Today is going to be one of the longest days of my life. We find out today whether they will discharge John today, and I'm going crazy waiting.
Last Saturday we finally talked the nurses into letting us take John into a rooming-in room to see how he reacts to a private atmosphere. We were hoping some good quiet rest and fewer distractions might encourage him to eat. I think they finally caved just to placate us, and the NP even said, "Don't expect him to do too much, he hasn't been eating very big volumes." That morning before we got there, he had only eaten 5 mls from his nurse. Within 8 hours of us being in the room he was eating 85 mls from us (way more than his full feeding of 53mls). He had been doing so well in the room, we decided to stay the night. They decided to give him an ad-lib test, meaning they'd let him eat decide when and how much to eat for 12 hours; if he did at least 75% of his total volume, they'd let him continue ad-lib. It was pretty evident in the 12 hours that he really needed the peace and quiet and his parents--he did over 100% by himself!
His doctor was so impressed with his progress, so they took his feeding tube out on Sunday. I decided to stay an extra night with him to make sure he kept eating since he has to do ad-lib for 48 hours before he'll be cleared to come home. It was difficult to do it by myself that night, and I'm pretty sure I only slept for 5 hours over the course of 2 days, but it was so worth it. They decided they want to fast track him out of the NICU since he does so much better with his parents. HE NEEDS TO COME HOME!!!!
He has now spent the last few days prepping for discharge this week. He got his Synagis shot yesterday to protect him from RSV, he got a bunch of tests to make sure he has no infections and to check on his kidneys, and today he gets an eye exam and his car seat test.
The kidney ultrasound revealed two things: 1) His right kidney is still a bit smaller than his left kidney, which is probably causing high blood pressure 2) He has a freaking kidney stone! The poor guy is too tiny to have a kidney stone, I feel so bad. They think it's from getting too much calcium in all the fortification they've been putting in his milk (I'm biting my tongue right now, grrr). They've stopped the fortification, and we'll have several follow up appointments with his nephrologist to check on his kidney growth and the stone. They're hoping it will dissolve on its own over time.
As for his eyes, he had a little bit of ROP (abnormal blood vessel growth that can cause blindness) at his last exam last week. Right now, he's an "eye hostage" meaning they can't discharge him until the eye docs give the green light. Our neonatologist is pressuring them to discharge him since they know I'll bring him to all of his follow ups, so they made a deal. If the ROP has worsened, he has to stay a week to have it checked again. If it is the same or better, he can come home. His vessels are very, very close to growing all the way out through his eyes, and he will be completely out of danger at that point. Basically it is pretty unlikely that he'll have to stay, but then again anything is possible.
I don't know when the eye doc will get to the unit today, sometimes it happens in the morning, sometimes not until afternoon. I know that I'll be staring at the clock all day until I get the final word. I'm trying not to get my hopes up, and trying to keep the kids calm since they're freaking out. They're staying home from school with grandma today so she can run them up to the hospital to meet their brother if he gets discharged.
Needless to say, I'm in freakout mode right now. After 3 months of time dragging on and on thinking he'd never come home, the prospect of having my baby sleeping with us at home tonight is terrifying. He is going to do well, and they're sending him home with both oxygen support and monitors since he still has oxygen desaturation spells. It's not full apnea since he doesn't stop breathing, and his heart rate never slows down. He just goes into such a deep sleep when he's really tired, he has shallow breathing and takes mini pauses. Once he gets more stamina for eating, he should outgrow it. Either way, I'm not going to be sleeping for a while until it goes away.
I feel so unprepared! John gave the house a good deep clean for me yesterday before I could get home from the hospital, and for the millionth time I thanked God for giving me such an awesome partner. Since that's out of the way, I've been washing baby clothes and blankets and double checking all our supplies to make sure we don't have to leave the house for anything for the next few days.
