Time has really flown since Samuel came home! He came home about a month ago now. I can't hardly believe it! Some things important things have happened and I will focus on those in this post.
We went to the eye doctor 3 times since he came home and he has now been declared ROP free! That is great news! He saw less and less each time until he saw nothing of the ROP left. So he doesn't have to go back to that doctor for 4 months. Yippee!
He has steadily been gaining weight since that first bit of weight loss. He is now about 7lb 10oz. We'll get the freshest weight tomorrow!
The pediatricians office has been interesting... They haven't quite figured out that he was born 3 months early and that makes things a little different for him than regular full-term babies. I also thought that his records were sent over from the NICU, but now I question if they truly were. They were trying to get me to schedule a "2 month" check-up to give him his 2 month shots. If they truly were looking at his record they would have seen that he received those before his discharge... So we are in the process of getting switched over to a different pediatrician, who also happens to be a neonatologist. The only trick is he's really good so his schedule is totally booked! We do finally have an app. scheduled with him, though not until the end of the month...
We still have a visiting nurse coming to check weight and he is still on oxygen. We are hoping and praying that he can quit the oxygen soon. I personally don't think he really needs it anymore, but alas, we shall see, when the visiting nurse comes tomorrow I want to talk with her about that more and see what she thinks. She could have some good suggestions about getting in with the doctor and deciding further about oxygen.
That being said, Sam did give us a little bit of a scare last weekend and we ended up at the doctor's office on Saturday (his due date). He kept dropping his oxygen really low just after eating (and just before too because he thinks diaper changes are the worst form of torture known to mankind...). So we went in and the doctor thinks Sam has some reflux. We've been trying some simple remedies at home (like holding him more vertically for about a half hour after eating) and he seems to be reacting well to that.
We also have Sam sleeping on his own again! If you remember when he first came home from the NICU he decided that he needed to be held 24/7, well we didn't completely agree. Though we LOVE holding our son, it is nice to be able to have him sleep without being held as well. So now we have him sleeping mainly in his bassinet and occasionally on us. Let's just say Mom and Dad are now getting a bit better sleep (even if it is just in apr. 2 hour increments...).
As of last check-up we decided to try only 2 bottles of fortified milk a day. This means I get to nurse him one more feeding a day and I don't have to pump AS much. Please pray that he still shows good weight gain with one less fortified bottle a day.
I think that is it with big updates. We are loving having him home though it definitely is more tiring having him home (though I still have not been as tired as I was when I was pregnant). Maybe the next big thing we can work on (other than getting him OFF oxygen) would be getting him to sleep longer at night? We can only hope!
Showing posts with label ROP. Show all posts
Showing posts with label ROP. Show all posts
02 April 2012
The Finish Line
As I write this Samuel's discharge papers are getting finished up and Ben is driving home from Nebraska (with a stop in Des Moines). When Ben gets here we'll go through the discharge papers together and bring our little boy home for the first time.
It's all kind of surreal really. I mean all we have known about parenting has been our time in the NICU. As frustrating as it is to be in the NICU it definitely has come with some perks. Now we have to say goodbye to our "babysitters," farewell to 3 meals a day that we don't have to cook and so long to immediate medical assistance when something happens. This will be a new transition of sorts.
We will have a transition kind of like that of regular non NICU new parents, just a little different. Because of the traces of ROP (retinopathy of prematurity) they saw, he's back on oxygen. Apparently there is some evidence that keeping those o2 levels high decreases the growth of ROP. So, he's going home on oxygen (which is kind of scary!). Then there's a positive side, we know our son pretty well already. Most parents start getting to know their baby at the hospital, but then really get to know them at home, we have a bit of a head start on that! Of course, they have warned us, that babies tend to change some when they get home and develop some new patterns. So we'll still be getting to know him!
The last few days have been very uneventful and we actually probably could have gone home yesterday. Over the weekend he was having some borderline temps and the doctor was somewhat hesitant to send him home on Sunday. When talking he asked me what I preferred. I told him that I honestly preferred Monday over Sunday because then Ben could be here to help get him home and set up. So today it is and things continue to go well!
I can't speak for Ben, but I know I am sure going to miss the NICU. I have spent more time in the NICU in 2012 than anywhere else. The staff here have become friends and I will miss seeing them. The doctors and nurses have been just fantastic in every way possible. So as excited as I am to bring our baby home, I am also sad to see this chapter close for other reasons.
