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.

Sunday, August 31, 2008

The Life of Ty

"I pledge allegiance..."

"You talkin' to me?"

"I have a feeling it's bath time..."

Stinky No More

Gotta love a bath!

"Okay, either the tub is getting smaller or I'm getting bigger!"

Saturday, August 30, 2008

Daddy and Ty

Daddy and Park

Mommy and Ty

Hold hands and stick together....

August 30th 10:30 p.m.

Anyone who knows me knows that I am not a reader.....it's just not something I do.....call it ADD.....call it too lazy.....blame it on the fact that when I try to I fall asleep.....whatever the reason may be, I simply don't partake in this past time that so many people love to do and often yearn to do if they have free time. My buddy John, who lives in Florida, will read multiple books a month.....this is a life experience that I simply can't fathom! He even reads more than one book at once....It's madness I tell you....simply madness!!! My beautiful wife often chastises me for my adamant aversion to such a task. Being a non reader makes those few pieces of work that I have actually read that much more special to me. If I have actually taken the time to read them they must have had a pretty profound effect on me......and they have. Tonight's blog is inspired by just such a reading. Today in the NICU I found myself reflecting back on one of the few pieces of literature that I have actually willingly embraced (I pause for a moment to defend myself as an educated human being.......it's not that I have never read.....come on I did suffer through enough college to get my masters and did all of the assigned reading.......it's just that I haven't read much outside of the required reading realm in my life.......okay, let's just say you could probably count them all on one hand.....anyways). The piece of literature that I'm referring to is well know and most of you have read it......and if you haven't, there is a copy of it on this website http://teacherweb.com/NC/WilliamsTownshipElementary/CheriBarkley/AllIEverReallyNeededtoKnow.htm
It's entitled All I Ever Really Needed To Know I Learned in Kindergarten. If you haven't read it do so now....it's a quick read that will literally only take about two minutes. If I had one wish in the world it would be that every human being would have to follow this list. Anyway, I found myself reflecting on a specific passage within the piece of work. .......hold hands and stick together.... for me, today, in the NICU, it really was that simple. You see, today was a pretty good day. Both boys are doing okay....no major advancements.....no major drama......no boring specifics this blog.......this blog is about holding hands and sticking together. Our visit started out with Heather holding Tyler while I sat and kept her company. This lasted for about 45 minutes, until another rocking chair became available........that's when I decided I was going to try and hold Parker........holding Parker is a crap shoot......sometimes he handles it pretty well while other times you know not even to try.....he's just too fragile.....well today I cuddled with my little hero for almost 45 minutes.......he just cuddled into my arm and seemed at peace.....it was a great cuddle that made me feel great. A few hours later I was at Tyler's bedside, contemplating whether or not to hold him.......the decision for me to hold one of the boys is always tough.......I struggle with the debate of.....is this good for them or is it not good for them and it's me being selfish wanting to hold them at their expense......sometimes when you hold them they don't do well at all.......it's always hard to figure out......I decided it would just be a little too much after all he'd been through the past two days.....mommy had already had a great cuddle with him, he felt loved, and my desire too hold him could wait......so I just sat with him bedside.....I leaned on the crib rail which is pretty low......positioned myself as comfortable as I could......and just held his hand.....well really it was his whole forearm as he held my finger.......my other hand was on his head gently petting his head......at one point I needed to get up and adjust my seat....when I attempted this his little grip closed tighter around my finger......he did not want me to go......I pretty much melted.......any muscle ache that I had disappeared and you can bet your ass I didn't move.....for a very long time......you see all we both needed was to "hold hands and stick together".

Inadvertant Bad Coffee Experience

August 30th 11:30 a.m.

