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.

Thursday, July 30, 2009

Coughy, Vomity, Poopy-fest

Well, I just got back from my first trip away from the boys since before their births. I left Friday morning and didn’t return until Sunday (26th) afternoon! My brother Mikey, his fiancĂ© Velear and I took a wine barrel tour at Del Dotto winery in Napa (jaw dropping ambiance with amazing Italian-inspired decor), ate ‘delic’ food at the restaurant Bouchon in Yountville, and saw an over-dramatic performance of “Private Lives” at California Shakespeare Theater while eating fabulous cupcakes from Teacake Bake Shop – yummo! What a fun and yummy trip sprinkled with great company. I was fortunate enough to accomplish many of my vacation goals, just to name a few: sleep in a comfortable bed (compliments of the Marriot), sleep in past 6am (until almost 11am one morning – I did go to bed at 2am, but still…), explore new places (Emeryville is quite a shopping Mecca – ha ha), and spend a relaxing, fun time with great people (Mikey and Velear were a great fit for my agenda)! Fortunately I was not a “stalker mom” and succeeded in calling home once a day.

Because of my daily update calls I knew I was going home to a “sick” house, but had no idea that Nurse Heather would be called into action so soon. Yes, my euphoria from time away was quickly severed as I walked into the “coughy, vomity, poopy-fest” (the best show in town).

So let me back up a bit - before leaving the hospital last week, John was complaining of a scratchy throat. By the time we left the hospital all three of my guys (Tyler, Parker and John) had runny noses and were building up for something grander. Sure enough, by the time I left for my mini-vaca, Tyler and Parker had runny noses and mild diarrhea.

By the time I got home on Sunday, the boys were in full sick mode and John’s scratchy throat had become a full-blown sinus infection. The next two days for Parker were filled with throw up after throw up after throw up…diarrhea after diarrhea after diarrhea…raw bottom to rawer bottom to the rawest bottom– followed by whining to crying to full throttle screaming …coughing, coughing, and more coughing…and then, pure lethargic submission. Poor Parker was whooped! Although he didn’t have a temperature, his behavior and symptoms were enough to warrant a call to our Pediatrician. After talking to the charge nurse, we were told to come in. I knew it was an appropriate call because our doctor fit us in even though he was already double-booked, covering the patients of his colleague who went home sick that day. I took Parker in as John stayed with Tyler – who hasn’t had the massive diarrhea but a severe runny nose, throw ups with feeds and a beginning cough. The doctor ordered stool cultures for Parker and took a mucus sample while we were there. He is being tested for Swine flu, Rotavirus, E Coli, two kinds of parasites and a bacteria (clostridium). It is possible the boys contracted some sort of parasite or bug while in the hospital! Eek gads, I hope not!

So John spent last night and today squeezing out Parker’s diahhrea-filled diapers and with my help (holding the liquid-filled containers), poured the feces into four culture vials. The challenge was getting enough mass to fill the liquid to the RED LINE (if it’s in caps is it important? – I guess so). He had to “ring out” multiple diapers to actually get enough “sample” to fill the four vials - poor Parker would only produce little squirty, but often poops. So after finally gathering up the last of the stool remnants, we finished our labeling and John took them to the lab. We are anxiously waiting for the results and hope there is SOMETHING we can do to help our poor little guy.

I’ve never seen Parker so sick – just lying on the floor, too lethargic to sit up or play. We’ve been gavaging as much Pedialite into him as he’ll tolerate, but he’s been throwing up with every bottle so it’s become a difficult problem to solve. Brother Tyler is also riding the train through our newest attraction, Vomit Volcano – the ride will turn your stomach for sure! For some reason Tyler isn’t handling feeds at the same volume as last week. We’re hoping it’s just this sickness and that he’ll return to his normal non-vomiting, semi-feeding self soon. Right now we switched both boys to a slow, 24-hour drip gavage until they can handle bolus feeding again. This drives me CRAZY and I hate it hate it hate it! Grrr…where’s the normal?

