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
Thursday, February 26, 2009
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.
Monday, February 16, 2009
2-16-2009 Zachary Update
Well it was another one of those times where I decided to spend the night and I got only a 30 min nap. Zach decided he wanted to be awake from 5am - 9am during the time I was planning on sleeping. By the time I got him to sleep it was time for me to get breakfast and get working. I had a few meetings today so even though I was tired I still had to attend and try to stay mentally fresh.
Zach's having a mostly good day he's been pooping every day since Saturday. Thankfully that Simply Thick crap is out of his system now. The doctor has made no more mention of when he can go home and I think tomrorow I might press the issue again becuase quite honestly it's getting a bit rediculous at this time. We were past our "countdown" last week and he's had 0 brady's in his sleep which is what she was looking for. His feeding issues really aren't anything that can't be controlled and simply breast feeding him fixes 99% of all his problems. So in order to get him home I just try to breast feed him as frequently as possible so he doesn't have a lot of issues during the bottle feeds. He gets too over eager and chokes on it sometimes etc. On some of the medication they have him on for "reflux" it makes him very antsy during feeds so it makes it a nightmare sometimes to feed him. Thankfully, he usually gets in a kinda sleepy state when he's breastfeeding so I don't always have those problems. Hence the trying to feed him more that way.
He's 7lbs 6.7 ounces so his gains aren't stellar for the week but he's not declining. He's now fully transitioned to breastmilk no longer having it fortified. We just need to make sure he's still gaining weight and doesn't need the fortifier. That may be what the doctor is waiting on (I hope) because that's something we'll know by Weds more or less how he's doing. Not that I want to be here that long ... mind you. We're working on our 4th month here and I'm truly just tired of this place. I work here the past 5 years that's bad enough but to have to be here and sometimes spend the night staying here for 48+ hours is really getting old.
He's considered 42 weeks this week. This is equivalent to when I had Alexis she weighed 8lbs so he's not too far off her weight. I bought him a thing that goes on the side of the crib it's a jungle theme and has the zeebra, lion and giraffe light up, big mirror for the rest of it and it plays jungle theme songs. He has several days now just sat and stared at it for 30+ mins. He laughs at it, smiles at it coos at it. I can say I think the PT would be proud and can say for sure now he doesn't have attention problems lol. That boy can focus qutie well.
Soo.. anyhew he's doing well and gets stronger and bigger every day. I'm very proud of him and all that he does and gets better at each day.
I'll be uploading some photos in a bit there's a ton since the last update.
Sarah
Zach's having a mostly good day he's been pooping every day since Saturday. Thankfully that Simply Thick crap is out of his system now. The doctor has made no more mention of when he can go home and I think tomrorow I might press the issue again becuase quite honestly it's getting a bit rediculous at this time. We were past our "countdown" last week and he's had 0 brady's in his sleep which is what she was looking for. His feeding issues really aren't anything that can't be controlled and simply breast feeding him fixes 99% of all his problems. So in order to get him home I just try to breast feed him as frequently as possible so he doesn't have a lot of issues during the bottle feeds. He gets too over eager and chokes on it sometimes etc. On some of the medication they have him on for "reflux" it makes him very antsy during feeds so it makes it a nightmare sometimes to feed him. Thankfully, he usually gets in a kinda sleepy state when he's breastfeeding so I don't always have those problems. Hence the trying to feed him more that way.
He's 7lbs 6.7 ounces so his gains aren't stellar for the week but he's not declining. He's now fully transitioned to breastmilk no longer having it fortified. We just need to make sure he's still gaining weight and doesn't need the fortifier. That may be what the doctor is waiting on (I hope) because that's something we'll know by Weds more or less how he's doing. Not that I want to be here that long ... mind you. We're working on our 4th month here and I'm truly just tired of this place. I work here the past 5 years that's bad enough but to have to be here and sometimes spend the night staying here for 48+ hours is really getting old.
He's considered 42 weeks this week. This is equivalent to when I had Alexis she weighed 8lbs so he's not too far off her weight. I bought him a thing that goes on the side of the crib it's a jungle theme and has the zeebra, lion and giraffe light up, big mirror for the rest of it and it plays jungle theme songs. He has several days now just sat and stared at it for 30+ mins. He laughs at it, smiles at it coos at it. I can say I think the PT would be proud and can say for sure now he doesn't have attention problems lol. That boy can focus qutie well.
Soo.. anyhew he's doing well and gets stronger and bigger every day. I'm very proud of him and all that he does and gets better at each day.
