All I've wanted is to have a good Friday this week. I wanted to be able to relax, watch movies, cuddle my hubby, and just unwind from a pretty nervous week. Everything has been going as planned today, and I've been anxiously waiting for my nightly call with John's nurse, hoping that the update wouldn't undo everything. Well, my boy has been working extra hard today to make sure I wouldn't be disappointed. I just got off one of the most exciting calls I've had so far.
He's measuring at 1600grams, only 200 grams from where he needs to be to start weaning to an open crib. I can hardly wait for that because we can hold him more often and be more active as parents. We also get to dress him in all the adorable preemie size outfits we've been buying--you know, those cute teeny outfits you see in the baby section that you secretly hope you could fit on your baby before realizing how terrible you are for wishing for a preemie, even if just for a moment? Yeah, we've got a bunch of those little clothes. And he's about to be wearing them. I know he's going to drop a few ounces once that IV is gone since he's really swollen right now, but he should be to 1800 in the next week. It's also reassuring that his body temperature is really stable right now. He's so close to maintaining it on his own already!
His nurse also told me she can't hear his heart murmur anymore, and that his other nurses haven't been hearing it either, so that opening must have closed up. His oxygen levels are very stable right now too, and she is pretty sure the two are related. She was actually shocked at how good he's doing breathing wise since she's usually has him at night and she's been off for the last 6 days. The last time she had him he had just been diagnosed with the infection and had been up and down on oxygen levels since he was born. Now today he's looking good, acting good, and just being an all around big boy.
He had another renal ultrasound to check the condition of the fungus in the kidneys. We don't have the official report yet, but the preliminary word is that everything looks clear. If that's the case we just have to stick with 4 more weeks of anti-fungals to make sure it stays clear.
He just needs to wok up on his feeds now and hopefully he has no more tummy issues. He needs to be eating milk so he can get big and strong so he can get the hell out of there!
Friday, February 25, 2011
Thursday, February 24, 2011
Fingers crossed (again)
So we're trying the eating thing again today. The docs think his belly accidentally got filled with air because they've had some faulty devices on their high-flow equipment. Sometimes the high-flow gets turned way up on accident because it's really touchy. They've replaced the equipment a few times, but we still catch it accidentally turning up, especially when we take him out of his bed to hold him. The extra air, combined with backed-up bowels, is hopefully the culprit with his latest eating drama. They gave him a suppository last night and he apparently had the biggest poop ever, and suctioned out all the air from his tummy, so hopefully that gets things moving along again and he can continue eating and growing.
He was really sweet today when I held him. When doing Kangaroo Care, you hold your naked little baby vertically on your bare chest with their ear over your heart. Usually he gets really active and does push-ups on my chest so he can arch waaaay back to see my face, so I have to lay him at an angle, if not completely horizontal so he can look at me. This boy is so strong. If I don't have a good hold on him, he could push himself all the way out until he falls over backward. The nurses are always commenting on how strong he is, that is after they've commented on how cute he is :-) Today I held him at an angle and he kept smiling at me until he went to sleep. I know we can't help him much on the medical side, but I'm happy I can be there to give him a positive experience with all the negativity he has to go through, like repeated IV pokes and other procedures. He did really well when I held him today--if he stops breathing or his heart slows down, they basically say he doesn't want to be held, and he has to go back to The Box. I'm glad he did well because I was about to go to blows in order to hold him today. If his nurse had told me no, I would've gone off. They're constantly changing his IVs, drawing blood, doing eye exams, suctioning his belly, giving ultrasounds, etc., so I get mad when they tell me that holding him may be "too stressful". Thankfully his nurse today didn't tell me no, so I didn't have to whip out my hamster style.
Though his oxygen saturation levels were stable, he was breathing rapidly. That made me nervous, as everything makes me nervous these days, but they're not too worried about it yet. I just hope he's only a little stressed with everything they're doing, and he calms down in the next day. If not, they'll start looking at his lungs to check for fluid.
As of tonight he's up to exactly 3 1/2 pounds. He's very, very swollen from the IV fluids so I expect him to lose a few ounces once he's off the fluids, which will be once they work him back up to his full milk feedings. I'm just glad to know that he's gaining some weight even while he's not getting milk. I hope in a week when he's feeling all better he'll be at that 4 pound level where he'll start getting weaned to an open bed. I can't wait!!!!!
Tomorrow he'll be 33 gestational weeks, only about 7 more weeks to go! I'm hoping he has a fantastic day so we can all relax and enjoy our Friday. I'm sad that tomorrow is the last time John and I will visit him together during the week for a while since John is going back to the day shift for the next two weeks. At least I get a break from riding Trax for 2 weeks. As much as I enjoy not having to deal with traffic, I don't really know how I feel about the people of public transit. Oh who am I kidding? I'm gonna miss these weirdos: http://www.peopleofpublictransit.com/
He was really sweet today when I held him. When doing Kangaroo Care, you hold your naked little baby vertically on your bare chest with their ear over your heart. Usually he gets really active and does push-ups on my chest so he can arch waaaay back to see my face, so I have to lay him at an angle, if not completely horizontal so he can look at me. This boy is so strong. If I don't have a good hold on him, he could push himself all the way out until he falls over backward. The nurses are always commenting on how strong he is, that is after they've commented on how cute he is :-) Today I held him at an angle and he kept smiling at me until he went to sleep. I know we can't help him much on the medical side, but I'm happy I can be there to give him a positive experience with all the negativity he has to go through, like repeated IV pokes and other procedures. He did really well when I held him today--if he stops breathing or his heart slows down, they basically say he doesn't want to be held, and he has to go back to The Box. I'm glad he did well because I was about to go to blows in order to hold him today. If his nurse had told me no, I would've gone off. They're constantly changing his IVs, drawing blood, doing eye exams, suctioning his belly, giving ultrasounds, etc., so I get mad when they tell me that holding him may be "too stressful". Thankfully his nurse today didn't tell me no, so I didn't have to whip out my hamster style.
