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!
Thursday, March 17, 2011
I Always Speak Too Soon
Well, here we are again with a sick baby :-(
Yesterday morning John and I showed up to the NICU, excited for another day of feeding training. We were walking up to his area of the room, and there was a naked baby on a warming bed next to an empty crib. I was thinking "Hmmm. Where have they moved John to now?" only to find that John was the little naked baby when I got close enough to see his face. My heart totally sank.
His body temp was cool, and wouldn't raise when his nurse bundled him up. He was also fairly lethargic. Then he had a grade 3 A & B, which means he stopped breathing and his heart slowed down, and he wouldn't respond to the nurse to come out of it. She had to use CPAP to get him back to normal. These are signs of illness, so they did some blood work. They didn't find anything wrong, so they decided the A & B episode may have just been because he had aspirated some milk. The NNP said we would treat him normally until he gave us more signs. They let me hold him for a few hours, and he stayed warm because of my body heat. When I got him dressed and put him back in his crib, he unfortunately cooled right back down. I also noticed that his belly seemed to be bigger than normal, which is another sign of illness. They put him back in the warming bed, stopped his feedings, put a big tube down into his belly to vent, started antibiotics just to be safe, and ran a battery of tests.
This morning we showed up and he was still in his warming bed with the big tube still venting his belly, and had an IV in his foot. He was super fussy and just looked incredibly uncomfortable. He seemed gassy and kept straining to push it out, and was sucking on the tube because he's starving. The docs rounded on him and said they couldn't find anything wrong so far. His blood work and belly xrays look normal, and nothing has come back from the urine/blood/spinal cultures they did last night. They're going to wait a few more days to see if the cultures grow, but since he's on antibiotics and still on the antifungals from his last infection, they think the illness will be gone really quickly if anything shows up. They're going to do another xray in the morning, and hopefully if that still looks good they'll pull out the tube and start feeding him again. I'm praying he gets over this quickly. Other than some mild oxygen desaturations, his breathing is very stable. He's still at just 1 liter on a regular cannula, and isn't having a hard time breathing like he did the last two times he got sick.
Needless to say, we're really bummed. It's frustrating that he keeps getting sick. I'm terrified to take him home since I'm worried I won't be able to detect these illnesses. I'm also scared he's going to have a big A & B like that when he's napping and I won't notice until it's too late. Am I going to have to constantly stare at him to make sure he's breathing? I also can't stop wondering how he's getting sick in the first place. Is it me? Did I give him something I didn't know I had? Did I not scrub my hands hard enough before touching him? I know he's living in a germy hospital, and that it's probably not my fault, but I'm still worried.
At least it's almost the weekend. The kids will be with their other parents so I can spend a lot of time at the hospital. Hopefully I can find a spare minute to do at least one fun thing. I'm getting burned out!
Yesterday morning John and I showed up to the NICU, excited for another day of feeding training. We were walking up to his area of the room, and there was a naked baby on a warming bed next to an empty crib. I was thinking "Hmmm. Where have they moved John to now?" only to find that John was the little naked baby when I got close enough to see his face. My heart totally sank.
His body temp was cool, and wouldn't raise when his nurse bundled him up. He was also fairly lethargic. Then he had a grade 3 A & B, which means he stopped breathing and his heart slowed down, and he wouldn't respond to the nurse to come out of it. She had to use CPAP to get him back to normal. These are signs of illness, so they did some blood work. They didn't find anything wrong, so they decided the A & B episode may have just been because he had aspirated some milk. The NNP said we would treat him normally until he gave us more signs. They let me hold him for a few hours, and he stayed warm because of my body heat. When I got him dressed and put him back in his crib, he unfortunately cooled right back down. I also noticed that his belly seemed to be bigger than normal, which is another sign of illness. They put him back in the warming bed, stopped his feedings, put a big tube down into his belly to vent, started antibiotics just to be safe, and ran a battery of tests.
This morning we showed up and he was still in his warming bed with the big tube still venting his belly, and had an IV in his foot. He was super fussy and just looked incredibly uncomfortable. He seemed gassy and kept straining to push it out, and was sucking on the tube because he's starving. The docs rounded on him and said they couldn't find anything wrong so far. His blood work and belly xrays look normal, and nothing has come back from the urine/blood/spinal cultures they did last night. They're going to wait a few more days to see if the cultures grow, but since he's on antibiotics and still on the antifungals from his last infection, they think the illness will be gone really quickly if anything shows up. They're going to do another xray in the morning, and hopefully if that still looks good they'll pull out the tube and start feeding him again. I'm praying he gets over this quickly. Other than some mild oxygen desaturations, his breathing is very stable. He's still at just 1 liter on a regular cannula, and isn't having a hard time breathing like he did the last two times he got sick.
Needless to say, we're really bummed. It's frustrating that he keeps getting sick. I'm terrified to take him home since I'm worried I won't be able to detect these illnesses. I'm also scared he's going to have a big A & B like that when he's napping and I won't notice until it's too late. Am I going to have to constantly stare at him to make sure he's breathing? I also can't stop wondering how he's getting sick in the first place. Is it me? Did I give him something I didn't know I had? Did I not scrub my hands hard enough before touching him? I know he's living in a germy hospital, and that it's probably not my fault, but I'm still worried.
At least it's almost the weekend. The kids will be with their other parents so I can spend a lot of time at the hospital. Hopefully I can find a spare minute to do at least one fun thing. I'm getting burned out!
Tuesday, March 15, 2011
One More Month!?!
I feel like I'm slowly going crazy. How can a crazy person go crazy, you ask? Give them a preemie baby. On one hand, everything is great and time is flying by with Little John making so much progress. On the other hand, every day seems to drag on and on and it feels like he's never going to come home. I have bad moments where I can't tell if I'm stressed, exhausted, depressed, or all three. Then before I know it, everything turns back around and I'm a-ok and ready to take on another week. I don't know how much longer I can take this NICU business. Unfortunately they say to plan on his due date for discharge, and that is exactly one month away.