Now for my paranoid mom-ness. I just hate seeing Parker in this state and it’s just hard to not think about what could happen if he really contracted some sort of virus. He still has chronic lungs and is under weight. I can’t help but think of one preemie mom whose blog I follow – she lost her 18 month old Madeline in April. On April 6th, Maddie came down with a severe respiratory infection - she unexpectedly died ONE DAY LATER, April 7th. The other preemie moms who are in my yahoo group were so devastated – this could’ve been any of our babies. The one thing people don’t get is that our babies have CHRONIC LUNG DISEASE, making any sickness a serious matter. Maddie was a healthy 18 month old who got sick like any other baby, ended up in the hospital one day and was gone the next. Her mother (also named Heather, go figure) was BEYOND shocked and devastated - she often writes about her continued grief. Her blog is: http://thespohrsaremultiplying.com/ It’s very worth checking out.
So, I must go put my stethoscope back around my neck and get downstairs. John has spread blankets around the front room for “vomit catching”. We have no idea how much vomit, urine, poop, Pedialite or formula is in our carpet – and I really don’t want to know. It’s enough to make John crazy – he announced that he will be cleaning the carpets post-sickness or next week, whichever comes first.

Okay, so this post was written earlier today (actually Wednesday afternoon) but because of Bubbie drama I wasn't able to publish the post until now - 2am! John and I have been up with the boys, trying to get them to stop throwing up and blowing out their diapers. Both boys are FINALLY asleep and that's where I am going too. So, I mentioned above that Tyler isn't having the terrible diarrhea that Parker has...well, scratch that! Tyler is about two days behind his brother and just began having the same stinky, blow out diapers. Fabulous! And he hasn't been able to handle his slow drip gavage so we've decreased the rate considerably. As a result, he's not going to get the best number of cals or hydrate as well as we'd like, but he's throwing it up so we really don't have a choice but get as much as we can in him. Ugh, so tired, must go to bed! What a nightmare...good grief!

Here is just a sample of our sick journey below – and it is SICK!

We Don't Feel Well!

A lot of time today was spent like this...both boys in pajamas (Parker had about 10 changes today because of throw ups and poopy blow outs), Tyler playing with his toys and bugging his brother, Parker lying down like a zombie (didn't even sit up all day), and both being entertained by Yo Gabba Gabba. Yes, we were terrible parents and remained sane only with help from the TV. I'm sure the boys SAT scores are dropping a point every minute they watch...right?

Parker: "It hurts to look at you, let alone smile."

Tyler: "This is the best I can do in the smile category."

Wednesday, July 29, 2009

Thompson's Home Nurse Program

So our new daily routine with G-tubes hasn't been estalished and with this sickness, we have yet to figure out what our daily "normal" will be. Syringes, inhalers and G-tubes - oh my!

Here's daddy hand-gavaging (via huge syringe) Pedialite into Parker's feeding tube.

Here's Parker's G-tube site. It was looking a little "goopy" after we were home from the hospital so we started putting ointment on the site.

Both boys are getting a couple doses of Albuterol twice daily because of their new coughs. With their doses of Flow Vent continuing, the boys are less than thrilled to extend their breathing treatment time. Mommy isn't so crazy about the idea either, but what to do? The Pediatrician thinks that Parker's cough is a result of his chronic lungs - asthma kicking in because of the illness.

Here are three of four stool sample vials - nothing but fun for daddy!

Tuesday, July 21, 2009

Happy Birthday Heather

I guess parents never stop being parents, huh? I had to post this beautiful cake my mother brought over today. I actually forgot that my birthday was today until yesterday when my mother reminded me! Good grief, have I been distracted? Anyway, I just love that even though I'm *&^ old my mother still provided a birthday cake - thanks mom!

Surgery...here we come!

Here we go...on our way to surgery! We had no idea what to expect and REALLY didn't think we'd be in the hospital for four days. In fact, prior to going in John said, "Maybe they'll be ready to go home on Saturday!" Ha ha...we had NO clue how involved the post-surgery would be or how hard it'd be to handle two one-year olds in the hospital. How do you get a baby to stop pulling at his tubes or reaching for his bags and pump? These curious little guys were VERY good but really challenged their mommy and daddy to the fullest! Ha ha!

Overall, the surgery went well and the boys are healthy and happy. In fact, since the surgery, Parker has eaten OVER his minimum orally and continues to eat crackers and purees! He DID NOT lose his oral ability and we have yet to gavage his feeds! Tyler has increased his minimums as well but still needs day and night gavages - but we see so much promise with him. I think the NG-tube was negative for him so with its removal, we may just see improved eating! We've concluded that the surgeries were positive and necessary choices. Whew...here's one for mommy and daddy!

