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!

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!

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?

The Last Snack - take 1

Boo hoo...I had to take pictures of Parker eating solids for the last time before surgery. I'm not sure how long it's going to be until I can recreate images like these again. One thing's for sure though, they'll probably still be wearing our ever abundant "Grandma's Little Latke" bibs. I'm not sure the boys would be able to eat without their bright blue bibs!

Here's John's good idea gone awry:

"I found these bibs that are PERFECT in size, shape, material...look less than a dollar each!"

Heather: "Grandma's Little Latke? We're not Jewish."

John: "That doesn't matter, the boys don't care! I'm gunna get them - we'll never have to buy another bib again! Bwaaaahaha!" (The evil laugh may be a bit exaggerated)

20 "Grandma's Little Latke" bibs later, the world became a better place for John Thompson.


Parker: "Hummm...here's one of those biscuit things."

Parker: "Right here is where I took a bite!"

Parker: "I think I got a little something caught in my teeth!"

Tyler: "Ha ha...this "eating" stuff is for chumps!"

Tyler: "This is where the bowl should be...on the floor!"

The Last Snack - take 2

Parker: "Now brother...if you throw ALL of your food on the ground, you won't have anything to eat!"

Tyler: "Wow, he really thinks I care, doesn't he?"

Parker Has A Shower

In my attempts to get Parker to eat solid food I’ve been trialing various textures and tastes. Last weekend we trialed sugar puffs. I was thrilled to find that out of the bowl containing a handful of puffs, only a few were left! He ate them all…I couldn’t believe it! Could there be turn around in Parker’s eating? Well, we eventually found the puffs…


What's that sticking to your bottom little man?

So that's where you were hiding the puffs!

We had a sticky "food play" day so daddy gave Parker his first shower!

Parker: "What is that scarey alien and why is it spitting at me?"

Parker: "I don't know what happened, but I don't think I liked it!"

Parker & Tyler Read

Parker keeping up on his reading! The book is actually facing the right direction for once - he has a knack for reading upside down!

Tyler thinks that if it's good enough for Parker, it's good enough for him! In fact, he's looking at two copies of the same book - "doubly" better, right?

This was just too cute - I pulled Parker's hood up and as much as he tried to get it off, it just fit too snuggly. Had to snap a pic of Parker the robber!

Surgery Is Here

So our official surgery date is Friday, July 17th - thank you John for your canny ability to convince people to do things - as a result the surgery "scheduler" somehow fit us in on Friday! Parker will go in at 2:30pm, Tyler at 4:00pm. The NPO isn't as bad as I thought it'd be - formula/food dc'd 8 hours prior to surgery, clear liquids up to 2 hours prior (Pedialite, clear juices, water). Not difficult for Tyler to have because we can gavage anything into him via NG tube, but I doubt Parker is going to drink any clear liquids. We may have a cranky-poo on our hands! We're going to "trial" some Pedialite before Friday to see how Parker takes it.

Today we saw our GI which ended up being a long, drawn out appointment - in fact, Parker actually fell asleep! Tyler gained slightly, but Parker really gained a good amount of weight, making the decision to place the G-tube a confusing one again. The GI began second guessing the decision and began discussing alternatives to try to increase his oral feeds. As my mind began spinning and heart aching, John nicely intervened and told her that we were convinced that placing Parker with a G-tube is the right decision because: 1) his growth has flatten two months straight; 2) he has a pattern of eating well one week, then doing poorly the next two or three; 3) although he is taking some solids, it's not enough calories to maintain a consistent weight gain; 4) with winter coming, both boys need to "beef" up to combat any viruses or bugs they may catch; 5) John goes back to work in August making July the ideal time for these surgeries. The GI's concern is that Parker is taking oral feeds and with the G-tube, they will more than likely go away. I was a bit emotional when I finally piped up (with tears intertwined) that I have spent the last month (or since our memorable Pulmonology apt) coming to "grips" with the fact that ALL of our efforts in getting Parker to eat are going to go out the window. THAT KILLS ME! BUT...I have to get over my selfish desire for a child that eats "normally" and understand that health is first - these first two years are VITAL growth years. John then asked her what she would do if Parker was her son - she responded, "I'd get the tube placed." Hello...why even bring up the challenge of not doing it? Just rip my heart out even more! This is already tough for me, I don't need to further question our decision.

I've recently been reminded that it's natural to have "visions" of what your children should be, what they should do. I knew when the boys were born, when my "dream pregnancy" was flushed down the toilet, that things were never going to be how I imagined them. I knew right away that we could have issues with their eating, their lungs, their overall health - I knew it! But when you see glimpses of "normal" you just grab them and hold on! Parker was going to eat like a "normal" baby - crave a variety of foods and maybe even act like he WANTS to eat! I'd pack fun kiddy snacks like goldfish, teddy grahams, cheese sticks and juice boxes when we went on trips. I saw it...I knew it was coming...the one without the tube... Not so fast, I'm reminded. Just because you see it that way doesn't mean it's going to happen that way. We all have a way of being knocked back into reality, don't we?

Anyway, we'll do our best to blog after the surgery and update everyone. I doubt we'll be able to blog until we're home again. I think we're staying at Sutter with the boys the entire time.

