinion w/out stepping on toes.
Also, with Alexis (she broke her right hand/knuckles Sunday) in the condition she’s in at the moment she needs a lot of help and I simply can’t be up at the hospital for 36+ hours at a time (I often spend overnight for his feedings). It’s getting too expensive, too time consuming and just a severe drain on the family and we’ve all about hit our limit.
He's overdue for coming home and we all feel a change would be better for him (he's been there now almost 4 months). Not to mention it’s a heck of a lot closer to home for us. He doesn’t need acute care at all so really the hospital is unnecessary at this time which we’re convinced they’ll see.
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