July 23 10:30
So there have been some people asking me how to post a comment.......and I really don't know (or at least I didn't until 10 minutes ago). I had never done a blog before. When Heather and I were living in the hospital I just googled free blog and found this site. I didn't do much investigating of the site at all beyond just getting info out. Well, over the last couple of weeks I have played with it a bit. I made a change a couple of weeks ago. Apparantly you couldn't post a comment without signing up for something or other. Well I found out I could change that and allow any one to comment so I did. Tonight I figured I'd try to post a comment to myself to at least figure out how to do it......here's how: Click on the title of the blog entry you want to comment on. Once you've clicked, you have now chosen just that title and its writing to view. If you scroll down to the bottom you will see the option to "post a comment". Click on it. There you will find a box to type in. Once you've typed what you want, scroll down to the "word verification" area and type in the funky letters in the space provided. Scroll down more to the "choose an identity" portion. I didn't know what they meant so I just chose "anonymous". Then click on "publish your comment". It should work:)
Wednesday, July 23, 2008
Streaking
July 23 9:45 pm
"Come on......we're going streaking.....up through the quad..."......"who's streaking???"......."everyone's doing it......there's more coming..." ......."Frank, get in the car!!!"
I know, I know, another random movie quote.....but this was a great scene from Old School that I had to open with tonight. It dawned on me today that there is this fascination in American culture with streaking.......more so in the 70's, but it still exists today. Does anyone remember that song from the 70's......."oh yes they call him the streak....boogie-dy boogie-dy" if not you can go to this website to hear it http://www.youtube.com/watch?v=u87_RT_WPeY it's pretty amusing. Even today the act of streaking rears its naked head once in a while. Every now and then you'll hear of a graduating senior who rips off his/her robe while crossing the stage......maybe not a full streak....maybe more of a flash, but you get the idea. Why was streaking on my mind.....well it's because today marked the first day that I saw my son Parker wearing clothing!! That's right.....he's swimming in them despite the rolled up arms, but he still had on clothes today!!! (see pics below). I have to say it was pretty doggone cute. The new clothes didn't represent much except the fact that he continues to keep helping to maintain his body temp which means he can wear clothes and be swaddled. The overall news for our little Park is very very good. He continues to show progress in many small areas. The steroids are working wonders (no wonder Barry Bonds through away his respectability to dabble in them :)). Parker had his vent settings decreased even further and there is even talk that maybe....just maybe....they may try to switch him off of the oscillator tomorrow and onto the conventional vent. Hopefully the fourth time is the charm. We'll have to see what happens. Overall though he is doing a lot better:) Tyler on the other hand has shown no progress. They tried lasics last night to no avail. The docs spent most of the day trying different vent settings to help him out. None of them made any significant difference. When we left the hospital at 8:15 the decision had been made to start him on steroids as well. Hopefully we will see him do much better in about 48 hours. It will be a welcome site since we saw him desat to the point of needing to be bagged multiple times while we were there today. The poor little guy needs some help. Hopefully by Friday, Parker will be on a conventional vent and we will get to hold him. Tyler should be soon after. Fingers crossed, the day when we are each holding a boy simultaneously may not be far off. See cute pics below:)
"Come on......we're going streaking.....up through the quad..."......"who's streaking???"......."everyone's doing it......there's more coming..." ......."Frank, get in the car!!!"
I know, I know, another random movie quote.....but this was a great scene from Old School that I had to open with tonight. It dawned on me today that there is this fascination in American culture with streaking.......more so in the 70's, but it still exists today. Does anyone remember that song from the 70's......."oh yes they call him the streak....boogie-dy boogie-dy" if not you can go to this website to hear it http://www.youtube.com/watch?v=u87_RT_WPeY it's pretty amusing. Even today the act of streaking rears its naked head once in a while. Every now and then you'll hear of a graduating senior who rips off his/her robe while crossing the stage......maybe not a full streak....maybe more of a flash, but you get the idea. Why was streaking on my mind.....well it's because today marked the first day that I saw my son Parker wearing clothing!! That's right.....he's swimming in them despite the rolled up arms, but he still had on clothes today!!! (see pics below). I have to say it was pretty doggone cute. The new clothes didn't represent much except the fact that he continues to keep helping to maintain his body temp which means he can wear clothes and be swaddled. The overall news for our little Park is very very good. He continues to show progress in many small areas. The steroids are working wonders (no wonder Barry Bonds through away his respectability to dabble in them :)). Parker had his vent settings decreased even further and there is even talk that maybe....just maybe....they may try to switch him off of the oscillator tomorrow and onto the conventional vent. Hopefully the fourth time is the charm. We'll have to see what happens. Overall though he is doing a lot better:) Tyler on the other hand has shown no progress. They tried lasics last night to no avail. The docs spent most of the day trying different vent settings to help him out. None of them made any significant difference. When we left the hospital at 8:15 the decision had been made to start him on steroids as well. Hopefully we will see him do much better in about 48 hours. It will be a welcome site since we saw him desat to the point of needing to be bagged multiple times while we were there today. The poor little guy needs some help. Hopefully by Friday, Parker will be on a conventional vent and we will get to hold him. Tyler should be soon after. Fingers crossed, the day when we are each holding a boy simultaneously may not be far off. See cute pics below:)
