Monday, August 18, 2008
Who the Hell Knows
August 18 10:30 pm
So the boys had their 8 week birthday today or 34 1/2 weeks in gestation age. In adjusted age they are negative 5 1/2 weeks old. The more we find out the more we come to understand that an adjusted age is important to keep in mind. For instance, on December 23rd they will be six months old.....however, you can't expect them to be behaving as a six month old would....they won't have developed to the point of six month old babies since their adjusted age will only be about three months.....so what's this all mean.....who the hell knows.....all I know is that both boys had a rough day. Over a week ago they adopted a long term strategy for Parker that was based around very small incremental adjustments.....this would allow him to grow and adapt at a slow productive level.....I was really supportive of this strategy and it seemed to be working for a little while.....not so much anymore.....or maybe it still is.....who the hell knows......all I know is that Parker had some serious desats today.....desats into the 30's with his oxygen requirement still hovering around 50%. This long term strategy and the patience we employed was supposed to be paying off some pretty good dividends by now......I'm not so sure......but then again I'm not so sure that the next step is any better.......you see the next step after getting extabated (the breathing tube being taken out of his throat) is for him to go onto CPAP......this would be the same CPAP that is giving Tyler fits. Ty has been really struggling with his CPAP for several days.....today we found some insight into why. Without too much technical explanation ( it's impossible to explain without seeing the device) the bottom line is that the specific device they are using has been damaging his poor little nose....or is it just really irritated....the words damaged septum have been used......is it temporary ouchies or is it permanent damage......who the hell knows......all I know is that his nose is raw, red and swollen. Today they changed out the current device and tried a brand new one......one that didn't require an additional device that was helping to irritate/damage his nose. This new device is the one we had heard of but never seen. You see the one they have been using is relatively new....and by relatively new I mean that ALL of the nurses are trying to get used to it and NONE of them have had positive things to say about it. So this brand new one is apparently the only one in use in the NICU right now and it's on Tyler. Heather dealt with it and said that it shows real promise, but that it didn't fit Tyler properly and therefore didn't work properly unless she physically held it in place. Of course this means that, when not being personally held in place, it is losing its efficiency......that translates into the need to increase his O2 requirement to compensate for its inefficiency....which then makes it appear that he is needing more O2 than he actually does.....which of course delays the decision to get him off of the damn thing sooner.......is this an accurate description of the situation or just an overly protective father's perception.....who the hell knows.....all I know is that my son continues to be miserable......and this is the situation we are hoping Parker graduates to once extabated......are we having fun yet????
Perspective: I think it's time for some......Tyler broke the four pound mark today!!!! He just tipped over the scale of four pounds. His overall appearance is beginning to take on that of being a little chubby in places. Parker actually has himself a little double chin.....a far cry from the 1 pound 6 ounce wrinkly little guy that graced us with his presence eight weeks ago:):) Other than Parker's hernia we have still been able to avoid any major surgical needs so far ( knock on wood). Both boys have come a long way and are hopefully on the right track to becoming the Thompson twin terrors that will be attacking me on the living room floor in epic wrestling matches in the future. I'm squinting my eyes.......I'm looking hard......continuing to focus on that glass to see that it is half full......if anybody takes a drink to tip it into the half empty state I'm gonna punch you in the eye!!!!
So the boys had their 8 week birthday today or 34 1/2 weeks in gestation age. In adjusted age they are negative 5 1/2 weeks old. The more we find out the more we come to understand that an adjusted age is important to keep in mind. For instance, on December 23rd they will be six months old.....however, you can't expect them to be behaving as a six month old would....they won't have developed to the point of six month old babies since their adjusted age will only be about three months.....so what's this all mean.....who the hell knows.....all I know is that both boys had a rough day. Over a week ago they adopted a long term strategy for Parker that was based around very small incremental adjustments.....this would allow him to grow and adapt at a slow productive level.....I was really supportive of this strategy and it seemed to be working for a little while.....not so much anymore.....or maybe it still is.....who the hell knows......all I know is that Parker had some serious desats today.....desats into the 30's with his oxygen requirement still hovering around 50%. This long term strategy and the patience we employed was supposed to be paying off some pretty good dividends by now......I'm not so sure......but then again I'm not so sure that the next step is any better.......you see the next step after getting extabated (the breathing tube being taken out of his throat) is for him to go onto CPAP......this would be the same CPAP that is giving Tyler fits. Ty has been really struggling with his CPAP for several days.....today we found some insight into why. Without too much technical explanation ( it's impossible to explain without seeing the device) the bottom line is that the specific device they are using has been damaging his poor little nose....or is it just really irritated....the words damaged septum have been used......is it temporary ouchies or is it permanent damage......who the hell knows......all I know is that his nose is raw, red and swollen. Today they changed out the current device and tried a brand new one......one that didn't require an additional device that was helping to irritate/damage his nose. This new device is the one we had heard of but never seen. You see the one they have been using is relatively new....and by relatively new I mean that ALL of the nurses are trying to get used to it and NONE of them have had positive things to say about it. So this brand new one is apparently the only one in use in the NICU right now and it's on Tyler. Heather dealt with it and said that it shows real promise, but that it didn't fit Tyler properly and therefore didn't work properly unless she physically held it in place. Of course this means that, when not being personally held in place, it is losing its efficiency......that translates into the need to increase his O2 requirement to compensate for its inefficiency....which then makes it appear that he is needing more O2 than he actually does.....which of course delays the decision to get him off of the damn thing sooner.......is this an accurate description of the situation or just an overly protective father's perception.....who the hell knows.....all I know is that my son continues to be miserable......and this is the situation we are hoping Parker graduates to once extabated......are we having fun yet????
Perspective: I think it's time for some......Tyler broke the four pound mark today!!!! He just tipped over the scale of four pounds. His overall appearance is beginning to take on that of being a little chubby in places. Parker actually has himself a little double chin.....a far cry from the 1 pound 6 ounce wrinkly little guy that graced us with his presence eight weeks ago:):) Other than Parker's hernia we have still been able to avoid any major surgical needs so far ( knock on wood). Both boys have come a long way and are hopefully on the right track to becoming the Thompson twin terrors that will be attacking me on the living room floor in epic wrestling matches in the future. I'm squinting my eyes.......I'm looking hard......continuing to focus on that glass to see that it is half full......if anybody takes a drink to tip it into the half empty state I'm gonna punch you in the eye!!!!