I'll be uploading some photos in a bit there's a ton since the last update.
Sarah
Friday, February 13, 2009
2-13-2009 Zachary Update
Well I'd hoped to be saying he'd be coming home this weekend but it clearly does not look like the doctor intends for that to happen. Soo looks like we're stuck here for a while. She still wants his heart rate drops and dstats (oxygen sat) to improve they're not bad persay but sometimes they are moderate/borderline.
He's now on reflux meds and although I have no problem with Zantac persay I've got a problem with the other medicine she has him on. First off I don't think it's necessary and secondly it's a psychotropic drug that can have bad long term effects. Also, there's a class action lawsuit against the makers from parents who say it neurologically damaged their children with clinical evidence. So needless to say I want him off that as soon as he's home. Bad thing is the longer he's on it the more you have to "ween" them off it /sigh. That's one reason I was hoping he'd be going home this weekend so I could call the Pediatrician let him know my concerns and see if 1. there's an alternative, 2. did he think it was really necessary (breast milk goes through the system faster already he doesn't need help with that) and 3. Could I stop him on it becuase I feel it's damaging to him. He is so much more ansty now during feeds it's very difficult sometimes to get him to eat.
So needless to say I'm sick of this place and just about everything that goes with it. I spend way too many hours here but I'm afraid not to. They do give him good care don't get me wrong but he does 110% better when I'm here. That means all the closer he gets to coming home.
Although I'd hoped he'd be home by Valentine's day I guess it wasn't in the cards. Pray for us that we get out of here ASAP.
S
He's now on reflux meds and although I have no problem with Zantac persay I've got a problem with the other medicine she has him on. First off I don't think it's necessary and secondly it's a psychotropic drug that can have bad long term effects. Also, there's a class action lawsuit against the makers from parents who say it neurologically damaged their children with clinical evidence. So needless to say I want him off that as soon as he's home. Bad thing is the longer he's on it the more you have to "ween" them off it /sigh. That's one reason I was hoping he'd be going home this weekend so I could call the Pediatrician let him know my concerns and see if 1. there's an alternative, 2. did he think it was really necessary (breast milk goes through the system faster already he doesn't need help with that) and 3. Could I stop him on it becuase I feel it's damaging to him. He is so much more ansty now during feeds it's very difficult sometimes to get him to eat.
So needless to say I'm sick of this place and just about everything that goes with it. I spend way too many hours here but I'm afraid not to. They do give him good care don't get me wrong but he does 110% better when I'm here. That means all the closer he gets to coming home.
Although I'd hoped he'd be home by Valentine's day I guess it wasn't in the cards. Pray for us that we get out of here ASAP.
S
Wednesday, February 11, 2009
2-10-2009 Zachary Update
Zach continues to do well off the oxygen and no more feeding tube since Sunday. He's not needed any supplemental oxygen (that I am aware of and not while I've fed him. He does seem to like to brady some when he's trying to burp/pass gas. The doctor swears that's normal and isn't planning on sending him home with monitors. She says she'd only be concerned if he was bradying in his sleep which he's not.
I finally asked when she thought he'd be going home and she said he's in his "watch" period where for 4 days or so she keeps an eye on him and sees if he'll need supplemental oxygen at home, monitoring and no brady's while he's sleeping. If not and he's continuing to gain weight and eat well she thinks he can be home by end of week - early next week.
He's up to 7lbs 7 ounces and gained very well. He's been steadily eating more and more and almost up to what I would consider normal for his weight. He's up to 70-80 ccs per feed and sometimes feeds inbetween. So he's eating very well now, honestly it's impressive the amount he's been eating and how often. Burping continues to be a problem frequently. I tried a few different bottles/nipples today and I found one that works pretty well w/out overwhelming him. I haven't tried the drop ins yet.
His MRSA has also cleared up for the past few weeks he's come up negative for it which is nice :). We've pretty much gotten everything we need for him to come home I want to get a play gym for his crib as he does seem more interested in things these days. Also, a floor play gym so we can work with him on some things the PT suggested.
He had his hearing test yesterday and the brain scans showed that his hearing is perfect. She gave us a cute little passing paper for his baby book.
I finally asked when she thought he'd be going home and she said he's in his "watch" period where for 4 days or so she keeps an eye on him and sees if he'll need supplemental oxygen at home, monitoring and no brady's while he's sleeping. If not and he's continuing to gain weight and eat well she thinks he can be home by end of week - early next week.