The Pendulum
July 23 9am
With the physical layout of the room coupled with the vast difference in our visit between Ty and Park it felt very much like I was on a pendulum yesterday swinging from one extreme to the other. Walking into the room, you walk about 30 feet to the back of the room to see Tyler. Turning left, you'll pass through an opening in the wall about 7 feet wide. Once passing through the opening you'll look right to see Parker. The boys are both at the back of a large room separated by about a six foot wall partition. This partition acted as the midpoint of the pendulum swing......and there was a big difference with what was happening on either side of the partition. Upon arriving into the room we could immediately see "action" happening around Tyler's incubator......this is never a good sign. Two nurses were working on him......one was "bagging him". As I looked to the monitors I could see he was in trouble. His O2 level was in the teens and, worse yet, his blood pressure had dropped into the 80's. The lead nurse was in the process of calling for the doctor as well as calling for the other nurses to assist. By the time we took the short 30 foot walk from the door to the incubator there were four people around Tyler's bed. As we pasted ourselves against the wall as to get out of the way I became fixated on his monitor. Nothing good was happening. His O2 and blood pressure refused to go up. If his blood pressure hits 60 they will have to begin chest compressions. Hearing that this happened over the phone the other night was bad enough, I did not want to experience it first hand......but I would......I don't think I could have walked away. Luckily I didn't have to endure my son's chest being compressed. His blood pressure went up, but his O2 levels remained in the teens. Within about 45 seconds the doctors were on the scene. I can't tell you exactly what they were all doing, but I know there were five or six people now around Tyler. One was bringing up an old x-ray chest film the doctor was asking for. I looked over at his O2 input monitor and realized he was at 98%........They were giving him almost pure oxygen and he still wasn't responding. After what seemed like forever (realistically it was about two minutes) his O2 hit 50.....still dangerously low....but I started to breath again.....I didn't realize I had been holding my breath.....I wasn't holding it the whole time......I would've passed out.......who knows how long I was holding it......it was a little weird. Slowly.....really slowly........ his O2 came back up to normal. Nice timing mom and dad!!! We spent about an hour with Tyler, just cupping him and trying to get him relaxed. We couldn't leave him to go see Parker yet.....not until he was really okay. They came in and took another x-ray, did some other things and started his feedings. After about an hour they had is O2 back down to about 60%, had him on his tummy and he seemed to be doing okay. It was time to hop on the pendulum and take the short ten foot ride, cross the wall partition and see how Parker was doing. Thankfully, we found the opposite. Parker had been doing great! After two days on the steroids, he was responding. There wasn't any miraculous change, just a few subtle ones that, when put together, made a difference. His O2 was down to 55%. He had been in the upper 60's and 70's. This was significant. They had adjusted down two of his oscillator settings (too much to explain) which was good as well. He had not seen a decrease in his settings for a very very long time. He was still swaddled. This was significant because when you're swaddled the skin temp probe becomes useless. This means that he isn't needing the above heat lamp, which means he is able to help keep his body temp regulated. He seems to really love being swaddled, so this was another good sign. We spent about a half an hour cupping Parker and talking with the nurse which is when we noticed the biggest difference. He hadn't desatted yet. Usually he will desat into the upper 50's and low 60's for a time before pulling himself back up. He hadn't gone below 85!!! He didn't really desat at all the rest of the time we were there!!! It was amazing to see him so stable for so long. The nurse said he had been that way for the entire day. He'd desat once in a while into the 70's, but never lower and never for very long. This was a monumental difference. We went back and forth between the boys, Heather pumped and still he remained stable. He remained that way for the entire rest of the time we were there. Right before leaving we spoke with another doctor who told us they would be keeping Parker on the steroids for the rest of the twelve day course. She warned us that sometimes they will relapse some after the course has finished. So be it......right now there is progress with Parker!!!.....something we haven't seen in a long time. The doctor also said they would be giving Tyler a medicine to try and help him. If it didn't work by this morning that they would be starting him on the steroids as well. I had to explain to both boys that they wouldn't be eligible for the Olympics in Beijing this year, but getting better was more important. They were both sad as they both thought they really had a chance for gold, but understood the ramifications of steroid use. They even promised to get better now, so that they could kick the steroids once and for all. Live and learn......the key word being live!!