Though his oxygen saturation levels were stable, he was breathing rapidly. That made me nervous, as everything makes me nervous these days, but they're not too worried about it yet. I just hope he's only a little stressed with everything they're doing, and he calms down in the next day. If not, they'll start looking at his lungs to check for fluid.
As of tonight he's up to exactly 3 1/2 pounds. He's very, very swollen from the IV fluids so I expect him to lose a few ounces once he's off the fluids, which will be once they work him back up to his full milk feedings. I'm just glad to know that he's gaining some weight even while he's not getting milk. I hope in a week when he's feeling all better he'll be at that 4 pound level where he'll start getting weaned to an open bed. I can't wait!!!!!
Tomorrow he'll be 33 gestational weeks, only about 7 more weeks to go! I'm hoping he has a fantastic day so we can all relax and enjoy our Friday. I'm sad that tomorrow is the last time John and I will visit him together during the week for a while since John is going back to the day shift for the next two weeks. At least I get a break from riding Trax for 2 weeks. As much as I enjoy not having to deal with traffic, I don't really know how I feel about the people of public transit. Oh who am I kidding? I'm gonna miss these weirdos: http://www.peopleofpublictransit.com/
Wednesday, February 23, 2011
So frustrating!
I have seriously never felt so frustrated and helpless in my life. Things had been so great for the last few weeks that I got accustomed to hearing "He's doing great!" every time I called for an update or showed up to a visit. Since he got sick with this infection last week, things are just going back and forth. Unfortunately right now they feel like they're going back.
So he had a renal ultrasound yesterday to look for structural issues that may have caused his UTI. They found fungus balls in his kidneys, so they are waiting for the anti-fungal meds to break up the balls and will keep him on the meds for 28 days after they disappear. To make sure other organs aren't infected, they did additional ultrasounds today. So far his liver and eyes are fungus free, and though the final report on his heart isn't back, the preliminary results show that he's ok there as well. Also, they say his kidneys look better today than they did yesterday. This is all great news, so I'm frustrated and being so down about all of this.
The thing that bothers me is when he has problems with digestion. He had been tolerating food since they started feeding him again on Sunday. Unfortunately I just got a call telling me his belly is swollen, and they suctioned a little blood out of his belly when checking for residual food. This means we're back to square one on that front. They've stopped his feedings, took some x-rays, and are venting the gas out of his belly with a big tube. So far it doesn't look like infection, it just looks like his belly is full of a lot of air. He hasn't pooped since they started feeds again, so things just don't appear to be moving through. They think it's the high-flow oxygen that is filling his belly--basically the same problem he had when he was on CPAP. Unfortunately the cannula is the end of the road, short of breathing completely on his own, so there isn't much they can do but hope he starts digesting. They're going to run more blood labs to look for signs of infection just in case, and will possibly give him a suppository tomorrow. This is the exact same thing that happened the last time he got an infection, and the suppository (and transition to the cannula) is what helped. I pray that it is all this is. It's just so hard to think that my poor little baby is starving. It makes me want to punch something!
His platelet count is also low this evening after it had started to rise with their last tests. If he drops much lower he has to get a platelet transfusion. He had to get some extra blood again today to make up for these tests. He was so pale when I saw him today, and he was requiring extra oxygen. Hopefully this new blood helps him again.
The last crummy big of info is that he got another eye exam today and he has stage 1 ROP. This is the eye disease that happens with preemies that can lead to blindness (though that is pretty rare these days). 75% of preemies with his birthweight develop it, so it's common. Because his last exam came back fine, I didn't really study up on ROP in effort to not scare myself if it wasn't necessary, so I wasn't really prepared to hear that now he has it. Basically ROP is abnormal growth of the blood vessels that come out of the retina. Severe ROP is where the vessel growth is so bad the retina can detach. There are 5 stages of ROP, with 1 being mild. He may progress to further stages, or it may get better on it's own, which is likely. Some estimates put 90% of cases resolving on their own. If it hits stage 3, they'll perform laser surgery to stop the abnormal growth. He is no longer at risk once the blood vessels have completely grown out, which happens when he hits about 40 weeks. We only have 7 more weeks to go, so here's to praying it doesn't get worse! The outlook is pretty good, so I shouldn't panic yet. It's just when you pile this on top of everything else that's going on, it's so overwhelming.
I wish I could go back to the days where they were saying he just needs to grow. I wish I could make him better. I wish he was still in my belly and we didn't have to deal with any of this. Gooooooo.
So he had a renal ultrasound yesterday to look for structural issues that may have caused his UTI. They found fungus balls in his kidneys, so they are waiting for the anti-fungal meds to break up the balls and will keep him on the meds for 28 days after they disappear. To make sure other organs aren't infected, they did additional ultrasounds today. So far his liver and eyes are fungus free, and though the final report on his heart isn't back, the preliminary results show that he's ok there as well. Also, they say his kidneys look better today than they did yesterday. This is all great news, so I'm frustrated and being so down about all of this.