This year is going to be different, but as it has already proven, different isn't necessarily bad, in fact so far, different has been amazing! This will be the first year since I studied abroad to not be involved in Holy Week and Easter services, but that's ok. Right now, with Sam's immature immunity system and his needing to conserve some energy for eating, that is what is best for our boy. I don't know when I will start showing up at Church with him, but you can bet when I do, he will be kept very close to me and away from everyone else (at least for a little while). Eventually I will let others touch and hold him, but at first....
I digress... We are going home this afternoon and I can't wait! I think one thing I am looking forward to is him just being there and I don't have to shower before driving over to nurse him, I can shower when it's convenient because I won't be going out into public first thing in the morning!
The next post... will be from our house and no longer from the NICU!
It's all kind of surreal really. I mean all we have known about parenting has been our time in the NICU. As frustrating as it is to be in the NICU it definitely has come with some perks. Now we have to say goodbye to our "babysitters," farewell to 3 meals a day that we don't have to cook and so long to immediate medical assistance when something happens. This will be a new transition of sorts.
We will have a transition kind of like that of regular non NICU new parents, just a little different. Because of the traces of ROP (retinopathy of prematurity) they saw, he's back on oxygen. Apparently there is some evidence that keeping those o2 levels high decreases the growth of ROP. So, he's going home on oxygen (which is kind of scary!). Then there's a positive side, we know our son pretty well already. Most parents start getting to know their baby at the hospital, but then really get to know them at home, we have a bit of a head start on that! Of course, they have warned us, that babies tend to change some when they get home and develop some new patterns. So we'll still be getting to know him!
The last few days have been very uneventful and we actually probably could have gone home yesterday. Over the weekend he was having some borderline temps and the doctor was somewhat hesitant to send him home on Sunday. When talking he asked me what I preferred. I told him that I honestly preferred Monday over Sunday because then Ben could be here to help get him home and set up. So today it is and things continue to go well!
I can't speak for Ben, but I know I am sure going to miss the NICU. I have spent more time in the NICU in 2012 than anywhere else. The staff here have become friends and I will miss seeing them. The doctors and nurses have been just fantastic in every way possible. So as excited as I am to bring our baby home, I am also sad to see this chapter close for other reasons.
This year is going to be different, but as it has already proven, different isn't necessarily bad, in fact so far, different has been amazing! This will be the first year since I studied abroad to not be involved in Holy Week and Easter services, but that's ok. Right now, with Sam's immature immunity system and his needing to conserve some energy for eating, that is what is best for our boy. I don't know when I will start showing up at Church with him, but you can bet when I do, he will be kept very close to me and away from everyone else (at least for a little while). Eventually I will let others touch and hold him, but at first....
I digress... We are going home this afternoon and I can't wait! I think one thing I am looking forward to is him just being there and I don't have to shower before driving over to nurse him, I can shower when it's convenient because I won't be going out into public first thing in the morning!
The next post... will be from our house and no longer from the NICU!
30 March 2012
The Blip...
Remember how I talked about how the home stretch can mean different things? Well, his home stretch is starting to show us what it means.
The first type of home stretch was when you're going and going and going and then suddenly there's the finish line! -- Yeah, that's not Samuel's home stretch...
The second type I mentioned was when you see it for quite a while before you finally get to it! -- Slowly, but surely progressing? Also not Samuel's home stretch, he's a quick little baby...
Finally one where you see the finish and then you're sent off into a different direction -- Yup, this one is Samuel's home stretch! As of yet, who knows how many detours we'll have to make on the way to the finish line, but we just made one.
What I didn't tell you when writing that post is that we thought Samuel would be coming home today (Thursday). Well, that didn't exactly happen, everything was going great for it until yesterday, so this was a very sudden detour indeed.
In order to fully explain I have to back up to Tuesday night. We opted to have Samuel vaccinated and as discharge was getting closer and closer we decided to give them to him on Tuesday. So Tuesday night, during the first cares of the night shift, we gave him some immunizations. Of course he didn't entirely appreciate it (and by that I mean turning beat yet and crying as loud as he could with each shot), but that's to be expected. Most people, child and adult alike, don't really like shots.
Tuesday night he was extra grunty (preemies come as a small bundle of grunts, I mean squeaks, ok, so they just makes lots and lots of special preemie sounds). Which meant I didn't hardly sleep. On Monday I had started sleeping in Sam's room so we can be nursing in the middle of the night as well. Him grunting and fussing just a little all night made it mighty hard for me to sleep.
That morning he only took 20mL of his 50mL bottle, then the next feeding he nursed very lazily. Samuel was also being very grumpy. He seemed to calm down some so we tried to do his 90 minute car seat check (mainly to see that he keeps his oxygen up while in the car seat) and failed it within the first 10 minutes.