With the physical layout of the room coupled with the vast difference in our visit between Ty and Park it felt very much like I was on a pendulum yesterday swinging from one extreme to the other. Walking into the room, you walk about 30 feet to the back of the room to see Tyler. Turning left, you'll pass through an opening in the wall about 7 feet wide. Once passing through the opening you'll look right to see Parker. The boys are both at the back of a large room separated by about a six foot wall partition. This partition acted as the midpoint of the pendulum swing......and there was a big difference with what was happening on either side of the partition. Upon arriving into the room we could immediately see "action" happening around Tyler's incubator......this is never a good sign. Two nurses were working on him......one was "bagging him". As I looked to the monitors I could see he was in trouble. His O2 level was in the teens and, worse yet, his blood pressure had dropped into the 80's. The lead nurse was in the process of calling for the doctor as well as calling for the other nurses to assist. By the time we took the short 30 foot walk from the door to the incubator there were four people around Tyler's bed. As we pasted ourselves against the wall as to get out of the way I became fixated on his monitor. Nothing good was happening. His O2 and blood pressure refused to go up. If his blood pressure hits 60 they will have to begin chest compressions. Hearing that this happened over the phone the other night was bad enough, I did not want to experience it first hand......but I would......I don't think I could have walked away. Luckily I didn't have to endure my son's chest being compressed. His blood pressure went up, but his O2 levels remained in the teens. Within about 45 seconds the doctors were on the scene. I can't tell you exactly what they were all doing, but I know there were five or six people now around Tyler. One was bringing up an old x-ray chest film the doctor was asking for. I looked over at his O2 input monitor and realized he was at 98%........They were giving him almost pure oxygen and he still wasn't responding. After what seemed like forever (realistically it was about two minutes) his O2 hit 50.....still dangerously low....but I started to breath again.....I didn't realize I had been holding my breath.....I wasn't holding it the whole time......I would've passed out.......who knows how long I was holding it......it was a little weird. Slowly.....really slowly........ his O2 came back up to normal. Nice timing mom and dad!!! We spent about an hour with Tyler, just cupping him and trying to get him relaxed. We couldn't leave him to go see Parker yet.....not until he was really okay. They came in and took another x-ray, did some other things and started his feedings. After about an hour they had is O2 back down to about 60%, had him on his tummy and he seemed to be doing okay. It was time to hop on the pendulum and take the short ten foot ride, cross the wall partition and see how Parker was doing. Thankfully, we found the opposite. Parker had been doing great! After two days on the steroids, he was responding. There wasn't any miraculous change, just a few subtle ones that, when put together, made a difference. His O2 was down to 55%. He had been in the upper 60's and 70's. This was significant. They had adjusted down two of his oscillator settings (too much to explain) which was good as well. He had not seen a decrease in his settings for a very very long time. He was still swaddled. This was significant because when you're swaddled the skin temp probe becomes useless. This means that he isn't needing the above heat lamp, which means he is able to help keep his body temp regulated. He seems to really love being swaddled, so this was another good sign. We spent about a half an hour cupping Parker and talking with the nurse which is when we noticed the biggest difference. He hadn't desatted yet. Usually he will desat into the upper 50's and low 60's for a time before pulling himself back up. He hadn't gone below 85!!! He didn't really desat at all the rest of the time we were there!!! It was amazing to see him so stable for so long. The nurse said he had been that way for the entire day. He'd desat once in a while into the 70's, but never lower and never for very long. This was a monumental difference. We went back and forth between the boys, Heather pumped and still he remained stable. He remained that way for the entire rest of the time we were there. Right before leaving we spoke with another doctor who told us they would be keeping Parker on the steroids for the rest of the twelve day course. She warned us that sometimes they will relapse some after the course has finished. So be it......right now there is progress with Parker!!!.....something we haven't seen in a long time. The doctor also said they would be giving Tyler a medicine to try and help him. If it didn't work by this morning that they would be starting him on the steroids as well. I had to explain to both boys that they wouldn't be eligible for the Olympics in Beijing this year, but getting better was more important. They were both sad as they both thought they really had a chance for gold, but understood the ramifications of steroid use. They even promised to get better now, so that they could kick the steroids once and for all. Live and learn......the key word being live!!
Monday, July 21, 2008
Birthday Limbo
July 21 11:30 pm
Not much to report today. Tyler continues to desat pretty dramatically. They are finding a lot more congestion in his chest leading to a lot more secretions. This is probably causing the the severe desats. The plan is to let him ride it out for now. Parker is through his first day of steroids. We found out today we really won't be able to tell if they are working until tomorrow. He seems okay tonight....we'll know more tomorrow. Thought you may like to see a few more pics. Yesterday they swaddled Parker up like a little burrito which he seemed to like. You can't see much of him, but his cute little face. Also a pic of me cupping Tyler.