Sunday, August 17, 2008
Calm vs Dark
August 17 8:45 pm
Is it the Calm before the Storm or is the Darkness Before the Dawn. I know what I hope it is, but you never know what's coming next in the NICU. You see, there just isn't much to report on today, nor has there been for a couple of days. The boys are sort of in a holding pattern. Tyler's feeds went up to 30 from 28. Parker's vent was turned down from 20 to 18, but nothing else really significant is happening. Both boys continue to battle. They have their typical daily struggles with keeping their oxygen up for any length of time. They will desat periodically.....usually bringing themselves out of it, but occasionally needing some nurses assistance. I know (and by know, I mean I've been told) that there will be a time when they are just feeding and growing......I get that.......they will need time to just grow more and develop before they come home......but that is after they have gotten off of CPAP....needless to say getting off of the breathing tube......so I don't know if right now is the dark before the beginning of the dawn and the light at the end of the tunnel or if it is the calm before the storm......the lull before we get some bad news.......only time and all my patience will tell. Don't get me wrong....I am thankful that there aren't any major relapses right now....especially seeing some of the other sick babies, I am often thankful that they seem to be doing pretty well......it's just difficult to see them constantly struggle....Parker with a tube down his throat that he seems to be constantly choking on and Tyler with the CPAP device which drives him crazy and hurts his little nose. I know some day this will all be a faded memory......but for now.........well, I will look deeper into the reserves of patience......there had better be some more left in that tank:):):) Sorry no pics today.......I just didn't really take any.
Is it the Calm before the Storm or is the Darkness Before the Dawn. I know what I hope it is, but you never know what's coming next in the NICU. You see, there just isn't much to report on today, nor has there been for a couple of days. The boys are sort of in a holding pattern. Tyler's feeds went up to 30 from 28. Parker's vent was turned down from 20 to 18, but nothing else really significant is happening. Both boys continue to battle. They have their typical daily struggles with keeping their oxygen up for any length of time. They will desat periodically.....usually bringing themselves out of it, but occasionally needing some nurses assistance. I know (and by know, I mean I've been told) that there will be a time when they are just feeding and growing......I get that.......they will need time to just grow more and develop before they come home......but that is after they have gotten off of CPAP....needless to say getting off of the breathing tube......so I don't know if right now is the dark before the beginning of the dawn and the light at the end of the tunnel or if it is the calm before the storm......the lull before we get some bad news.......only time and all my patience will tell. Don't get me wrong....I am thankful that there aren't any major relapses right now....especially seeing some of the other sick babies, I am often thankful that they seem to be doing pretty well......it's just difficult to see them constantly struggle....Parker with a tube down his throat that he seems to be constantly choking on and Tyler with the CPAP device which drives him crazy and hurts his little nose. I know some day this will all be a faded memory......but for now.........well, I will look deeper into the reserves of patience......there had better be some more left in that tank:):):) Sorry no pics today.......I just didn't really take any.
A picture tells a thousand words
August 16 11:45 pm
Let's hope a picture is worth a thousand words since this blog will be very short. Not much change today at all with either boy. Mostly a day of just battling. Parker is battling the breathing tube.....he continues to pull on it and be completely annoyed by its presence while Tyler constantly pulls his CPAP out of his nose causing him to desat. A lot more work for the nurse to monitor Tyler on CPAP as he hates everything about it and simply can't stop battling against it. No major problems today, so we are counting that as a blessing. Going to bed now:):) Enjoy the pics
Let's hope a picture is worth a thousand words since this blog will be very short. Not much change today at all with either boy. Mostly a day of just battling. Parker is battling the breathing tube.....he continues to pull on it and be completely annoyed by its presence while Tyler constantly pulls his CPAP out of his nose causing him to desat. A lot more work for the nurse to monitor Tyler on CPAP as he hates everything about it and simply can't stop battling against it. No major problems today, so we are counting that as a blessing. Going to bed now:):) Enjoy the pics
Parker and Mommy
Parker getting some good cuddle time
Here's a good pic showing his breathing tube as well as his feeding tube which is currently going through his nose since he keeps pulling it out of his mouthSaturday, August 16, 2008
Pics of Tyler
Even though I'm technically publishing pics of naked bodies, I thought I'd post this one of Ty since it's the most unobstructed picture of his face. When being weighed they disconnected his CPAP giving us a pretty good look at his face.....Although there is still something over his nose to help with the CPAP that still doesn't allow us to see him completely. 
This was just a cute pic of Ty and me holding hands:):)
Friday, August 15, 2008
Parker's Negotiation
Hey nurse, whatta ya say we lose the breathing tube huh??
Come on!!! I got five bucks that says we do a deal:)
Here's my cute pouty face....does that get me anywhere?
How's about I show off my cute dump truck outfit??
Come on!!! I got five bucks that says we do a deal:)
Here's my cute pouty face....does that get me anywhere?
How's about I show off my cute dump truck outfit??
Ohhhhh, the docs are around....okay we'll talk more later
Let the air out of the tires
August 15 11pm
Most of you have heard the story......for those that haven't, let me summarize it: A large truck passes under a low lying overpass, the driver doesn't pay close enough attention to the posted maximum height limitation and the truck gets stuck. It's too large to fit under the overpass and has wedged itself under the bridge......as the police officers, fire department and multiple other people stand around trying to figure out how to solve the problem a little boy speaks up and says "why don't you just let the air out of the tires?" So, that may not be the exact rendition of the story, but you get the point. Sometimes we get lost in the details and miss the most simplistic solution. This pretty much represents the rough evening and early morning Parker had. As Heather pointed out in last night's blog Parker's O2 requirement had risen pretty dramatically. He was needing as much as 80% oxygen and was also having trouble expelling the CO2 from his lungs. I called early this morning to check on his progress. The nurse said that it hadn't gotten much better over night and that the docs had ordered a panel of blood work and cultures to be done to determine if he was getting another infection. The docs were "rounding" in a while and she would try to get more info on what their plan of attack would be as Parker was heading down a pretty dark tunnel pretty quickly. Well, our evening visit brought much better news......you see the day nurse simply let the air out of the tires......during a morning assessment she noticed that his breathing tube was loose.......as she checked it more carefully she noticed the tape that secures it had become too moist and loosened its grip on the tube enough that it had come out ever so slightly......once she adjusted its placement and re taped it.....presto Chango.....Parker began to get better.......something so simple as the placement and securement of his tube had caused a lot of problems for quite some time while eluding the prognosis of the docs. Now his needs are still a bit high, but O2 needs in the low fifties is much better than in the high seventies........the roller coaster chugs on. The other piece of good news of the day was that both boys had positive reports on their eye exams. Neither of them showed any signs of abnormal growth.......we'll take that little gem of good news and live on it for awhile:):)
Most of you have heard the story......for those that haven't, let me summarize it: A large truck passes under a low lying overpass, the driver doesn't pay close enough attention to the posted maximum height limitation and the truck gets stuck. It's too large to fit under the overpass and has wedged itself under the bridge......as the police officers, fire department and multiple other people stand around trying to figure out how to solve the problem a little boy speaks up and says "why don't you just let the air out of the tires?" So, that may not be the exact rendition of the story, but you get the point. Sometimes we get lost in the details and miss the most simplistic solution. This pretty much represents the rough evening and early morning Parker had. As Heather pointed out in last night's blog Parker's O2 requirement had risen pretty dramatically. He was needing as much as 80% oxygen and was also having trouble expelling the CO2 from his lungs. I called early this morning to check on his progress. The nurse said that it hadn't gotten much better over night and that the docs had ordered a panel of blood work and cultures to be done to determine if he was getting another infection. The docs were "rounding" in a while and she would try to get more info on what their plan of attack would be as Parker was heading down a pretty dark tunnel pretty quickly. Well, our evening visit brought much better news......you see the day nurse simply let the air out of the tires......during a morning assessment she noticed that his breathing tube was loose.......as she checked it more carefully she noticed the tape that secures it had become too moist and loosened its grip on the tube enough that it had come out ever so slightly......once she adjusted its placement and re taped it.....presto Chango.....Parker began to get better.......something so simple as the placement and securement of his tube had caused a lot of problems for quite some time while eluding the prognosis of the docs. Now his needs are still a bit high, but O2 needs in the low fifties is much better than in the high seventies........the roller coaster chugs on. The other piece of good news of the day was that both boys had positive reports on their eye exams. Neither of them showed any signs of abnormal growth.......we'll take that little gem of good news and live on it for awhile:):)
Thursday, August 14, 2008
Quickie
So if mom is blogging again, we know it'll be quick...but this one will be VERY quick! Sorry folks...