For those of you who have gotten accustomed to getting a Ty and Park update while enjoying your morning cup of Joe, my apologies. This blog is obviously coming about twelve hours later than normal. Having had to work two night this week, Heather has been a trooper and has taken on blog responsibilities most of the week. Last night I was just plain too whooped to sit down and write. The week got the better of me. So if your morning coffee experience was disrupted a bit at least now you know it wasn't due to any further devastating news about the boys, it was simply a task I chose to procrastinate on:)

Life in the NICU is just pretty strange at the present. Up is down and down is up.....I can't figure out really what is happening. Tyler is supposed to be progressing pretty well, but the last few days have seemed the exact opposite. Thursday's bizarre turn for the worse still has no explanation. Prior to Thursday we were seeing times when he was awake alert and seemed to be actually a little bit aware of his surroundings. We were getting holds that were up to two hours and he seemed to be on a good path. Lethargy, paleness and disconnect became the norm on Thursday.....for no apparent reason......to the point where they didn't want to give him his immunization shots.....it was really weird. He got a blood transfusion to give him a boost. The news of the bleed in his brain was a little difficult to hear and prompted a lot of speculation in my head. Yesterday he had rebounded enough that they were comfortable administering his shots. These of course had the expected effect. He just didn't feel good all day. Unusually cranky, really unsettled and just plain sick were the norms of the day for Tyler. The poor little soldier just didn't feel good and it showed. When we left last night about 9:30 his heart rate was still up, he was still breathing really hard and he just couldn't get settled in. Parker continues the anomaly. He has been really struggling as of late. After three plus weeks back on the breathing tube we were informed that he had at least a couple more weeks. His oxygen requirements wouldn't come down and he was actually diagnosed as being worse off then he was three weeks ago. His eye exam as well as the changing of his tube on Wednesday really knocked the poor little guy for a loop. Unlike brother Tyler, he was able to be given his shots on Thursday though. The extreme discomfort this provided along with the potentially devastating news about his brain ultra-sound made Thursday a tough day. The anomaly comes in with Friday. Parker's oxygen requirement was actually down.....down to 45%.......he had been camped at 50% plus for so long I had forgotten what the 40's looked like. He seemed to be slightly.....slightly more settled than the past few days and was satting pretty well. Nine weeks in the NICU tells us that this is most likely the positive rebound from the blood transfusion he had earlier.....but who knows. So the bottom line is: I really don't know what to tell you.....other than both boys are alive and at least somewhat well and living in the NICU........living in the same room I might add......which has been really really nice. Seeing them both at the same time and so close to each other is the positive focus of the week!!!! It will be interesting to see how they are doing today:)

Thursday, August 28, 2008


Well, we had a tough day in the Thompson - Koala Room. John and I expected the boys to be a little under the weather from their immunizations, but of course we should have known that NOTHING goes how it's expected in the NICU. Parker had his immunization shots this afternoon and was irritated, but actually needed less oxygen than yesterday. So we're thinking the blood transfusion, new breathing tube and diuretic may have helped. The nurse thinks he's also still trying to recover from the eye exam and re-intubation he had yesterday. Bottom line...Parker was pooped, but still looking good!
Tyler was another story. He hadn't received his immunization shots when we arrived this afternoon because he was getting a last minute blood transfusion. With Tyler looking a little pale and requiring more oxygen than "normal", the doctor decided to boost his system with some blood. He may get his immunizations either tonight sometime or even tomorrow depending on his progress. Overall he looked pretty tuckered out and very pale. We're hoping the blood will work some magic and improve his oxygen and pressure requirements. Only time will tell...like everything else in this journey.
On a scary note, the boys head ultrasound results came back with concern. The doctor said Tyler was showing a mild, grade 1 (lowest range) hemorrhage cyst in a part of his brain. It will hopefully resolve itself, but they will need to keep an eye on it. If the doctor HAD to pick a part of the brain to have a hemorrhage, he said this would be the best for the LEAST amount of impact. Parker's results were a little more worrisome. Parker's brain has "concerning" spots that could be damaged, but there is no confirmed diagnosis of neurological damage at this time. An ultrasound will be taken in a couple of weeks and the spots will be compared to see if there is growth in these "concerning" areas. We were assured that these are common side effects of micro preemies, but it doesn't make it a better pill to swallow. Yes, our hearts sank as we now have new worries to consume us. This is a part of parenting that becomes terrifying...the unknown future of your child and the potential impact on your family.
I'm sorry...this becomes easier when?