The little guy is doing really well. He has moved into his new digs in Room 6, which is one of the rooms the babies go to when they're getting ready to go home. He has one of the best spots in the room, with a window near his crib so I can at least see some sunlight during the day. The feel is a lot different from room 2. Rooms 5 and 6 adjoin so it's a huge room that can fit around 10 babies, and there are three babies to each nurse. There are usually several other parents there while we're there. Previously, he had just one roommate and that baby's mom never visited (how sad). During my visit, it would be just me and the nurse which was fun when it was a cool nurse, and awkward when it wasn't. Now in his new room I at least feel like I have more control as a parent. I pull up a rocking chair and hold my little baby as often as I want. I have brought in the clothes we bought him so he can wear his own things. I also bring in the crocheted blanket I made him each day so we can snuggle in his own blanket. Pics of his family hang on the wall next to his crib so he has something to look at when he's awake. If he can't be home yet, I want it to feel as much like home as possible.
He has been maintaining his body temperature pretty well since he moved to the crib and is continuing to gain weight. Right now he comes in at a hefty 4 lbs 7 oz. He is also doing better and better with his breathing. They weaned his high-flow cannula down to 1 liter, and he has tolerated that well for a few days. Today after we left for the day, they were switching him to the regular cannula that plugs directly into the wall. This is a HUGE accomplishment for him. He can essentially come home if he's ready with the regular cannula, we would just work on weaning down the oxygen over a few weeks afterward. I can't wait to get to the hospital in the morning and see how he looks with the new cannula, and less equipment hanging around his crib.
So this all means that the little guy just has to learn to eat so he can come home. We practiced all week last week, and John and I stayed at the Marriott a few blocks away over the weekend so I could work with him at as many feedings as possible. He did really well--in less than a week he was opening his mouth on his own, latching, and starting to suck. I was excited to show the occupational therapist his progress. Unfortunately little JWO gets performance anxiety because both yesterday and today he decided to sleep and play during feeding time, instead of nurse. I know he can do it, the trick is just going to be scheduling. I can only be at the hospital during the 11:00 am feeding during the week because of the other kids school schedules, so if he doesn't feel like nursing, there's not much I can do about it. I'm going to spend a lot of time at the hospital this weekend to see if we can get in more practice.
We are pretty much all ready for him to come home. We've attended the mandatory discharge class and learned infant CPR, which I pray we'll never have to use. I've spent what little free time I've had amassing baby gear and washing his little clothes. This week we finally got a stroller and car seat. All I need now is a rocker/recliner so I have something comfy to sit and sleep in during midnight feedings. If anyone has a comfy old La-Z-Boy, send it my way. I'll give you a cheeseburger.
I know a lot of you read this blog. Several times a week I find out about new readers, and I'm glad there are people out there paying attention to my rambling. John and I thank you very much for your support. When the baby comes home, we unfortunately have to keep him quarantined for a few weeks to months (depends on his doctor's advice) because his immune system isn't up to par with a full-term baby. Since we didn't get to throw the co-ed baby shower bbq we had been planning, we're going to throw a party for him this summer once he's ready to start meeting people. We're thinking of having it at the officer's club at Camp Williams so we have plenty of room to hang, bbq, and swim. It should be epic!
The little guy is doing really well. He has moved into his new digs in Room 6, which is one of the rooms the babies go to when they're getting ready to go home. He has one of the best spots in the room, with a window near his crib so I can at least see some sunlight during the day. The feel is a lot different from room 2. Rooms 5 and 6 adjoin so it's a huge room that can fit around 10 babies, and there are three babies to each nurse. There are usually several other parents there while we're there. Previously, he had just one roommate and that baby's mom never visited (how sad). During my visit, it would be just me and the nurse which was fun when it was a cool nurse, and awkward when it wasn't. Now in his new room I at least feel like I have more control as a parent. I pull up a rocking chair and hold my little baby as often as I want. I have brought in the clothes we bought him so he can wear his own things. I also bring in the crocheted blanket I made him each day so we can snuggle in his own blanket. Pics of his family hang on the wall next to his crib so he has something to look at when he's awake. If he can't be home yet, I want it to feel as much like home as possible.
He has been maintaining his body temperature pretty well since he moved to the crib and is continuing to gain weight. Right now he comes in at a hefty 4 lbs 7 oz. He is also doing better and better with his breathing. They weaned his high-flow cannula down to 1 liter, and he has tolerated that well for a few days. Today after we left for the day, they were switching him to the regular cannula that plugs directly into the wall. This is a HUGE accomplishment for him. He can essentially come home if he's ready with the regular cannula, we would just work on weaning down the oxygen over a few weeks afterward. I can't wait to get to the hospital in the morning and see how he looks with the new cannula, and less equipment hanging around his crib.
So this all means that the little guy just has to learn to eat so he can come home. We practiced all week last week, and John and I stayed at the Marriott a few blocks away over the weekend so I could work with him at as many feedings as possible. He did really well--in less than a week he was opening his mouth on his own, latching, and starting to suck. I was excited to show the occupational therapist his progress. Unfortunately little JWO gets performance anxiety because both yesterday and today he decided to sleep and play during feeding time, instead of nurse. I know he can do it, the trick is just going to be scheduling. I can only be at the hospital during the 11:00 am feeding during the week because of the other kids school schedules, so if he doesn't feel like nursing, there's not much I can do about it. I'm going to spend a lot of time at the hospital this weekend to see if we can get in more practice.
We are pretty much all ready for him to come home. We've attended the mandatory discharge class and learned infant CPR, which I pray we'll never have to use. I've spent what little free time I've had amassing baby gear and washing his little clothes. This week we finally got a stroller and car seat. All I need now is a rocker/recliner so I have something comfy to sit and sleep in during midnight feedings. If anyone has a comfy old La-Z-Boy, send it my way. I'll give you a cheeseburger.
I know a lot of you read this blog. Several times a week I find out about new readers, and I'm glad there are people out there paying attention to my rambling. John and I thank you very much for your support. When the baby comes home, we unfortunately have to keep him quarantined for a few weeks to months (depends on his doctor's advice) because his immune system isn't up to par with a full-term baby. Since we didn't get to throw the co-ed baby shower bbq we had been planning, we're going to throw a party for him this summer once he's ready to start meeting people. We're thinking of having it at the officer's club at Camp Williams so we have plenty of room to hang, bbq, and swim. It should be epic!
Wednesday, March 9, 2011
The Hardest Part
Man I'm exhausted and am trying desperately to take a nap but my mind is racing with all that's happened in the last week. I suppose I'll share the details to see if that helps calm my mind.
John's breathing has been insanely good so far this week. His high-flow is at 1.5, and they're talking of weaning him down to 1 tomorrow. If he does well, they'll take him off high flow and put him on the low-flow. Once he weans down on that, he'll be done with oxygen. That may happen at the hospital, or they'll even send him home with oxygen if thats the only thing that's keeping him there.