So, I'm not sure if it's recovering from a terrible eye exam or if Parker is just coming down with something. Today did not reflect a healthy Parker. His CO2 level from the morning blood draw came back at 71% and re-draw at noon was at 65% (not good). When I got to the hospital today Parker's O2 was in the 70's but down to 56% by the time I left. His vent pressures that were turned down yesterday were turned back up today. I just called to get an update and his O2 is up to 80% - eeeek! The nurse gave him an albuterol treatment which should help open up his lungs, so I'm hoping she can turn down his oxygen level quickly. The nurses had to suction him a lot due to his high level of secretions - at least he can breathe better after this is done. Poor little guy! I could feel him breathing hard today - just not a good thing. I hope tomorrow brings better stats.
Tyler was back to normal today - sitting at an O2 of around 45%. His weight is up to 3.13 ounces and we can ALMOST see a fat roll - ha ha! I was able to hold my little cutie for an hour and he seemed very content - as was mommy! He continues to hate the CPAP, but seems to do well as long as he has his passy. Rut ro...so young for an addiction!
I took a few pics today but I think my hand was shaky or something because a lot of them turned out fuzzy. These are the ones I salvaged - still cute (in my opinion)! ;o)
So, I'm not sure if it's recovering from a terrible eye exam or if Parker is just coming down with something. Today did not reflect a healthy Parker. His CO2 level from the morning blood draw came back at 71% and re-draw at noon was at 65% (not good). When I got to the hospital today Parker's O2 was in the 70's but down to 56% by the time I left. His vent pressures that were turned down yesterday were turned back up today. I just called to get an update and his O2 is up to 80% - eeeek! The nurse gave him an albuterol treatment which should help open up his lungs, so I'm hoping she can turn down his oxygen level quickly. The nurses had to suction him a lot due to his high level of secretions - at least he can breathe better after this is done. Poor little guy! I could feel him breathing hard today - just not a good thing. I hope tomorrow brings better stats.
Tyler was back to normal today - sitting at an O2 of around 45%. His weight is up to 3.13 ounces and we can ALMOST see a fat roll - ha ha! I was able to hold my little cutie for an hour and he seemed very content - as was mommy! He continues to hate the CPAP, but seems to do well as long as he has his passy. Rut ro...so young for an addiction!
I took a few pics today but I think my hand was shaky or something because a lot of them turned out fuzzy. These are the ones I salvaged - still cute (in my opinion)! ;o)
Wednesday, August 13, 2008
Ignorance is Bliss
August 13 9pm
There is the most adorable picture of Heather when she was about three years old that, in a round about way, sums up today's visit with the boys......okay....the term round about is used here pretty liberally.......it's actually the beginning of a tangent.....but come on......would you really have it any other way???? The picture: she's about three years old.....as blond as blond can be.......sitting on top of a picnic table in a park......she has on the cutest little homemade dress.....her hair is tossled and her face a bit dirty.....obviously the results of the kind of carefree play and child like magic that we all constantly strive to recapture as adults.......her smile is huge due to the utter and complete joy that she is feeling which is being created by the fact that she has her hand wrapped around the ultimate prize.......a hot dog.......the all American symbol of childhood.......there is no bun, no ketchup or mustard........there isn't even a napkin or plate to be found......just the pure and complete joy of the dog, in her hands......unobstructed by peripheral condiments or politically correct bread products.....it's just her and the dog.......and she literally couldn't be happier in that moment. The hot dog. Every red blooded American has feasted on hundreds of these in their lives......most of which were consumed prior to reaching the high school age.....see that's where this tangent is headed. I used to enjoy a good dog just as much as any other freckled face little boy. It is the quintessential staple of every cookout. I was an ordinary hot dog eating guy.......until Upton Sinclair ruined it for me forever. You see, like a lot of us, I had to read The Jungle by Upton Sinclair in high school. I've never been able to enjoy a hot dog the same way since. If you haven't read it.....don't.....savor these precious times that you still have to enjoy one of natures most simplistic yet delectable foods. In short, the book exposes, amongst many other things, the contents of a hot dog. I was fine living in my own ignorant world. It tasted good, it was easy to cook (by the way, did anyone else cook them by boiling them???? Of course at a cook out there is the grill, but most of my hot dog memories consist of them being boiled on the stove which of course allowed you to know when they were done by the big huge split in the side of them.....). The hot dog was a great staple of the diet. Knowing what is in them and how they are made has pretty much ruined them for me. I really enjoyed that aspect of ignorance and youth. That was until some sadistic teacher pried my eyes open.....all in the sake of education.......damn that education!!!! Well, I am happy to report that I learned my lesson and know what I don't want to know. Here's where the boys come in......I know.....I know....finally......but come on.....I've been away from the blog for two days and had to re enter in random fashion. Today we found the boys completely spent....totally exhausted and just wanting to sleep. You see today was their eye exam. This is a critical exam. With the boys requiring oxygen levels that have been as high as 90% at times there is risk of eye damage. Early on, we were under the impression that this damage would be permanent....which caused us a lot of stress. We were pleased to find out that even if there is some negative effects that they can fix a lot of them with laser surgery. They can actually come in and do laser surgery before they leave the NICU and solve a lot of the side effect damage that has been developing. Needless to say we were happy to hear this. To check for this damage......ahhhhh.....here in lies the title of this blog "Ignorance is Bliss". We have gotten somewhat cursory descriptions of the examination process.......and cursory is where we are going to stop that educational train in its tracks.....you see Heather and I have been "those parents".....the ones that ask a thousand questions and keep probing for more info......we need to know as much as we can.......most of the time........I can honestly say I don't ever want to know more and certainly don't ever want to witness this particular portion of their care. I completely respect the need for it and definitely want the boys to be the beneficiaries of this fantastic medical advancement......but I don't need to know the details of this particular diagnosis. I know that it requires their little eyes to be forced open and held open by some device and that there is enough agitation and trauma in the process that they are spent......completely spent for the next 24 hours. How they get to that point is not something I care to investigate further or will ever witness......I've seen them suffer in other ways that i should not have.....this is one necessary evil that I will choose not to be part of. I will comfort, soothe and console in the aftermath. That pretty much sums up their day. Both boys continue to make subtle advancements and continue to avoid any major pitfalls. Tomorrow we will get the results of the eye exams.....we have high hopes for good results. The boys have survived another battle, have survived another day, and are that much stronger for it.