The thing that bothers me is when he has problems with digestion. He had been tolerating food since they started feeding him again on Sunday. Unfortunately I just got a call telling me his belly is swollen, and they suctioned a little blood out of his belly when checking for residual food. This means we're back to square one on that front. They've stopped his feedings, took some x-rays, and are venting the gas out of his belly with a big tube. So far it doesn't look like infection, it just looks like his belly is full of a lot of air. He hasn't pooped since they started feeds again, so things just don't appear to be moving through. They think it's the high-flow oxygen that is filling his belly--basically the same problem he had when he was on CPAP. Unfortunately the cannula is the end of the road, short of breathing completely on his own, so there isn't much they can do but hope he starts digesting. They're going to run more blood labs to look for signs of infection just in case, and will possibly give him a suppository tomorrow. This is the exact same thing that happened the last time he got an infection, and the suppository (and transition to the cannula) is what helped. I pray that it is all this is. It's just so hard to think that my poor little baby is starving. It makes me want to punch something!
His platelet count is also low this evening after it had started to rise with their last tests. If he drops much lower he has to get a platelet transfusion. He had to get some extra blood again today to make up for these tests. He was so pale when I saw him today, and he was requiring extra oxygen. Hopefully this new blood helps him again.
The last crummy big of info is that he got another eye exam today and he has stage 1 ROP. This is the eye disease that happens with preemies that can lead to blindness (though that is pretty rare these days). 75% of preemies with his birthweight develop it, so it's common. Because his last exam came back fine, I didn't really study up on ROP in effort to not scare myself if it wasn't necessary, so I wasn't really prepared to hear that now he has it. Basically ROP is abnormal growth of the blood vessels that come out of the retina. Severe ROP is where the vessel growth is so bad the retina can detach. There are 5 stages of ROP, with 1 being mild. He may progress to further stages, or it may get better on it's own, which is likely. Some estimates put 90% of cases resolving on their own. If it hits stage 3, they'll perform laser surgery to stop the abnormal growth. He is no longer at risk once the blood vessels have completely grown out, which happens when he hits about 40 weeks. We only have 7 more weeks to go, so here's to praying it doesn't get worse! The outlook is pretty good, so I shouldn't panic yet. It's just when you pile this on top of everything else that's going on, it's so overwhelming.
I wish I could go back to the days where they were saying he just needs to grow. I wish I could make him better. I wish he was still in my belly and we didn't have to deal with any of this. Gooooooo.
Sunday, February 20, 2011
Feeling Better & Getting Bigger
What a difference a day makes! Here is lil John Friday morning:
Here he is Saturday night:
It has been a pretty interesting weekend, but things are going much better since we found out little John was sick last Thursday. Thursday night after the nurses ordered blood analysis after they felt something might be wrong, everything came back normal except his platelet count. Because of this, a full battery of tests was ordered, to include further blood tests as well as a urinalysis and a spinal tap. Within hours the urine test came back showing both a bacterial and fungal infection. They ordered further fungal tests on his blood to see if the infection went beyond his urinary tract and immediately started meds to treat the fungus to go with the other antibiotics they had started as a precaution. Since then, nothing has come back abnormal so we're just waiting to see how things progress, and hoping things only get better. He had so many IVs when we saw him Saturday morning, and even had one in his head. Thankfully, he just has one in his right hand right now, and that one will go away soon when he can start taking his medicine by mouth.
They stopped his feedings Thursday night because his belly was full of air--an unfortunate side effect when he gets sick. His intestines just slow down when he gets an infection, and his belly needs a rest while he gets nutrition through an IV. The docs were also worried again that he might be developing a scary intestinal infection, or NEC, but he had no symptoms of it and all xrays showed that he was ok. As of 2 pm today he's started his feedings again at just 5 ml at a time, and they'll quickly increase him over the next week back up to the 22 ml he was at before he got sick, as long as his tummy can handle it. After he gets up to the full amount, they'll add back in the extra fortifiers and protein powder to kick up his growth again if he needs it.
He got a blood transfusion Thursday night because of anemia, and ever since he got that he's been acting and breathing much better. He has more energy, looks great, and his oxygen levels are at the lowest they've been for many many days. They're even thinking of starting to weaning him down on his high-flow tomorrow since he's doing so well. The anemia is completely normal, and they try not to treat it as long as he isn't too symptomatic so his body works harder to generate it's own red blood cells instead of relying on donor blood. Hopefully the anemia will start to improve in the coming weeks and his breathing will get better along with it. He was on high flow level of 6 liters (with oxygen as high as 60%) on Friday, is down to 5 today (with oxygen around 25%), and will hopefully be down to 4 tomorrow. We want him to get down to 2 in the next week or two because that is where he needs to be so he can start learning to breastfeed.
Aside from being sick, things are on the up and up. He measured 3 lbs 2 oz last night, which is so exciting for us! I'm sure he'll lose a few ounces once his IV feedings are completely gone since he swells a bit, but I'm sure he'll still be past 3 pounds. He's even getting a double chin and fat rolls on his thighs. He's looking so big these days! Also, he had his second head ultrasound last Thursday and everything is still looking normal with his brain. Hooray!
John and I finally got out of the house with friends for the first time this weekend since baby was born, and though it made me even more tired to stay up so late, it was really nice to see people and experience some of the normal world. I just need to get some extra sleep tonight so I can gear up for another fun-filled week at the hospital. At least tomorrow is a holiday and the big kids are with their other parents this weekend so we can sleep in tomorrow!
"I don't feel good"
Here he is Saturday night:
"Hey guys, what's up? Let's partay!"