He is now over 4 pounds, so they've been dressing and swadling him as they've weaned down the temp in his isolette. Today they moved him to a crib to test it out. He needs to keep his body temp up while still gaining weight or he'll have to wait and try it again in a few days. So far he's doing good. It was so strange to see him out in the open, swaddled up like a real baby. It was so hard to leave him today, I just wanted to take him with me!
As long as the breathing and open crib are working for him, we have one last hurdle before he can come home--learning to eat. Unfortunately I'm being told this is the hardest part since they leave everything up to the baby. We started Monday. Each day little John and I sit down with the occupational therapist during his 11 am feeding and she walks us through the training. So far it consists of getting him comfortably in position, and waiting for him to root. He needs to get used to putting something new in his mouth on his own terms, which can be hard because of the negative sensations he's had in his mouth from the medical procedures. We havent made a lot of progress so far. He tries it a few times before getting tired and falling asleep, then training is over. Today we didnt even get to try since he was too sleepy to show any interest at all. Now I need to see if I can be at the hospital for other feeding times to see if I can catch him wake, which will be really difficult because of the other kids' school schedules. *Sigh*
Basically this is the part where all the parents lose their sanity. He looks, sounds, and acts like a real baby so it's natural to want to take him home now. Spending several more weeks learning to eat at a snails pace is a common breaking point. I've done pretty well until now, so I think we can tough it out for another month or so, but I suppose we shall see!
John's breathing has been insanely good so far this week. His high-flow is at 1.5, and they're talking of weaning him down to 1 tomorrow. If he does well, they'll take him off high flow and put him on the low-flow. Once he weans down on that, he'll be done with oxygen. That may happen at the hospital, or they'll even send him home with oxygen if thats the only thing that's keeping him there.
He is now over 4 pounds, so they've been dressing and swadling him as they've weaned down the temp in his isolette. Today they moved him to a crib to test it out. He needs to keep his body temp up while still gaining weight or he'll have to wait and try it again in a few days. So far he's doing good. It was so strange to see him out in the open, swaddled up like a real baby. It was so hard to leave him today, I just wanted to take him with me!
As long as the breathing and open crib are working for him, we have one last hurdle before he can come home--learning to eat. Unfortunately I'm being told this is the hardest part since they leave everything up to the baby. We started Monday. Each day little John and I sit down with the occupational therapist during his 11 am feeding and she walks us through the training. So far it consists of getting him comfortably in position, and waiting for him to root. He needs to get used to putting something new in his mouth on his own terms, which can be hard because of the negative sensations he's had in his mouth from the medical procedures. We havent made a lot of progress so far. He tries it a few times before getting tired and falling asleep, then training is over. Today we didnt even get to try since he was too sleepy to show any interest at all. Now I need to see if I can be at the hospital for other feeding times to see if I can catch him wake, which will be really difficult because of the other kids' school schedules. *Sigh*
Basically this is the part where all the parents lose their sanity. He looks, sounds, and acts like a real baby so it's natural to want to take him home now. Spending several more weeks learning to eat at a snails pace is a common breaking point. I've done pretty well until now, so I think we can tough it out for another month or so, but I suppose we shall see!
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Friday, March 4, 2011
Right on Schedule!
Over the past few weeks I've been hearing about approximate dates for milestones in little John's development. While the nurses and doctors are adamant that every baby is different and things can happen sooner or later, we've been looking forward to these dates as goals. When he got sick a few weeks ago, I was really bummed because he had been doing so well. I was certain we would be set back weeks. It was impossible to imagine that things would do a complete 180 so quickly. Well, not wanting to disappoint his mama, my boy has been working overtime to make sure he hits these dates--I'm so completely blown away with his progress!
Last night John and I went to visit him, and I was a bit nervous when he was really warm when I took his temperature...then I learned that's a good thing! His temperature in isolette was automatically adjusting based on a temperature probe in his armpit. Because he is getting fatter--he's now 3 lbs 13 oz and has shed the excess water weight--the probe is becoming less accurate so this control function doesn't work well. The nurse switched the isolette over to manual control, and they're now starting to wean the temp down to room temperature. Right now his isolette is 32 degrees celsius, and room temp is 28. As they lower that temperature, they will start dressing him and swaddling him. When he gets to 28, as long as he's maintaining his body temperature and still gaining weight, they'll move him to his crib!!! We expect this to happen within the next week or two.
When I showed up today, I took a look at his oxygen levels before peeking in at him. The dial was at 27% when he's usually 35-45% (sometimes higher). Then I peeked under the blanket draped over the isolette and saw that he was laying on his back. This boy hates his back! The sides of his head are getting flat because he HATES laying on his back. His oxygen is usually highest in this position, which sucks since we want him to have a nice round head. Then I looked back at his equipment and saw his high-flow level was down to 2.5 when it was at 4 yesterday (it was 6 last week). I couldn't believe it so I asked the nurse. She said they lowered his high-flow to 3 and that the 2.5 must be an accident with the equipment and she bumped it back to 3. Either way, he was kicking butt at the 2.5 so I'm confident he'll keep weening down in the next few days.
I held him for 2 hours and his oxygen level dropped down to 23%. When I had to put him back he was pretty upset and fussy about it. Even then his oxygen only needed to go to 29%. I positioned him on his back and gave him his binky to calm him down. His oxygen STILL stayed low, and he just sucked away. His nurse was so proud of him, she told me that on Monday, as long as he keeps this up over the weekend, she's going to speak to the doctor about starting him on his breast feeding training. I'm so floored by this. It's typical to start this around 34 weeks, and today he is 34 weeks on the nose. If you had asked me a week ago, I never would've guessed that he'd be ready by now. I know things can change, and he may not be ready on Monday, but he is so close. I'm getting so excited and nervous, I have to try not to think about it.
When he was first born, I was too scared to buy anything for him. Now I'm stuck here completely unprepared while he's working so hard to come home. This weekend that will all be fixed. It's drill weekend for John, and the kids are visiting their other parents so I have all this time to myself. Instead of watching movies, eating chocolates, and drinking wine like I usually do, I'm scrubbing the house and buying all the baby gear we'll need. Next Saturday, John and I are attending the mandatory discharge and CPR class. Oh my hell, this is really happening!!!