Tuckered Tyler

He just looks so cute laying there like a good little patient - not a peep from him
Daddy was trying to make it all better

Pooped Parker

Even though he's exhausted, he still finds the strength to kick aside his bedding!

Don't you pull on that tube mister...

...we see your hand!

Even with a new outfit, Parky just isn't having a good day

Wednesday, August 27, 2008

A Medical Day

So today was a busy day for the boys, especially Parker. I luckily showed up AFTER both boys had eye exams. BELIEVE me, you DO NOT want to be present for this procedure. John and I were lucky (or unlucky I should say) enough to experience hearing an exam one day when we were bedside in the Lion Room with Parker. The screams from this baby was enough, but to make matters worse, I watched a documentary on micro preemies and SAW an eye exam. One of those "couldn't look away" experiences that will stay with me forever. I keep trying to avoid micro preemie TMI, but I guess I'm either too curious or just paranoid enough to want to know EVERYTHING! Anyway, I was grateful to find out this lovely irritant happened hours prior to my arrival. On eye exam day, the boys usually show signs of the "drama" by being pretty wiped out and sporting red, puffy eyes. Today they both looked REALLY good in the eye arena, but seemed to be pretty tuckered.
That was the end of Tyler's big procedure, but was only the beginning for Parker who also had his breathing tube replaced. Yes, I left the room for this one. Even though they sedated the little guy, I just couldn't be there if he cried. How I miss hearing his little voice and the thought of him having it for a second and then losing it again makes me sad. The one week Parker was on the CPAP device was so memorable for me because I heard his little squeeky voice for the first time. After he was re-intubated I remember watching him cry but hearing nothing. "Oh yes, his voice is gone again because of the tube. I forgot." A sad day indeed. Of course the nurses joke that some day in the near future when Parker is crying up a storm I'll wish for the tube back. But I'll take that over this scenario any day! The procedure was done in less than an hour and when I returned my little love bug was in deep sleep. The doctor said he did VERY well, a good patient (I'm not sure how he could have been a BAD patient, but I'll take the positive reinforcement). They took an x-ray to confirm that the new tube was placed correctly and also recognized that his feeding tube was down too far. Good catch! So...what does ALL of this mean? Well, they will culture the extubated tube secretions to determine whether Parker has pneumonia or an infection. The doctor also hopes that this new tube will help his airway. We'll see! Parker did have an advancement today - he went up on his feeds from 30 to 32! His residual has been good so this increase should help him (and hopefully his lungs) grow.
Tomorrow the boys are getting their two month immunizations so we are told to prepare for possible high temperatures and crankiness. I have a feeling "mommy holding" time may be affected...grrrr....how dare they! Besides changing their diapers, taking their temperatures and snapping pics, that's ALL I got here! Ha ha...don't they know?
Below are a few pics from today - Tyler sporting his medical ID bracelet and poor Parky being pooped (say that fast 10 times)...poor Parky being pooped...poor Parky being pooped...

More Bling for Tyler

BOTH legs...are they kidding?

This is exhausting!

At least this band is lighter than the other!
That's a lot of action for one day!

Exhausted Parker

There was just too much excitement for me today!

Must rest!