It has been a pretty interesting weekend, but things are going much better since we found out little John was sick last Thursday. Thursday night after the nurses ordered blood analysis after they felt something might be wrong, everything came back normal except his platelet count. Because of this, a full battery of tests was ordered, to include further blood tests as well as a urinalysis and a spinal tap. Within hours the urine test came back showing both a bacterial and fungal infection. They ordered further fungal tests on his blood to see if the infection went beyond his urinary tract and immediately started meds to treat the fungus to go with the other antibiotics they had started as a precaution. Since then, nothing has come back abnormal so we're just waiting to see how things progress, and hoping things only get better. He had so many IVs when we saw him Saturday morning, and even had one in his head. Thankfully, he just has one in his right hand right now, and that one will go away soon when he can start taking his medicine by mouth.
They stopped his feedings Thursday night because his belly was full of air--an unfortunate side effect when he gets sick. His intestines just slow down when he gets an infection, and his belly needs a rest while he gets nutrition through an IV. The docs were also worried again that he might be developing a scary intestinal infection, or NEC, but he had no symptoms of it and all xrays showed that he was ok. As of 2 pm today he's started his feedings again at just 5 ml at a time, and they'll quickly increase him over the next week back up to the 22 ml he was at before he got sick, as long as his tummy can handle it. After he gets up to the full amount, they'll add back in the extra fortifiers and protein powder to kick up his growth again if he needs it.
He got a blood transfusion Thursday night because of anemia, and ever since he got that he's been acting and breathing much better. He has more energy, looks great, and his oxygen levels are at the lowest they've been for many many days. They're even thinking of starting to weaning him down on his high-flow tomorrow since he's doing so well. The anemia is completely normal, and they try not to treat it as long as he isn't too symptomatic so his body works harder to generate it's own red blood cells instead of relying on donor blood. Hopefully the anemia will start to improve in the coming weeks and his breathing will get better along with it. He was on high flow level of 6 liters (with oxygen as high as 60%) on Friday, is down to 5 today (with oxygen around 25%), and will hopefully be down to 4 tomorrow. We want him to get down to 2 in the next week or two because that is where he needs to be so he can start learning to breastfeed.
Aside from being sick, things are on the up and up. He measured 3 lbs 2 oz last night, which is so exciting for us! I'm sure he'll lose a few ounces once his IV feedings are completely gone since he swells a bit, but I'm sure he'll still be past 3 pounds. He's even getting a double chin and fat rolls on his thighs. He's looking so big these days! Also, he had his second head ultrasound last Thursday and everything is still looking normal with his brain. Hooray!
John and I finally got out of the house with friends for the first time this weekend since baby was born, and though it made me even more tired to stay up so late, it was really nice to see people and experience some of the normal world. I just need to get some extra sleep tonight so I can gear up for another fun-filled week at the hospital. At least tomorrow is a holiday and the big kids are with their other parents this weekend so we can sleep in tomorrow!
Thursday, February 17, 2011
Sick again? AAAAAAGGGHHH!
Things have been going pretty well the last few weeks, but we just got a call from the nurse practitioner telling us that something is wrong, though they don't know what yet. This is not the kind of phone call you want to get when things have been going so good.
His nurse started getting nervous this morning when I was doing skin-to-skin/kangaroo care. When holding the baby this way, babies typically do better with oxygen and breathing. Instead, John was breathing really rapidly and his saturation was pretty low. Usually his oxygen level is in the 20-30% level when I hold him, but this morning it was at around 50% because he just wouldn't take big breaths. I had to stroke his back and talk to him for the entire hour to get him to stay calm and try to breathe deeply. I thought he was just in a mood, and didn't want to be held. After he went back to his bed, he kept breathing rapidly, but his oxygen needs weren't as high (back to the 30% range).
After big John and I left for the day, the nurse was still nervous about his rapid breathing and noticed his belly was a little distended so she ordered some tests. Nothing too alarming is showing in his xrays, his belly is soft, and he is still passing stool so they don't think it's NEC yet. His red blood count is pretty low right now and they're deciding on another transfusion. They're still waiting for the white blood count results to come back which will indicate infection--if the levels are low they'll start him on antibiotics right away while we wait a few days for the full cultures to come back from the lab. In the meantime they're stopping his feedings to give his belly a rest, and will do more xrays in the morning. If he continues to have a hard time breathing, they'll have to put him back on CPAP.
I'm so frustrated to go through this all over again. This is what happened the week he was born, and it isn't any less scary now even though everything turned out ok the last time. I'm really worried about the breathing issue. Last time he was sick, he didn't really show any symptoms with his breathing. It breaks my heart that he may have to do CPAP again since he didn't do well with it before. It fills his belly with even more air, and makes it harder for him to eat. I also don't get to see his sweet little face when he has to wear that blasted mask, and it makes it scarier when they just look so sick.
Grrrrrr, I feel like things are going backward instead of forward!!!!!
His nurse started getting nervous this morning when I was doing skin-to-skin/kangaroo care. When holding the baby this way, babies typically do better with oxygen and breathing. Instead, John was breathing really rapidly and his saturation was pretty low. Usually his oxygen level is in the 20-30% level when I hold him, but this morning it was at around 50% because he just wouldn't take big breaths. I had to stroke his back and talk to him for the entire hour to get him to stay calm and try to breathe deeply. I thought he was just in a mood, and didn't want to be held. After he went back to his bed, he kept breathing rapidly, but his oxygen needs weren't as high (back to the 30% range).
After big John and I left for the day, the nurse was still nervous about his rapid breathing and noticed his belly was a little distended so she ordered some tests. Nothing too alarming is showing in his xrays, his belly is soft, and he is still passing stool so they don't think it's NEC yet. His red blood count is pretty low right now and they're deciding on another transfusion. They're still waiting for the white blood count results to come back which will indicate infection--if the levels are low they'll start him on antibiotics right away while we wait a few days for the full cultures to come back from the lab. In the meantime they're stopping his feedings to give his belly a rest, and will do more xrays in the morning. If he continues to have a hard time breathing, they'll have to put him back on CPAP.