Last night John and I went to visit him, and I was a bit nervous when he was really warm when I took his temperature...then I learned that's a good thing! His temperature in isolette was automatically adjusting based on a temperature probe in his armpit. Because he is getting fatter--he's now 3 lbs 13 oz and has shed the excess water weight--the probe is becoming less accurate so this control function doesn't work well. The nurse switched the isolette over to manual control, and they're now starting to wean the temp down to room temperature. Right now his isolette is 32 degrees celsius, and room temp is 28. As they lower that temperature, they will start dressing him and swaddling him. When he gets to 28, as long as he's maintaining his body temperature and still gaining weight, they'll move him to his crib!!! We expect this to happen within the next week or two.
When I showed up today, I took a look at his oxygen levels before peeking in at him. The dial was at 27% when he's usually 35-45% (sometimes higher). Then I peeked under the blanket draped over the isolette and saw that he was laying on his back. This boy hates his back! The sides of his head are getting flat because he HATES laying on his back. His oxygen is usually highest in this position, which sucks since we want him to have a nice round head. Then I looked back at his equipment and saw his high-flow level was down to 2.5 when it was at 4 yesterday (it was 6 last week). I couldn't believe it so I asked the nurse. She said they lowered his high-flow to 3 and that the 2.5 must be an accident with the equipment and she bumped it back to 3. Either way, he was kicking butt at the 2.5 so I'm confident he'll keep weening down in the next few days.
I held him for 2 hours and his oxygen level dropped down to 23%. When I had to put him back he was pretty upset and fussy about it. Even then his oxygen only needed to go to 29%. I positioned him on his back and gave him his binky to calm him down. His oxygen STILL stayed low, and he just sucked away. His nurse was so proud of him, she told me that on Monday, as long as he keeps this up over the weekend, she's going to speak to the doctor about starting him on his breast feeding training. I'm so floored by this. It's typical to start this around 34 weeks, and today he is 34 weeks on the nose. If you had asked me a week ago, I never would've guessed that he'd be ready by now. I know things can change, and he may not be ready on Monday, but he is so close. I'm getting so excited and nervous, I have to try not to think about it.
When he was first born, I was too scared to buy anything for him. Now I'm stuck here completely unprepared while he's working so hard to come home. This weekend that will all be fixed. It's drill weekend for John, and the kids are visiting their other parents so I have all this time to myself. Instead of watching movies, eating chocolates, and drinking wine like I usually do, I'm scrubbing the house and buying all the baby gear we'll need. Next Saturday, John and I are attending the mandatory discharge and CPR class. Oh my hell, this is really happening!!!
Wednesday, March 2, 2011
No Stevie Wonder for Me
Here's a bit of trivia for your Wednesday afternoon--Stevie Wonder was born 6 weeks premature and is blind because of ROP, the same eye disease I was worrying about last week.
Well, little John had another eye exam today and I'm happy to say he seems to be in the clear. He still has stage one ROP, but his vessels have grown out to zone 3. Basically there is not enough room left for any abnormal growth to jeopardize his eyesight. They'll check him again in a few weeks just to be sure, but they say we have nothing to worry about. Whew!
They gave him some Lasix yesterday and he lost 3 ounces of excess fluid. He's still a tiny bit swollen today, but he's looking so much better. He is IV free and they're starting to fortify his milk again with extra calories. His oxygen levels are much better today as well. That's the biggest thing he needs to work on now. He needs that oxygen flow to get lower so he can start learning to eat. He's been practicing the sucking and can breathe and suck at the same time really well, we just need him to get swallowing in the mix.
He basically has to do four things before he can come home:
1) Regulate his own body temp--we'll be there in about a week or two.
2) Stop the A's and B's (apnea and slowed heart rate) -- he's only had one episode in the past few days, where he used to have several each day. This typically is outgrown around 36 weeks
3) Be steadily gaining weight -- he's doing good on this one lately
4) Take all his feedings on his own -- this is the big one he needs to learn next
He has come so far in the last 6 weeks, and I'm starting to feel like there may be an end in sight. I'm starting to feel unprepared! I need to clean my house top to bottom, get the carpets cleaned, get my ducts cleaned, wash his new clothes and bedding, buy a car seat, buy a rocker/recliner, buy pretty much every other little baby thing (stroller, diaper bag, bottles, mini fingernail clippers, etc.) that I didn't get to since he came so early, and the list goes on and on.....I'm starting to panic!!!!
Well, little John had another eye exam today and I'm happy to say he seems to be in the clear. He still has stage one ROP, but his vessels have grown out to zone 3. Basically there is not enough room left for any abnormal growth to jeopardize his eyesight. They'll check him again in a few weeks just to be sure, but they say we have nothing to worry about. Whew!
They gave him some Lasix yesterday and he lost 3 ounces of excess fluid. He's still a tiny bit swollen today, but he's looking so much better. He is IV free and they're starting to fortify his milk again with extra calories. His oxygen levels are much better today as well. That's the biggest thing he needs to work on now. He needs that oxygen flow to get lower so he can start learning to eat. He's been practicing the sucking and can breathe and suck at the same time really well, we just need him to get swallowing in the mix.
He basically has to do four things before he can come home:
1) Regulate his own body temp--we'll be there in about a week or two.
2) Stop the A's and B's (apnea and slowed heart rate) -- he's only had one episode in the past few days, where he used to have several each day. This typically is outgrown around 36 weeks
3) Be steadily gaining weight -- he's doing good on this one lately
4) Take all his feedings on his own -- this is the big one he needs to learn next
He has come so far in the last 6 weeks, and I'm starting to feel like there may be an end in sight. I'm starting to feel unprepared! I need to clean my house top to bottom, get the carpets cleaned, get my ducts cleaned, wash his new clothes and bedding, buy a car seat, buy a rocker/recliner, buy pretty much every other little baby thing (stroller, diaper bag, bottles, mini fingernail clippers, etc.) that I didn't get to since he came so early, and the list goes on and on.....I'm starting to panic!!!!
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Tuesday, March 1, 2011
It's Not Just Gas!
I have a few minutes this morning, so before I get chastised for not having a recent update, I'm getting to it!
My fat little baby is just getting fatter. He is weighing in at about 3 lb 14 oz right now. Unfortunately he is really, really swollen from the IV fluids still, so we expect him to lose some ounces in the next few days as they take him off the fluids. They'll give him a chance to pee it all out before they intervene with a diuretic. He's just about up to his full feeding level of 29 ml of milk every 3 hours, and things seem to be moving through his digestive system just fine. I just hope everything stays that way because I don't want him to have to start over again!