So, to sum it all up I'll quote the greatest actor of our time from the greatest film of our time (Yes, I'm talking about Owen Wilson in Armageddon, haha!): "I got that "excited/scared" feeling. Like 98% excited, 2% scared. Or maybe it's more - It could be two - it could be 98% scared, 2% excited but that's what makes it so intense, it's so - confused. I can't really figure it out."
Wednesday, April 20, 2011
Friday, April 15, 2011
Happy Birthday Baby John Wayne!
I know, I know. It's been a while since the last update. Things have been so hectic these days, it's been hard to find time to sleep let alone blog.
Today is John's due date, so it's essentially his birthday for the next few years, since they'll base his development off his age from today. When we got to his crib this morning he decided he was ready to be a real boy and ripped his cannula off his face. The nurse was going to get him another one but got distracted, and we didnt remind her. His oxygen saturation has been in the 90s for the last two hours and we couldnt be more excited. I expect him to get tired sooner or later and will need to get back on a little oxygen, but this gives me so much hope!
Up until today we've just been working on feeding to get him home. Unfortunately this morning they discovered a hernia so he may have to have surgery on that before discharge. Hopefully that doesn't set us back too far.
With feeding he's been doing better. He takes around 50% by bottle each day when he needs to do 75% before he comes home. We had been working on nursing for 5 weeks until he stopped eating one day. We switched to bottles since we have more control of milk flow, and now I'd have to start all over again if I insist on nursing. He needs to come home more than anything, so we're going to see if he has any interest once he gets home. If he doesnt, at least I gave it my best shot!
He is still having sensitivity issues and plays possum so well he has many nurses fooled. If anything bugs him he closes his eyes and pretends to sleep. He still grasps my finger so hard his fingertips turn white, and opens one eye from time to time to make sure I'm still there. Nurses who dont have him regularly say, "I dunno, he looks pretty tired, lets just feed him through the tube and try again later", and this makes me crazy! He's not sleeping, he's in there somewhere and just wont participate because something is bugging him (bright lights, noise, gassy belly, it could be anything). He's also old enough to recognize his parents and favorite nurses, so he won't take bottles from someone new that he doesn't trust. This weekend we're hoping to take him in a private rooming-in room where just John and I will take care of him to see how he responds with better rest and fewer distractions. I hope it does the trick!
Lets see....other than that he's now a chubby 6 lbs 10 oz and cuter than ever. He has had high blood pressure for a few weeks so he's on bp meds and has been referred to a Nephrologist to see how his kidneys are doing. The ultrasound shows that one is bigger than the other, possibly because of scar tissue from his infection, or because they formed that way in the womb. So far tests show his kidneys are functioning well, but we're waiting for results from one last test to see if the kidneys are causing the high bps. His eyes are still doing well, and just have a little left until the blood vessels are fully grown out. If he has to go home with oxygen, he can't be discharged until the growth is done. They hope that will happen at by his next eye exam this next Wednesday.
He can be coming home anytime in the next week or two as long as the hernia doesn't set us back too far. I first had the goal of getting him home by his due date, which sadly didnt happen. Then I set the goal of getting him home before Easter, and that is getting less likely as each day passes. I should stop setting goals...I think he's just trying to ruin them. It's not really his fault, isn't that what all kids do to their parents? :-p
Today is John's due date, so it's essentially his birthday for the next few years, since they'll base his development off his age from today. When we got to his crib this morning he decided he was ready to be a real boy and ripped his cannula off his face. The nurse was going to get him another one but got distracted, and we didnt remind her. His oxygen saturation has been in the 90s for the last two hours and we couldnt be more excited. I expect him to get tired sooner or later and will need to get back on a little oxygen, but this gives me so much hope!
Up until today we've just been working on feeding to get him home. Unfortunately this morning they discovered a hernia so he may have to have surgery on that before discharge. Hopefully that doesn't set us back too far.