I'm so frustrated to go through this all over again. This is what happened the week he was born, and it isn't any less scary now even though everything turned out ok the last time. I'm really worried about the breathing issue. Last time he was sick, he didn't really show any symptoms with his breathing. It breaks my heart that he may have to do CPAP again since he didn't do well with it before. It fills his belly with even more air, and makes it harder for him to eat. I also don't get to see his sweet little face when he has to wear that blasted mask, and it makes it scarier when they just look so sick.
Grrrrrr, I feel like things are going backward instead of forward!!!!!
Monday, February 14, 2011
4 weeks old!
For the next two weeks John and I get to visit little John in the morning together since he's working the later shift. When we're done, he meets his carpool at the 33rd Trax station where I hop a train back to Sandy where we left the truck in the morning. Then I have just enough time to get to Riverton so I can get the kids from school and daycare on time. They've jacked up the rate for a one-way ride to $2.25--shows how long it's been since I've taken the train! It's still cheaper than taking the truck, and I dont mind the ride. It at least gives me some time to relax and update this blog. I'll give you one guess where I am right now!
Little John is 4 weeks old today, and it's crazy how fast time has gone by and how far he's come. He weighs 2lbs 11 oz and is 14.5 inches long. He is growing so fast that I can see a difference every single day. We finally got some unoficial results from the echo on his heart last week. The murmur isnt from PDA (yay!), which I blogged about last week. It appers that there is a tiny opening between chambers in his heart that should close on its own as he grows, and it is even a common thing on full-term babies. He is being weaned off the humidity in his isolette today which means he can graduate to the next isolette. This next one has a heating element that makes it easier to wean them to room temperature and an open bed when he reaches about 1800 grams. Hes at 1210 grams now, so he should get there in just a couple of weeks.
Visits are better now that we get to hold him again. We have his nurse practitioner backing us up now. They've told us that even if he's not gaining weight, we should still hold him no matter what his nurses tell us. Today John held him for an hour while he ate his whole 21 ml of lunch. Then he got snuggled up in his bed so he could stare at the valentines we taped to the side of his isolette.
Well, I'm to my stop now so I'm off to pick up the kids and do all my errands and chores. That train ride didnt feel near long enough!
Little John is 4 weeks old today, and it's crazy how fast time has gone by and how far he's come. He weighs 2lbs 11 oz and is 14.5 inches long. He is growing so fast that I can see a difference every single day. We finally got some unoficial results from the echo on his heart last week. The murmur isnt from PDA (yay!), which I blogged about last week. It appers that there is a tiny opening between chambers in his heart that should close on its own as he grows, and it is even a common thing on full-term babies. He is being weaned off the humidity in his isolette today which means he can graduate to the next isolette. This next one has a heating element that makes it easier to wean them to room temperature and an open bed when he reaches about 1800 grams. Hes at 1210 grams now, so he should get there in just a couple of weeks.
Visits are better now that we get to hold him again. We have his nurse practitioner backing us up now. They've told us that even if he's not gaining weight, we should still hold him no matter what his nurses tell us. Today John held him for an hour while he ate his whole 21 ml of lunch. Then he got snuggled up in his bed so he could stare at the valentines we taped to the side of his isolette.
Well, I'm to my stop now so I'm off to pick up the kids and do all my errands and chores. That train ride didnt feel near long enough!
Published with Blogger-droid v1.6.5
Thursday, February 10, 2011
A little TOO active
Though his weight isn't going up much, he is still growing size wise. He's just really skinny still. Today he graduated to a bigger diaper and pacifier. He's developing as he should be, and is incredibly strong. The docs have added protein powder to his feeds, and are bumping up the calories in the fortification they add to his milk. I hope it works! We need him to gain about 750 more grams to get to 1800 grams (4 lbs) so he can hopefully graduate to an open bed. They want him to gain 30-60 grams (1-2 ounces) per day so if he starts gaining like he should, that could be in 2-4 weeks.
He has a new neonatologist today (the staff is always rotating since it's a university setting) and they've ordered an ultrasound on his heart to check out his murmur. He hasn't had any symptoms, but they just want to be sure. We should have those results by morning.
Other than that, my family is slowly going crazy. I can't wait for this to be over so things can be more normal! I'm exhausted and just want to sleep for a few days but can't. My house is a mess and my to-do list is long. Luckily so many people are bringing us dinners or we'd have hot dogs every night. Probably cold ones even. Ick! Marcel has been acting up in class and I got a phone call from his teacher today because of it. Sascha has been making up stories about dreams she's having, because she can't express herself in other ways. Even the dog is having problems. He stopped eating because he chewed up and swallowed a rubber toy, then ripped off a toenail which required a trip to the vet as if I don't already spend enough of my day with doctors! John is the one holding us all together, but with work, school, 2 hours of commuting, and visits to the hospital, he's already busy enough as it is. We know this is just temporary, but sometimes it just doesn't feel like it. Boooooooo!
Published with Blogger-droid v1.6.5
Monday, February 7, 2011
He just wants to come home
The last few days little John has been erratic with his breathing. His oxygen levels have been ranging from 35-50%, and his needs just keep going up and down. For your reference, the room air has about 21% oxygen. He typically doesn't do well on his back, and when he's having a hard time he gets put on his belly. I'm convinced he's just manipulative to the nurses--"I'm gonna hold my breath if you don't put me back on my belly!" I suppose he finally put 2 and 2 together because sometime last night or this morning, his oxygen needs went way down. Today when I showed up, my little man was snoozing away on his back with his oxygen level in the low 20's, and his oxygen saturation at 97 (they like it to be 85-95). What a show off!