There is the most adorable picture of Heather when she was about three years old that, in a round about way, sums up today's visit with the boys......okay....the term round about is used here pretty liberally.......it's actually the beginning of a tangent.....but come on......would you really have it any other way???? The picture: she's about three years old.....as blond as blond can be.......sitting on top of a picnic table in a park......she has on the cutest little homemade dress.....her hair is tossled and her face a bit dirty.....obviously the results of the kind of carefree play and child like magic that we all constantly strive to recapture as adults.......her smile is huge due to the utter and complete joy that she is feeling which is being created by the fact that she has her hand wrapped around the ultimate prize.......a hot dog.......the all American symbol of childhood.......there is no bun, no ketchup or mustard........there isn't even a napkin or plate to be found......just the pure and complete joy of the dog, in her hands......unobstructed by peripheral condiments or politically correct bread products.....it's just her and the dog.......and she literally couldn't be happier in that moment. The hot dog. Every red blooded American has feasted on hundreds of these in their lives......most of which were consumed prior to reaching the high school age.....see that's where this tangent is headed. I used to enjoy a good dog just as much as any other freckled face little boy. It is the quintessential staple of every cookout. I was an ordinary hot dog eating guy.......until Upton Sinclair ruined it for me forever. You see, like a lot of us, I had to read The Jungle by Upton Sinclair in high school. I've never been able to enjoy a hot dog the same way since. If you haven't read it.....don't.....savor these precious times that you still have to enjoy one of natures most simplistic yet delectable foods. In short, the book exposes, amongst many other things, the contents of a hot dog. I was fine living in my own ignorant world. It tasted good, it was easy to cook (by the way, did anyone else cook them by boiling them???? Of course at a cook out there is the grill, but most of my hot dog memories consist of them being boiled on the stove which of course allowed you to know when they were done by the big huge split in the side of them.....). The hot dog was a great staple of the diet. Knowing what is in them and how they are made has pretty much ruined them for me. I really enjoyed that aspect of ignorance and youth. That was until some sadistic teacher pried my eyes open.....all in the sake of education.......damn that education!!!! Well, I am happy to report that I learned my lesson and know what I don't want to know. Here's where the boys come in......I know.....I know....finally......but come on.....I've been away from the blog for two days and had to re enter in random fashion. Today we found the boys completely spent....totally exhausted and just wanting to sleep. You see today was their eye exam. This is a critical exam. With the boys requiring oxygen levels that have been as high as 90% at times there is risk of eye damage. Early on, we were under the impression that this damage would be permanent....which caused us a lot of stress. We were pleased to find out that even if there is some negative effects that they can fix a lot of them with laser surgery. They can actually come in and do laser surgery before they leave the NICU and solve a lot of the side effect damage that has been developing. Needless to say we were happy to hear this. To check for this damage......ahhhhh.....here in lies the title of this blog "Ignorance is Bliss". We have gotten somewhat cursory descriptions of the examination process.......and cursory is where we are going to stop that educational train in its tracks.....you see Heather and I have been "those parents".....the ones that ask a thousand questions and keep probing for more info......we need to know as much as we can.......most of the time........I can honestly say I don't ever want to know more and certainly don't ever want to witness this particular portion of their care. I completely respect the need for it and definitely want the boys to be the beneficiaries of this fantastic medical advancement......but I don't need to know the details of this particular diagnosis. I know that it requires their little eyes to be forced open and held open by some device and that there is enough agitation and trauma in the process that they are spent......completely spent for the next 24 hours. How they get to that point is not something I care to investigate further or will ever witness......I've seen them suffer in other ways that i should not have.....this is one necessary evil that I will choose not to be part of. I will comfort, soothe and console in the aftermath. That pretty much sums up their day. Both boys continue to make subtle advancements and continue to avoid any major pitfalls. Tomorrow we will get the results of the eye exams.....we have high hopes for good results. The boys have survived another battle, have survived another day, and are that much stronger for it.
Ty's shirt says it all
It was so appropriate that, on the day that both boys were just completely whooped that Tyler would have this shirt on:)Tuesday, August 12, 2008
A Funny Thing Happened in the NICU
So this was funny...to me at least! I (Heather) go to the NICU today and do as I normally do: walk in and scope out the nurse (who's on today/tonight?), find the nearest antiseptic foam and "scrub in", go to either Parker or Tyler's bedsides and research the monitor and all monitoring devices to view changes/stats, and then finally look into the isolette/incubator at the sweet little bundle that lies below. I know...it may not make sense to you, but for John and me it's become habit. Today was no different except I was distracted by Parker's nurse who came by as I was looking at Tyler - all bundled up and looking sweet. She was setting up for Parker's next assessment: changing diaper, taking temperature, measuring belly, suctioning, and lastly feeding. Well, these assessments only come once every three hours and I wasn't going to miss Parker's, especially since I GET to change his diaper and take his temperature. These are the ONLY things besides occasionally holding and providing mother's milk that I can do for the boys. I quickly left Tyler and joined the nurse for Parker's assessment. As I was changing his diaper the nurse told me to leave his diaper open so she could measure his belly. Well, the nurse waited a LITTLE too long to measure and Mr. Parker peed all over the place! Of course I think these moments are wonderful! ;o) The nurse quickly finished and I took him out of his newly wet but cute doggy "woof" outfit and carefully decided on his cute "my dog" outfit. After cuddling Parker beside for a while, it was brother's turn. I walked over to Tyler's isolette for his assessments and un-swaddled him for a diaper change. As his outfit for the day became exposed I just had to laugh! Tyler's "my dog" outfit peered out from the blankie. Yes, the boys were dressed alike today - and not on purpose. Without knowledge, I picked the SAME outfit for Parker - too stinkin' funny! I think I'm pretty easily amused these days, aren't I?
Report for the day: Parker had two small changes - his bpm rate down to 24 (from 26) and his feedings up to 25 mls. He desats periodically, but tends to bring himself out of it without assistance. His O2 level has been around 48-50% (not bad, but we'd like to see in 30's). Tyler continues to hate the CPAP but was tolerating it today. His desats are usually caused by the cannula coming out of his nose or from air escaping through his mouth (which is why we like the pacifier - it blocks the air in his mouth and forces it back down to the lungs).