With feeding he's been doing better. He takes around 50% by bottle each day when he needs to do 75% before he comes home. We had been working on nursing for 5 weeks until he stopped eating one day. We switched to bottles since we have more control of milk flow, and now I'd have to start all over again if I insist on nursing. He needs to come home more than anything, so we're going to see if he has any interest once he gets home. If he doesnt, at least I gave it my best shot!
He is still having sensitivity issues and plays possum so well he has many nurses fooled. If anything bugs him he closes his eyes and pretends to sleep. He still grasps my finger so hard his fingertips turn white, and opens one eye from time to time to make sure I'm still there. Nurses who dont have him regularly say, "I dunno, he looks pretty tired, lets just feed him through the tube and try again later", and this makes me crazy! He's not sleeping, he's in there somewhere and just wont participate because something is bugging him (bright lights, noise, gassy belly, it could be anything). He's also old enough to recognize his parents and favorite nurses, so he won't take bottles from someone new that he doesn't trust. This weekend we're hoping to take him in a private rooming-in room where just John and I will take care of him to see how he responds with better rest and fewer distractions. I hope it does the trick!
Lets see....other than that he's now a chubby 6 lbs 10 oz and cuter than ever. He has had high blood pressure for a few weeks so he's on bp meds and has been referred to a Nephrologist to see how his kidneys are doing. The ultrasound shows that one is bigger than the other, possibly because of scar tissue from his infection, or because they formed that way in the womb. So far tests show his kidneys are functioning well, but we're waiting for results from one last test to see if the kidneys are causing the high bps. His eyes are still doing well, and just have a little left until the blood vessels are fully grown out. If he has to go home with oxygen, he can't be discharged until the growth is done. They hope that will happen at by his next eye exam this next Wednesday.
He can be coming home anytime in the next week or two as long as the hernia doesn't set us back too far. I first had the goal of getting him home by his due date, which sadly didnt happen. Then I set the goal of getting him home before Easter, and that is getting less likely as each day passes. I should stop setting goals...I think he's just trying to ruin them. It's not really his fault, isn't that what all kids do to their parents? :-p
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Wednesday, April 6, 2011
Getting Jealous
I have watched several of John's roommates over the last month get discharged. Tomorrow morning John's old roommate from room 2 is going home. I know many of these babies weren't as early as John so they don't face as many challenges, but it's still a little depressing to watch these happy families go through the hectic and exciting discharge process when it feels like our day is forever away. It's even more difficult to watch babies whose parents never visit them get discharged. I practically live here, and some of these moms are nonexistant. The discharge process typically starts with the car seat test. When you see a baby sitting in a car seat next to their crib, you know they're going home soon. I have John's car seat all ready to bring in, but he's not even close to that point yet. The little bugger still won't eat!
We're now in the 5th week of feeding training and we're moving backward instead of forward. John has deveoped an oral aversion, and is now refusing anything that comes near his mouth. He was doing ok nursing, and had been doing taking a bottle at night. I finally reached a breaking point and told them to switch to bottles if he'll take them. Unfortunately he doesn't want those either most of the time.
The NNP evaluated him this morn and found a few white patches in his mouth so theyre going to treat him for Thrush, which is common after antibiotic treatment. Thrush is painful so he may not want to eat if this is the problem. The OT also worked with him and thinks he has a sensitivity problem which is uncommon and difficult to overcome. He panics when things get near his mouth and he can't seem to relax when things are going on around him. He eventually just shuts down and goes to sleep if he's bothered too much.
So now we're back to square one. Feeding training has stopped for the time being unless he actively seeks it, and we have to introduce it little by little. We have a new protocol in place where we have to create pleasurable experiences so he will calm down and be more trusting. This involves kisses, baths, massages, and the like. They've also moved him to room 8 where there are only 6 babies. It's much more quiet and less frantic in there.