Sunday, July 20, 2008
Poker Chips
On those rare occasions that I go gambling, I always find myself thinking about the psychology of gambling. They give you free alcohol to loosen you (and buy you I mean your wallet) up and lower your inhibitions (and by inhibitions I mean your ability to rationally limit the amount you spend). The fact that the carpets are always very very colorful and busy to keep you stimulated. Then there's the rumor (who knows where I actually heard this one) that they pump in a higher concentration of oxygen to keep you awake so you'll gamble longer. All of these aside, the one I fixate on the most is the fact that you absolutely cannot gamble with cash......you have to change in your cash for chips in order to gamble. Why is that? It's the psychology of it. When asked what that green chip is worth, every person who gambles will tell you that's it's worth twenty five dollars. However, in the flow of gambling it is a green chip......a piece of plastic.....a representation of real money......it's much much easier to throw down a green chip than it would be to take a twenty dollar bill AND a five dollar bill and put it on the table......if it were the bills you were laying down it would be more real and therefore you'd be much less likely to do it. I remember playing craps one time, and at one point I stopped, put my beer down and just looked at what I had on the table. I had eighty-five dollars on the table at one time......I didn't even realize it......had it been in cash there is no way that I would have had that much on the table at any one time....(I know Tony and Gary are laughing at me right now.....but come on it's me....the low risk gambler). The point being that the casinos are smart.....they understand psychology....and are making a mint. Once again the question begs to be asked.....what the hell does any of this have to do with the twins??? It's the word NICU.....just like the poker chip....it represents something very real, but you can easily overlook exactly what it is........it's the fact that I've become comfortable in their part of the hospital.....it's the fact that I had forgotten that NICU stands for Neo-natal Intensive Care Unit.......Intensive Care.......whenever you're watching the news and they report on someones condition and they say "they are in critical condition" you know it's serious. "They are in ICU" means that they are in bad shape. I'd become so comfortable with things that I'd forgotten that they are in ICU. Nothing horrible has happened to prompt this realization ( I guess I should have started with that statement...sorry). It just became more apparent to me today as we were talking with the doctor about what to do with Parker. He hasn't had any "bad" days for awhile, but he also has not been progressing as well as he should. So today we had a long conversation with the doctor about what to do. Here's the situation.....no, there is too much....let me sum up ( that was a quote from the Princess Bride by the way.....I know Bob is probably the only one who got....we're weird like that.) Anyway, Parker and Tyler will be a month old tomorrow, and both are still on ventilators and relatively high O2.....Parker more so than Ty. So they are going to start him on a three day regimen of steroids. The problem is that there is still a tremendous amount of inflammation in his chest and therefore a lot of fluid which is prohibiting his O2 and CO2 exchange. The steroid is an excellent anti-inflammatory and will hopefully take down the inflammation allowing him to breath much better. If it shows sign of working they will keep him on it for nine more days (gradually decreasing the amount) which will hopefully allow them to extabate him. If they don't see any progress within the first three days they will cease and desist. We asked a ton of questions and received a lot of statistical information about side effects and came to the conclusion that the minuscule chance of side effects were worth the risk of a good positive outcome. Something has to change.....he has to make some progress. Tyler, after having a pretty good run, has leveled off and is not making any more progress either. There is still time for him to get back on track before taking this step, but he may not be too far behind.
The good news: After much discussion and deliberation about the steroids, our nurse, Mary, was very good about pointing out the following positive. While both boys are struggling in the lung department, they are both thriving in the feeding department. Both boys are now getting 22ml / feeding with 24 cal supplements. They both have fully functional digestive systems that show absolutely no signs of any problems. This is really really good. They are getting fabulous nutrition without the need of any IV's which is helping each of them grow and get stronger without any possibility of infection from an IV. Tyler is currently 2lb 10 oz while little bro Park is now at 2 lb 9 oz......only one ounce behind.....Parker wanted me to let everyone know that while he is an ounce behind he is a whopping 3/4 of an inch taller than Tyler, so technically Tyler is the little brother......we'll hash out this fight later:))
Needless to say there was no holding of either boy today. The birthday present we are hoping Heather gets tomorrow is that Parker has responded to the steroids......"we're going to pump....you up!!!!" a little Arnie S&L quote for some of you. I'll keep ya posted
The good news: After much discussion and deliberation about the steroids, our nurse, Mary, was very good about pointing out the following positive. While both boys are struggling in the lung department, they are both thriving in the feeding department. Both boys are now getting 22ml / feeding with 24 cal supplements. They both have fully functional digestive systems that show absolutely no signs of any problems. This is really really good. They are getting fabulous nutrition without the need of any IV's which is helping each of them grow and get stronger without any possibility of infection from an IV. Tyler is currently 2lb 10 oz while little bro Park is now at 2 lb 9 oz......only one ounce behind.....Parker wanted me to let everyone know that while he is an ounce behind he is a whopping 3/4 of an inch taller than Tyler, so technically Tyler is the little brother......we'll hash out this fight later:))
Needless to say there was no holding of either boy today. The birthday present we are hoping Heather gets tomorrow is that Parker has responded to the steroids......"we're going to pump....you up!!!!" a little Arnie S&L quote for some of you. I'll keep ya posted
Saturday, July 19, 2008
Flip-Flop
July 19 11pm