On another note: Tyler has a new roommate today - a baby that was once in the Lion room with Parker. The parents came in and requested to talk to a doctor about why their baby was moved again (I guess the baby has visited many sections of the "zoo") and why he was put back on CPAP. A doctor came in and explained that the baby was just working too hard so the decision was made to take him off his cannula and put him back on CPAP. This baby is 36 weeks gestation (born at 29 weeks). As I listened to this conversation, I realized that this journey John and I are on is the same for many of the NICU parents. Even a 36-week baby is taking steps back, not just our 34-week old (will be on Thursday) miracles. I also realized that we still have a long road ahead. Patience, strength and good old fashioned faith is required for this journey. I hope I packed everything I'll need!
Report for the day: Parker had two small changes - his bpm rate down to 24 (from 26) and his feedings up to 25 mls. He desats periodically, but tends to bring himself out of it without assistance. His O2 level has been around 48-50% (not bad, but we'd like to see in 30's). Tyler continues to hate the CPAP but was tolerating it today. His desats are usually caused by the cannula coming out of his nose or from air escaping through his mouth (which is why we like the pacifier - it blocks the air in his mouth and forces it back down to the lungs).
On another note: Tyler has a new roommate today - a baby that was once in the Lion room with Parker. The parents came in and requested to talk to a doctor about why their baby was moved again (I guess the baby has visited many sections of the "zoo") and why he was put back on CPAP. A doctor came in and explained that the baby was just working too hard so the decision was made to take him off his cannula and put him back on CPAP. This baby is 36 weeks gestation (born at 29 weeks). As I listened to this conversation, I realized that this journey John and I are on is the same for many of the NICU parents. Even a 36-week baby is taking steps back, not just our 34-week old (will be on Thursday) miracles. I also realized that we still have a long road ahead. Patience, strength and good old fashioned faith is required for this journey. I hope I packed everything I'll need!
My Dog Pics
Tyler: "My passy is like a fine wine!"
"Actually,
I could use
some wine
right now!"
Parker: "I didn't copy brother, he copied ME!"
Monday, August 11, 2008
Two Steps Forward...
Guest Blogger: Yes, the wife had to take over tonight because daddy is just tooo tuckered to blog. So John had to work today and is just exhausted...what the? Okay, so I am focusing on what I like to see...the pictures! This ensures little text and a short, sweet and to the point message.
There was a BIG change today, thus the "two steps forward...". Tyler has taken a lot of steps forward lately, so I guess it was his turn to take a step back. I received a call this afternoon from Tyler's nurse "warning" me that when we came in today we'd see Tyler back on the CPAP. Ugh. Not that pesky CPAP! This device drove BOTH boys absolutely bonkers - and us too. Because Tyler's heart rate was still hitting over 200 the doctor thought it best to not push his breathing anymore and let the machine take over for a while. These CPAPs are new to the hospital and the nurses so our visit today consisted of a lot of "fidgeting" with the device. John and I gave our many opinions to "help" the nurse (ha ha...) and by the time we left...well, Tyler was still wiggling out of the cannula. It ended up in his mouth multiple times today! His number on the monitor would desat...down....down...the bells would ring...we'd go over to the isolette and what'd we see? Tyler sucking on his cannula! "That's supposed to go in your nose, not your mouth silly!" Back to fighting him as the cannula is driven up his nose and that crazy, absurd hat is again adjusted! We were happy to hear during our phone call with Tyler's nurse tonight that Tyler was getting used to the CPAP again and was doing well. You think the nurses just say that to prevent parents from worrying? Hum...
Parker had a good day with very little change. The plan for him is "status quo" with little changes to the vent each day. So far he is handling all of them - and that's a GOOD THING! I'm glad the boys are understanding that they need to take turns stepping back. There are some cute pics of Parker wide awake! In fact he was so observant he was freaking John out - "Why is Parker so awake and staring like that?" The good thing is that Parker is tracking really well with his eyes. I will periodically talk to him and he will follow my voice with his eyes...good sign.
Well, I think that's the sum of the day. I will be spending solo time with the boys tomorrow. Yes, John's work schedule has him booked ALL day and night! What the....? I look forward to a mommy bonding day - and then I have my postpartum follow tomorrow night. Can you believe UCD makes appointments at night? That place never sleeps! Let's hope my hypertension has waned...ha ha!
There was a BIG change today, thus the "two steps forward...". Tyler has taken a lot of steps forward lately, so I guess it was his turn to take a step back. I received a call this afternoon from Tyler's nurse "warning" me that when we came in today we'd see Tyler back on the CPAP. Ugh. Not that pesky CPAP! This device drove BOTH boys absolutely bonkers - and us too. Because Tyler's heart rate was still hitting over 200 the doctor thought it best to not push his breathing anymore and let the machine take over for a while. These CPAPs are new to the hospital and the nurses so our visit today consisted of a lot of "fidgeting" with the device. John and I gave our many opinions to "help" the nurse (ha ha...) and by the time we left...well, Tyler was still wiggling out of the cannula. It ended up in his mouth multiple times today! His number on the monitor would desat...down....down...the bells would ring...we'd go over to the isolette and what'd we see? Tyler sucking on his cannula! "That's supposed to go in your nose, not your mouth silly!" Back to fighting him as the cannula is driven up his nose and that crazy, absurd hat is again adjusted! We were happy to hear during our phone call with Tyler's nurse tonight that Tyler was getting used to the CPAP again and was doing well. You think the nurses just say that to prevent parents from worrying? Hum...
Parker had a good day with very little change. The plan for him is "status quo" with little changes to the vent each day. So far he is handling all of them - and that's a GOOD THING! I'm glad the boys are understanding that they need to take turns stepping back. There are some cute pics of Parker wide awake! In fact he was so observant he was freaking John out - "Why is Parker so awake and staring like that?" The good thing is that Parker is tracking really well with his eyes. I will periodically talk to him and he will follow my voice with his eyes...good sign.
Well, I think that's the sum of the day. I will be spending solo time with the boys tomorrow. Yes, John's work schedule has him booked ALL day and night! What the....? I look forward to a mommy bonding day - and then I have my postpartum follow tomorrow night. Can you believe UCD makes appointments at night? That place never sleeps! Let's hope my hypertension has waned...ha ha!
Tyler's 2nd CPAP Journey
Even the "big dog" outfit didn't make poor Tyler feel better about his new breathing apparatus!
Little eyes open...
saying "help me!"
Daddy Time With Parker
It's okay buddy...daddy is here!
Hello...
anybody out there?
Think I've had too much caffeine?