He hit 6 pounds last night so he's growing like a weed. His oxygen desaturation fits are almost gone. His eye exams are still clear. Basically he's all ready to come home once we overcome this last hurdle. Unfortunately it's the biggest and most frustrating one. It will probably be several weeks before he can come home, so we're not going to make it by his due date. If he is in the hospital for much longer, I may get to go to the military ball this year, which will be a nice last night on the town before we become full-time parents again. I have a gut feeling he'll come home on the 29th since the ball is on the 30th. That's just the kind of kid little John Wayne is :-)
We're now in the 5th week of feeding training and we're moving backward instead of forward. John has deveoped an oral aversion, and is now refusing anything that comes near his mouth. He was doing ok nursing, and had been doing taking a bottle at night. I finally reached a breaking point and told them to switch to bottles if he'll take them. Unfortunately he doesn't want those either most of the time.
The NNP evaluated him this morn and found a few white patches in his mouth so theyre going to treat him for Thrush, which is common after antibiotic treatment. Thrush is painful so he may not want to eat if this is the problem. The OT also worked with him and thinks he has a sensitivity problem which is uncommon and difficult to overcome. He panics when things get near his mouth and he can't seem to relax when things are going on around him. He eventually just shuts down and goes to sleep if he's bothered too much.
So now we're back to square one. Feeding training has stopped for the time being unless he actively seeks it, and we have to introduce it little by little. We have a new protocol in place where we have to create pleasurable experiences so he will calm down and be more trusting. This involves kisses, baths, massages, and the like. They've also moved him to room 8 where there are only 6 babies. It's much more quiet and less frantic in there.
He hit 6 pounds last night so he's growing like a weed. His oxygen desaturation fits are almost gone. His eye exams are still clear. Basically he's all ready to come home once we overcome this last hurdle. Unfortunately it's the biggest and most frustrating one. It will probably be several weeks before he can come home, so we're not going to make it by his due date. If he is in the hospital for much longer, I may get to go to the military ball this year, which will be a nice last night on the town before we become full-time parents again. I have a gut feeling he'll come home on the 29th since the ball is on the 30th. That's just the kind of kid little John Wayne is :-)
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Sunday, April 3, 2011
Thursday, March 31, 2011
Point for Team Oldroyd!
The other night when the docs started treating John for suspected infection, we asked, "Could it possibly be because of the immunizations he got two days ago? We read apnea could flare up following immunizations". Thats right, we read it in a book which just so happens to be written by a neonatologist. Of course we're not doctors, so they immediately said "No, it wouldn't be from that." Then to make sure we knew we were wrong, they called us back a bit later to say there was bacteria in his urine sample. The following day his nurse also said "I don't think he has an infection, I think it's from his immunizations. His blood work is a bit funny but it shows that his immune system is doing what it should be doing." When I asked her about the bacteria in his urine, she rolled her eyes and said it really didn't indicate anything and that the sample was likely contaminated which is fairly common. She then advocated for us to get him off these heavy duty antibiotics they have him on. They we going to do one more blood test then stop antibiotics.
The blood test the next morning came back "funky", as they put it, and they decided to do one more. After that one came back looking strange too, they decided he must have an infection since the white cell counts were off. They decided to keep him on 7-10 days of antibiotics. Unfortunately they couldnt decide exactly how long they wanted to do them for because they couldn't locate the infection and he has been showing no symptoms. He was actually improving respiratory wise, which doesn't happen with an infection. They decided to do one more blood test the next day.
Well, yesterday they did the test which was still looking strange, and all of his cultures were still negative for infection. The docs sat around baffled during rounds until one piped up "Do you think it's from his immunizations on Friday?" Then they all had a major "Aha!" moment, decided he didn't have an infection after all, stopped his antibiotic treatment, and patted themselves on the back before moving on to the next baby.
I was seriously speechless, and that rarely happens.