In the meantime...I'll post some "before surgery" pics before we leave!

Surgery is Coming!

Parker: "This doctor stuff really sucks...and what's going on with my hair?"

Well, the inevitable is happening, next week the boys will have surgery to place each with a G-tube. Our appointment with the Pediatric Surgeon was enlightening, to the say the least. We were relieved to actually KNOW the surgeon - he was the same one who performed Parker's hernia surgery in the NICU. I was surprised to see him because we were at a Sutter facility but his entire office services both Sutter and UC Davis - lucky us! I was concerned about straddling two health care systems, but with Dr. Marr on board, I feel confident that we can't go wrong. He is highly regarded by everyone with whom we've talked and from our own experiences feel like we can trust him with our little baby's lives.

We were surprised to hear that the surgery will warrant a 3-day hospital stay - yikes! Dr. Marr does not place G-tubes endoscopically, like others doctors. He has corrected too many "mistakes" that have occured with endoscopic surgeries with babies so he has elected to not do these procedures. He feels that the surgical G-tube procedures he performs are more successful long-term and will be helpful to the boys right away. Basically the surgeon will make an incision in the belly area, then make an opening into the stomach. He'll place the tube through the belly opening and into the stomach, then stitch the tube in place. A temporary outter tube will be placed until the area heals (much like a pierced earring) - about two months, then the boys will get the Mic-Key button in it's place.

The doctor is trying to get us in for surgery next Friday, June 17th and if that doesn't work it'll be Monday the 20th. We'd like the surgeries as soon as possible so the boys can get on the "healing train" toot! toot! before John goes back to work in August! I'm a bit nervous about spending 3 days in the hospital - of course it's not 129 or 143 days, so I'm not sure why I'm feeling anxious. I guess I'm just thinking of how active the boys are and how hard it will be for them to be confined. Also, they are so in tune and aware of me and John, I worry about them possibly waking up and us being gone - and if they're not feeling well, how sad! And of course there's the intubation - I'd rather not have that happen again! But all of that stuff is just not negotiable and we'll just have to deal with it as part of making the boys healthy and well!

I'll update you on the final surgery date, but for now enjoy some fun pics below!

Grandpa came for a visit - this picture of him with Tyler is just too cute!

Where are they playing now?

So our house isn't huge, particularly our main living area where we spend most of our time. This is the space holding all of the boys "equipment" and toys and where they spend their days crawling, rolling, walking around, and exploring. For a baby, I think the space is a good size, not so big that we can't get to them quickly but big enough to move around and hone those gross motor skills. But as much space as they are given, for some reason the boys always end up in most peculiar spaces!

What's that...a baby playing in the base of the saucer?

Parker: "What? I'm enjoying the composition of the inner saucer and many "levels of plane" in its' design. Is there a problem?"

Hello boys...are we trying to escape via the glass end table?

Tyler/Parker: "We plead the Fifth!"

And look where Tyler has been playing below....

Tyler and the Toy Box

Tyler has been climbing on everything lately - and grabbing anything he can reach from tables, shelves, etc. One of his favorite "grab" areas is the table between our two rocking chairs - lots of goodies there...remotes, drinks, a plant, lots of damage to be done! To get to our goodies...yes, a climb in the toy box is necessary. Interestingly enough, Tyler often gets distracted and ends up playing in the toy box on his way to reaching up to the table. The first time I saw this I thought it was a one time incident, not so much!

Daddy watching Tyler playing IN the toy box rather than eating his dinner - I think he's amused. Daddy: "Buddy, you have all of this space to roam and you are playing there?"

Tyler: "What...is this wrong or something? Why shouldn't I play in the toy box, the toys are in here!"

Rut ro...now do you see why? It was only a matter of time before the whole box tips over!
[good, looks like daddy is eating finally - caught us with our bad eating habits...eating in the living room]

Parker: "You know, they warned my brother over and over again, but he just didn't listen. I just dont' get it!"

Yankee Doodle Dandies!

The boys would like to say "Happy 4th of July"! This time last year they weren't able to celebrate ( heel stick blood draws, jaundice tanning, and secretion succtioning didn't allow time for fireworks and barbeque). Today they sported their first 4th of July shirts and really got into the spirit by watching a documentary on how America obtained its independence (no, they were NOT watching Yo Gabba Gabba in this picture, that would not be appropriate)!

Boys with their Pooh and Tigger balls they got from daddy!

Tyler creeping up on mommy!

Parker being thrilled about the 4th, can't you tell?

Boys Meet Cousin Olivia

Uncle Mikey and Auntie Velear came by on their way to the 4th of July festivities and introduced the boys to their cousin Olivia. The boys have never been around a dog before, so we weren't sure what the reaction would be...but we could GUESS! And we were right...

Tyler looks, is interested and thinks she's pretty neat!

Parker is totally freaked out...

...and we're done with the dog! Actually, he ended up warming up to cousin Olivia and even pet her after a while. This was not caught on film, but Mikey and Velear CLAIM it's true...hmm....

Okay, maybe it's true!

Parker: "If I stick my foot out first, maybe it'll divert her attention and my face will be saved!"