Sunday, August 10, 2008
Time
August 10 11 pm
Time is a funny thing. It is a constant, never changing dynamic that every single person in the world experiences and lives with in the exact same scientific matter no matter the culture or continent. It has been called the fourth dimension. A second is a second....an hour an hour....and a day a day. No matter how much we try to squeeze just a little more out of each measurement we all live with the gift / constraint of time. It is how we treat time, how we perceive it, that often times distinguishes cultural differences. As Americans, we find our culture demanding that we make the most of every single measurable moment. We, as a culture, have mastered multi-tasking ( hell we probably invented the term just to justify what it is that we are trying to accomplish). From ages 7 - 10 I lived in San Diego. I didn't notice it then, but it became obviously apparent to me when I visited a buddy who lived there a few years ago. Time is different is San Diego.....or at least it was in La Jolla......everything moved slower, life seemed more relaxed......there wasn't the frenetic buzz that exists in my world normally. It was weird. I find myself a product of my environment/culture......well to be honest, I actually foster that culture in my own world. I often find myself multi-tasking and moving through life very very quickly. My students make fun of me for walking so quickly......."Thompson, why you walking so fast!!!!" "I've got things to do!!! If you want to talk with me you gotta keep up" the response is almost always "I'll talk with you later....". I find myself a victim of the MTV generation. Everything moving very quickly, constantly changing and needing to be constantly stimulated to keep my interest. All that being said, I found myself utterly shocked at my response today. Heather and I were talking with the twins doctor. She was explaining to us that they have come up with somewhat of a long term strategy for Parker. The last few days have seen very subtle changes in his vent settings. A little tweak followed by a 24 hour period of observation to assess his adjustments to the change. Given the success of this strategy, they have opted to adopt it for another week. They will make minute changes to his vent for the next six days and allow him to make extremely small advancements on his vent. Here was my surprise. My normal life....for that matter, my existence, has been predicated on breakneck speed with very little patience. I had a long term goal with college and career etc. but for the most part I thrive on the need for immediate gratification.....just like every other sick, red-blooded American male ( I'm not completely excluding females.....it just seems they have their head screwed on better than their male counterparts). So there I was, not only saying the words but also finding myself genuinely pleased to fully believe in them. I whole heartedly supported this strategy of baby steps (pun in tended). Parker's life will, at least for the next several days, exist of little, tiny, teensy, weensy, adjustments rather than grand ones. The results will be the same.....very small, subtle and minute victories each day that are barely noticeable......and Heather and I both love that:) Although there wasn't really any grand explanation of a strategy for Tyler that mimics that of Parker's, we found Ty to be pretty much in the same boat. He is cruising along on the same O2 settings and finds himself looking for the same subtle advancements as well. So all in all both boys are in somewhat of a holding pattern. We won't be seeing any grand triumphs in the near future.....but the plan is, that we also shouldn't be seeing any grand setbacks either.......and Heather and I wouldn't have it any other way!!! All calm on the NICU front........let's hope it stays that way:):)
Time is a funny thing. It is a constant, never changing dynamic that every single person in the world experiences and lives with in the exact same scientific matter no matter the culture or continent. It has been called the fourth dimension. A second is a second....an hour an hour....and a day a day. No matter how much we try to squeeze just a little more out of each measurement we all live with the gift / constraint of time. It is how we treat time, how we perceive it, that often times distinguishes cultural differences. As Americans, we find our culture demanding that we make the most of every single measurable moment. We, as a culture, have mastered multi-tasking ( hell we probably invented the term just to justify what it is that we are trying to accomplish). From ages 7 - 10 I lived in San Diego. I didn't notice it then, but it became obviously apparent to me when I visited a buddy who lived there a few years ago. Time is different is San Diego.....or at least it was in La Jolla......everything moved slower, life seemed more relaxed......there wasn't the frenetic buzz that exists in my world normally. It was weird. I find myself a product of my environment/culture......well to be honest, I actually foster that culture in my own world. I often find myself multi-tasking and moving through life very very quickly. My students make fun of me for walking so quickly......."Thompson, why you walking so fast!!!!" "I've got things to do!!! If you want to talk with me you gotta keep up" the response is almost always "I'll talk with you later....". I find myself a victim of the MTV generation. Everything moving very quickly, constantly changing and needing to be constantly stimulated to keep my interest. All that being said, I found myself utterly shocked at my response today. Heather and I were talking with the twins doctor. She was explaining to us that they have come up with somewhat of a long term strategy for Parker. The last few days have seen very subtle changes in his vent settings. A little tweak followed by a 24 hour period of observation to assess his adjustments to the change. Given the success of this strategy, they have opted to adopt it for another week. They will make minute changes to his vent for the next six days and allow him to make extremely small advancements on his vent. Here was my surprise. My normal life....for that matter, my existence, has been predicated on breakneck speed with very little patience. I had a long term goal with college and career etc. but for the most part I thrive on the need for immediate gratification.....just like every other sick, red-blooded American male ( I'm not completely excluding females.....it just seems they have their head screwed on better than their male counterparts). So there I was, not only saying the words but also finding myself genuinely pleased to fully believe in them. I whole heartedly supported this strategy of baby steps (pun in tended). Parker's life will, at least for the next several days, exist of little, tiny, teensy, weensy, adjustments rather than grand ones. The results will be the same.....very small, subtle and minute victories each day that are barely noticeable......and Heather and I both love that:) Although there wasn't really any grand explanation of a strategy for Tyler that mimics that of Parker's, we found Ty to be pretty much in the same boat. He is cruising along on the same O2 settings and finds himself looking for the same subtle advancements as well. So all in all both boys are in somewhat of a holding pattern. We won't be seeing any grand triumphs in the near future.....but the plan is, that we also shouldn't be seeing any grand setbacks either.......and Heather and I wouldn't have it any other way!!! All calm on the NICU front........let's hope it stays that way:):)
Evidence
They got new foot prints today:) Here is some perspective on Parker on how much he has grown so far!!
Parker's peeking out
As mom was cuddling Parker I thought this would be a cool shot. Those are some of his breathing tubes I'm taking the pic through. Then another pic of my ring and his foot for perspective.