He's up to 7lbs 7 ounces and gained very well. He's been steadily eating more and more and almost up to what I would consider normal for his weight. He's up to 70-80 ccs per feed and sometimes feeds inbetween. So he's eating very well now, honestly it's impressive the amount he's been eating and how often. Burping continues to be a problem frequently. I tried a few different bottles/nipples today and I found one that works pretty well w/out overwhelming him. I haven't tried the drop ins yet.
His MRSA has also cleared up for the past few weeks he's come up negative for it which is nice :). We've pretty much gotten everything we need for him to come home I want to get a play gym for his crib as he does seem more interested in things these days. Also, a floor play gym so we can work with him on some things the PT suggested.
He had his hearing test yesterday and the brain scans showed that his hearing is perfect. She gave us a cute little passing paper for his baby book.
Monday, February 9, 2009
02-08-2009 Zachary Update
Well the day started out like most others me wishing Zach would stop getting so much air when he eats and would take all the bottle and stop being so hungry inbetween feedings. So I finally got to see the weekend doctor she's seen Zachary just about every weekend since he's been here so she's really familiar with his case. She sees the weekly changes in him etc whereas sometimes the weekly doctor does not notice them as much.
So I was explaining that he was doing better with the blue nipple (faster flow) but that he was still getting hungry much earlier than the "scheduled times" and about the air/burping issues. So she looked him over and checked his charts over the past week and felt it'd be worth a try to remove his feeding tube and oxygen and see how he does for 24 hours. I was amazed we go from tons of feeding issues to this. So I was skeptical but hopeful he'd be able to hold his own.
So 12 hours later I do have good news in that he's been fine and his oxygen saturation as remianed high. For one feed I had to give him oxygen for 2 mins but that was it and I've not had to for the last 2 feedings. He was trying to burp, pass poop and eat at the same time. He's not too great at the multitasking yet :P So that's understandable. But so far he's been wide awake for each feeding and ready to eat. The doctor wrote the order so that he can eat on demand whenever he likes as long as it doesn't go past 4 hours between feeds which is awesome. I'm sure the nurses don't care for that but I'll be here a lot until he goes home to minimize problems with that.
So hopefully, after his regular doctors sees how well he's doing she'll finally schedule his final checkups (ear doc etc) and let me know when we can get the heck out of here. I'm so ready to just be with him at home out of this hospital room. I want MY BED and MY Food. I'm so sick of the cafeteria food and I was sick of it 5 yrs ago when I started working here ROFL. You know I'm desperate when I'm taking leftovers to the hospital LOL.
So I have only good things to report tonight. Oddly enough he's doing better (oxygen saturation wise) off the nasal cannula than on it .. go figure. I can only guess since that feeding tube is out of his nose/throat it's a lot easier for him to breathe. I know it's MUCH easier to burp him now no more 15 min session it's 30s - 1min and he burps just like a champ.
S
So I was explaining that he was doing better with the blue nipple (faster flow) but that he was still getting hungry much earlier than the "scheduled times" and about the air/burping issues. So she looked him over and checked his charts over the past week and felt it'd be worth a try to remove his feeding tube and oxygen and see how he does for 24 hours. I was amazed we go from tons of feeding issues to this. So I was skeptical but hopeful he'd be able to hold his own.
So 12 hours later I do have good news in that he's been fine and his oxygen saturation as remianed high. For one feed I had to give him oxygen for 2 mins but that was it and I've not had to for the last 2 feedings. He was trying to burp, pass poop and eat at the same time. He's not too great at the multitasking yet :P So that's understandable. But so far he's been wide awake for each feeding and ready to eat. The doctor wrote the order so that he can eat on demand whenever he likes as long as it doesn't go past 4 hours between feeds which is awesome. I'm sure the nurses don't care for that but I'll be here a lot until he goes home to minimize problems with that.
So hopefully, after his regular doctors sees how well he's doing she'll finally schedule his final checkups (ear doc etc) and let me know when we can get the heck out of here. I'm so ready to just be with him at home out of this hospital room. I want MY BED and MY Food. I'm so sick of the cafeteria food and I was sick of it 5 yrs ago when I started working here ROFL. You know I'm desperate when I'm taking leftovers to the hospital LOL.
So I have only good things to report tonight. Oddly enough he's doing better (oxygen saturation wise) off the nasal cannula than on it .. go figure. I can only guess since that feeding tube is out of his nose/throat it's a lot easier for him to breathe. I know it's MUCH easier to burp him now no more 15 min session it's 30s - 1min and he burps just like a champ.