After I changed him and took his temperature, I gave him his pacifier because he was trying to eat his fingers. He started sucking away and continued breathing--two HUGE feats for him. These teeny little babies can take a while to learn to suck, and also to breathe while sucking. Not my little guy, his saturation stayed in the 90s, and oxygen around 25%, and I only had to take the binky away once or twice in an hour because of breathing issues. I'm so excited because he should be ready to tackle breast feeding in the next few weeks, once he gets a bit bigger.
All of his swelling from his IV has gone, but unfortunately he lost weight again last night. He's back down to 2 lbs 2 oz, so basically he hasn't gained any real weight in almost a week. I'm praying his weight goes up at least just a little tonight at his 8pm daily weighing. He should be gaining about .5-1 oz per day. The docs aren't concerned yet so I'm just waiting until they tell me otherwise before I freak out. The docs also mentioned a small heart murmur today. As long as he doesn't get symptomatic with his breathing, it should be nothing. Most babies and children experience heart murmurs at some point of childhood. For preemies, it could be related to Patent Ductus Arteriosus--a condition where a blood vessel in the heart that connects the aorta and the pulmonary artery (which sends blood to the lungs) doesn't close after birth. If it stays open, blood floods the vessels in the lungs and breathing problems ensue. It is fixed with medicine or surgery. This is currently happening with little baby Emma, John's first roommate. I feel so bad for her parents having to deal with this! As long as John keeps on breathing as well as he has been, we don't need to be alarmed yet. If his oxygen needs all of a sudden start increasing, they'll do an ultrasound to check for PDA.
We're just going to keep cheering John on for his great health and his fighting spirit until we hear that we should be worried. He just keeps trying to impress us and improve every day. I think he's finally sick of that place and is getting his stuff together so he can come home.
After I changed him and took his temperature, I gave him his pacifier because he was trying to eat his fingers. He started sucking away and continued breathing--two HUGE feats for him. These teeny little babies can take a while to learn to suck, and also to breathe while sucking. Not my little guy, his saturation stayed in the 90s, and oxygen around 25%, and I only had to take the binky away once or twice in an hour because of breathing issues. I'm so excited because he should be ready to tackle breast feeding in the next few weeks, once he gets a bit bigger.
All of his swelling from his IV has gone, but unfortunately he lost weight again last night. He's back down to 2 lbs 2 oz, so basically he hasn't gained any real weight in almost a week. I'm praying his weight goes up at least just a little tonight at his 8pm daily weighing. He should be gaining about .5-1 oz per day. The docs aren't concerned yet so I'm just waiting until they tell me otherwise before I freak out. The docs also mentioned a small heart murmur today. As long as he doesn't get symptomatic with his breathing, it should be nothing. Most babies and children experience heart murmurs at some point of childhood. For preemies, it could be related to Patent Ductus Arteriosus--a condition where a blood vessel in the heart that connects the aorta and the pulmonary artery (which sends blood to the lungs) doesn't close after birth. If it stays open, blood floods the vessels in the lungs and breathing problems ensue. It is fixed with medicine or surgery. This is currently happening with little baby Emma, John's first roommate. I feel so bad for her parents having to deal with this! As long as John keeps on breathing as well as he has been, we don't need to be alarmed yet. If his oxygen needs all of a sudden start increasing, they'll do an ultrasound to check for PDA.
We're just going to keep cheering John on for his great health and his fighting spirit until we hear that we should be worried. He just keeps trying to impress us and improve every day. I think he's finally sick of that place and is getting his stuff together so he can come home.
Sunday, February 6, 2011
Growing again
John and I have finally selected a primary nurse--the main nurse in charge of the baby's care--and I couldnt be happier. Her name is Rachel, and though she seems fairly young, she is one of the best nurses we've had so far. She is incredibly smart, helpful, and really enjoys working with the babies. I love how she treats little John, and she is really fond of him. We just found out that she's going for her doctorate right now, and her knowledge and experience really shows. We are so lucky to have snagged her! She is technically little John's roommate's primary nurse right now, so shes also John's nurse while they share that room. Once baby Jameson graduates to the next room in the next few weeks, she will be John's primary nurse. Because of the nurses' schedules, he'll still have other nurses caring for him a few times a week on her days off, but it will be great to have her to go to with all of our concerns.
The big concern we've had the last few days is with the different nurses while Rachel was off. They all have their own experience and opinions, but those can be pointless if they don't know my son. Last week John was really swollen in his legs and feet from the IV fluids he was receiving. He was also super active for a few days, and was obviously burning a lot of calories. After they removed the PICC line, he dropped about 3 ounces in weight. I'm sure a little bit was the because of the weight of the equipment itself, and even more was from the lost fluids after his leg swelling went down. However, the nurse who had him that morning told me it was probably because he was too stressed out from being held, and because of that, combined with oxygen levels that have been going up and down, she wouldnt let me hold him that day. Later that evening a different nurse, on the advice from the earlier nurse, told us that it may be best to not hold him, but that it was really our decision because we're the parents.
This really ticked me off! The nurse who made this decision had made me feel like I had no choice, and that it was actually doctor's orders, neither of which were true. She also made this decision without being familiar with John's activity levels and swelling, aside from what she had been passed down from the previous nurse (he was a big lazy idiot, but I wont get into that today). Just in case, we didn't hold John this weekend hoping he would quickly gain back the weight. It has been pretty difficult; it's surprising how much your day can revolve around holding your baby for an hour.
