Friday, October 30, 2009
First Tyler’s endoscopy: This morning Tyler and John checked into the hospital at 6am (fun 4am wake up call) for an 8am procedure schedule. Unfortunately the doctor was running late so John and Tyler got to hang out and play for 3 hours! It’s a good thing I dressed Tyler in his Tigger outfit this morning – I thought, “Maybe they’ll take it easy on him if he looks REAL cute!” Well, Tigger outfit and all, they STILL had a hard time catching his veins and ended up sticking him 3 times before the nurse “team” decided to go for the foot – success, finally. Poor little guy had such a hard time the “toy lady” came over and gave him 3 toys for each attempt. Looks like we inherited more bath friends. So right around 9am the doctor arrived and took Tyler right in – well, John and Tyler. They let John hold our little Tigger until he fell asleep and then they pushed them both in the procedure room and then let John hand him off. John waited in his recovery room for about 10 minutes and the next thing he knew, here was Tyler! It was that quick! He finally woke up and John was driving out of the hospital parking lot by 10am. The longest part was waiting – isn’t that always the way it is?
Bottom line: Tyler’s GI track looked good, not obstructed. The GI doc did see little white dots along the track though – she thinks they may be allergy related. She took a biopsy and they drew blood to test for ALL allergies. We can’t wait to find out what he’s allergic to because we’ve suspected allergies for a while now but couldn’t put our finger on what he could be allergic to – he only takes a few drugs and the most elemental, hypoallergenic formula. We looked all over the internet to see if anyone has had issue with our formula, Neocate, and low and behold I finally found information. I found a conversation between mothers talking about their baby’s intolerances to corn-based formulas, which are ALL powdered formulas, including Neocate. DING DING DING! John and I immediately thought, “He must have this allergy, that’s all it could be!” So…we are crossing our fingers that this mystery will be solved and that PART of his problem will be resolved! After all, he still needs to eat! ;o)
Parker’s Anniversary: Happy Anniversary our darling boy! One year ago today Parker came home from the NICU! After his 129 day hospital stay, Parker was finally able to come home with his mommy and daddy! I remember how excited we were to FINALLY get to take him with us – we’d waited sooo long! We knew it’d be a challenge with his oxygen and multitude of drugs, but we also knew that he’d be better off at home with us. The only bitter sweet part of his homecoming was the fact that his brother was not being discharged. Tyler’s eating wasn’t on track (just the beginning) and his oxygen dependency was a little too high for release. So Parker came home alone and would be there as the ‘only child’ for 2 more weeks. Looking back at the video and pictures, I am amazed at how tiny he was – where the time go? He was such a little sweet guy who rarely cried and when he did, you could barely make it out because of his rough, intubation-damaged throat. In fact Parker still talks with a “husky” voice - very cute for such a sensitive guy.
Wow, I can’t believe it’s been a year! It seems like so long ago, but at the same time seems as though they just came home. I do know that I was in a “fog” for months after they came home – trying to keep up with pumping, their meds, feedings, oxygen maintenance. I think I’ve just recently found my brain again, but not my memory. I think that’s gone forever! What’d I just say? ;o)
So...BIG day at the Thompson’s today! And tomorrow will be another BIG day when the boys enjoy their first Halloween! Last year’s wasn’t so exciting with Tyler still in the NICU and Parker being one day at home. Tomorrow will be a fun time for my camera, that’s for sure! ;o)
Below are some pictures of Parker the day we brought him home. My video didn’t upload well because it was filmed in HD. As soon as I can figure out how to convert it, I’ll post the homecoming video. And immediately below are a couple of endoscopy pics - ewww! Enjoy!
Nothing like a little Tigger at the hospital to make people feel better. John said the nurses LOVED our Tigger Ty - they were gushing all over him! I just hoped they washed their hands before touching! Oink oink - no swine flu allowed!
Sunday, October 25, 2009
John: "Why are there so many pieces...I thought it was a "pop up" tent!"
Thursday, October 22, 2009
BUT the interesting news is that when discussing Tyler's non-eating habit, she agreed that further testing of Tyler's oral track was needed. She ordered an endoscopy with biopsy to determine if there is a physical reason Tyler can't eat. The procedure is out patient, but he will have to be put under for obvious reasons. The appointment is scheduled for October 30th. We're hoping that if something unusual is found, at least we would know what we were working with!
Yesterday Tyler and I went to UCD for swallow study evaluation. The Speech Therapist concluded that Tyler wouldn't be able to complete a swallow study because NOTHING is going down his throat right now. She said they have a hard enough time trying to get oral babies to drink Barium and she didn't see how we could do it and if the results would help us right now. We really need to wait for the endoscopy. The positive thing about our appointment and is that we've decided that both boys should come see the therapist for feeding therapy. We've been trying for months to get our current "rock star" therapist on board to see the boys, but insurance company "issues" are making it impossible right now. It's heart breaking, but I have to get some guidance and assistance or we'll NEVER make progress in their eating. So...for what I hope to be a temporary amount of time, I'll be driving the Bubbies to UCD weekly (or possible every other week when the weather gets icky). What to do but make do!
