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
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