Then he seemed better, he ate really well at the next feedings, we managed to do the car seat check again and he passed with flying colors. He seemed a little more content again. Then night shift started. The first feeding for night shift he woke up an hour late. Now I understand flexibility in scheduling, but he was waking up like clock work up till that point, him waking up a whole hour late was unusual.
We gave him a bath, checked him over and Ben settled down to give him another bottle. Again he only took 20mL of the 50mL, not a normal thing for Sam to do. We put him back down in his crib, checked his temperature again and decided to bundle him up warmly. They swaddled him in 2 more blankets with hot packs and then laid another blanket on top. They also put a hat on him (infants temp control through their heads).
Based on when he took the bottle he was due to eat again at 1:30am, but maybe earlier as he ate so little. He didn't wake up to eat at the next time, at 1:45 we decided to try to wake him up to eat. We got him into position, but no matter how hard we tried, he just wouldn't. We managed to get him to latch and swallow some milk that I squeezed out, but that was it. The decision was made, we were going to have to put a new tube down his throat and he was going to get moved into an isolette (you know, the one that he wasn't ever in before because he went from the fancy one to the bed).
******continued writing on Friday******
With that decision I decided to go to sleep, so I laid down on the little sofa/bed thing they have the rooms and passed out almost immediately and didn't wake up until 6:30am. It sounded like things were pretty calm while I was sleeping, Samuel took the tube feeding well, then right before I woke up the nurse managed to give him a full bottle. So that was great to hear, that meant that he was on the rebound, eating for himself again.
So I pumped, headed to the shower, grabbed breakfast and tried to relax a little. We dilated his eyes at 7:30 for his eye appointment (he was not happy about that, it took 2 nurses to get his eyes open enough for the drops... At 8am (this is all Thursday morning now) the decision was made to see how he does back in the crib.
The belief was, as mentioned already, that it was a reaction to the vaccines, with that the doctors thought that if we can just help him get back to his normal place we should be able to take the supports used to do that away and he should be fine. So out with the crib. After he was in the crib I realized I never took a photo of him in that isolette than he only spent about 5 hours in (but he'd never been in one like it before). Oh well... You could say I was somewhat tired and stressed feeling at the time.
The opthamalogist then came around 8:30 to do the eye exam. They were trying out new equipment that actually takes video of the exam from his perspective. The tricky thing they were finding is that even though the doctor can see things just fine, if he didn't have the linse lined up just right, it didn't show up on the monitor. He couldn't however look at the monitor to see because that would point the camera at the monitor. Overall they seemed to like the new equipment they're trying out and that "issue" is more a matter of practice than anything else.
My hope going into the appointment was that his eyes would continue to check out as immature (which is exactly what they are still, as he isn't due for another month to be born!) and we would be told to he'd be seen in 2 weeks. Well, that didn't exactly work out that way... They found some beginnings of retinopathy of prematurity on the outer edges of both eyes. It isn't much yet, so we are now on the weekly appointment schedule. How many of you know who Stevie Wonder is? Yeah, ROP (retinopathy of prematurity) is why he went blind. Now with this kind of monitoring we are able to catch ROP soon and there are procedures that can be done when it is caught at the right stage that can prevent blindness. Hence weekly appointments. If it looks more concerning in a week, we'll be going in even more frequently.
So that wasn't exactly the news I wanted to hear from that check up. But we have a preemie and with that comes all sorts of fun preemie things. I know my worrying about it isn't going to help at all, so I have decided not to be worried. Samuel is doing fantastic despite these "blips."
Yesterday (Thursday, the day after the long night), he was back to his normal Samuel self again. He was being feisty during cares and checks (definitely did not like his diaper getting changed again), demanded food when he was hungry (which I think he was playing catch up for not eating much the shift before, he only had 2 1/2 of the 4 feedings) and was just overall a more content and happy baby.
Along with putting him back in a crib they weaned him back off of oxygen by 3pm. So he is no longer on oxygen again! They aren't sure if they will be able to keep him off, so they might train me on the monitors and oxygen this weekend, just in case he goes home on it.
Last night we also had some fun. He was being fussy after his 6:30 feeding. I had already tried to burp him and only got littles ones out of him (he can sure burp loud though, don't let his size fool you!). I tried holding him and he didn't quiet down. As he just ate, I didn't try feeding him because he showed me that he was clearly done already. I tried holding him in different positions, but nothing seemed to help. So I checked his diaper. Sure enough he'd pooped. I started cleaning up, had a clean one under him, had pulled out the dirty one and was just about to finish wiping when he squirted out a bunch more. It kind of sounded like a ketchup bottle when it's almost empty and it squirts out a glob more...