His ultrasound on Friday showed that his kidneys are clear of fungus, and all his cultures are coming up clear. Now the docs are re-reviewing the earlier ultrasounds to make sure that what they saw were actually fungus balls in the first place before they decide how long they'll keep him on anti-fungal meds. Since he's on full feedings, they can give him the meds orally now so he should be losing his IV in the next day or two. I'm happy about this since he's been stuck like a pincushion and the only good veins left are in his head. While I don't mind seeing him with IVs in his head, it's just a bad reminder that he was sick. Plus, I want him to have a round head, and he's limited in the positions they can lay him in with it there.
He got a new isolette yesterday, and hopefully it's the last one he has to have. Because he's nearing 4 lbs, he's close to being able to regulate his own body temperature. Pretty soon they'll start weaning the temperature inside the isolette to match the room air. After that, he'll be in a crib where I can hold him more often!!!! I can hardly wait. It's so hard being limited to holding him for only a few hours every-other day since John and I take turns each day. Yesterday was my turn, and he loved it! His oxygen needs go way down when he gets held, which is a sign that he is content. When that happens, it is really the best feeling in the world, and yesterday was no different. I got to hold him for just over two hours. It's crazy how fast sitting in one spot for two hours can fly by. We just cuddled and napped together for most of it, but the best part was when he was awake. He would open his eyes, look at me for a few seconds, and then get the biggest grin on his little face. I'm sorry, but I refuse to believe that when babies smile, it's just gas. I've had gas. It did not make me smile. I know that my baby knows me, loves me, and smiles to let me know it.
Since little John is doing so well this week, I am too. I'm finally hitting the point where I don't need to collapse in exhaustion as soon as I get home. No more naps for me. I have more time and energy to devote to work and am ready to start exercising, cooking dinner, and getting my house in order. It sucks that it took 6 weeks to get here since I had no time to relax and recover, but I suppose it could be worse.
Other than that, everyone else is doing great. On Saturday the nurses let Marcel and Sascha sneak into a back hall of the NICU and peek at their brother through a window as I held him up out of his isolette. The smiles on their faces were priceless! Hopefully this will tide them over for another month or so until he comes home.
Yesterday we got word that John will be going back on full-time orders with the guard in the next month. He's also going to be getting promoted to Sergeant First Class (E7) soon. We took a big financial hit when his last position ended in October and he had to go back to his civilian job at Geneva. Then the civilian job had a layoff, and John had the option of accepting a layoff or relocating to the Layton plant. He's been driving to Layton every day since, and has been racking up the miles in my poor little Bimmer since it's way too expensive to drive the truck that far. Then all of this happened with the baby 3 months early, and I'm now temporarily working on a limited basis. It's been a serious test of faith, but now that he is going back to the guard with a promotion, I know everything is going to be just fine. Aside from the financial side, I'm so excited that he gets to go back to doing a job that he loves.
Our family is so blessed!
My fat little baby is just getting fatter. He is weighing in at about 3 lb 14 oz right now. Unfortunately he is really, really swollen from the IV fluids still, so we expect him to lose some ounces in the next few days as they take him off the fluids. They'll give him a chance to pee it all out before they intervene with a diuretic. He's just about up to his full feeding level of 29 ml of milk every 3 hours, and things seem to be moving through his digestive system just fine. I just hope everything stays that way because I don't want him to have to start over again!
His ultrasound on Friday showed that his kidneys are clear of fungus, and all his cultures are coming up clear. Now the docs are re-reviewing the earlier ultrasounds to make sure that what they saw were actually fungus balls in the first place before they decide how long they'll keep him on anti-fungal meds. Since he's on full feedings, they can give him the meds orally now so he should be losing his IV in the next day or two. I'm happy about this since he's been stuck like a pincushion and the only good veins left are in his head. While I don't mind seeing him with IVs in his head, it's just a bad reminder that he was sick. Plus, I want him to have a round head, and he's limited in the positions they can lay him in with it there.
He got a new isolette yesterday, and hopefully it's the last one he has to have. Because he's nearing 4 lbs, he's close to being able to regulate his own body temperature. Pretty soon they'll start weaning the temperature inside the isolette to match the room air. After that, he'll be in a crib where I can hold him more often!!!! I can hardly wait. It's so hard being limited to holding him for only a few hours every-other day since John and I take turns each day. Yesterday was my turn, and he loved it! His oxygen needs go way down when he gets held, which is a sign that he is content. When that happens, it is really the best feeling in the world, and yesterday was no different. I got to hold him for just over two hours. It's crazy how fast sitting in one spot for two hours can fly by. We just cuddled and napped together for most of it, but the best part was when he was awake. He would open his eyes, look at me for a few seconds, and then get the biggest grin on his little face. I'm sorry, but I refuse to believe that when babies smile, it's just gas. I've had gas. It did not make me smile. I know that my baby knows me, loves me, and smiles to let me know it.
Since little John is doing so well this week, I am too. I'm finally hitting the point where I don't need to collapse in exhaustion as soon as I get home. No more naps for me. I have more time and energy to devote to work and am ready to start exercising, cooking dinner, and getting my house in order. It sucks that it took 6 weeks to get here since I had no time to relax and recover, but I suppose it could be worse.
Other than that, everyone else is doing great. On Saturday the nurses let Marcel and Sascha sneak into a back hall of the NICU and peek at their brother through a window as I held him up out of his isolette. The smiles on their faces were priceless! Hopefully this will tide them over for another month or so until he comes home.
Yesterday we got word that John will be going back on full-time orders with the guard in the next month. He's also going to be getting promoted to Sergeant First Class (E7) soon. We took a big financial hit when his last position ended in October and he had to go back to his civilian job at Geneva. Then the civilian job had a layoff, and John had the option of accepting a layoff or relocating to the Layton plant. He's been driving to Layton every day since, and has been racking up the miles in my poor little Bimmer since it's way too expensive to drive the truck that far. Then all of this happened with the baby 3 months early, and I'm now temporarily working on a limited basis. It's been a serious test of faith, but now that he is going back to the guard with a promotion, I know everything is going to be just fine. Aside from the financial side, I'm so excited that he gets to go back to doing a job that he loves.
Our family is so blessed!
Friday, February 25, 2011
Good Friday Indeed
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!
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!
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!
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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!
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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.
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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!
Sunday, January 30, 2011
2 pounds!