Having been born in Hawaii and having lived there until I was seven, I grew up with flip flops being a part of my every day life ( that is when my mother was successful enough to force me and my three older brothers to actual wear some sort of footwear). Jimmy Buffet is probably most responsible for main streaming the footwear style that never seems to go out of fashion completely......."blew out my flip flop" is always a crowd favorite to sing along to when listening to Margaritaville. I've even been faced with the resurgence with this fashion icons in my job. I've seen the most elaborate and jewel encrusted flip flops come and go as a female ensemble choice at many a Senior Ball. But today the term is more metaphoric than tangible. Today I reference the term in describing the progress of Ty and Park. Over the past five days Parker has seemed to emerge as the consistent one of the dynamic duo. While his progress is being measured in minute amounts ( and sometimes simply being measured as a lack of setbacks) it still is being measured and is still greatly looked upon with gratitude and hope. Tyler has seemed to taken little brother's place in the world of setbacks. His tenure of really good day to day progress has hit a speed bump. After his tragic scare last night, we found little Ty inconsistent today. He remains on his vent and is still keeping up with his feedings, but he was much more inconsistent with his vent today. Much larger and more frequent desatting was the theme of the day......so much so that, for the second day in a row, we were disappointed to find ourselves unable to hold him. It's only a speed bump, and he seems to be recovering pretty well from the harrowing experience.....it's just disappointing to not be able to cuddle the little guy. Maybe tomorrow. If not, then, Monday is Heather's birthday, so what better present could there be:)
Having been born in Hawaii and having lived there until I was seven, I grew up with flip flops being a part of my every day life ( that is when my mother was successful enough to force me and my three older brothers to actual wear some sort of footwear). Jimmy Buffet is probably most responsible for main streaming the footwear style that never seems to go out of fashion completely......."blew out my flip flop" is always a crowd favorite to sing along to when listening to Margaritaville. I've even been faced with the resurgence with this fashion icons in my job. I've seen the most elaborate and jewel encrusted flip flops come and go as a female ensemble choice at many a Senior Ball. But today the term is more metaphoric than tangible. Today I reference the term in describing the progress of Ty and Park. Over the past five days Parker has seemed to emerge as the consistent one of the dynamic duo. While his progress is being measured in minute amounts ( and sometimes simply being measured as a lack of setbacks) it still is being measured and is still greatly looked upon with gratitude and hope. Tyler has seemed to taken little brother's place in the world of setbacks. His tenure of really good day to day progress has hit a speed bump. After his tragic scare last night, we found little Ty inconsistent today. He remains on his vent and is still keeping up with his feedings, but he was much more inconsistent with his vent today. Much larger and more frequent desatting was the theme of the day......so much so that, for the second day in a row, we were disappointed to find ourselves unable to hold him. It's only a speed bump, and he seems to be recovering pretty well from the harrowing experience.....it's just disappointing to not be able to cuddle the little guy. Maybe tomorrow. If not, then, Monday is Heather's birthday, so what better present could there be:)
Friday, July 18, 2008
The Call
July 18 9:30 pm
No news is good news. This is the philosophy that we have adopted with regard to the boys and the hospital calling us. We have always figured that if something goes wrong (out of the ordinary typical things that the boys go through each day) that the hospital would call us and let us know. The other night the phone rang a little after ten and my heart rate immediately went up. Nobody calls past ten. It must be the hospital with bad news. My heart sank. It was a &^^%##$ telemarketer. Bullet dodged......until tonight. I was out running an errand, so poor Heather had to take the call. It was Tyler's doctor who wanted to aprise us of a situation. During a routine flipping (when the spin the baby 180 degrees so the head is now where the feet were and vis-a-versa) something happened and Tyler's breathing tube came out......he desatted down....way down.....they had to bag him, start chest compressions and call for immediate assistance from the doctor......help came.....he was re intubated (new breathing tube inserted) and the vent reattatched.....they are going to take an x-ray to confirm good placement of the tube, but those results won't be available for awhile. I came home right after the phone call and Heather filled me in. Needless to say when the doctor calls and uses the words chest compressions your heart rate goes up a bit.....okay, a hell of a lot! A short pause here: I don't know if I've relayed this next piece of info yet, but it's critical to the rest of the story. About two weeks ago, while we were in the NICU, a nurse approached us and asked if we lived in Roseville? Yes. Do you live on Maple Creek?.......uhhhhh....ya.....long story short, we come to find out this nurse, Mary, lives six houses down from us!!!! We have seen her out in the neighborhood several times and have become friends. She had said on multiple occassions, that if we ever had any questions or needed anything don't hesitate to ask. This was that time. I felt so fortunate that this outstanding, compassionate neighbor was open enough to make this offer not once, but multiple times. Even though it was after 9 pm we knocked on her door. Bless her little heart, she instantly saw the concern in our eyes and didn't hesitate to ask what was wrong. She was exactly what we needed. Nothing was going to make this all better......nothing was going to take away the fact that Tyler had just had to have chest compressions......nothing was going to bring back the sense of somewhat calm that we had been experiencing, but.....Mary helped to put it into enough perspective that we felt better about the whole thing. She was awesome. She let us know that, while this is not an ordinary occurance, it is not completely unheard of. The tube placement is so precise that even a movement of a centimeter can cause it to stop functioning.....it will still appear to be completely intact, but it has moved enough to stop working. The chest compressions.....it's NICU protocol to begin compressions if the heart rate goes below 60......yes going below 60 is still bad, but at least it didn't mean his heart had stopped. These situations sometimes happen, but when they do, protocols are in place and resolutions happen very very quickly. After they intubated him, they said his O2 levels came back very quickly......how much damage was done, hopefully none given the quick response.....let's hope there was none. I guess it just wasn't Tyler's day. We didn't get to hold him today either. He was desatting more than usual and the nurse said it would be better to wait until tomorrow. It just wasn't a good day for our little guy.
On a positive note (I really need to end on one) Parker had another pretty good day today. His feedings are up to 18mls, he's gaining weight and still seems to have some pretty good consistency in his vent controll. His CO2 levels are in really good shape, sitting right at 50. He has now had four pretty good to good days in a row!!!! My boys are battling.....their being little warriors......with some luck they'll continue the trend.......we're hoping so.
