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, June 28, 2009

Happy Birthday never felt so good!

Tyler on daddy's lap!

Parker with mommy!

So it’s been a week since the “Tribute to Tyler and Parker”, AKA the “Bubbie Birthday Bash”. I think this week was the busiest ever, not giving me a lot of time to reflect about our year, which was fine, actually. First I’ll regale you with the results of our multitude of doctor’s appointments, then I’ll sum up the birthday bash.

M.I.N.D. Institute – 1 year evaluations
Tuesday the boys had their assessment with the M.I.N.D. Institute – a UC Davis affiliate where they test and refer services for babies who spent time in their NICU. Both boys were tested by Pediatricians – fine & gross motor skills assessed, as well as language, problem solving & physicals. The boys did well – Parker did exceptionally well on language & problem solving, scoring into his actual age (the doctor was impressed). Tyler did very well on his gross motor skills – not surprising since he’s almost walking! Parker was average on his gross motor skills, while Tyler was low on language and problem solving – but I question the tester and the WAY she presented to him. When I asked John specifics on what Tyler didn’t do, it sounded like he wasn’t prompted the right way – he can do most of the required skills, I’ve seen him in therapy and at home. Tyler has been referred to an ENT (ears, nose, throat doc) because of his scores (possible hearing loss?) – which ultimately doesn’t hurt anything. I just wonder if they looked at the evaluations from the Developmental Therapist – I brought copies of their latest assessments showing that Tyler CAN “peek-a-boo”, pull objects from a jar, grab ½ covered objects, etc. We’ll see what results from the ENT. The boys will return to the institute for an assessment in 9 months, then 9 months later. If at either of these assessments they see a need for a service/medical follow up, they will refer at that time.

Physical Therapy (PT) – First Day
Tuesday was also the first Physical Therapy (PT) appointment. Parker was a BIG pill and cried the entire time! Poor Darlene, the PT, was trying to push through and continue his therapy even though he was “bubbing” the entire time. Finally I got him and passed on Tyler who of course was fabulous for her and did well. I hope this week will bode better for Darlene and Parker’s relationship – it did take him a few weeks to get used to Danielle, the Developmental Therapist. Now both boys love playing with Danielle and show their “true colors” – good and bad! Ha ha! I hear her sweet voice now, “Tyler, you have to sit for this game, you can stand later!”

GI – Lost Weight
Wednesday was an appointment with our GI. Both boys lost weight, so Tyler is getting an increased volume during the day to “beef” him up before G-tube surgery (we’re going to gavage the difference). We discussed the surgery consult for Tyler on July 9th and besides increasing his feeds, we’re not making any changes to Tyler’s food. Parker hasn’t been eating well and there always seems to be an excuse – teething, his cold, teething, etc. We are going to try to a new formula that is dairy based– the GI says it tastes better than his elemental formula and it may increase his feeds. Right now his reflux seems better so we’re hoping that his stomach and reflux can handle a dairy product. We were going to start the new formula right away but Parker caught a terrible cold and is snotty and coughing so we’ll start it when he’s 100%. This will allow a better trial of the new formula.

Pulmonology – Revoking our “Good Parenting” Award
Well, remember a few months ago when I told you about our fabulous appointment with the Pulmonologist? He said John and I were doing a fabulous job and ask me to create a month-by-month picture comparison of the boys – ring a bell? Well, this is the same doctor who nearly accused those SAME parents of starving their children! Yes, the boys have lost weight but we are seeing a GI every two to three weeks and she has been tracking their feeding/weight. The Pulmonologist came in with a disappointing tone and told us that the boys have not grown the last two months and should have gotten G-tubes a long time ago. He said they should be in the 75% in weight and that we are stunting their brain and lung growth. We told him about our consult with Dr. Marr for Tyler in July – he told us he would send over another referral for Parker because he also needs a tube. We were in shock, to say the least. Not because we don’t believe him, but because we’ve been seeing the GI who had us convinced that the boys weight was “marginal” but that we weren’t doing any damage! If we EVER thought their weight was hurting them, we would’ve gotten G-tubes a long time ago! The Pulm doc made it sound like they needed tubes months ago and we’ve been dragging our feet to get them. HOLY! So, I called the surgeon the next day and scheduled Parker to be seen at the same time as Tyler. And sure enough, Parker is sick again and not taking full feeds. Yes, a G-tube would help us feed Parker – we get it.

John and I are sooo frustrated. We ONLY want to do what’s best for the boys and to have conflicting information from doctors is confusing and maddening. We now agree that both boys should get tubes, but until this point nobody has pushed us to get them! How are we supposed to know “when”? I’m sorry, what’s my history with micro-preemie or infant eating issues? Motherhood – one year. I research as much as I can, but the bottom line is we trusted that our doctors would inform us appropriately – isn’t that right? Guess not!