We've had an amazing weekend with the little boy. We havent been able to spend as much time with him as we did last weekend because we've been trying to balance normal life with the other two kids. Pinewood derby and a birthday party were yesterday, and we have to make them feel as normal as possible even though it was so hard to be so away from the baby all day.
I was a little down because we didnt make it to the hospital until 5pm yesterday, but it was worth the wait because the nurse let me do skin-to-skin for the first time. It was the most amazing experience to hold him to me for the first time, since my biggest fear so far has been that I'd never get a chance to hold him. I sat and rocked him for 30 minutes, and every bit of fear and stress was completely gone. We were a bit bummed that John couldnt hold him since only one person can hold him each day for the time being, but I was confident little John would stay stable on his breathing so big John could hold him today.
Sure enough, when we showed up this morning little John was bright eyed and bushy tailed. Its like he knew we were coming. We changed a poopy diaper (yay!) and after his cares were done the nurse let big John hold him skin-to-skin. Little baby sat there with his eyes open trying to look up at his daddy. He recognizes his voice, and I bet it made his day to be so close to dad. John got to rock him to sleep for 30 minutes, while I got to sneak in some kisses and some whiffs of the baby smell in his neck. He smells like his isolette, but its better than nothing!
Here's how he's doing otherwise: he weighs 2 lb 2 oz, though hes swelling a bit from his IV. He's been eating for 2 days and has been keeping it down. They pull a bit of undigested residual food out before each feeding, but not as much as they were pulling out last week. He's pooping a little bit which gives me hope that things are moving along. He's doing great on breathing and all of his other stats look great, so now they're just focusing on getting him to tollerate his feedings. He's gaining weight so well just from the IV, I can't wait to see how fast he plumps up once he's regularly getting milk. He's finally getting fat on his non-existant bum, I can't wait until its fat enough to pinch!
I was a little down because we didnt make it to the hospital until 5pm yesterday, but it was worth the wait because the nurse let me do skin-to-skin for the first time. It was the most amazing experience to hold him to me for the first time, since my biggest fear so far has been that I'd never get a chance to hold him. I sat and rocked him for 30 minutes, and every bit of fear and stress was completely gone. We were a bit bummed that John couldnt hold him since only one person can hold him each day for the time being, but I was confident little John would stay stable on his breathing so big John could hold him today.
Sure enough, when we showed up this morning little John was bright eyed and bushy tailed. Its like he knew we were coming. We changed a poopy diaper (yay!) and after his cares were done the nurse let big John hold him skin-to-skin. Little baby sat there with his eyes open trying to look up at his daddy. He recognizes his voice, and I bet it made his day to be so close to dad. John got to rock him to sleep for 30 minutes, while I got to sneak in some kisses and some whiffs of the baby smell in his neck. He smells like his isolette, but its better than nothing!
Here's how he's doing otherwise: he weighs 2 lb 2 oz, though hes swelling a bit from his IV. He's been eating for 2 days and has been keeping it down. They pull a bit of undigested residual food out before each feeding, but not as much as they were pulling out last week. He's pooping a little bit which gives me hope that things are moving along. He's doing great on breathing and all of his other stats look great, so now they're just focusing on getting him to tollerate his feedings. He's gaining weight so well just from the IV, I can't wait to see how fast he plumps up once he's regularly getting milk. He's finally getting fat on his non-existant bum, I can't wait until its fat enough to pinch!
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Friday, January 28, 2011
29 Weeks!
My little guy has reached gestational week 29. It is amazing how fast he is growing. He's starting to put on weight so he doesn't look as fragile, and it's getting harder to count his ribs. His weight last night was a whopping 1 lb 15 oz. Only one more little ounce and he'll officially be a 2 pound baby!
He tried eating a bit yesterday, but after a few feedings they found that things still didn't want to move through. They gave him a suppository this morning and a few hours later, he had the nastiest poopy diaper ever! I had to take pictures to send to daddy since we've been waiting for this for a week. They've given him another transfusion to help him make up for the blood they've been withdrawing for tests, and are going to give food another shot this evening. I hope now things will just get moving.
Everything else is looking good, he's doing fabulously on the cannula and no sign of infection. Hopefully he can stay stable enough for us to start skin-to-skin soon. I cannot wait until I get to hold his naked little body inside my shirt on my chest, I daydream about it all day long.
Today I got to hang out and watch some procedures. I got to hold his left hand and soothe him while they put in a new IV in his little right hand and removed another line from his foot. Little by little he's losing his "accessories" and I couldn't be more proud. He's so tough, he hardly flinches when the nurses have to mess with him. They had his isolette open so I got several good pics and videos. It's awesome to compare them to what we took when he was born to see how fast he really does grow. I'm so proud of him!!! He is getting more and more alert too. He spent most of the time during the procedures trying to look at me. He's also trying to learn how to put his fingers in his mouth. It's the funniest thing to watch. He gets his hand up to his mouth, and then starts sucking so it looks like he's kissing his own hand. He just has to learn to open up!
As for the rest of the family, I think the kids are tired of hearing about their brother all the time. They haven't seen him, and don't get to until he comes home, so they're pretty detached. We are having a family night for them tonight for "Junk Food Friday" where we raid the corner store and rent a movie, so hopefully they feel better when they get some more direct attention. Hopefully John and I can stay awake for the movie, we're both massively exhausted. I think we may just sleep in until 8:00 am tomorrow morning....wow, that sounds like heaven!
P.S. I just got a text from John saying he's been moved to room 2 of the NICU, which means he's stable enough to make room for new deliveries in room 1....exciting!!!!
He tried eating a bit yesterday, but after a few feedings they found that things still didn't want to move through. They gave him a suppository this morning and a few hours later, he had the nastiest poopy diaper ever! I had to take pictures to send to daddy since we've been waiting for this for a week. They've given him another transfusion to help him make up for the blood they've been withdrawing for tests, and are going to give food another shot this evening. I hope now things will just get moving.
Everything else is looking good, he's doing fabulously on the cannula and no sign of infection. Hopefully he can stay stable enough for us to start skin-to-skin soon. I cannot wait until I get to hold his naked little body inside my shirt on my chest, I daydream about it all day long.