Now that Rachel is back I feel much better. She had more logical theories about his weight loss and oxygen needs, and isn't overly concerned about either one. The docs started fortifying his milk so he should start packing on the pounds right away.
As of last night he has gained back two ounces. He is breathing well and digesting well. He is getting better at sucking and tries to eat his fingers when he's not busy trying to rip out his cannula or poke out his eyeballs. This morning he was a little too naughty with his fingers so Rachel has him all swaddled up in a little coccoon. Cutest thing ever! Well, I'm off. It's time to change a teeny diaper, read stories, and practice sucking with his binky.
The big concern we've had the last few days is with the different nurses while Rachel was off. They all have their own experience and opinions, but those can be pointless if they don't know my son. Last week John was really swollen in his legs and feet from the IV fluids he was receiving. He was also super active for a few days, and was obviously burning a lot of calories. After they removed the PICC line, he dropped about 3 ounces in weight. I'm sure a little bit was the because of the weight of the equipment itself, and even more was from the lost fluids after his leg swelling went down. However, the nurse who had him that morning told me it was probably because he was too stressed out from being held, and because of that, combined with oxygen levels that have been going up and down, she wouldnt let me hold him that day. Later that evening a different nurse, on the advice from the earlier nurse, told us that it may be best to not hold him, but that it was really our decision because we're the parents.
This really ticked me off! The nurse who made this decision had made me feel like I had no choice, and that it was actually doctor's orders, neither of which were true. She also made this decision without being familiar with John's activity levels and swelling, aside from what she had been passed down from the previous nurse (he was a big lazy idiot, but I wont get into that today). Just in case, we didn't hold John this weekend hoping he would quickly gain back the weight. It has been pretty difficult; it's surprising how much your day can revolve around holding your baby for an hour.
Now that Rachel is back I feel much better. She had more logical theories about his weight loss and oxygen needs, and isn't overly concerned about either one. The docs started fortifying his milk so he should start packing on the pounds right away.
As of last night he has gained back two ounces. He is breathing well and digesting well. He is getting better at sucking and tries to eat his fingers when he's not busy trying to rip out his cannula or poke out his eyeballs. This morning he was a little too naughty with his fingers so Rachel has him all swaddled up in a little coccoon. Cutest thing ever! Well, I'm off. It's time to change a teeny diaper, read stories, and practice sucking with his binky.
Published with Blogger-droid v1.6.5
Thursday, February 3, 2011
A lot of energy!
During the docs rounds today, they described John's needs for today as follows: "We're just going to remove his last IV and increase his food. He's doing great, and has a lot of energy!"
That is seriously an understatement. For the third day in a row, little John was full of energy when I showed up. I can't tell if it's because I come during his busy time of day (as it's been since he was still in the womb) or if he gets excited when he hears me talking. He sits there with his eyes wide open, trying to tug and pull at anything he can get his hands on. Today his victim was his nasal cannula. I tried to distract him with a binky and a good hand hold, but he just wanted to play. They give him doses of caffeine to help him with his breathing, and will until he's about 34 weeks, so I'm sure that doesn't help. After he kicked and played for nearly an hour, I repositioned him on his tummy (his favorite) and he finally took a nap. His hands and feet are now IV free. He's lost most of his accessories. Now he just has the pulse oximeter, a few electrodes for heart rate and temperature, his feeding tube, and nasal cannula. He's looking really good!
Spending several hours at the NICU wears me out. Just the sound of his tiny roommate's ventilator is enough to lull anyone to sleep, except for the rambunctious John Wayne II, of course. I got a ton of work done today, which feels great. I'm hoping to be completely caught up over the weekend so I don't have this nagging feeling of being behind on little things. Marcel and Sascha will be away for the weekend so big John and I are going to spend a lot of time with the baby. It's hard to visit the baby separately, I can't wait until we can visit him together. Hopefully we can also sneak a little date in between his cares, I think we've earned one after all this!
That is seriously an understatement. For the third day in a row, little John was full of energy when I showed up. I can't tell if it's because I come during his busy time of day (as it's been since he was still in the womb) or if he gets excited when he hears me talking. He sits there with his eyes wide open, trying to tug and pull at anything he can get his hands on. Today his victim was his nasal cannula. I tried to distract him with a binky and a good hand hold, but he just wanted to play. They give him doses of caffeine to help him with his breathing, and will until he's about 34 weeks, so I'm sure that doesn't help. After he kicked and played for nearly an hour, I repositioned him on his tummy (his favorite) and he finally took a nap. His hands and feet are now IV free. He's lost most of his accessories. Now he just has the pulse oximeter, a few electrodes for heart rate and temperature, his feeding tube, and nasal cannula. He's looking really good!
Spending several hours at the NICU wears me out. Just the sound of his tiny roommate's ventilator is enough to lull anyone to sleep, except for the rambunctious John Wayne II, of course. I got a ton of work done today, which feels great. I'm hoping to be completely caught up over the weekend so I don't have this nagging feeling of being behind on little things. Marcel and Sascha will be away for the weekend so big John and I are going to spend a lot of time with the baby. It's hard to visit the baby separately, I can't wait until we can visit him together. Hopefully we can also sneak a little date in between his cares, I think we've earned one after all this!
Wednesday, February 2, 2011
Wishing there were more hours in the day
I can't believe I've been home for almost 2 weeks. The days are going by so incredibly fast, which as fantastic on the one hand (closer to baby coming home) and frustrating on the other (how will I get everything done???).