Enjoy the surgery "story" below!

Tyler Pre-surgery

The ACU (Ambulatory Care Unit) pre-surgery waiting area was equipped with the two cribs that would become the boys "homes" for the next four days. In the cribs were toys and a book - nice as we waited for each of them to be taken into surgery.

Tyler was playing with daddy.
Tyler: "Ha daddy, I got your favorite hat!"

Tyler: "Wait, where'd everyone go?"

Tyler being amused by a Mickey spinning toy.
Tyler: "Hey, we don't have this at home - this place is alright!"

Tyler: "Is there something going on here that I should know about?"

Parker Pre-surgery

Parker had a "stranger danger" when we first arrived in the ACU. Here's grammie comforting him as he remains confused on whether he wants to be held or wants to play in the crib with the new found toys.

He's just not sure about this place.

Finally warms up to the nurses and waves "hi"!

His turn...ready to go!

Because Parker tends to be more shy and uncertain about people (not a bad thing) we had them give him a little sedative before they took him away. By the time the Anesthesiologist took him, he was VERY relaxed!

Tyler Post Surgery

Here's Tyler in the recovery room. He wasn't satting as well as he should so he got a little oxygen while recovering.

Taking a ride to our "home away from home".

Tyler was VERY flush for a while after surgery. We think it was the medicine given to reverse the affects of the anesthesia.

Tyler: "Daddy, what is this big white thing on my arm?"
That would be the wrapping used to prevent the boys from messing with their IVs. They later got "no no"s, little chin-guard-looking devices that were decorated with cowboys and indians that covered the entire arm - very cute.

Parker Post Surgery

Here's sleeping Parker in the room post surgery. The G-tube is being vented to allow excess gas to escape out of his stomach.

Mommy and Parky cuddling - he needs his momma!

Hospital Cribs and G-Tube Bolus Feeds

When John or I were in the room by ourselves we'd make sure the boys were protected by putting down the plastic "window" covering so neither could escape. I doubt he could get out, but Tyler would pull himself up and put his feet against the bar as if trying to climb out. If anyone could figure out how to escape, it'd be Tyler!

Parker: "Help me!"

Tyler getting a bolus feeding via his G-tube for the first time. Here's daddy holding the huge syringe up to help gravity take effect.

The gavage is "helped" along with the plunger to get it going!

Tyler: "Um, excuse me...this is a private matter - do you mind?"

How to Keep Babies Busy in the Hospital

Think about two one-year olds in hospital cribs for four days...what do you do with ALL of that TIME? Tick, tock, tick tock... Well, you pack A LOT of toys!

We brought a suitcase FULL of toys and books.

By day two Tyler was feeling better, you think?

Brother bubbies having a playdate. Sometimes we'd put them together and let them play. They didn't play together necessarily, but just being by each other made them calm down. It was very interesting to see.

We took a dozen or so books. By the end of our stay, I realized we needed at least three times that many! I was soooo sick of reading the same books over and over again. "Is Spot under the bed? NO! Is Spot in the piano? No Spot...not in the piano! Is Spot..." AHHHH! Go away Spot...just go away and never come back!
Don't I look lovely...can you say tired? I needed an IV by the time we left!

Who's Under the Blankie?

Amusing ourselves HOWEVER we can!

Who's the baby under the blankie...

...it's a Parky Pooh!

Parker: "Do I LOOK amused?"

Discharge Day!

Ready for discharge, the boys decide to have a playdate - I think they're planning a jail break.

Parker: "What, what are you looking at? We're innocent until proven guilty, isn't that the American way?"

Here's proof that they are getting back to "normal"...

Parker: "Hum...look at that duck rattle..."

"...I must have it now!"

Tyler: "Since you took my rattle I'll just have to take your Mickey spinny thingy - so there!"

First Day Home Post GT

Things are back to normal - just back to "work" reading books, playing around and crawling all over mommy and daddy!

Tyler studying mommy's watch.

Parker back to upside-down reading, his specialty!

Saturday, July 18, 2009

Surgery Is Done!