Today I got to hang out and watch some procedures. I got to hold his left hand and soothe him while they put in a new IV in his little right hand and removed another line from his foot. Little by little he's losing his "accessories" and I couldn't be more proud. He's so tough, he hardly flinches when the nurses have to mess with him. They had his isolette open so I got several good pics and videos. It's awesome to compare them to what we took when he was born to see how fast he really does grow. I'm so proud of him!!! He is getting more and more alert too. He spent most of the time during the procedures trying to look at me. He's also trying to learn how to put his fingers in his mouth. It's the funniest thing to watch. He gets his hand up to his mouth, and then starts sucking so it looks like he's kissing his own hand. He just has to learn to open up!
As for the rest of the family, I think the kids are tired of hearing about their brother all the time. They haven't seen him, and don't get to until he comes home, so they're pretty detached. We are having a family night for them tonight for "Junk Food Friday" where we raid the corner store and rent a movie, so hopefully they feel better when they get some more direct attention. Hopefully John and I can stay awake for the movie, we're both massively exhausted. I think we may just sleep in until 8:00 am tomorrow morning....wow, that sounds like heaven!
P.S. I just got a text from John saying he's been moved to room 2 of the NICU, which means he's stable enough to make room for new deliveries in room 1....exciting!!!!
Thursday, January 27, 2011
Breathe, baby, breathe
John is doing really good today. They tried feeding him yesterday, but he decided he didn't want to breathe while he was eating and they kept pulling air and a little blood out of his belly. They had to stop his feedings again last night. His infection has cleared up, and hes doing great after his 2nd transfusion yesterday. It just looks like things dont want to move through his digestive system.
The docs think he's just irritated by the CPAP, which is responsible for all the air in his tummy. They also think its giving him a bloody nose, which he swallows, which explains the blood. They've decided to upgrade him from CPAP and try the cannula again to reduce the air and irritation, hoping he'll tolerate his feedings.
The CPAP and accompanying head gear are gone now, and he's breathing well. Mom is very proud of him! I also get to see his face and fuzzy head which makes me even more happy. If he's a good boy and keeps on breathing, we're gonna give milk another shot tomorrow.
Other than that, he's doing great. I decorated his isolette with B&W pics of his goofy brother and sister, and his awesome mom and dad so he has some company. He's up to 1 lb 13 oz today. The small feedings they tried yesterday stimulated his bowls a little and he had a little poopy diaper today. It wasn't much, and it's still meconium. Once all that nasty stuff gets out and the air stays out of his belly, I'm sure he'll be a regular little poop factory.
The docs think he's just irritated by the CPAP, which is responsible for all the air in his tummy. They also think its giving him a bloody nose, which he swallows, which explains the blood. They've decided to upgrade him from CPAP and try the cannula again to reduce the air and irritation, hoping he'll tolerate his feedings.
The CPAP and accompanying head gear are gone now, and he's breathing well. Mom is very proud of him! I also get to see his face and fuzzy head which makes me even more happy. If he's a good boy and keeps on breathing, we're gonna give milk another shot tomorrow.
Other than that, he's doing great. I decorated his isolette with B&W pics of his goofy brother and sister, and his awesome mom and dad so he has some company. He's up to 1 lb 13 oz today. The small feedings they tried yesterday stimulated his bowls a little and he had a little poopy diaper today. It wasn't much, and it's still meconium. Once all that nasty stuff gets out and the air stays out of his belly, I'm sure he'll be a regular little poop factory.
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Tuesday, January 25, 2011
I can sleep well tonight!
Today was a fantastic one in the NICU. I got a late start because I wanted to stop at the office and get some work done. It was so great to feel so normal today! I drove up to the U in the snowstorm and ended up staying for the day instead of driving back to work or to my mom's, where I usually go between visits. I figured it wasnt worth wasting time driving in snow when I could just stare at John all day.
I got to sit with baby John for hours, just watching him stretch and kick and snooze. He looks so peaceful in there, i just want to crawl in there with him and take a nap. The nurses have been joking that he doesnt even know he's sick because he just sleeps like nothings wrong.
He is doing so much better today--his xrays are looking better and his recent cultures are not showing infection so far, though they will let them grow for a few more days to be sure. His belly is a little tender but they havent been pulling much air out of his stomach. They think they'll start feedings again tomorrow. Here's to hoping he can tolerate it! He had another blood transfusion because he's had to have so many blood draws, his little body doesnt make blood fast enough to replenish it.
John and I just finished his 8pm cares, where we were joined by Pastor David from our church. Baby is still doing great and his glucose levels are perfect. He also gained a few more grams. Its not much, but any weight gain makes us happy. He's getting so good at holding my hand his little fingertips turn white since he squeezes so hard. Pastor David tried holding his hand but he knew it was an imposter--he still liks mommy's finger best (with daddy being a close second, of course). We got a quick prayer in before we were kicked out since another delivery was on the way.
Man I'm tired but I'm glad these days are flying by! Ive got another full day tomorrow with visits and work and chores. I cant wait until he comes home so I have a baby to show for all this exhaustion!
I got to sit with baby John for hours, just watching him stretch and kick and snooze. He looks so peaceful in there, i just want to crawl in there with him and take a nap. The nurses have been joking that he doesnt even know he's sick because he just sleeps like nothings wrong.
He is doing so much better today--his xrays are looking better and his recent cultures are not showing infection so far, though they will let them grow for a few more days to be sure. His belly is a little tender but they havent been pulling much air out of his stomach. They think they'll start feedings again tomorrow. Here's to hoping he can tolerate it! He had another blood transfusion because he's had to have so many blood draws, his little body doesnt make blood fast enough to replenish it.
John and I just finished his 8pm cares, where we were joined by Pastor David from our church. Baby is still doing great and his glucose levels are perfect. He also gained a few more grams. Its not much, but any weight gain makes us happy. He's getting so good at holding my hand his little fingertips turn white since he squeezes so hard. Pastor David tried holding his hand but he knew it was an imposter--he still liks mommy's finger best (with daddy being a close second, of course). We got a quick prayer in before we were kicked out since another delivery was on the way.
Man I'm tired but I'm glad these days are flying by! Ive got another full day tomorrow with visits and work and chores. I cant wait until he comes home so I have a baby to show for all this exhaustion!
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Monday, January 24, 2011
He's doing better!
So a nurse just gave me great news: other than the little infection, John is doing really great! They're pretty sure that the infection is not in his belly or intestines, and they may start feedings again as early as tomorrow as long as the air in his belly stays low. They've moved him from a suction feeding tube to a regular feeding tube which shows progress!