Well, baby is doing much better today and just needs to work on feeding before he can go home. It will be at least a week or two, hopefully not much longer. I just need to protect him from the infection-diagnosing-happy docs since every time they treat him for a phantom infection, it sets him back about a week. He can latch, but it takes him a while to do it. He gets really frustrated and wastes a lot of energy trying to wrestle me while I'm trying to get his head and hands in the right places. This boy is still small at 5 lbs 8 oz, but man is he strong! Sometimes it takes both me and the OT to get him under control. He just needs some practice and I just need some patience. He does well once he can relax and focus. Thankfully he has the suck, swallow, and breathe reflex down since thats a big preemie hurdle. He took his first bottle last night and did really well. It also didn't make him want to nurse any less this morning so that's a bonus! In fact I think it helped him, since it teaches the "if I suck, my belly will get full" lesson we desperately need him to learn. John and I are going to stay at the hotel up the road for the weekend so I can be available around the clock to practice. I hope it does the trick!!!
The blood test the next morning came back "funky", as they put it, and they decided to do one more. After that one came back looking strange too, they decided he must have an infection since the white cell counts were off. They decided to keep him on 7-10 days of antibiotics. Unfortunately they couldnt decide exactly how long they wanted to do them for because they couldn't locate the infection and he has been showing no symptoms. He was actually improving respiratory wise, which doesn't happen with an infection. They decided to do one more blood test the next day.
Well, yesterday they did the test which was still looking strange, and all of his cultures were still negative for infection. The docs sat around baffled during rounds until one piped up "Do you think it's from his immunizations on Friday?" Then they all had a major "Aha!" moment, decided he didn't have an infection after all, stopped his antibiotic treatment, and patted themselves on the back before moving on to the next baby.
I was seriously speechless, and that rarely happens.
Well, baby is doing much better today and just needs to work on feeding before he can go home. It will be at least a week or two, hopefully not much longer. I just need to protect him from the infection-diagnosing-happy docs since every time they treat him for a phantom infection, it sets him back about a week. He can latch, but it takes him a while to do it. He gets really frustrated and wastes a lot of energy trying to wrestle me while I'm trying to get his head and hands in the right places. This boy is still small at 5 lbs 8 oz, but man is he strong! Sometimes it takes both me and the OT to get him under control. He just needs some practice and I just need some patience. He does well once he can relax and focus. Thankfully he has the suck, swallow, and breathe reflex down since thats a big preemie hurdle. He took his first bottle last night and did really well. It also didn't make him want to nurse any less this morning so that's a bonus! In fact I think it helped him, since it teaches the "if I suck, my belly will get full" lesson we desperately need him to learn. John and I are going to stay at the hotel up the road for the weekend so I can be available around the clock to practice. I hope it does the trick!!!
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Monday, March 28, 2011
Blasted doctors!
Since John's last infection false alarm, we've been dealing with apnea and feeding issues. He's 37 weeks and should be showing more interest in feeding. Then, he has been holding his breath when he should be off his oxygen support by now.
He has eaten twice and has done really well both times so I know he knows how to do it. He took 30 ml the other day when his full feed is 40 ml 75% is exactly where he needs to be. Unfortunately he's supposed to be eating several times a day. Instead, he sleeps through the feeds. It is the most frustrating experience I've ever gone through.
The apnea issues are even more concerning. His heart rate doesn't drop so theyre not the typical A and B spells that come with prematurity. Something is causing him to do this. They thought he was sick so they gave him antibiotics only to have all tests come back fine. Then they thought it might be seizures but his head ultrasound came back fine (thankfully they didn't make him have the MRI, since they'd have to sedate and intubate him to do it). John and I keep telling everyone that we think he's just overstimulated but they keep discounting our opinions.
We reached a breaking point last night when they decided to treat him for infection again though test results really show no indication. They told us they were going to stop feeding him, and were going to do urine, blood, and spinal cultures again. John kept insisting they at least feed him, and thankfully they listened to that part. When questioned about their reasoning they give BS answers such as "we dont think the apnea is because of overstimulation because he had several episodes today when nothing was happening." This is complete horseshit because I spent 8 hours with him before they made this decision and every single episode was initiated by something--from having his position changed, or even from straining to poop. Then when we try to tell them our point of view and everything we've observed, they just get backed into a corner but do what they want anyway. I'm sick of these docs thinking they can pull the wool over our eyes because they assume we're like 75% of the other NICU parents who are hardly present. They need to listen to us because we've spent the most time with him. They always say they want the parents to be involved, and say the parents are the experts, but whenever we try to share our thoughts they try to find excuses as to why our ideas aren't the cause.