No news is good news. This is the philosophy that we have adopted with regard to the boys and the hospital calling us. We have always figured that if something goes wrong (out of the ordinary typical things that the boys go through each day) that the hospital would call us and let us know. The other night the phone rang a little after ten and my heart rate immediately went up. Nobody calls past ten. It must be the hospital with bad news. My heart sank. It was a &^^%##$ telemarketer. Bullet dodged......until tonight. I was out running an errand, so poor Heather had to take the call. It was Tyler's doctor who wanted to aprise us of a situation. During a routine flipping (when the spin the baby 180 degrees so the head is now where the feet were and vis-a-versa) something happened and Tyler's breathing tube came out......he desatted down....way down.....they had to bag him, start chest compressions and call for immediate assistance from the doctor......help came.....he was re intubated (new breathing tube inserted) and the vent reattatched.....they are going to take an x-ray to confirm good placement of the tube, but those results won't be available for awhile. I came home right after the phone call and Heather filled me in. Needless to say when the doctor calls and uses the words chest compressions your heart rate goes up a bit.....okay, a hell of a lot! A short pause here: I don't know if I've relayed this next piece of info yet, but it's critical to the rest of the story. About two weeks ago, while we were in the NICU, a nurse approached us and asked if we lived in Roseville? Yes. Do you live on Maple Creek?.......uhhhhh....ya.....long story short, we come to find out this nurse, Mary, lives six houses down from us!!!! We have seen her out in the neighborhood several times and have become friends. She had said on multiple occassions, that if we ever had any questions or needed anything don't hesitate to ask. This was that time. I felt so fortunate that this outstanding, compassionate neighbor was open enough to make this offer not once, but multiple times. Even though it was after 9 pm we knocked on her door. Bless her little heart, she instantly saw the concern in our eyes and didn't hesitate to ask what was wrong. She was exactly what we needed. Nothing was going to make this all better......nothing was going to take away the fact that Tyler had just had to have chest compressions......nothing was going to bring back the sense of somewhat calm that we had been experiencing, but.....Mary helped to put it into enough perspective that we felt better about the whole thing. She was awesome. She let us know that, while this is not an ordinary occurance, it is not completely unheard of. The tube placement is so precise that even a movement of a centimeter can cause it to stop functioning.....it will still appear to be completely intact, but it has moved enough to stop working. The chest compressions.....it's NICU protocol to begin compressions if the heart rate goes below 60......yes going below 60 is still bad, but at least it didn't mean his heart had stopped. These situations sometimes happen, but when they do, protocols are in place and resolutions happen very very quickly. After they intubated him, they said his O2 levels came back very quickly......how much damage was done, hopefully none given the quick response.....let's hope there was none. I guess it just wasn't Tyler's day. We didn't get to hold him today either. He was desatting more than usual and the nurse said it would be better to wait until tomorrow. It just wasn't a good day for our little guy.
On a positive note (I really need to end on one) Parker had another pretty good day today. His feedings are up to 18mls, he's gaining weight and still seems to have some pretty good consistency in his vent controll. His CO2 levels are in really good shape, sitting right at 50. He has now had four pretty good to good days in a row!!!! My boys are battling.....their being little warriors......with some luck they'll continue the trend.......we're hoping so.
Thursday, July 17, 2008
Daddy's Turn
July 17 10:45 pm
Heather's been through a lot. She's been a trooper the entire time and has just reaffirmed for me why I love her as much as I do. So it was only right that the first three days of cuddling Tyler went to her.....but today was my turn. One word.....magical:) I knew he was small.....I mean, I spend a lot of time with him every day......I cup his head and his feet and sing to him......but I really got the realistic perspective today when Kathy, the nurse, put him on my chest. You truly. only really understand how small he is when he's cuddled up on your chest and you are trying to hold him. My two hands engulf him.....he's swallowed up in them and gets lost in just a little bit of shirt......but I could feel every breath.....I was aware of every movement, no matter how minute.....I could sense every little change.....at one point his breathing changed......I'm not sure how to describe it, but I knew he needed to be suctioned (I'm really glad I was right, cuz I would have felt like a fool asking the nurse to suction him when he was totally fine!!) Ty and I spent an hour cuddling ( which would have lasted longer had my right arm not fallen completely asleep.......I really didn't want to adjust anything I was doing, as he was so completely at peace). We had some good man to man time:) The humor of the day.....well Tyler took care of that too. We were regaled with the story of his projectile bowel movement while being changed......yes it caused two nurses to scream out loud, causing the other nurse in the room to come running for medical emergent assistance....needless to say she arrived to encounter an unbelievably amusing moment rather than an emergency. He not only got his entire incubator changed, but two nurses also needed a cleaning......little stinker!!!!
Parker attempted the same thing with Heather while she was changing him, but mommy was quick on the draw with the open diaper and was able to control (or should I say contain) Parker's attempt to follow big brother's earlier performance. I had to bring in reinforcement cloths to assist her as the event continued for almost a minute. Needless to say, after cleansing his bowels, Parker seemed much much more at peace. This was a welcomed peace as our little Parker had a pretty up and down day. I wouldn't classify it as a bad day, but he definitely was not following the pattern of the prior three days. He desatted quite a bit today and with more extreme fluctuations than he has been. He has gained weight though....up from 2 lbs 3.6 oz yesterday to 2 lbs 5 oz today......keep going little buddy!!!! He is up to 18 ml feedings while Tyler is at 20. Grow little buddies grow!!!!