The average day goes like this:
Wake up at 6:00 am to big John's report on little John after he makes his morning call to the NICU. After that I work for 2 hours while making sure the kids get ready for school. Then I get showered, dressed, and pack my bags and lunch for a day at the hospital before dropping the kids off...thankfully the little weirdos really like to eat school breakfast. I get to the NICU at around 9:30, and don't leave until around 2:30. While I'm there, I sit at his bedside, hold him, do his cares, eat my lunch, listen to the doctor's rounds, and work and answer emails from my phone (or pull out my laptop in a nearby parent respite room if my little Droid can't handle the task). Sitting next to a sleepy baby is the most exhausting thing in the world!!! Then at 2:30 I head out so I can pick the kids up from school, and then run any errands around town that need to be done. I then work from home and do chores until John gets home from his evening visit to the NICU at around 6:00. Then we eat dinner--we've been blessed with meals from our neighbors and people from our church (Grace Community Bible Church, which is fantastic!). We hang out with the kids until 7:30 when we start bedtime routines. Once they're in bed, I finish up any pressing items for work while John does his homework. Then we call the NICU for our night update, shower, get ready for the next day, and fall asleep to some Netflix streaming. This week we've been watching old Buster Keaton flicks, which is the very best way to fall asleep, in my opinion. To make things more complicated, I have to pump milk for little John EVERY 3 HOURS!! GAAAAH!
Needless to say, I'm freaking exhausted. I like that I have so much to keep me busy, but sometimes I forget that this is all temporary and I start to panic. I fear that I'm never going to have time to relax and do something just for me. I have to stop and remember that in a few months I'll look back on all of this like it was a strange dream and life will be fun again!
So I'm done whining, on to the real reason why you're here--Baby Update! Little John is getting cuter, bigger, stronger, and smarter every day. Other than a small electrolyte imbalance, his health is fantastic. He's up to 2 lb 3 oz. He is way up on his feedings to 13 ml of milk, every 3 hours, and he is now pooping regularly. He's really starting to plump up, and once they start fortifying his milk, he'll grow even faster. He has been very alert during my recent visits. I think he gets excited to see me and doesn't want to sleep. I had to threaten to leave the room this morning because he wouldn't close his eyes, but he knows I couldn't really do it. Big John and I get to do skin-to-skin every day, but we take turns because he can only do it with one parent per day for the time being. His nurses are fantastic and have been letting me hold him for longer than an hour at a time. Though the nurses said he probably wouldn't be ready to start learning to eat until 33-34 weeks, I think he's trying to get started right now. He has become interested in sucking, and is starting to develop his rooting reflex--he kept turning his face to my neck while I held him today, looking for something to eat. Too bad his mouth is too tiny to try eating yet! I gave him a binky today and he sucked it for a whole hour, without having any breathing problems. I was so proud!
Well, time to get on with my evening. I'm way to busy to be updating this blog. Shame on me!
The average day goes like this:
Wake up at 6:00 am to big John's report on little John after he makes his morning call to the NICU. After that I work for 2 hours while making sure the kids get ready for school. Then I get showered, dressed, and pack my bags and lunch for a day at the hospital before dropping the kids off...thankfully the little weirdos really like to eat school breakfast. I get to the NICU at around 9:30, and don't leave until around 2:30. While I'm there, I sit at his bedside, hold him, do his cares, eat my lunch, listen to the doctor's rounds, and work and answer emails from my phone (or pull out my laptop in a nearby parent respite room if my little Droid can't handle the task). Sitting next to a sleepy baby is the most exhausting thing in the world!!! Then at 2:30 I head out so I can pick the kids up from school, and then run any errands around town that need to be done. I then work from home and do chores until John gets home from his evening visit to the NICU at around 6:00. Then we eat dinner--we've been blessed with meals from our neighbors and people from our church (Grace Community Bible Church, which is fantastic!). We hang out with the kids until 7:30 when we start bedtime routines. Once they're in bed, I finish up any pressing items for work while John does his homework. Then we call the NICU for our night update, shower, get ready for the next day, and fall asleep to some Netflix streaming. This week we've been watching old Buster Keaton flicks, which is the very best way to fall asleep, in my opinion. To make things more complicated, I have to pump milk for little John EVERY 3 HOURS!! GAAAAH!
Needless to say, I'm freaking exhausted. I like that I have so much to keep me busy, but sometimes I forget that this is all temporary and I start to panic. I fear that I'm never going to have time to relax and do something just for me. I have to stop and remember that in a few months I'll look back on all of this like it was a strange dream and life will be fun again!
So I'm done whining, on to the real reason why you're here--Baby Update! Little John is getting cuter, bigger, stronger, and smarter every day. Other than a small electrolyte imbalance, his health is fantastic. He's up to 2 lb 3 oz. He is way up on his feedings to 13 ml of milk, every 3 hours, and he is now pooping regularly. He's really starting to plump up, and once they start fortifying his milk, he'll grow even faster. He has been very alert during my recent visits. I think he gets excited to see me and doesn't want to sleep. I had to threaten to leave the room this morning because he wouldn't close his eyes, but he knows I couldn't really do it. Big John and I get to do skin-to-skin every day, but we take turns because he can only do it with one parent per day for the time being. His nurses are fantastic and have been letting me hold him for longer than an hour at a time. Though the nurses said he probably wouldn't be ready to start learning to eat until 33-34 weeks, I think he's trying to get started right now. He has become interested in sucking, and is starting to develop his rooting reflex--he kept turning his face to my neck while I held him today, looking for something to eat. Too bad his mouth is too tiny to try eating yet! I gave him a binky today and he sucked it for a whole hour, without having any breathing problems. I was so proud!
Well, time to get on with my evening. I'm way to busy to be updating this blog. Shame on me!
Subscribe to:
Posts (Atom)