So, it looks like we are going in for a double tubing. We didn’t see this one coming. It’d better happen in July because I hear that it takes 2-3 weeks for the site to heal and not hurt anymore. I really don’t need to deal with two bubbing bubbies! With John home in July, that really is the best time to do it. Okay, frustrating topic over.

Birthday Bubbies!
So the boys had their BIG celebration on Sunday (21st) and over 70 of their closest friends and family members came by to see them. What a party! I think most everyone came right at 3pm because I was in the walkway into the heart of the house and John was near the doorway yelling to me, “Keep everyone moving forward! Tell people to go outside!” I was chatting with people coming in, clogging up the flow apparently. It resembled a wedding receiving line – gotta love it! It was so nice to see folks I hadn’t seen in over a year. And for some people, they met the boys for the first time. Poor Parker was immediately overwhelmed and wanted mommy every time he saw me. Then there was Tyler – Mr. Easy. Below I posted pictures of Tyler with a myriad of people – I think “Where’s Tyler?” was the norm that day. He loved every bit of the attention and being passed around was like playtime for him.

I must THANK my Aunt Teresa for “sponsoring” the fabulous tribute, Helen Whitelaw and Natalia Bedes Correnti for working their TAILS off throughout the party (they didn’t stop working - machines I tell ya), and my cousin Katie Rose and my mother for working on party prep days before the celebration. I just couldn’t do it alone and they were my heroes!

This year has been surreal for me and in many ways, I’m not sure I’ve fully recovered. The old, healthy Heather has yet to show her face. As I strive to gain “control” over the boys continuing health issues, I find it hard to get control over my own. Sometimes I feel as though I’m just spinning my wheels, not getting very far. I think back to this time last year and it’s hard to remember the details because I was so exhausted, scared and dazed. I’m not sure if the numbness of the year has fully worn off. I do feel blessed that these two amazing little boys are in my life, no matter what the circumstances were in getting them. They are worth any pain I had to endure and all sacrifices made - none too grand. I look forward to a new year and new beginning for me and the boys. Here’s to a year filled with progress, success, and a lot of love!

Thank you to everyone who was with us this past year – making meals, watching the boys so I could shower, sending gift cards for baby stuff, dropping us emails & touching base, and just being there. I can’t fully express through this vehicle exactly HOW much it all meant to me (& John). Please know that THANK YOU doesn’t fully convey how truly grateful we are!

Enough already – here are some fabulous pictures of the boys first birthday celebration! What a tribute to the boys!

Birthday Stuff

Between cousin Katie and the Crutchfields, I think every aspect of the Bubbie Birthday Bash was photographed. If you missed it, which is probably unlikely, here is a pretty good play-by-play of the celebration!

The LOVE CAKES where made by mommy, decorated by cousin Katie - green for Parker, blue for Tyler! Love cakes for the Lovies!

Our funky cupcakes turned out to be pretty colorful and very tasty!

Being challenged by John to do something productive with the boy's empty Gerber food containers (besides throwing them out), I filled them with personalized M&M's. I think they made good party favors (until someone spilled their lemonade on them - any confessions?)!

"Goodie Pales" were given to those in Elementary school and below - filled with snack packs, monkey balls filled with kisses, and a sea creature. Tyler and Parker wanted to make sure their friends had a special treat and felt "thanked" for coming to celebrate with them!

Time to Sing!

Singing "Happy Birthday" - boys don't know WHAT'S going on!

Tyler loves the singing!

Tyler curious about the lit candle!

Parker doesn't know WHAT to make of the cake!

Dig In!

Time to touch the cake...

Parker is curious...

...decides the plate is more appetizing than the cake!

Daddy giving Tyler some encouragement, "It's okay buddy, it tastes good - really!"

Opening Gifts

Mommy and daddy helping bubbies open some gifts!

Ty sporting a Cowboys "pimp" hat (thanks Auntie Karla)!

Pouty Park

Just too busy to bother with people right now!

Family Party Fun!

It was such a blast to have all of our family and friends with us to celebrate! Here are some great family and friends shots below - everyone enjoying the celebration!

Grammie with all of her 8 grandkids!

Uncle Mikey videotaping the happenings (& daddy giving a testimonial)!

Uncle Brian, Auntie Christine & Great Uncle Bill (& I think I see some crazy woman behind Christine in the shot too - who is that?)!

Auntie Kristin and Uncle Bob (the creators of the birthday video)!

Family & Friends

Where is Tyler?

So it's obvious who the social butterfly was during his birthday celebration...the pictures say it all!


...with Auntie Ali (ah, snuggles)...
...with Cheryl...