So this morning John was all over the place with apnea. The OT came to check him out. I really like her...I call her the baby whisperer. She observed his behavior in his crib and when I tried to feed him. She says he is acting really agitated and anxious and that he's not falling asleep when I try to feed him, he's playing possum because he's too overwhelmed. She says he doesnt like being touched and isn't trusting anybody when theyre handling him. She listened to my theories and 100% agreed with me. She doesnt think his apnea is a medical issue, she thinks it's psychological. The feeding issues seem to be related. She is going to develop a care plan for him, and is going to work with us for the next few days to see how he responds. She advised that I do skin-to-skin more to see if that helps him feel more comfortable. We haven't done much of it since he started feeding training because we're always just working on eating.
I held him skin to skin for 4 hours today and he did not have any apnea spells. When 2 o'clock (feeding time) rolled around he was wide awake and started rooting so we tried eating again. He didn't eat a ton, but he gave it a good effort and ate 10 ml before falling asleep.
The docs are going to stop antibiotics tomorrow unless one of his cultures comes back with growth. For now it appears to be another false alarm. In the meantime I have to snuggle my naked baby close and try to calm him down since he's so freaked out by all of these procedues they've been doing.
I'm so mad at his doctors right now, I could scream!
He has eaten twice and has done really well both times so I know he knows how to do it. He took 30 ml the other day when his full feed is 40 ml 75% is exactly where he needs to be. Unfortunately he's supposed to be eating several times a day. Instead, he sleeps through the feeds. It is the most frustrating experience I've ever gone through.
The apnea issues are even more concerning. His heart rate doesn't drop so theyre not the typical A and B spells that come with prematurity. Something is causing him to do this. They thought he was sick so they gave him antibiotics only to have all tests come back fine. Then they thought it might be seizures but his head ultrasound came back fine (thankfully they didn't make him have the MRI, since they'd have to sedate and intubate him to do it). John and I keep telling everyone that we think he's just overstimulated but they keep discounting our opinions.
We reached a breaking point last night when they decided to treat him for infection again though test results really show no indication. They told us they were going to stop feeding him, and were going to do urine, blood, and spinal cultures again. John kept insisting they at least feed him, and thankfully they listened to that part. When questioned about their reasoning they give BS answers such as "we dont think the apnea is because of overstimulation because he had several episodes today when nothing was happening." This is complete horseshit because I spent 8 hours with him before they made this decision and every single episode was initiated by something--from having his position changed, or even from straining to poop. Then when we try to tell them our point of view and everything we've observed, they just get backed into a corner but do what they want anyway. I'm sick of these docs thinking they can pull the wool over our eyes because they assume we're like 75% of the other NICU parents who are hardly present. They need to listen to us because we've spent the most time with him. They always say they want the parents to be involved, and say the parents are the experts, but whenever we try to share our thoughts they try to find excuses as to why our ideas aren't the cause.
So this morning John was all over the place with apnea. The OT came to check him out. I really like her...I call her the baby whisperer. She observed his behavior in his crib and when I tried to feed him. She says he is acting really agitated and anxious and that he's not falling asleep when I try to feed him, he's playing possum because he's too overwhelmed. She says he doesnt like being touched and isn't trusting anybody when theyre handling him. She listened to my theories and 100% agreed with me. She doesnt think his apnea is a medical issue, she thinks it's psychological. The feeding issues seem to be related. She is going to develop a care plan for him, and is going to work with us for the next few days to see how he responds. She advised that I do skin-to-skin more to see if that helps him feel more comfortable. We haven't done much of it since he started feeding training because we're always just working on eating.
