Welcome to Tyler and Parker Thompson's Blog

Tyler and Parker Thompson arrived on June 23, 2008 at only 26 weeks and 4 days old, weighing 1 pound 6 ounces (Parker) and 1 pound 10 ounces (Tyler). Parker spent 129 days (home 10/30/08) in the NICU, while brother Tyler spent 143 (home 11/13/08). We are thrilled to have our family complete with both boys home!

This blog was created by John (the daddy) to inform family and friends (and now new acquaintances) of the twins progression. Below is the blog archive dating back to the week Heather (the mommy) was admitted to the hospital. We try to post weekly updates, but on occasion the week gets the best of us.

Friday, December 12, 2008

How Many Licks

8 pm December 12th

"How many licks does it take to get to the center of a tootsie pop?". According to wikipedia (the most reliable source of information in the universe....of course) this phrase is the cornerstone of one of the longest running television ads in the history of television commercials. Right up there with "Got Milk" this question is not only recognized by multiple generations, but is also one of those phrases that just makes you smile. Picturing that freaky little commercial just makes your head turn slightly askew and causes you to smile......by the way, is it just me, or did anyone else notice that the boy who is asking the question is not only completely devoid of any clothing, but also resembles a statue reminiscent of greek architecture.......and what's with the Owl.....those eyes are twice the size of his head......and don't you love the fact that the establishment of his mental prowess, the evidence of his intellectual superiority is identified by his little graduation cap (or mortar board....for those of us who deal with high school graduations every year of our life.....okay so only Mark and Bobby Seebs will get that, but oh well). Like a graduation cap and tassel on an animal are supposed to convince us he is "wise".......oh let's not forget the politically incorrect and highly stereotypical glasses......cuz everyone knows that visual impairment requiring corrective lenses equates to a highly elevated IQ. Never the less, the entertainment factor of this little gem has struck a cord with multiple generations.........

I make my return to the blog, not just to torture you with benign ramblings that seem to go nowhere, but to actually inform as well. The above random reference actually popped into my head today when I was pondering time.......yes time........that mathematically precise, scientifically proven constant within our universe.......or is it.......a second is a second........put together sixty of those and you have a minute.....you will always have a minute.....no matter what continent you are standing on, no matter what language you are speaking the precise measurement of time is constant.....so why is it that a minute can seem to last forever in some circumstances, while in others it goes by in the blink of an eye.......you see, time is not as constant as we may all seem to believe it to be. The measurement of time may be the most stable thing in the universe, but the perception of that time various greatly depending on a whole host of other variables. It is this aspect of the world that has captured my focus today.

Today's news is unfortunately not very good. Tyler will be readmitted to the hospital on Sunday afternoon. He simply can't seem to eat very much and thus is not gaining weight. Sunday they will readmit him in order to place the feeding tube back into his stomach via his nose. They will then teach us how to use the feed pump and how to maintain the tube. If all goes well his stay will not exceed 24-36 hours. Eating. This is what it all comes down to......eating. Considering what we've been through and the bullets we've dodged you'd think that eating would be a simple hurdle to get over......a simple challenge to compensate for........a simple problem with a simple solution. Well that's what has become so frustrating......there simply isn't any solution. What do you do when you know they simply refuse to eat. You set up a battle of wills. Sure I can keep the nipple in his mouth no matter how much he fights it, but he is in complete control of whether or not he actually sucks and swallows. I can squeeze a little food into his mouth and try to feed him like a bird, only to activate his gag reflex and have him throw up what precious few calories he has taken already. This has become the battle that we fight every two and half to three hours. How about we go old school and just wait till they're hungry? That didn't work either. Sure they got humgry and really tried to eat......but alas after a ounce or so, it's back to the flat our refusal to continue. Our entire world revolves around trying to figure out how to get the boys to eat better. I have spent most of my life trouble shooting and problem solving. I spend the majority of my work day doing exactly that......constantly identifying problems and figuring out how to solve them. Getting my sons to eat is a problem that doesn't seem to have any solution. It is what dominates every moment of our day. We have identified, modified and flat out changed every variable we can think of that may be the problem.......is the nipple on the bottle too fast, too slow, too soft, too rigid....will it allow the rice cereal enhanced formula to come through or will it come through too quickly and choke them.......what about the formula.....the taste.....too cold....too warm....why won't they eat.....why won't they simply understand that they are hungry and thus need to eat. Is it a psychological problem.......being on a feeding tube for four and a half months can cause an oral aversion.......or is it the reflux......the constant flare up of acid from the stomach into their throat when they eat that causes pain and activation of their gag reflex......have they developed a Pavlovian response that tells them that eating causes pain, therefore don't eat.......what's the problem........well our best guess at this point is it is the reflux. As soon as they start eating, the reflux kicks in and causes them pain. This causes them to not want to continue, even though they may be hungry. In Tyler's case, it is resulting in an extremely low weight gain, that we have been battling for the entire four weeks since he's been home. It came to a head today, and the pediatrician finally was forced to the conclusion that he has to get the tube put back in. He has to gain weight. He has to be force fed more food than he can physically consume on his own. He will get it put in, then we will bring him back home where he will continue to develop his motor dexterity by attempting to pull it out as he constantly does with his nasal cannula. The theory is that if we can get him to gain weight he will eventually out grow the reflux problem. He has to eat in order to gain weight and heal and all that hinges on the intake of calories. So the question becomes how long will he have it in.......now we come back full circle......yes we are finally back to the ramblings that began this diatribe.......how long will mommy and daddy be force feeding our little hero...............how long.......how long until he gets it out........how long until we can stop worrying about every single feed........how long.......well, the research says that micro preemies will usually out grow reflux problems by 18 months of age.......18 months!!!!.....come on!!!......he's going to be on this for another year???.....well the pediatrician mentioned a few weeks.......he mentioned hin passing that he may need it to simply get over "this hump"........well then, how long is a few weeks........seven days times 3...times 24 hours....times 60 minutes etc........how long will it be.......how long will it seem.......well it seems like an eternity ago that I sat by his bedside wondering if my one pound ten ounce little miracle would survive.....that eternity was only five and half months ago.......how long will it be.......time is within the perception of the beholder........I don't know how long.....the only thing that I do know, is that, like everything in our lives since June 23rd, this time span won't be measured in seconds, minutes or hours.......this time span won't be measured by conventional means..........this time span will experienced and perceived with love. As frustrating as it may get, we have a lifetime of love to get him through this :):)

1 comment:

Anonymous said...

Timmy and Danny were yelling in the background as I read your latest blog. I know it seems like an enternity to get through each hump of Tyler and Parker's growth. AND...There will be a day that you'll sit down to read someone else's blog or to read the paper and you'll be the one distracted by yelling! Keep the good fight and know that every one of us are here loving you and sending good vibes.

Merry Christmas, jen
The Brandt Family