Heather's been through a lot. She's been a trooper the entire time and has just reaffirmed for me why I love her as much as I do. So it was only right that the first three days of cuddling Tyler went to her.....but today was my turn. One word.....magical:) I knew he was small.....I mean, I spend a lot of time with him every day......I cup his head and his feet and sing to him......but I really got the realistic perspective today when Kathy, the nurse, put him on my chest. You truly. only really understand how small he is when he's cuddled up on your chest and you are trying to hold him. My two hands engulf him.....he's swallowed up in them and gets lost in just a little bit of shirt......but I could feel every breath.....I was aware of every movement, no matter how minute.....I could sense every little change.....at one point his breathing changed......I'm not sure how to describe it, but I knew he needed to be suctioned (I'm really glad I was right, cuz I would have felt like a fool asking the nurse to suction him when he was totally fine!!) Ty and I spent an hour cuddling ( which would have lasted longer had my right arm not fallen completely asleep.......I really didn't want to adjust anything I was doing, as he was so completely at peace). We had some good man to man time:) The humor of the day.....well Tyler took care of that too. We were regaled with the story of his projectile bowel movement while being changed......yes it caused two nurses to scream out loud, causing the other nurse in the room to come running for medical emergent assistance....needless to say she arrived to encounter an unbelievably amusing moment rather than an emergency. He not only got his entire incubator changed, but two nurses also needed a cleaning......little stinker!!!!
Parker attempted the same thing with Heather while she was changing him, but mommy was quick on the draw with the open diaper and was able to control (or should I say contain) Parker's attempt to follow big brother's earlier performance. I had to bring in reinforcement cloths to assist her as the event continued for almost a minute. Needless to say, after cleansing his bowels, Parker seemed much much more at peace. This was a welcomed peace as our little Parker had a pretty up and down day. I wouldn't classify it as a bad day, but he definitely was not following the pattern of the prior three days. He desatted quite a bit today and with more extreme fluctuations than he has been. He has gained weight though....up from 2 lbs 3.6 oz yesterday to 2 lbs 5 oz today......keep going little buddy!!!! He is up to 18 ml feedings while Tyler is at 20. Grow little buddies grow!!!!
Read My Hat!!!
Heather made sure to record every step of my first time with Tyler:):) Here are the action shots. Check out the one where Tyler is holding my thumb......yeah it was that great:)
Hey Tyler, Is this how??
Today was Parker's day for the passy:):) So after asking Tyler how to use it he made good use of it:):) Second pic is him fully uncovered:)
Donor Club for Tyler & Parker
We've set up a Donor Club for Tyler and Parker through Blood Source. If you're interested in donating blood in their names, please use the number P921 - it is also cross referenced by their names should you forget the number. Don't worry about your blood type, the boys receive O-negative blood which is the universal blood type, but ANYONE who qualifies can donate in their names.
Thank you family, friends, associates and the many folks we've never met who are following our journey! Your prayers, well wishes and generous gifts have been appreciated!
Love,
Heather and John Thompson
Thank you family, friends, associates and the many folks we've never met who are following our journey! Your prayers, well wishes and generous gifts have been appreciated!
Love,
Heather and John Thompson
Wednesday, July 16, 2008
Cute Stats
Another reason we love our nurses. Allison, Parker's primary nurse had these made today when we came in. She not only knew we'd be asking, but made up these really cute cards to answer our questions:):)
Riddle Me This
One of the reasons we love our nurses. Monday when we went in, Tyler's primary nurse Monique gave us this little riddle card. We guessed the answers right away, but in case we didn't the answers were on the back.
How Big are They??
I had to post these pics:):) Yup, that's my wedding ring that you see around Parker's arm:):) Isn't that great??:)
How Many Licks
July 16 8 pm
So what's so special about the number three anyway?? Third time's the charm.....three strikes and you're out.....celebrities always die in threes......and then my personal favorite (which once again will date a lot of us) was the old wise owl in the tootsie pop commercial.......remember......he'd say how many licks does it take to get to the center of a tootsie pop.....then he'd start licking.....one....two....three.....CRACK.....showing his complete lack of self restraint and teaching the youth of America that it's okay to need something now!!!!.......he'd bite right into the damn thing.......So he's to blame for the current hyper speed gimme now world we live in!!!!....or was it Verucca Salt.....that bratty little girl in Willie Wonka and Chocolate Factory with her " Daddy I want an Ooompa Loompa and I want it NOW".....had to be her fault....but again I digress
So what's so special about the number 3??? Frankly I don't really care except for the fact that I'm celebrating the third good day in a row.....that's right today was the third day in a row that the boys have had good days!!!!! Tyler's new news is that his umbilical cord has fallen off and he is sporting his new "innee" belly button:) Mommy got to hold him again today, but only for a half an hour today as he was a little less inclined to stay up at a good level without desatting. Nonetheless I got a few great pics of him under mommy's shirt. (see below...no that's not a red hoodie he's sporting it's Heather's shirt he's snuggled under:)) Parker, not only had his feedings upped to 16 mls but he is also getting his PIC line taken out tonight!!!!! I'm very excited about getting one more foreign object extracted from the boys!! He had another good day of ventilation and found him self desatting less frequently and to a smaller degree. He has also been gaining some weight. How much weight?...check out the pics below to see:) Things are doing well for our little Parker. So all in all, I'm calling this three good days in a row.....we're on a roll!!!!!!