I held him skin to skin for 4 hours today and he did not have any apnea spells. When 2 o'clock (feeding time) rolled around he was wide awake and started rooting so we tried eating again. He didn't eat a ton, but he gave it a good effort and ate 10 ml before falling asleep.
The docs are going to stop antibiotics tomorrow unless one of his cultures comes back with growth. For now it appears to be another false alarm. In the meantime I have to snuggle my naked baby close and try to calm him down since he's so freaked out by all of these procedues they've been doing.
I'm so mad at his doctors right now, I could scream!
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Tuesday, March 22, 2011
It's Crunch Time!
Words cannot describe the mess we've had to put up with in the last few days. It turns out that John was never sick, and unfortunately we have no idea what caused the ordeal in the first place.
Here's what happened: His temperature dropped, his digestion slowed, and then he started having more apnea. They put him on a warming bed, stopped his feedings, shoved a big tube down into his belly for 3 days, ran tests, gave him IVs until all of his good veins were gone, and threatened to run more tests. His tests for infection (the likely culprit of it all) came back negative. He was requiring more and more stimulation to come out of his apnea and oxygen desaturation fits, and was twitching a little in his sleep. Fearing that he was having seizures, they ordered an MRI and were going to transport him over to Primary Children's Hospital for it yesterday morning.
Here's what I think was going on: He was having a bad day. He swallows a lot of air, and some nurses have not been venting out his belly after each feeding (they don't get burped yet). His belly swelled up, he was in pain, and then he had a hard time keeping his temperature up. After they vented out the air, he was feeling better, and became uber responsive to the crap they were doing to him. I could see how badly he was in pain with the IVs and venting tube. Sick babies are too sick to care about these things, but John was pissed! He was holding his breath and twitching because he was in distress, and when the nurse was stimulating him right away it made him even more upset. After they pulled out the tube and started feeding him again, he was still desatting, but that blasted nurse was still jumping the gun and pounding him on the back every time he started dropping. I finally told her to leave him alone and that he'd pull out of it on his own, and I was right. Within a day, and after getting a different nurse, he was feeling much better. They dressed him and put him back in his bed, and they bumped him right up to his full feedings. He has been doing fantastic ever since. Now my views are not based on any medical training whatsoever, but I have a pretty strong feeling about it. I know my baby way better than the ever revolving staff.
Because of his improvement, they cancelled the MRI at the last minute and ordered another brain ultrasound for this Thursday. If anything looks off, they'll go ahead with an MRI. They did a chest xray to make sure his heart and lungs look good since he's still on a tiny bit of oxygen at 36 weeks (this is usually when they don't need oxygen anymore). Everything looks clear on that. He is still getting a little chilly in his crib, but the nurses are good at bundling him way up to keep him from getting too cold. Low body temperature can be catastrophic...first their digestion stops, and everything else goes downhill from there. I honestly don't know if he's really getting cold. They take his temperature in his armpits, but he always has his arms up over his head so they tend to be cooler than they should be. They do the temporal scanner or a rectal temp, and his temp is always fine. Then the nurses sit and debate over which temperature location should be the most accurate. It's totally frustrating.
So now that he's feeling better, we're back where we left off--nursing training. Yesterday he pretty much slept through his 11:00 feeding, and was too sleepy to do much during the 2:00. He thinks it's funny to just have it in his mouth and not have to work. He opens up for it, smiles a bunch once he has it, then goes to sleep. I don't blame him, he has no idea that he needs to get his own food since he's been fed through a tube for 2 months. The occupational therapist wants me there for more feedings each day since I'm usually only there for the 11:00 feeding. I agree, since it's going to be impossible for him to learn just practicing once a day, but it is really difficult to be there more because of the other two kids. I think I have it worked out for the next few weeks so I can be there for 3 feedings, and hopefully that's all we'll need. The trick is to be there in the evening since he has decided that 5:00 is the time to be wide awake. Big John went to visit him last night, and sure enough he was wide awake and had been playing in a bouncy seat like a big boy.