Well he really squirted and got his sleeper dirty, his swaddle sack dirty and his sheet dirty... So I took that recently fresh diaper out and put a truly fresh diaper under him, closed it up real quick and just waited while he grunted and pushed the rest out. This was also happening at shift change, so when the night nurse came in I let her know what happened and said that this might be easier to clean up with a bath. So that's what we did! The little guy got 2 baths for 2 days in a row! That normally doesn't happen, but he was a messy little pooper....
That is basically what our little blip was. We went from being told he'll likely discharge on Thursday to being told the earliest he can discharge is Sunday (which is code for he MIGHT go home Sunday, but it easily could be after Sunday). So we are back to not knowing how much longer we'll be here, but knowing that he is receiving excellent care and we only want to bring him home when he is truly ready to be brought home.
After all, can you imagine how much of a basket case I would have actually been in if we were home? As it was, I was slightly emotional as this was happening in the middle of the night, but I very tired from trying to not fall asleep and just wanting to sleep, but wanting to make sure Samuel was ok. When I woke up I was able to simply be extremely grateful that it happened before we were discharged. I know I keep saying how the staff is here great and I truly mean that. I know I don't have to worry about Samuel here. Today he's still doing great and I'm doing great and we are just hanging out waiting for him to show us he's actually ready to go home.
:-)
Oh and those of you on facebook, the crib did beat him home.
05 March 2012
Eyes, Crib, Nasal Canula
So a lot has happened since the last time I wrote, and I am sorry for not updating sooner! Let me start with last Thursday, March 1st.
Thursday was a busy day for the little guy! It started with a visit from a friend of mine I met on Iowa Ambassadors of Music (I went on that the summer after high school, we toured Europe as a band and a choir for about 2 weeks), so she is from Iowa but currently lives in New Mexico. We got along really well on the trip, but this was the first time I'd seen her since then! Well, she arrived shortly after they had dilated Samuel's eyes for his eye exam with the opthamologist.
Eye exams are pretty standard procedure in the NICU with preemies. Preemies are at rist for something called Retinopathy of Prematurity (ROP). Basically when this occurs the blood cells formed incorrectly. In fact that just went crazy forming vessels and can actually cause the retina to become somewhat detached. This is a very bad thing of course if it happens and can cause blindness. If they catch ROP in the early stages there is a procedure they can do to try to prevent blindness. So around 30/31 weeks gestation they get seen by an opthamologist who then sees the baby every 2 weeks until the due date (more frequently if he sees something of concern).
During his eye exam the doctor's special head gear he uses actually has mirrors on it that allowed me to see into Samuel's eye (of course I had to looking at exactly the right spot, so if he moved slightly I had to move more greatly to find Sam's eye again, but the work was worth it to see inside of Sam's eye!). The doctor's verdict was that he has immature eyes, which is completely normal for his gestational age. So for now, and hopefully until his due date, we'll be on the every other week routine. We are happy to know his eyes are developing normally!
That afternoon he took a bath. So he had a pretty busy day for a 5 week old baby who hasn't even reached his due date yet! Ben was somewhat annoyed because on Wednesday Sam didn't seem interested in sleep all day, then he had such a busy day on Thursday, that both nights he was fast asleep by the time Ben arrived at the NICU... Oh well, he'll see plenty wakeful moments with Sam soon enough I'm sure!
Friday he got moved into a crib! So that was very exciting! With him in a crib instead of the isolette, we have easier access to him and are allowed to pull him out to hold him at our discretion. We were asked, however, to let him sleep if he is sleeping, so that he gets the maximum amount of good sleep possible. He's been doing pretty well in the crib so far, though they heightened noise volume and amount of lights was an adjustment for him, it's not so muffled and dark as it was in the isolette!
The next big change was to his oxygen parameters. They set the parameters for his oxygen saturation levels (which is what we look at to see his apnea spells) based on his gestational age. So far they have pretty much been set at 85-92%. However at 32 weeks gestation (which was Saturday) they go up to 90-95% and I was told at 34 weeks it will change one last time to 96-100%. On Sunday we switched his parameters to the 32 week benchmark. It's very important that they monitor this because having too much or too little oxygen can cause eye problems in the future.
Yesterday, the first day with the new oxygen parameters, he did really well. In fact, when we kangarooed in the afternoon he seemed to want his paci, so I gave it to him. It was during his feeding (a time when he's tended to drop his oxygen levels) and he did not drop them at all while sucking on it. Which impressed me because he was sucking on it quite vigorously for about 40 minutes! He was sucking on it so hard the nurse could hear him on the other side of the room!