So what's so special about the number three anyway?? Third time's the charm.....three strikes and you're out.....celebrities always die in threes......and then my personal favorite (which once again will date a lot of us) was the old wise owl in the tootsie pop commercial.......remember......he'd say how many licks does it take to get to the center of a tootsie pop.....then he'd start licking.....one....two....three.....CRACK.....showing his complete lack of self restraint and teaching the youth of America that it's okay to need something now!!!!.......he'd bite right into the damn thing.......So he's to blame for the current hyper speed gimme now world we live in!!!!....or was it Verucca Salt.....that bratty little girl in Willie Wonka and Chocolate Factory with her " Daddy I want an Ooompa Loompa and I want it NOW".....had to be her fault....but again I digress
So what's so special about the number 3??? Frankly I don't really care except for the fact that I'm celebrating the third good day in a row.....that's right today was the third day in a row that the boys have had good days!!!!! Tyler's new news is that his umbilical cord has fallen off and he is sporting his new "innee" belly button:) Mommy got to hold him again today, but only for a half an hour today as he was a little less inclined to stay up at a good level without desatting. Nonetheless I got a few great pics of him under mommy's shirt. (see below...no that's not a red hoodie he's sporting it's Heather's shirt he's snuggled under:)) Parker, not only had his feedings upped to 16 mls but he is also getting his PIC line taken out tonight!!!!! I'm very excited about getting one more foreign object extracted from the boys!! He had another good day of ventilation and found him self desatting less frequently and to a smaller degree. He has also been gaining some weight. How much weight?...check out the pics below to see:) Things are doing well for our little Parker. So all in all, I'm calling this three good days in a row.....we're on a roll!!!!!!
Tuesday, July 15, 2008
Knock on wood
July 15 9:30 pm
Today was another very good day. Knock on wood....we've now got two days in a row! Parker had a good night and an even better day. He was more consistent today on his vent and desatted much less and to a much smaller degree than he has been.......I'm really hoping he may have turned a corner. He seemed so much more at peace today than he has. His rest was so much more uninterrupted. Longer periods without any fuss.....it really made me feel a whole lot better and will allow me to sleep that much better tonight as well (barring any bad news we hopefully will not get when we call in later.) Tyler continues to improve and found himself safely tucked in his mother's arms today for over an hour. Having to set almost perfectly still, Heather's arms must have been killing her, but you'd never know it from the smile pasted across her face the whole time. Yesterday, Tyler took a while to settle in. He really seemed to enjoy it, but you could tell that it was something new that he had to acclimate to it. Today however, he didn't miss a beat. He settled in "for a long winter's nap" ( I know it's the dead of summer and not Christmas, but it felt a lot like Christmas today!!!) I've never seen him look so content. It was very reassuring. Grandma Thompson's birthday was today and she celebrated with her two new grandsons. (pics below). I also posted some new pics that may help to give some new perspective on their size. Parker is now 2lbs 1 and 1/2 ounces and has had his feedings increased to 14 mls. Tyler is 2lbs 6 and 1/2 ounces and is chowing down on 18 mls / 3 hours. There is a nice cool breeze coming in the den window right now......and for now......things are looking pretty darn good. More later.
Today was another very good day. Knock on wood....we've now got two days in a row! Parker had a good night and an even better day. He was more consistent today on his vent and desatted much less and to a much smaller degree than he has been.......I'm really hoping he may have turned a corner. He seemed so much more at peace today than he has. His rest was so much more uninterrupted. Longer periods without any fuss.....it really made me feel a whole lot better and will allow me to sleep that much better tonight as well (barring any bad news we hopefully will not get when we call in later.) Tyler continues to improve and found himself safely tucked in his mother's arms today for over an hour. Having to set almost perfectly still, Heather's arms must have been killing her, but you'd never know it from the smile pasted across her face the whole time. Yesterday, Tyler took a while to settle in. He really seemed to enjoy it, but you could tell that it was something new that he had to acclimate to it. Today however, he didn't miss a beat. He settled in "for a long winter's nap" ( I know it's the dead of summer and not Christmas, but it felt a lot like Christmas today!!!) I've never seen him look so content. It was very reassuring. Grandma Thompson's birthday was today and she celebrated with her two new grandsons. (pics below). I also posted some new pics that may help to give some new perspective on their size. Parker is now 2lbs 1 and 1/2 ounces and has had his feedings increased to 14 mls. Tyler is 2lbs 6 and 1/2 ounces and is chowing down on 18 mls / 3 hours. There is a nice cool breeze coming in the den window right now......and for now......things are looking pretty darn good. More later.
New Pics
The first one is of me and Parker then my hand with Parkers little foot next to my pinky finger. Dad, Parker and Grandma Thompson. Finally me and Tyler who is on a Tigger Blanky!!!
Subscribe to:
Posts (Atom)