S
Saturday, February 7, 2009
2-6-2009 Zachary Update
It's been a pretty crazy and busy week. This is Zach's 40 week's gestational week. He was due on or between Feb 1st - 6th. He's 7 lbs .6 ounces. So far this week we've had a possible Vitamin D deficiency worry (one of his labs were elevated for bone break down - not high just elevated). They tested him again and found his calcium/potassium levels fine so he ended up not having a vitamin D deficiency. So that was one thing less to worry about.
Then, we had his MRI done Tuesday, results in Wednesday and what the Neonatologist was saying (just reading from the report) did not sound that great. Further research online didn't make it sound any better. They had found DEHSI (Diffuse excessive high signal intensities) on his MRI - Generally relates to White matter damage in the brain. Now in about 80% of VLBWP (Very Low Birth Weight Preemies) you'll see DEHSI. The thing is these scans they're using to find this are very new (within the last 5 years) so they don't really have a lot of data to show what DEHSI means long term. The do know that if they find a lot of DEHSI on a scan that generally the children at 5 yrs will have mild to severe learning or motor skills impariment.
So with that being said when the doctor told me they found it on his scan I was immediately alarmed and wanted to know more. The MRI report was vague at best. It also said that his Myelination is normal for age. He's had no hemmorage or masses. He's got some areas where his brain has not grown yet (very normal in preemies) that the radiologist said was atrophy. However, I'd asked for a Neruologist to consult due to the vague report he stated "You can't lose what you never had". He explained that the radiologist should not have used that term. Basically, the preemie's brains take a little longer to finish growing than a full-term normal baby. He's perfectly fine in that regard and may take up to 2 years for his brain to catch up with other full-term babies. So his cranium is full size but his brain doesn't completely fill it up in all areas which is normal for a preemie.
So the Neurologist was great he explained that although they found DEHSI on his scan it was so minimal that they almost didn't note it but they were erring on the side of caution. That's good because the less of that he has the less overall damage to his white matter he has. Meaning, long term his fine motor and mental abilities will be minimally impacted. The Neurolist said that we just need to watch him for the next 2 years and as long as he's reaching his milestones with adjusted age (give or take a few months) then we don't even need another Neuro follow-up. If he's not then we should get another MRI at age 2. So, that's one less thing to worry about.
While reading some of the reports about preemies and MRI scans I was reading about extreme low or high muscle tone in preemies and that both can be a sign of neuron damage. Zach has always had high muscle tone and could pick up his head/body, push off with his legs and attempt to crawl for the longest time. He was able to do this nearly since he was 1 month out of womb which is exceptional. Most newborns can't pick up their heads, crawl etc. So when I read that can be a bad thing I asked for a PT consult just to see what they think. Too much muscle tone can cause the tendons to stiffen etc and cause problems for walking etc later. The PT did her workup today but I've not spoken to her the OT she called in said that she didn't find anything of concern so that's good I'll know more of what she thinks on Monday.
So the OT is for some feeding issues. I'd been reluctant to have them use the blue nipple on bottling him becuase it's a faster flow. Some of the nurses want to use it because it's easier for him to suck and get milk ie less work /time for him. The less time he feeds the more energy he has to grow. However, faster flow nipples is the main reason babies get nipple confusion and won't take to breast anymore. Problem is when they use the green slower nipple with him he works so hard to get the milk by the time he's down to 10-15 cc's left he's too tired to finish or thinks he's full and gives up. Well the OT being called in means they're using that as a last effort so he can go home. We can't take him home until he's on all feeds no tube, and takes all from the bottle/breast and doesn't need supplementation. If we can't get him to take full bottles they'll suggest a G Tube (it's a tube that goes directly into the stomach). I really doubt we'll have to get that far considering tonight I've successfully 3 feedings in a row gotten him to take the entire bottle with the blue nipple. So seems like that's going to be our choice atm. Hopefully, for the rest of the weekend he'll continue on this trend and I'll have good news for the OT. Hopefully, she can help with him getting too much air while he feeds not sure there's any help for that but hey I'm open for suggestions lol.
So it's been a rough week as you can tell a lot of worrisome things and most turned out ok thankfully. With luck we'll get his feeding issues worked out and his oxygen requirements will continue to be minimal. He's had some brady's (heart rate drop) last couple days with this new lower flow oxygen as long as it's not excessive they won't turn him back up. So with luck he'll stop having them soon and it won't be an issue anymore.