Where's Ty?

...with Brock (eek - the faces says it all)

...with Lauren...

...with Jen...

...with Janelle...

...or with Mark?

I'm sure if everyone gave me their film, I'd find MANY more pictures of folks with Tyler!

Thursday, June 25, 2009

12 Month Comparisons

I compiled these one-year comparisons for our Pulmonologist and I'm glad I did. What an amazing example of growth! If you click on the individual images, you should see the full-page version. This is a good summation of their year!

Tuesday, June 23, 2009

Happy Birthday Bubbies!

Yes, today is Tyler and Parker's OFFICIAL 1st birthday! I would love to reflect on the year, but will have to do it later - go figure! Today was FULL of doctors, xrays and PT - more on that later. Right now I have to go to bed because we have GI at 7am tomorrow which means a 5am wake up for us, but I HAD to acknowledge the official Bubbie B-day!


Monday, June 22, 2009

Happy Father's Day!

Father's Day was incredible not only because we celebrated John on his first Father's Day, but also because the bubbies had their first birthday celebration as well! As you can imagine, I'm absolutely exhausted and still recovering from the 70+ guests so I have not posted party pics yet - but they are coming! Until then, I just had to share this fabulous scrapbook page my sister-in-law, Kristin, created for John. I don't know if you can tell but the letters spelling "DADDY" are photos of the boys (click on the picture and it will enlarge so you can see it up close). So VERY creative! And to add to her fabulousness, she created a video of the boys using pictures from their first year of life (I'm sure my brother-in-law, Bob, helped as well - uh-hum)! I will see if I can figure out how to download and post the video. What SUPERB, cherished gifts!

Friday, June 19, 2009

Makeup Bags and Party Prep

When doing my makeup while sitting on the floor with the boys, I quickly realized how "popular" my black and white makeup bag was - the boys would swiftly crawl or roll over to grab it and then proceed to fight over it, passing it back and forth. Having multiple "gift with purchase" bags tucked away, it was no big deal to part with a couple. I put two bags in the boys toy basket and sure enough, what's the first thing they go for upon discovery? Yes, my makeup bags. I think it's hilarious! John assures me it's because they are black and white! ;o)
Parker does have the remote in his hand in this picture, so obviously my makeup bag ranks #2 on his list!

Party planning for the boys 1st birthday party is underway and the boys (& wonderful family members) are helping with the preparation. Here are the boys helping with signage!

Party Prep In Action

Grammie making a wild cupcake!

Cousin Katie working on Tyler's cake - no pressure!

After a long day of back bending cupcake decorating, we're still smiling!

Parker had snack of Go-gurt and biscuit while watching cupcake decorating!

Tyler, with his wet drooling face, was such a good boy and played in his highchair the entire time cupcakes were decorated.

Thursday, June 11, 2009

Weekly Fun Pics

Tyler: "I think I misplaced something...hum..."

Note Tyler's pants (that he walked out of) on the floor behind him!

Parker: "Only my brother could lose his pants!"

Tyler: "Helllloooo! What's going on up here?"
Parker:"Excuse me, did I interrupt YOUR meal? Mom....!"
Tyler is pulling up on everything - he just won't stay down. He's all over the living room - and unfortunately loves the garbage can. Gotta start watching this one!

Parker doesn't seem thrilled about his first visit to Joannes, even though we were shopping for the Bubbie celebration. A good thing is that they're small enough to fit in the front seat of the basket, each in his own leg hole. Too stinkin' cute!
I'm not sure John has ever been in a Joanne's before - he couldn't believe the huge checkout line. Hey, those ladies are serious about their crafts and sewing...don't mess!

Thursday, June 4, 2009

Week of Docs

This week has been full of appointments: GI on Tuesday, Feeding Therapist with Parker on Wednesday, and Developmental Therapy on Thursday. It's amazing how these "simple" appointments drive an entire day. Since when did ONE appointment change everything about how you function all day? At work I'd squeeze in meeting after meeting and go to my own appointments in between meetings! Now just one appointment with the boys alters nap times, feeding schedules, mommy's semi-workouts & shower attempts - from the time we get up to the time the boys go to bed. I find myself saying, "He's just not himself today because of that appointment". Nice excuse, right? So here's a summary of outcomes from our appointments:

GI on Tuesday: Parker gained weight and height, coming in at 16lbs, 60z & 27" long. Tyler again LOST weight and gained height, coming in at 17lbs, 6oz. & 28" long. So the boys are exactly one pound and one inch difference. Parker is doing well and with his feeding evaluation the next day, conversations didn't focus on Parker. No, Tyler became the focus on this trip. It wasn't a huge surprise that Tyler lost weight - his face looks thinner and his feeds are not up to par. He's only been taking an average of 115 cc's/day - he should be drinking about 550cc's (or more) by mouth to be on course. We started adding MCT oil back into his feeds, but it didn't make enough difference to help him maintain or gain weight.