Today has been a different story with the new parameters. In fact all day he's been up and down with his oxygen. Every time the nurse went to grab a nasal canula to give him oxygen, he'd bring it up and keep it up for a while. Finally this evening we put him on a nasal canula (you see adults with these in public, the clear tube that hangs on their ears and sticks in their nose). This is very common when the parameters change. In fact most of the time his oxygen dropped, it would have been in the perfect place for his old parameters. It was great to see him so interested in his paci, this is a good sign for the oral feedings that will hopefully start little by little in the next 2 weeks.
We are pleased to know that Sam is progressing quite well and nothing that has happened as been out of the ordinary. Today he's been kind of fussy, so I kept picking him up to hold him for a bit, then putting him back down to pump. Before I'd finish pumping he'd be whining again and I would pick him up. Welcome to parenthood, right?
Thursday was a busy day for the little guy! It started with a visit from a friend of mine I met on Iowa Ambassadors of Music (I went on that the summer after high school, we toured Europe as a band and a choir for about 2 weeks), so she is from Iowa but currently lives in New Mexico. We got along really well on the trip, but this was the first time I'd seen her since then! Well, she arrived shortly after they had dilated Samuel's eyes for his eye exam with the opthamologist.
Eye exams are pretty standard procedure in the NICU with preemies. Preemies are at rist for something called Retinopathy of Prematurity (ROP). Basically when this occurs the blood cells formed incorrectly. In fact that just went crazy forming vessels and can actually cause the retina to become somewhat detached. This is a very bad thing of course if it happens and can cause blindness. If they catch ROP in the early stages there is a procedure they can do to try to prevent blindness. So around 30/31 weeks gestation they get seen by an opthamologist who then sees the baby every 2 weeks until the due date (more frequently if he sees something of concern).
During his eye exam the doctor's special head gear he uses actually has mirrors on it that allowed me to see into Samuel's eye (of course I had to looking at exactly the right spot, so if he moved slightly I had to move more greatly to find Sam's eye again, but the work was worth it to see inside of Sam's eye!). The doctor's verdict was that he has immature eyes, which is completely normal for his gestational age. So for now, and hopefully until his due date, we'll be on the every other week routine. We are happy to know his eyes are developing normally!
That afternoon he took a bath. So he had a pretty busy day for a 5 week old baby who hasn't even reached his due date yet! Ben was somewhat annoyed because on Wednesday Sam didn't seem interested in sleep all day, then he had such a busy day on Thursday, that both nights he was fast asleep by the time Ben arrived at the NICU... Oh well, he'll see plenty wakeful moments with Sam soon enough I'm sure!
Friday he got moved into a crib! So that was very exciting! With him in a crib instead of the isolette, we have easier access to him and are allowed to pull him out to hold him at our discretion. We were asked, however, to let him sleep if he is sleeping, so that he gets the maximum amount of good sleep possible. He's been doing pretty well in the crib so far, though they heightened noise volume and amount of lights was an adjustment for him, it's not so muffled and dark as it was in the isolette!
The next big change was to his oxygen parameters. They set the parameters for his oxygen saturation levels (which is what we look at to see his apnea spells) based on his gestational age. So far they have pretty much been set at 85-92%. However at 32 weeks gestation (which was Saturday) they go up to 90-95% and I was told at 34 weeks it will change one last time to 96-100%. On Sunday we switched his parameters to the 32 week benchmark. It's very important that they monitor this because having too much or too little oxygen can cause eye problems in the future.
Yesterday, the first day with the new oxygen parameters, he did really well. In fact, when we kangarooed in the afternoon he seemed to want his paci, so I gave it to him. It was during his feeding (a time when he's tended to drop his oxygen levels) and he did not drop them at all while sucking on it. Which impressed me because he was sucking on it quite vigorously for about 40 minutes! He was sucking on it so hard the nurse could hear him on the other side of the room!
Today has been a different story with the new parameters. In fact all day he's been up and down with his oxygen. Every time the nurse went to grab a nasal canula to give him oxygen, he'd bring it up and keep it up for a while. Finally this evening we put him on a nasal canula (you see adults with these in public, the clear tube that hangs on their ears and sticks in their nose). This is very common when the parameters change. In fact most of the time his oxygen dropped, it would have been in the perfect place for his old parameters. It was great to see him so interested in his paci, this is a good sign for the oral feedings that will hopefully start little by little in the next 2 weeks.
We are pleased to know that Sam is progressing quite well and nothing that has happened as been out of the ordinary. Today he's been kind of fussy, so I kept picking him up to hold him for a bit, then putting him back down to pump. Before I'd finish pumping he'd be whining again and I would pick him up. Welcome to parenthood, right?
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