Firsts
August 9 midnight
There are a lot of "firsts" that you experience in your life. Your first day of school, first kiss, first car, first time seeing the ocean and the list goes on. Some firsts are good and some are not so good.....first break up, first ticket, first accident.....I'm sure there are some really bad firsts that we have all tried to surgically remove from our memories ( in fact, if you could figure out a way to actually remove specific memories from someones mind you could make more money than Bill Gates!!!). Then there are those moments which, on the surface, seem to be one kind of memory but actually are another. Well tonight I experienced a "first". It seems like it would be a bad memory. Even though I really can't categorize it as a good memory it is one that I wouldn't get rid of no matter what. Tonight was the first time my son threw up on me. Finding throw up on you isn't exactly a good moment....it isn't really one of those moments that you look forward to or would even necessarily want to re-live.....however, it's a moment that I will never want to be without. Now, I have to clarify what exactly happened, cuz it didn't really go down the way that your are probably imagining. You see, I got thrown up on...NICU style. You see when a micro preemie eats it is through a feeding tube. That feeding tube doesn't come out once done eating. It stays in and either gets capped off or it is connected to a small tube and taped up to the top of the incubator. The tube is often left open and connected to this bigger tube to allow gas to escape the stomach. Sometimes a small amount of stomach contents will work its way back up through the feeding tube into this bigger tube and sit there. This is what happened tonight while I was holding Tyler. this tube was laying on my lap as I was holding Ty. After putting him back in the incubator I was standing next to the incubator talking to him when I discovered I had throw up on my shirt and pants. I didn't know when it happened or even that it did happen.....that is until I put my hand in it......that's getting thrown up on....NICU style. Bottom line is my reaction wasn't what I expected. Even though it was on my long sleeve Dallas Cowboys T, it still just made me smile. Tyler and Parker are both pretty much in cruise control right now. Tyler was put back onto the high flow oxygen instead of the low flow. This gives him more oxygen pressure support as well as humidifying the air. This was the last "guess" the docs tried to get his heart rate down and it seems to have worked pretty well. He is not needing as much oxygen mixed into his flow and his heart rate has come down some. He seems pretty content with this solution for now. Parker continues getting really small adjustments made to his vent which he is tolerating well. Heather and I are both pleased and completely fine with being patient with his progress. Little tiny steps are fine if that is what he needs. We don't want to push him to quickly. Getting extabated will be nice, but only when he is ready. Last note: somehow I forgot to announce a benchmark for Tyler and now Parker has reached it as well. Both boys now weigh over three pounds!!!!! As strange as it is to celebrate it is definitely a milestone. Seven weeks ago I would have been mortified at the thought of my sons only weighing three pounds......babies are supposed to be born at eight or more pounds.....five is a really scary birth weight.....and here I am celebrating three pounds.......but when you consider they were born at 1 pound 10 ounces and 1 pound 6 ounces, three pounds is a great triumph.....so for the rest of the week be on the lookout for the number three.....cuz it's lucky all week!!!
There are a lot of "firsts" that you experience in your life. Your first day of school, first kiss, first car, first time seeing the ocean and the list goes on. Some firsts are good and some are not so good.....first break up, first ticket, first accident.....I'm sure there are some really bad firsts that we have all tried to surgically remove from our memories ( in fact, if you could figure out a way to actually remove specific memories from someones mind you could make more money than Bill Gates!!!). Then there are those moments which, on the surface, seem to be one kind of memory but actually are another. Well tonight I experienced a "first". It seems like it would be a bad memory. Even though I really can't categorize it as a good memory it is one that I wouldn't get rid of no matter what. Tonight was the first time my son threw up on me. Finding throw up on you isn't exactly a good moment....it isn't really one of those moments that you look forward to or would even necessarily want to re-live.....however, it's a moment that I will never want to be without. Now, I have to clarify what exactly happened, cuz it didn't really go down the way that your are probably imagining. You see, I got thrown up on...NICU style. You see when a micro preemie eats it is through a feeding tube. That feeding tube doesn't come out once done eating. It stays in and either gets capped off or it is connected to a small tube and taped up to the top of the incubator. The tube is often left open and connected to this bigger tube to allow gas to escape the stomach. Sometimes a small amount of stomach contents will work its way back up through the feeding tube into this bigger tube and sit there. This is what happened tonight while I was holding Tyler. this tube was laying on my lap as I was holding Ty. After putting him back in the incubator I was standing next to the incubator talking to him when I discovered I had throw up on my shirt and pants. I didn't know when it happened or even that it did happen.....that is until I put my hand in it......that's getting thrown up on....NICU style. Bottom line is my reaction wasn't what I expected. Even though it was on my long sleeve Dallas Cowboys T, it still just made me smile. Tyler and Parker are both pretty much in cruise control right now. Tyler was put back onto the high flow oxygen instead of the low flow. This gives him more oxygen pressure support as well as humidifying the air. This was the last "guess" the docs tried to get his heart rate down and it seems to have worked pretty well. He is not needing as much oxygen mixed into his flow and his heart rate has come down some. He seems pretty content with this solution for now. Parker continues getting really small adjustments made to his vent which he is tolerating well. Heather and I are both pleased and completely fine with being patient with his progress. Little tiny steps are fine if that is what he needs. We don't want to push him to quickly. Getting extabated will be nice, but only when he is ready. Last note: somehow I forgot to announce a benchmark for Tyler and now Parker has reached it as well. Both boys now weigh over three pounds!!!!! As strange as it is to celebrate it is definitely a milestone. Seven weeks ago I would have been mortified at the thought of my sons only weighing three pounds......babies are supposed to be born at eight or more pounds.....five is a really scary birth weight.....and here I am celebrating three pounds.......but when you consider they were born at 1 pound 10 ounces and 1 pound 6 ounces, three pounds is a great triumph.....so for the rest of the week be on the lookout for the number three.....cuz it's lucky all week!!!
Thursday, August 7, 2008
Tyler's new challenge
August 7 10 pm
So it's the nature of the beast to do a lot of guessing with micro-preemies. That guessing is not limited to their over analyzing father. I've figured out that the docs do a lot of it as well. Albeit, their guesses are a teensy weensy bit more educated than mine........okay, okay the fact that I stayed in a holiday inn express last night doesn't compensate for my complete lack of medical knowledge. My degree in math and masters in educational administration pretty much both leave me impotent in medical analysis as well.....in fact being a teacher probably hinders me more than anything......it has allowed to me learn just enough to actually think I know something, when in fact I don't know diddly squat which basically makes me a menace!!:):) By the way, did anyone get my "holiday inn express" joke.....hopefully so, cuz I tried it today and it drew blank stares......long story short (yeah right!!!) while I was cupping/cuddling Parker a group of four professionally dressed women came through the Lion room. The leader of the pack asked if they could step up and see Parker. Being the proud adoring father I said "absolutely". They asked how he was doing. I assumed they were all medical professionals so I proceeded to tell them what I knew.......here's the dangerous part......using all of the medical lingo that has become so entrenched in my everyday vocabulary I gave them a very brief synopsis using words like: PDA, ligation, FIO2, saturation rates, bradycardic, tachycardic, septic and so on. I was pretty proud of myself (partially for using these terms correctly in context, but mostly for being so succinct...I summed it all up in about 30 seconds). After finishing, one of them looked at me and said " are you a physician as well as his father?" At which point I replied "No, I just stayed at a Holiday Inn Express Last Night". Being ever so proud of my witty little reply, imagine my amazement (and by amazement I mean brutal embarrassment) when they stared blankly at me, then treated me to the gratuitous yet awkward chuckle. Come to find out that the leader of the pack was the head of the entire UCD NICU ( thankfully she actually gave me a genuine laugh) while the other three were representatives of different organizations who had donated generously to the hospital through children's miracle network. They were non-medical professionals, who were undoubtedly thinking "who's this guy throwing around all the big words....what a dork!!" Oh well, I still think my explanation was good and my joke was funny.....I'm a legend in my own mind:):) But once again, I digress.....back to the guessing and what's happening with the heroes of our story. Tyler: His feeds are up 27 ml every three hours which he is handling very well. He is still cruising along pretty well on his nasal cannula. They have not reduced his rate any yet, but they have not seen the need to increase it either, so he continues on repairing and developing the all important lung tissue. The guessing comes into play with heart rate. He has been some what tachycardic lately meaning his heart rate is above normal. It's not at a dangerous level, but it is abnormal and they are trying to decipher the mystery. First they thought it was the caffeine they were giving him (remember the vanilla latte's). Seeing the need for the caffeine dwindle they discontinued it. Problem still present. Then they thought it may be due to a low red blood cell count and he is having to work harder to get oxygen through his body......so the gave him a transfusion of blood......problem still present......Then they thought it may be from the Albuterol treatments (inhaled medicine to help with with his breathing....inhalers that people with asthma take). Problem still present. It could be from being over hydrated, but he doesn't present with any signs of that. Maybe dehydration....he is on a diuretic which makes you give up some of your body's water, but they are skeptical of that. So today they took a bunch of blood to check his thyroid......a long shot, but, once again.......some educated guessing is occurring. That test will take a few days....we'll see. Other than that he seems to be doing pretty well and has adjusted to his new living arrangements. Parker: they have been steadily increasing his feeds to get him back to normal after his drama a few days ago. After taking him off feeds totally for 24 hours, he is back up to 22ml every three hours which is almost exactly where he was. He is tolerating the feeds well. His vent situation remains unchanged. His peep is still at six and he seems to be right where he needs to be for now. There is no dramatic improvement on the surface, but I believe he is healing and growing lung tissue without the stress of being off the vent. Hopefully a few more days will find him strong enough to be extabated once again which will make me very very happy.....but I can be patient. His latest challenge is his urine output. Today the nurse found a pretty significant decrease in the little yellow surprise that he is usually so willing to leave in his diaper. She tracked it throughout the day and was concerned enough to make a call to the docs. Hopefully our midnight call tonight will find him peeing like a drunken sailor in a dark ally.