G-TUBE: In talking to the GI, we decided that it's time to move to the G-tube. The inevitable has happened. A Gastrostomy Tube will be surgically placed directly into Tyler's stomach through the abdominal wall, allowing us to feed him similarly to how we do now, but through more permanent means. He will come out of surgery with tubing sticking out of his stomach, but after 2-3 months we will be able to switch it out for a Mic-Key Button (or a similar button system). Website http://www.mic-key.com/ provides a lot of information - what the button looks like and how it is maintained. The GI is referring us to the surgeon and we should have a consult in 3-4 weeks with surgery happening shortly thereafter. We're hoping for a July surgery date so Tyler can heal when John is home. We hope that by removing Tyler's NG tube, his oral aversion and reflux will dissipate. I've heard other micro-preemie moms talk about the NG causing irritation to the face and aggravating reflux, which is why they switched to a G-tube. My crazy hesitation with getting the GT stems from hearing about babies with G-tubes who are now 2, 3, 4+ years old who STILL have them! But I have to conclude that Tyler's feeding future isn't going to be more severe from the GT - this feeding journey is going to be...what it will be...ours to live and from which to learn. But we can help his reflux, oral aversion and aggravation by opting for the surgery and that makes sense. So my breathe will be held, but with excitement that Tyler's little face will no longer be filled with skin tears and red sores from taping and aggravation - and the trauma of having the NG replaced (by mommy and daddy) every week will be history. We'll let you know how it goes, of course!

Feeding Therapist: It was Parker's turn to visit the Feeding Therapist yesterday. He did really well taking his bottle in front of Camille, our therapist, and even took a biscuit and sucked on it for awhile. Camille was very happy with Parker's progress and has high hopes that he should be able to move into solids. We will be continuing food play but adding whipped cream from a can and various nectar drinks for taste. As soon as he gets used to the taste of the nectar, we'll add some duocal (extra calories) and give it to him in a bottle. We're also continuing with biter biscuits and will be trying to give him small pieces of soaked cake or bread. The key is to expose him to different tastes and textures with hope that his palette will expand and accept solids. So mommy's food play work is not done - ugh! As long as they progress, what does it matter, right?

Developmental Therapy: Both boys had their 45 minute therapy session with Danielle, their favorite therapist. Parker did VERY well and completed some more tasks on the assessment: claps hands, waves hi/goodbye, pushes a lever to make an animal pop up, and mimics certain sounds. He practiced crawling and tummy time and worked on finding hidden objects. Tyler was a little hyper today and I heard Danielle say, in her sweet voice, "Can Tyler sit for a while? Tyler, can you sit? Let's sit Tyler!" But his report was positive as he practiced "give me" concepts, overcoming obstacles to get to an object, responding to his name during an activity, imitating mouth movements and waving hi/goodbye. She agrees that Tyler has figured out how to ignore - if he's busy, maybe he'll glance at you, but won't give you more than that. Little stinker!

PT & OT: The boys had their physical therapy evaluations a couple of weeks ago but we haven't heard when services will begin. Danielle just told me that our contact at Alta Regional is gone, so no one has followed up on their services. And at Parker's feeding therapy yesterday, Camille mentioned that she's recommending an occupational therapy evaluation for the boys as well. I guess at PT, the boys will work on motor skills, coordination, etc. OT will work on sensory issues. Interesting that Camille asked about their sensory because I was just talking to John about how upset Parker gets when he hears loud noises - and was also mentioning how hyper Tyler has become lately. According to Camille, these may or may not be sensory issue related - a lot of NICU babies have "residual" effects of being poked and prodded & exposed to loud and continual noises. The ISSUE we might face in securing these services is the fact that Alta Regional is funded by Federal AND State government. I've already heard rumblings of services being cut because of our lovely budget "situation" here in CA. What timing! No more taxes? Well then, no more services! I hope we aren't the ones to suffer, but only time will tell!

Okay, now fun stuff - random pics below!

Fun Random Pics!

Tyler: "Yo! Whazup?"
Parker: "You talkin' to me?"

Classic Tyler kicking Parker! I can't leave the boys for a second while sitting less than 4 ft. from each other and not come back to Parker screaming and Tyler wildly kicking brother's head!

Boys are enjoying new toys from Grammie - two new "push" toys! They of course must play with the SAME thing at the SAME time - wouldn't be fun any other way, would it?

Food fun - not fun for mommy. Anyone want to help with clean up? Note the sheet under the boys - yes, I am a learner!