S
Then, we had his MRI done Tuesday, results in Wednesday and what the Neonatologist was saying (just reading from the report) did not sound that great. Further research online didn't make it sound any better. They had found DEHSI (Diffuse excessive high signal intensities) on his MRI - Generally relates to White matter damage in the brain. Now in about 80% of VLBWP (Very Low Birth Weight Preemies) you'll see DEHSI. The thing is these scans they're using to find this are very new (within the last 5 years) so they don't really have a lot of data to show what DEHSI means long term. The do know that if they find a lot of DEHSI on a scan that generally the children at 5 yrs will have mild to severe learning or motor skills impariment.
So with that being said when the doctor told me they found it on his scan I was immediately alarmed and wanted to know more. The MRI report was vague at best. It also said that his Myelination is normal for age. He's had no hemmorage or masses. He's got some areas where his brain has not grown yet (very normal in preemies) that the radiologist said was atrophy. However, I'd asked for a Neruologist to consult due to the vague report he stated "You can't lose what you never had". He explained that the radiologist should not have used that term. Basically, the preemie's brains take a little longer to finish growing than a full-term normal baby. He's perfectly fine in that regard and may take up to 2 years for his brain to catch up with other full-term babies. So his cranium is full size but his brain doesn't completely fill it up in all areas which is normal for a preemie.
So the Neurologist was great he explained that although they found DEHSI on his scan it was so minimal that they almost didn't note it but they were erring on the side of caution. That's good because the less of that he has the less overall damage to his white matter he has. Meaning, long term his fine motor and mental abilities will be minimally impacted. The Neurolist said that we just need to watch him for the next 2 years and as long as he's reaching his milestones with adjusted age (give or take a few months) then we don't even need another Neuro follow-up. If he's not then we should get another MRI at age 2. So, that's one less thing to worry about.
While reading some of the reports about preemies and MRI scans I was reading about extreme low or high muscle tone in preemies and that both can be a sign of neuron damage. Zach has always had high muscle tone and could pick up his head/body, push off with his legs and attempt to crawl for the longest time. He was able to do this nearly since he was 1 month out of womb which is exceptional. Most newborns can't pick up their heads, crawl etc. So when I read that can be a bad thing I asked for a PT consult just to see what they think. Too much muscle tone can cause the tendons to stiffen etc and cause problems for walking etc later. The PT did her workup today but I've not spoken to her the OT she called in said that she didn't find anything of concern so that's good I'll know more of what she thinks on Monday.
So the OT is for some feeding issues. I'd been reluctant to have them use the blue nipple on bottling him becuase it's a faster flow. Some of the nurses want to use it because it's easier for him to suck and get milk ie less work /time for him. The less time he feeds the more energy he has to grow. However, faster flow nipples is the main reason babies get nipple confusion and won't take to breast anymore. Problem is when they use the green slower nipple with him he works so hard to get the milk by the time he's down to 10-15 cc's left he's too tired to finish or thinks he's full and gives up. Well the OT being called in means they're using that as a last effort so he can go home. We can't take him home until he's on all feeds no tube, and takes all from the bottle/breast and doesn't need supplementation. If we can't get him to take full bottles they'll suggest a G Tube (it's a tube that goes directly into the stomach). I really doubt we'll have to get that far considering tonight I've successfully 3 feedings in a row gotten him to take the entire bottle with the blue nipple. So seems like that's going to be our choice atm. Hopefully, for the rest of the weekend he'll continue on this trend and I'll have good news for the OT. Hopefully, she can help with him getting too much air while he feeds not sure there's any help for that but hey I'm open for suggestions lol.
So it's been a rough week as you can tell a lot of worrisome things and most turned out ok thankfully. With luck we'll get his feeding issues worked out and his oxygen requirements will continue to be minimal. He's had some brady's (heart rate drop) last couple days with this new lower flow oxygen as long as it's not excessive they won't turn him back up. So with luck he'll stop having them soon and it won't be an issue anymore.
S
Wednesday, February 4, 2009
2-3-2009 Zachary Update
He was pretty tired today what from no idea he had a good night the previous night. He's up to 6lbs 14.4 ounces so just barely under 7lbs. Monday one of his labs came back that they thought maybe had a Vitamin D deficiency but the X-rays did not show any breaking down of the bones. So he doesn't have Rickets or anything along those lines. The labs were just elevated and there are more things than just vitamin D that can cause the labs to be off. They'll monitor it and hopefully that won't continue. His Calcium and Phosphorus levels are good.
