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 19, 2008

Ty and the NICU....take 23

Friday Dec 19th 11pm

No, there are no obscure references or wandering stories to be had today......I simply don't have the energy. Today, was yet another exhausting day that found us on the Tyler NICU roller coaster for what seemed to be the millionth time. Quick synopsis: One week ago Ty had a bad weigh in at docs office (surprise surprise)......he scheduled Ty to be admitted to the NICU on Sunday for the insertion of the feeding tube. I took the time to analyze etc. and figured out I'd take a total of three weeks off to get Heather the help we need to stabilize him. Sunday comes and Ty has gaines four ounces (minimum to stay out of NICU is one ounce per day) so the doc agreed to try the experiment with another weigh in on Tuesday which kept him out of the NICU. Heather and I hunker down and micromanage every feed and spend upwards of an hour on each feed. We do this every two and half hours. Tuesday comes and Ty has gained another four ounces...YIPPPEEEE!!!! As exhausting as it was we felt we had at least found a solution. Next weigh in was on Friday (today) We continued with the extreme focus with renewed hope of a solution. We were successful with maintaining the same amount of food intake each day as we had the previous four thus we should continue to gain two ounces a day as we have for the past four. This morning we arrive with smiles on our face knowing we will get good news........Three full days have gone by, so we should have gained six ounces.....all we need is three to stay out of the NICU.......how many did we gain????.......drum roll please........Ty gained exactly 0 ounces......yes, you heard me correctly.......he didn't gain a damn thing!!!!! how is this even possible.....nothing has changed......he's eaten the exact same amount and gained nothing????? We succumb to the inevitable conclusion that he has to go back to the NICU and get the tube. We return home and begin preparing........only to find out that the appointment we have at 2:30 has changed everything once again. At 2:30 we were supposed to go down town to meet with a feeding specialist and a nutritionist to get some new insights on the problem at hand. We assumed this would be canceled. The doc and the specialists conferenced and decided that we should keep the appointment to see if the specialists may be able to offer a different solution that may avoid the tube. After an hour and a half appointment the conclusion was rendered that just supported what we had theorized already. It all comes down to the reflux. Tyler (Parker as well, but not quite as badly) has developed a negative association with eating. Because he experiences such acute pain EVERY time he eats, he has developed a negative association with eating. The smell of milk (or formula) on a pacifier is supposed to elicit a positive response.....the child is supposed to become interested and "root" around trying to get closer to the scent and desire it. Tyler has the EXACT OPPOSITE reaction. He violently rears his head in the opposite direction. All of our patience and persistence to get him to eat despite this negative association are succeeding in barely keeping his head above water, but are still reinforcing the negative psychological response since he continues to experience pain with every feed. The only solution is to solve the reflux......more on that in a second. We left the meeting with a new last ditch effort. We will change everything about his feeds hoping to increase his volume intake. He now eats formula with rice cereal in it.....enough rice cereal that it basically takes on the consistency of a thin pancake batter.....the philosophy being that more solid food will decrease the reflux effect. Now we will take away the rice cereal completely, switch to a completely new nipple and bottle system and increase the caloric content of the formula by mixing in more powder. The increased powdered formula will increase the calories per ounce and hopefully put some weight on him. The elimination of the rice cereal will theoretically allow him to eat more easily and thus expend less energy by eating a thinner substance. Basically a complete change of what we have been doing, since it doesn't seem to be working. The bottom line is that Heather and I aren't holding our breath. We will put the new system into action and hope that we have stumbled into the solution, but it really does seem to all completely hinge on finding a way to control the reflux. That is where Monday morning comes into play. At 7 am we have back to back appointments with a Pediatric Gastro-Intestinal specialist. This is our last hope of getting any new strategies to reduce the reflux which is causing all the drama. Most of the research we have done leads back to the conclusion that they have to out grow the problem. In order to outgrow the problem they have to eat.....therein lies the dilemma. So we are expecting the GI specialist to spend a lot of time assessing, but ultimately coming to the conclusion that he needs a feeding tube in order to increase caloric intake in order to grow in order to out grow his reflux problem. Bottom line: there is an extremely high probability that Tyler's Christmas present will be a tube in the nose!!! We have pretty much exhausted all possibilities and have held off the inevitable as long as we can. One more challenge to face......one more hurdle to leap over........one more obstacle to overcome.......and hopefully.....one more story to tell in the future........can that future be more sooner than later please........please!!!!!

4 comments:

Anonymous said...

We are not out of miracles yet John and Heather. Hang in there kids. Hang in there.

Autumn Brown said...

Thinking of all of you... :)

Cindy said...

My heart aches for you as you face yet another challenge. Parenting newborns isn't supposed to be this hard. I'm rallying all the prayer warriors in my world. Courage,

Cindy

Cindy said...

I sent a mass email out to everyone on my home email account that I thought would pray for Tyler. He is such a miracle child, why not ask for one more?

One of my friends, with a medical background, read your blog and asked if you had tried something cold rather than warm.

Her thoughts were that if Tyler knows he doesn't like warm milk or associates it with discomfort and it's making him gag, maybe something cool on his throat, with a new sensation might help. You know, like when we have a sore throat and we prefer ice cold 7Up to warm milk.

Here are some Dr. Mom suggestions. What about yogurt? Cool apple juice, or even ice cream? At least these all contain calories.

Another friend of mine adopted a baby from Calcutta about 20 years ago. They assured her the child had never had solid foods and told her to feed only formula. The baby girl screamed for eight days straight. A neighbor dropped by and said, "For heaven sakes, let's try something else." One spoonful of yogurt and the child stopped crying. She settled down and my friend was able to get her on a normal baby diet in a week or so.

I do not for one minute think I know more than your army of neonatal pros. I just care about your little boy and am here to help problem solve or bounce ideas around.

Lots of people are praying that Tyler will be home with his brother for Christmas. Mostly they are praying that he will find something that he likes to eat. I vote for vanilla ice cream or yogurt.

Cindy