Yesterday was a LONG day and today is turning out to be longer! Surgery went well for both boys - they came through like champs. Tyler needed some additional oxygen support while in recovery, but besides that, all was as expected. John and I brought reading material (okay magazines, what can I say), DVD's and I even brought stationery to write letters! We thought the boys would be sleeping the entire day and through the night. Bwwwwaaaahaha! Both boys were up after recovery and played and fussed until they went down "for the night" around 9ish. THEN they couldn't possibly stay asleep with nurses in and out every TWO hours. What the...? After a few wing dings around midnight and 2am, I think I finally got some sleep. The chair-beds are less than inviting - I'm convinced they are created to deter parents from wanting to stay too long (I can't imagine people would actually like to stay here - ha ha). Thank goodness for my mother who brought us dinner last night and breakfast and lunch today. Not to mention helping keep the boys "entertained". Who in their right minds takes in TWO one-year olds for surgery at the same time? Only the insane like John and me.

Today all was well and we even put the boys in the same crib to "play". Their demeanor is noticeably more content when they're together. Then the Parker "drama" began! Parker's IV alarm went off multiple times, meaning there is something wrong with the tube (usually blockage or the tube is bent). His nurse was on break so the break nurse looked at the IV, tried to flush the tube and realized that the tube wasn't flushing. Rut ro! She opened up the bandages covering the IV and saw that it was almost completely out! Great, so it has to be replaced. She took it out and went to get the IV Therapist. While she was gone, Parker somehow got is foot caught in his G-tube tubing and pulled it hard enough to pull off the tape and pull at the tube (it hurt because he was crying). I had to grab him, unwrap the tubing, call for John because Parker was crazed by then and kicking around, and hope to heaven that he didn't do any damage. The nurse came back as we were huddled around Parker with "all hands on deck". She took over and re-taped the tube in place (on tragedy averted). When Parker's nurse came back on shift, she and the IV Therapist came in to replace the IV. OMGoodness - drama! After attempting, with no luck, to get the IV going in his other hand, they put it in his arm. After flushing it and taping up the entire arm, the nurse hooks him up to the pump and what happens? The IV alarm goes off again! The nurse goes to flush the tube...NO GO! It wouldn't work! She un-taped (with John now holding a hysterical Parker down) Parker's arm and tried to flush it, but it was a NO GO! ARGH! The IV Therapist comes back and this time they all go down to the IV room instead of trying to put it in bedside. Luckily his new IV went in first try (for the third time) and he was finally taped up for the last time. So a very tired Parker (poor little guy) and very tired Tyler (he had to listen to brother screaming and watch mom and dad hold down their brother) are sleeping soundly as their medication kicks in to high gear! I hope they have nice naps. Now if could take a nap I would but John's little cat nap he took this morning actually made him feel worse. The chair-beds are more tortuous than pleasure and comfort.

So that is our status. It looks like we'll be here until Monday - eek!
I am happily typing this in the Pediatric Computer Station that gives us access to the internet! Okay, I'd better go make sure John is still sitting with sleeping bubbies!

;o) I'll have pics to post later!

Thursday, July 16, 2009

Day Before Surgery

Well, surgery is tomorrow and we've now talked to the registrant (she pre-registered us), assisting nurse (answered questions we had about the surgery), Anesthesiologist (NPO to 6 hours rather than 8 because they were micro-premature), and attending nurse (called tonight and asked if we had any follow up questions before tomorrow). So we actually feel WAY more prepared than we did yesterday. John and I were feeling a bit anxious about what to bring, what to expect, where we'd end up, what the process will be after check in, etc. The attending nurse answered a lot of extraneous questions and assured us that they have these types of surgeries ALL of the time and are prepared for very active babies. What a relief - John and I feel much more calm about the schedule now.

Wish us luck, pray all will be well and we will chat with you later! I posted a TON of pics tonight so that should keep everyone happy for at least a week, right? ;o)

Parker looking cute!
Tyler looking cute!

The LAST NG-tube placement! Here's daddy checking for placement...for the last time! Mommy pushed the NG-tube through his little nasal passage and taped the tube down...for the last time!

Here is daddy shutting the ports on the new tube...for the LAST TIME!

Here's Tyler's sweet face with his newly placed and taped NG-tube...for the LAAAAAST TIME!

I'm not sure...can you tell I'm excited?