He finally went in for his routine MRI today I asked to go with just to see what it was like. Kinda boring TBH lol. Very loud and boring. He did fine the first half of the scan the second part that the MRI machine made some loud ticking noise upset him a lot to where all he did was scream. Bear in mind he was velcroed down and he was still finding a way to move lol. So they only got half his brain scanned and the hope is that's all the doctors need. Otherwise, he'll have to go back down for the other half and hopefully he'll be more cooperative or they'll have to sedate him. I kinda doubt they're going to ask for another MRI since it was just a routine/checking to make sure all is ok scan.
His oxygen is usually around 21% (what we breathe) last few days so that's good only having to be bumped up a few times. He's had a few more issues with spitup getting caught in his throat (mostly from him pushing to try to get out gas/poo) so that's a new not pleasant development. He brady's pretty hard when this happens and the worry always is he'll get some of it in his lungs. Thankfully, nothing in his lungs and we've able to get him to overcome the bradys/dstats pretty well.
I got in the mail the request from the doctors for how long they have requested him to stay and it has it through Feb. 11th. So he'll probably be there through at least then. I'm getting more and more feeling he'll be there past that date. He's just not progressing on his feeds well enough to get that tube out. Today he was mostly fed by tube all day just too tired to breastfeed or bottle feed. So we'll see, he's doing well overall and a few setbacks here and there but nothing to be unexpected. I feel pretty blessed that we've dodged a few huge bullets and just pray we can overcome these few milestones that are left to get him home and get him on a more normal baby schedule.
S
He finally went in for his routine MRI today I asked to go with just to see what it was like. Kinda boring TBH lol. Very loud and boring. He did fine the first half of the scan the second part that the MRI machine made some loud ticking noise upset him a lot to where all he did was scream. Bear in mind he was velcroed down and he was still finding a way to move lol. So they only got half his brain scanned and the hope is that's all the doctors need. Otherwise, he'll have to go back down for the other half and hopefully he'll be more cooperative or they'll have to sedate him. I kinda doubt they're going to ask for another MRI since it was just a routine/checking to make sure all is ok scan.
His oxygen is usually around 21% (what we breathe) last few days so that's good only having to be bumped up a few times. He's had a few more issues with spitup getting caught in his throat (mostly from him pushing to try to get out gas/poo) so that's a new not pleasant development. He brady's pretty hard when this happens and the worry always is he'll get some of it in his lungs. Thankfully, nothing in his lungs and we've able to get him to overcome the bradys/dstats pretty well.
I got in the mail the request from the doctors for how long they have requested him to stay and it has it through Feb. 11th. So he'll probably be there through at least then. I'm getting more and more feeling he'll be there past that date. He's just not progressing on his feeds well enough to get that tube out. Today he was mostly fed by tube all day just too tired to breastfeed or bottle feed. So we'll see, he's doing well overall and a few setbacks here and there but nothing to be unexpected. I feel pretty blessed that we've dodged a few huge bullets and just pray we can overcome these few milestones that are left to get him home and get him on a more normal baby schedule.
S
Monday, February 2, 2009
2-1-2009 Zach Update
He was doing well today, big sister came with to visit/hold him etc. He did well most of the day other than some burping up incidents where he had some hard time with some spitup. He's ok just a bit scary for a minute while we worked out some of the spitup.
He's still 6lbs 8ounces. He's been pooping a lot more regularly now with the new fortifier which seems to be keeping his intestinal distress to a minimum. He was very awake for a lot of today which was nice to see. He's getting more and more hungry which is a good sign.
His PDA although is still open they barely hear it so it's closing again so that's a good sign. We finished putting together all the items for his homecoming on Saturday. Crib, bassinet, swing and cleaned the house top to bottom. So now we're just waiting on him. Still no word when he'll be home but this week he's considered 40 weeks and full-term. So it'll be any day now (we hope).
S
He's still 6lbs 8ounces. He's been pooping a lot more regularly now with the new fortifier which seems to be keeping his intestinal distress to a minimum. He was very awake for a lot of today which was nice to see. He's getting more and more hungry which is a good sign.
His PDA although is still open they barely hear it so it's closing again so that's a good sign. We finished putting together all the items for his homecoming on Saturday. Crib, bassinet, swing and cleaned the house top to bottom. So now we're just waiting on him. Still no word when he'll be home but this week he's considered 40 weeks and full-term. So it'll be any day now (we hope).
S
Subscribe to:
Posts (Atom)
Posts