She told me that infections like this are very common, and most his age get at least 1 or 2 during their stay. Also, babies his age with infections typically end up on a ventilator, and the fact that my little man is on the lowest level of oxygen on CPAP shows that he really is the toughest little cowboy in town. He's looking a lot better since his transfusion, and seems so much more responsive to his surroundings. He was crying from a wet diaper when I showed up, and he had to have a blanket on to keep him from tugging his tubes. After i changed him the nurse let me hold his hand for 30 minutes. I finally had to let him go so he would sleep since he just wanted to stare at my fingers.
Man I love that little guy!!!
She told me that infections like this are very common, and most his age get at least 1 or 2 during their stay. Also, babies his age with infections typically end up on a ventilator, and the fact that my little man is on the lowest level of oxygen on CPAP shows that he really is the toughest little cowboy in town. He's looking a lot better since his transfusion, and seems so much more responsive to his surroundings. He was crying from a wet diaper when I showed up, and he had to have a blanket on to keep him from tugging his tubes. After i changed him the nurse let me hold his hand for 30 minutes. I finally had to let him go so he would sleep since he just wanted to stare at my fingers.
Man I love that little guy!!!
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One week old!
My teeny little super guy is a whole week old today, though it feels like he's been here for an eternity! Each day has been the best and worst day of my life at the exact same time. We're just trying to take it one day at a time, and find little reasons to celebrate to keep us going. Making it one week is a huge reason to celebrate.
The lab work on his last culture came back showing that there is some kind of infection in his blood, though it appears to not be in his bowels so far (thank god!). They have had him on antibiotics for almost 2 days now and he should start responding soon, though I'd like to think he's already responding. His oxygen levels are lowering, which is a good sign, and his xrays are coming back without any bowel issues. They don't think he's developing NEC so far, and that he's just not pooping because he's sick. They've taken another culture to double check the infection, and hopefully we see improvement in that in the next day. His feedings are still halted, but they hope to start them up slowly again in the next few days. In the meantime, he's getting nutrients and electrolytes through an IV. The mixture is a bit funny and gives him high blood sugar, but this happened when he was on IV right after he was born. They just have to get the sugar mixture just right again and he should be fine. Diabetes runs rampant in my family, but the neonatal endicrinologist doesn't think that is an issue here, and that his little system is just so young. His hematocrit (red blood cells) levels are low this morning, which is normal for preemies, so they're giving him a transfusion to make him feel better. They're pulling him off minimum stimulation in the next day or two, which is a good sign, and he may be graduating to room 2 of the NICU pretty soon. He also had his first brain ultrasound this morning to check for bleeding, and that came back normal. So, all in all he's doing great except for this blasted infection. I've been panicking for the last 2 days since I found out about the possible infection, and am starting to feel a little better, but it's still going to be scary until I get the word that he's clear.
John and I are doing really good, all things considered. We're both starting to work again today, which hopefully helps the days seem more normal. It's really hard to not be able to be with Little John whenever we want, but we just need him to sleep and heal and grow, and have to take care of ourselves in the process. I'm physically feeling good, and am off the painkillers other than Ibuprofin. I absolutely hate the way percocet makes me feel! My blood pressure still spikes up every now and then (which I have medication for), and I'm still seeing auras from time to time, but the doctor told me I don't appear to have any serious tissue damage so far. It will just take a few months for my body to fully recover from preeclampsia. At least my cankles are going down, it seriously looked like someone Nancy Kerriganed my feet the day I got home from the hospital!
Well, I'm off to finish up some work and will be getting back to the hopsital to change his diaper at 2:00. Then I get to spend the afternoon with my other 2 kiddos, who I haven't seen outside of hospital visits in over a week. They're worried sick about their brother and have a lot of anxiety over whether he'll make it or not. It breaks my heart that these two little kids have to deal with something so heavy, though I know they'll rebound much faster than I will should anything happen. I hope I can calm them down with the results of today and that we can just spend a happy night together, celebrating their brother's one-week birthday!
The lab work on his last culture came back showing that there is some kind of infection in his blood, though it appears to not be in his bowels so far (thank god!). They have had him on antibiotics for almost 2 days now and he should start responding soon, though I'd like to think he's already responding. His oxygen levels are lowering, which is a good sign, and his xrays are coming back without any bowel issues. They don't think he's developing NEC so far, and that he's just not pooping because he's sick. They've taken another culture to double check the infection, and hopefully we see improvement in that in the next day. His feedings are still halted, but they hope to start them up slowly again in the next few days. In the meantime, he's getting nutrients and electrolytes through an IV. The mixture is a bit funny and gives him high blood sugar, but this happened when he was on IV right after he was born. They just have to get the sugar mixture just right again and he should be fine. Diabetes runs rampant in my family, but the neonatal endicrinologist doesn't think that is an issue here, and that his little system is just so young. His hematocrit (red blood cells) levels are low this morning, which is normal for preemies, so they're giving him a transfusion to make him feel better. They're pulling him off minimum stimulation in the next day or two, which is a good sign, and he may be graduating to room 2 of the NICU pretty soon. He also had his first brain ultrasound this morning to check for bleeding, and that came back normal. So, all in all he's doing great except for this blasted infection. I've been panicking for the last 2 days since I found out about the possible infection, and am starting to feel a little better, but it's still going to be scary until I get the word that he's clear.
John and I are doing really good, all things considered. We're both starting to work again today, which hopefully helps the days seem more normal. It's really hard to not be able to be with Little John whenever we want, but we just need him to sleep and heal and grow, and have to take care of ourselves in the process. I'm physically feeling good, and am off the painkillers other than Ibuprofin. I absolutely hate the way percocet makes me feel! My blood pressure still spikes up every now and then (which I have medication for), and I'm still seeing auras from time to time, but the doctor told me I don't appear to have any serious tissue damage so far. It will just take a few months for my body to fully recover from preeclampsia. At least my cankles are going down, it seriously looked like someone Nancy Kerriganed my feet the day I got home from the hospital!
Well, I'm off to finish up some work and will be getting back to the hopsital to change his diaper at 2:00. Then I get to spend the afternoon with my other 2 kiddos, who I haven't seen outside of hospital visits in over a week. They're worried sick about their brother and have a lot of anxiety over whether he'll make it or not. It breaks my heart that these two little kids have to deal with something so heavy, though I know they'll rebound much faster than I will should anything happen. I hope I can calm them down with the results of today and that we can just spend a happy night together, celebrating their brother's one-week birthday!
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