Tuesday, August 26, 2008

Windshield Wipers

August 26th 10:45 pm

It's one of those weird things.....you're driving along and it starts to drizzle.....you know it's raining, but you don't turn on the windshield wipers.....you can see just fine.....stop lights, signs, other cars, they're all there and you're driving just fine.....then at some point you decide to turn on the windshield wipers......WOW, that's so much clearer.....I didn't realize how much my vision was blurred.....it's so much clearer now. Well, today we had the NICU windshield wipers turned on. We met with the current Attending Doctor on duty Dr. Underwood. I really like him. He spent close to a half an hour with us talking about both boys. He was candid, honest and patient with us. We asked a lot of questions, as usual, and he made genuine attempts to answer them all. The ones he could not, he was honest about not being able to, but still tried to give us an idea of what he thought. It was the first time that we really felt like we were given the bigger picture of the boys current state and where they may be headed. He spoke in as many specifics as he could and was very candid about making "best guesses" when we asked him to. The bottom line plays out like this. Tyler seems to be progressing relatively well. There is concern over his current breathing situation on high flow cannula. It is being watched carefully and a decision will be made on Thursday to continue this course or to place him back on CPAP. Tests on Thursday will help to determine his course of action. Parker is sick, much sicker than I was allowing myself to admit. He is still on the breathing tube and vent, and, barring some miraculous turn around, he will need to remain on the vent for at least a couple more weeks. The bottom line is, he is actually worse off now then he was three weeks ago when they re-intubated him. His lungs are just struggling. His road to recovery will be significantly longer than Tyler's. Again, barring some dramatic changes, Tyler will definitely be coming home before Parker. Time tables are still very open ended, but it is definitely more clear now that both boys are not on the same path to recovery. The good news of the day was that both mommy and daddy got good quality cuddle time in with the boys. I got to hold my little hero Parker. He snuggled in my arms for the better part of a half an hour. He seemed at peace. Mommy got to hold Tyler for another two hours today as well. He buried his little face in her chest and seemed happy as a clam to just hang out on mom's chest. So there's the current state of the life and times of Tyler and Parker as we know it. Just like with the weather, we've learned that things can change suddenly in a very short amount of time. We'll continue to adjust the wiper settings, the headlights and anything else that needs to be changed along the way.

Monday, August 25, 2008

Taj Mahal Thompson

Mommy had a BIG day with the boys today as they were reunited! Yes, Parker moved into the Koala Room with his brother this afternoon. I was THRILLED beyond belief! John and I have been told multiple times that "they are trying to get it done" but after the third baby was moved into the room, we sort of lost hope. But today it actually happened and brothers are again growing together side by side. Well, as "side by side" as you can get in the NICU (see pics below). The benefit to the boys sharing the Koala Room is that they are the ONLY ones on this side of the room, thus it's quieter and they will share a nurse (how nice it'll be to get information about both boys from the same source). We also won't have to separate ourselves and our time to be with both boys anymore. What a relief! Hopefully they will stay together in the Koala until they are discharged (not sure if this is possible, but we can hope). So John and I just called Lisa, the night nurse, and she said the boys were de-satting in unison. Not really the kind of behavior we want them to model but it's kind of cute that they are being so "twin like"!
Tyler also had a BIG day with the addition of a HUGS infant protection system alarm. I guess when babies get to a certain weight and ability they are armed with security ankle bands so they can not be stolen. You can see from the picture that this is no small device! It feels good knowing that Tyler is safe from kidnapping!
Stats: Tyler is about the same except his liter flow was decreased from 5 to 4. If he can remain steady on 4 they will not put him back on the CPAP device, so we are praying that he doesn't get tuckered out. His oxygen level was around 50% which is okay. Parker had a series of tests today that showed fluid in his lungs and a high CO2 level. Because his oxygen level was also over 60%, the doctors gave him a blood transfusion and started a diuretic treatment to increase oxygen flow and reduce fluids in his body. Poor little guy continues to have a TON of secretions and needs to be suctioned ALL the time. I can tell the tube irritates him and I JUST can't wait to get him off of that vent. Let's hope today's treatments will begin the cycle to extubation!
So I have darling pics of the boys below. Well, I think they are darling but I am the mom! I tell you, I can look at these little love muffins all day long...and believe me, I have!

The BIG Move!

Getting ready...view from the Koala Room from Tyler's bedside

Here comes Parky-Poo

A lot of action getting wires connected


View from Parker to Tyler
View from Tyler to Parker

I know something's different here, let me think...