Below are some pics of the boys in their brown bear snuggly outfits, fitting them a little too well! They've almost outgrown them and winter hasn't started yet. There is also some funny video of them before we left for the appointment. It shows Tyler at his prime - Mr. "chatty, walky, bug brother, don't listen to mommy" brown bear baby! Parker has some cute smiley moments in here too! Enjoy!
Saturday, October 17, 2009
Tuesday, October 13, 2009
So last weekend we had a little park adventure that turned out to be quite an exploration for the boys and the perfect time-killer for mommy and daddy! ;o) The boys curiously wandered around the equipment and tasted the local bark, tripped and fell on multiple surfaces, and climbed on toy dinosaurs. That's a good time, wouldn't you say? We had to put shoes on the boys (yes, they just don't wear them in the house, go figure) which challenged their walking abilities a bit. They prefer "naked" feet and were periodically distracted by the big rubber things that attacked their feet right before we left for the park.
One of the "firsts" for the boys was going down a slide - yippee! There is video below of their first slide at the park! I will post some other cute video of our park adventure another time - it just takes too long for the videos to upload and three was really pushing the limit tonight! ;o)
Daddy and Bubbies take a break under the jungle gym - this playing stuff is tough work!
Parker's first slide at the park. See how SLOW he and daddy go down - it hilarious!
Tyler's first slide at the park, a bit quicker than Parker's because daddy learned from previous experiences - BUT...he goes down so fast he shocks himself! Tyler ended up loving the slide - no surprise here!
Parker's solo slide was not a big hit!
Monday, October 12, 2009
So John is trying to keep up with the constant activity and after Tyler's nightly puke-fest projected beyond our vomit-catching blanket, he pulled out the "big guns". Our made-for-home-use carpet cleaner came to the rescue! We thought the boys would freak out over the noise - and they did, at first. But in no time both boys were in the living room with daddy trying to touch the big machine. "Oh...big carpet cleaner!"
While John was cleaning out the machine, I snapped a picture of the boys attacking it - they were so intrigued. I wonder if this means they're going to be 'bigger is better' guys? Rut roh!
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Tyler: "Get your hands out of my mouth - this is a 'toys & things off the floor only' zone!"
Tyler now has 7 teeth - weird huh? He has four on the bottom, two incisors and ONE front tooth! Yep...that other front tooth is being stubborn! It looks like Tyler LOST his front tooth - his smile cracks me up! And what little nubs he has - I certainly hope they ALL grow in further or he'll have a really hard time eating...that is, WHEN he actually eats! ;o)
When I took Parker to the dentist (because of his grinding & chipped teeth) I asked him if getting your incisors before your front teeth was "odd". He said it was not a 'normal' thing and he wasn't sure he'd seen any patients with this occurrence. I told him BOTH boys got their front teeth AFTER their incisors came in, attributing that to their intubation at birth (the tube actually made a dent on the roof of their mouths - which has resolved). He said we'll never know "why", but their adult teeth should be as 'normal' as anyones.
Sunday, October 4, 2009
Well he's been on the cusp and I knew it was only a matter of days before he'd take that first step! Yes, Parker walks! He's been standing up by himself lately and watching Tyler walk around the house like he's been doing it his entire life. In fact I've seen Parker reach out like he's about to walk and then, plop! he sits down. Below is footage of Tyler taking a LONG walk (he's gotten so solid on his feet) and Parker taking a few steps to mommy!
And I promise that as soon as I figure out how to edit, I will "cut the fat", but until then they will remain posted "raw" - sorry! ;o) It's life at it's purest though, right?
Above video: Here is our expert walker, Tyler. He is so steady on his feet now - he actually prefers to walk now instead of crawl!
Above video: Here is Parker's little walk - it's just a few steps, but that's where they start, right? Don't blink or you may miss it - ha ha! Go Parker GO!
Thursday, October 1, 2009
So...if being near each other causes such grief, wouldn't they stay away? ARE YOU KIDDING? John and I are thrilled and amazed at the way the boys stick together. Even through all of the battles, they choose each other. The other day I called for Parker to come give me a hug, on the other side of him was Tyler, luring him in with cars and laughter. Who did Parker go to - yep, you guessed it, he went to his brother! Now mommy was shocked, but understood. Parker didn't need a kiss and hug at that moment, he needed his play buddy, his brother...and I LOVE that!
Brothers just hanging out!