A last note: tomorrow is my and Heather's fifth wedding anniversary. After an afternoon doctor's appointment to check on her high blood pressure we will visit with the boys. We have late dinner reservations followed by a ritualistic viewing of our wedding video......why the breakdown of our itinerary??? Well, I may not be making a blog entry tomorrow night and didn't want anyone to think it was an issue with the twins. We'll see how tired I am:):)
So it's the nature of the beast to do a lot of guessing with micro-preemies. That guessing is not limited to their over analyzing father. I've figured out that the docs do a lot of it as well. Albeit, their guesses are a teensy weensy bit more educated than mine........okay, okay the fact that I stayed in a holiday inn express last night doesn't compensate for my complete lack of medical knowledge. My degree in math and masters in educational administration pretty much both leave me impotent in medical analysis as well.....in fact being a teacher probably hinders me more than anything......it has allowed to me learn just enough to actually think I know something, when in fact I don't know diddly squat which basically makes me a menace!!:):) By the way, did anyone get my "holiday inn express" joke.....hopefully so, cuz I tried it today and it drew blank stares......long story short (yeah right!!!) while I was cupping/cuddling Parker a group of four professionally dressed women came through the Lion room. The leader of the pack asked if they could step up and see Parker. Being the proud adoring father I said "absolutely". They asked how he was doing. I assumed they were all medical professionals so I proceeded to tell them what I knew.......here's the dangerous part......using all of the medical lingo that has become so entrenched in my everyday vocabulary I gave them a very brief synopsis using words like: PDA, ligation, FIO2, saturation rates, bradycardic, tachycardic, septic and so on. I was pretty proud of myself (partially for using these terms correctly in context, but mostly for being so succinct...I summed it all up in about 30 seconds). After finishing, one of them looked at me and said " are you a physician as well as his father?" At which point I replied "No, I just stayed at a Holiday Inn Express Last Night". Being ever so proud of my witty little reply, imagine my amazement (and by amazement I mean brutal embarrassment) when they stared blankly at me, then treated me to the gratuitous yet awkward chuckle. Come to find out that the leader of the pack was the head of the entire UCD NICU ( thankfully she actually gave me a genuine laugh) while the other three were representatives of different organizations who had donated generously to the hospital through children's miracle network. They were non-medical professionals, who were undoubtedly thinking "who's this guy throwing around all the big words....what a dork!!" Oh well, I still think my explanation was good and my joke was funny.....I'm a legend in my own mind:):) But once again, I digress.....back to the guessing and what's happening with the heroes of our story. Tyler: His feeds are up 27 ml every three hours which he is handling very well. He is still cruising along pretty well on his nasal cannula. They have not reduced his rate any yet, but they have not seen the need to increase it either, so he continues on repairing and developing the all important lung tissue. The guessing comes into play with heart rate. He has been some what tachycardic lately meaning his heart rate is above normal. It's not at a dangerous level, but it is abnormal and they are trying to decipher the mystery. First they thought it was the caffeine they were giving him (remember the vanilla latte's). Seeing the need for the caffeine dwindle they discontinued it. Problem still present. Then they thought it may be due to a low red blood cell count and he is having to work harder to get oxygen through his body......so the gave him a transfusion of blood......problem still present......Then they thought it may be from the Albuterol treatments (inhaled medicine to help with with his breathing....inhalers that people with asthma take). Problem still present. It could be from being over hydrated, but he doesn't present with any signs of that. Maybe dehydration....he is on a diuretic which makes you give up some of your body's water, but they are skeptical of that. So today they took a bunch of blood to check his thyroid......a long shot, but, once again.......some educated guessing is occurring. That test will take a few days....we'll see. Other than that he seems to be doing pretty well and has adjusted to his new living arrangements. Parker: they have been steadily increasing his feeds to get him back to normal after his drama a few days ago. After taking him off feeds totally for 24 hours, he is back up to 22ml every three hours which is almost exactly where he was. He is tolerating the feeds well. His vent situation remains unchanged. His peep is still at six and he seems to be right where he needs to be for now. There is no dramatic improvement on the surface, but I believe he is healing and growing lung tissue without the stress of being off the vent. Hopefully a few more days will find him strong enough to be extabated once again which will make me very very happy.....but I can be patient. His latest challenge is his urine output. Today the nurse found a pretty significant decrease in the little yellow surprise that he is usually so willing to leave in his diaper. She tracked it throughout the day and was concerned enough to make a call to the docs. Hopefully our midnight call tonight will find him peeing like a drunken sailor in a dark ally.
A last note: tomorrow is my and Heather's fifth wedding anniversary. After an afternoon doctor's appointment to check on her high blood pressure we will visit with the boys. We have late dinner reservations followed by a ritualistic viewing of our wedding video......why the breakdown of our itinerary??? Well, I may not be making a blog entry tomorrow night and didn't want anyone to think it was an issue with the twins. We'll see how tired I am:):)
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