...could I be with brother again? Yippee! I'm soooo happy I can't contain it!

Jail Bird

What IS that BIG thing on my ankle?

No one can steal this cute guy!

Locked and loaded!

Sunday, August 24, 2008

another step back

August 24 11:30 pm

It was the tale of two boys today. Tyler, at least for the moment seems to be doing well. Although his CO2 levels remain around 50 he is able to still remain on the high flow cannula and off of the the CPAP. I got to hold him today for about two hours. He tolerated it well and we had a great cuddle. We gave him a bath, which he seemed to tolerate as well. Parker, unfortunately has taken a step backwards. He just wasn't progressing and seemed to be getting worse, so the docs increased his vent settings. Most of the progress he had been making in small incremental steps were all but erased today as they had to increase them all back up. Heather did get a chance to hold him today, but he just doesn't seem to be doing very well. The docs are still keeping him on the wait and grow theme. It doesn't seem to be working, but what else is there? It's getting a bit frustrating. They will be 36 weeks gestational age this week and Parker is still on the vent. I'm waiting and hoping for his turnaround.........


Saturday, August 23, 2008

Two Hours

August 23rd 11:45 pm

So let's say you've got two hours to kill.....what could you do? I know, I know everyone out there right now is saying " Man, I wish I had two hours to SPARE, let alone two hours to kill......who has two hours to kill....come on John are you kidding me right now??" Well just relax and play along would you......I mean, let's face it....you're reading this blog aren't you....and I've been known to be pretty wordy....maybe not two hours worth of wordy, but hey....DON'T TEMPT ME PAL!!!!!! Anyway back to my random introduction.....let's say you've got two hours to kill.....what could you do? Well, a trip to the movies is a two hour investment (actually if you include waiting in line to buy the tix, sitting through the half hour of commercials, then the previews and finally the movie you're talking about the better part of three hours....but for the sake of this blog we'll call it two)...(( and by the way, while I'm on the subject......when did every movie theater sign on with this whole pre show commercial extravaganza anyways!!! I mean, it used to be just lame slides that went by without sound.....at least then you could still talk with each other....or sit there in awkward silence....we're all entitled to some awkward silence!!! now it's a full presentation of commercials and "coming this fall on NBC" stuff. If I see another coke ad before a movie I'm gonna stop buying soda at the movies.....oh.....wait.....I'm that guy that smuggles in his own soda.......oh well)) so what else can you do in two hours?? Well that's the great part of living is Sacramento!!!! In two hours I can be in one of two vacation destinations for people all over the world.....in two hours I can drive to San Francisco or I can drive to Lake Tahoe.....in two hours I can watch four sitcoms.....or five if I have them recorded and can fast forward through the commercial......I wish I could do that at the movies......in two hours I can burn over 500 calories on the treadmill......that of course would require a lot more effort.....the bottom line is that there are a lot of things you can do in two hours......but today I discovered something new......I can sit and watch my beautiful wife hold my little hero Tyler for two straight hours!!!!! That's right, Heather held Tyler for two straight hours today!! He desatted a little, had some trouble adjusting at first, but, once he settled in, he was the happiest little guy in the world.....I said happiest little guy and not happiest person cuz the title of happiest person went to Heather who basked in every second of the experience......even to the point that she kept delaying going to pump cuz she refused to give him up!!! It was a great two hours. Most of the time a "hold" will wind up being a tease due to the experience being cut short.....but not today. The other great news of the day is that Parker has broken the four pound mark!!!! He is still requiring high Oxygen and continues to desat regularly which are both preventing him from being extabated,......but we are rejoicing in the fact that he is officially four pounds today!!! That is almost a 300% increase from his birth weight which means he has almost tripled his original birth weight!!!! My boy may still be struggling, but at least he is still growing!!!! There are some cute pics below of Parker being "sleepy" and Tyler eating his fingers....take a peak.

Ty and Park