It's going to be a rough few weeks for me. I was finding it hard to be there for more than 4 hours, and now I'm going to be hanging around from 10:00-6:00. I pray I can keep what is left of my sanity, and my husband and kids can hang in there without me around as much (and my crabbiness when I am there). We all just have to focus on the goal though. We want this baby home!
Here's what happened: His temperature dropped, his digestion slowed, and then he started having more apnea. They put him on a warming bed, stopped his feedings, shoved a big tube down into his belly for 3 days, ran tests, gave him IVs until all of his good veins were gone, and threatened to run more tests. His tests for infection (the likely culprit of it all) came back negative. He was requiring more and more stimulation to come out of his apnea and oxygen desaturation fits, and was twitching a little in his sleep. Fearing that he was having seizures, they ordered an MRI and were going to transport him over to Primary Children's Hospital for it yesterday morning.
Here's what I think was going on: He was having a bad day. He swallows a lot of air, and some nurses have not been venting out his belly after each feeding (they don't get burped yet). His belly swelled up, he was in pain, and then he had a hard time keeping his temperature up. After they vented out the air, he was feeling better, and became uber responsive to the crap they were doing to him. I could see how badly he was in pain with the IVs and venting tube. Sick babies are too sick to care about these things, but John was pissed! He was holding his breath and twitching because he was in distress, and when the nurse was stimulating him right away it made him even more upset. After they pulled out the tube and started feeding him again, he was still desatting, but that blasted nurse was still jumping the gun and pounding him on the back every time he started dropping. I finally told her to leave him alone and that he'd pull out of it on his own, and I was right. Within a day, and after getting a different nurse, he was feeling much better. They dressed him and put him back in his bed, and they bumped him right up to his full feedings. He has been doing fantastic ever since. Now my views are not based on any medical training whatsoever, but I have a pretty strong feeling about it. I know my baby way better than the ever revolving staff.
Because of his improvement, they cancelled the MRI at the last minute and ordered another brain ultrasound for this Thursday. If anything looks off, they'll go ahead with an MRI. They did a chest xray to make sure his heart and lungs look good since he's still on a tiny bit of oxygen at 36 weeks (this is usually when they don't need oxygen anymore). Everything looks clear on that. He is still getting a little chilly in his crib, but the nurses are good at bundling him way up to keep him from getting too cold. Low body temperature can be catastrophic...first their digestion stops, and everything else goes downhill from there. I honestly don't know if he's really getting cold. They take his temperature in his armpits, but he always has his arms up over his head so they tend to be cooler than they should be. They do the temporal scanner or a rectal temp, and his temp is always fine. Then the nurses sit and debate over which temperature location should be the most accurate. It's totally frustrating.
So now that he's feeling better, we're back where we left off--nursing training. Yesterday he pretty much slept through his 11:00 feeding, and was too sleepy to do much during the 2:00. He thinks it's funny to just have it in his mouth and not have to work. He opens up for it, smiles a bunch once he has it, then goes to sleep. I don't blame him, he has no idea that he needs to get his own food since he's been fed through a tube for 2 months. The occupational therapist wants me there for more feedings each day since I'm usually only there for the 11:00 feeding. I agree, since it's going to be impossible for him to learn just practicing once a day, but it is really difficult to be there more because of the other two kids. I think I have it worked out for the next few weeks so I can be there for 3 feedings, and hopefully that's all we'll need. The trick is to be there in the evening since he has decided that 5:00 is the time to be wide awake. Big John went to visit him last night, and sure enough he was wide awake and had been playing in a bouncy seat like a big boy.
It's going to be a rough few weeks for me. I was finding it hard to be there for more than 4 hours, and now I'm going to be hanging around from 10:00-6:00. I pray I can keep what is left of my sanity, and my husband and kids can hang in there without me around as much (and my crabbiness when I am there). We all just have to focus on the goal though. We want this baby home!
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