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.




Tuesday, January 27, 2009

Mommy Photo Shoot



Today was another GI checkup and the PA and Dietitian were both thrilled with the boys progress. Both gained weight and they loved that Tyler is now taking all of his daily bottles - good sign! Few changes were made to our "plan" but that didn't stop them from continuing our weekly visits. This morning's 7am visit would'nt have been bad for me if Parker hadn't needed a 4am feeding for some reason. It always seems as though something happens at night, preventing a full nights sleep for the mommy. The previous night it was Tyler's gavage pump - twice! Grrr...

The boys had assessments done by an Infant Development Specialist a couple of weeks ago - she determines how often they need therapy and what kind of therapy will be useful (to help their development). We just received the report from the assessment and both boys are meeting requirements for 0 to 3 months and are meeting some requirements for 3 to 6 months. She requested therapy 3 times each month. So it looks like we'll be having weekly therapy sessions (which are based on "play", of course). No, she won't be bringing in a little baby "couch" for discussions...ha ha! ;o)

All else is wonderful - just watching my little Lovies grow! Below are pics from a photo session I conducted with the boys - poor guys! Yes, mommy periodically tries to get pics of the boys together - and getting them to smile and be happy about it is another story! Here is Parker being irritated with me!


"What's this picture stuff again?"
"Mom...is this REALLY necessary?"



"I am just beyond irritated right now!"



"Ya, I'm talkin' to you!"



Tyler Laughs



Okay, so here are some cute pics of Tyler laughing - I know, I know...you can't really get a "feel" for how cute it is. I've been taking a bunch of video but haven't found the time to learn how to download the videos and post them. I WILL eventually learn how to do it and then and you'll not only see but hear how cute this is!

Daddy is being WAY too funny!


Such cute little belly laughs!

Friday, January 23, 2009

Need Some Help :)

Okay, so this isn't necessarily directly related to the boys, but it is a problem that is draining my savings account that we're relying on to take care of the boys while Heather's at home. Is anyone out there (or does anyone know of anyone) looking to rent a condo? We own a rental condo that is sitting vacant that needs some good tenants. It's in west Roseville. A two bedroom two bath with fireplace that has a private garage with private entrance from the garage. It has new carpet and new paint as well. Call me if you know of anyone:) 916-257-1519. There's my gratuitous plug for the day:):)

Boys update: My courageous, heroic wife has been taking care of the boys full time all by herself as I have been trying to keep my massive head cold to myself. Going to work each day has been keeping them away, but when I get home I've been collapsing (and coughing up a lung) in the bedroom upstairs. So far so good on not spreading the disease, but poor Heather has been runnin' solo for several days now. The boys are pluggin' along enjoying story time and play time each day with their adoring mother. It's really very precious to watch them gaze attentively at her when she is reading the "big books" to them. They really are starting to take on individual personalities as well as starting to recognize when brother is getting attention and they are not:):) Ooohh it's only the beginning of the lesson of sharing.

Wednesday, January 21, 2009

Ty's Favorite Rattle

Tyler LOVES this turtle rattle, in fact he even falls asleep with it. I caught the cutest pics of him sleep-holding, that's a new one! Ha ha!


"No, It's mine! You can't make me let go!"

Park Obsessed!

"Hey I spy something over there!"

"I spy Sunshine...I LOVE the Sunshine rattle, it's my favorite! I'm gunna get it!"

"I think I can, I think I can..."


"Hum...maybe it's too far away? Rats!"
[So look at brother Ty in the background entertaining himself by chewing on his burp cloth and hands - fun times had here!]


Activity Time!

It's Activity Time! Activity Time happens right after "Reading Time" - and yes, they DO like Reading Time, in fact they are fully attentive! It's actually pretty cute because they look at the book with the BIG pictures and BIG words in awe - and have me convinced that they actually understand - ha ha!


Update:
It could've been inspiration from the Presidential Inauguration or just a "fluke" but Tyler began eating again yesterday! YES HE CAN! Yep, he actually ate at EVERY bottle feeding - not taking the entire bottle mind you, but he latched on each time! And today he took the entire bottle at every feed - yippppeeee! We thought we lost him to "the tube" for a while there - whew! The fact that he is eating 65 mls each feed is HUGE! Of course, it's still not enough to remove the tube. We are gavaging 260 mls over the night, which is a huge portion of his intake. The increased food has made such a difference in his weight - now 13lbs, 5oz (a huge gain). Brother Parker is 12lbs, 12oz (no longer heavier than Ty).

Both boys are growing so nicely and doing new things each day. It's fun to see them play in their activity centers and discover new items attached to it. Tyler is moving around like "no big deal" and is discovering the beads on the loop, rattle rollers and seems to love the mirror ("who's that baby in the mirror?"). Parker seems to be satisfied with still looking from a distance while chewing on plastic chains that we put in the tray. Too stinkin' cute I tell ya!

Well, the ENTIRE family has been sick - I mean VERY sick! We think the boys had a bug last week that I (mommy) got from them - I was sick the last two days and then last night, daddy got it BAD! You really have to pull out your LOVE and tenderness when caring for babies while feeling ill - it was sooo hard yesterday, but we still did our Reading Time and Activity Time. I was NOT going to let the boys suffer from my pain - but it took EVERY ounce of...motherhood? maybe?.... um, love... um, I'm not sure but I had to "pull it together" to get through. Luckily today I woke up head and stomach ache-free! Poor John spent the day upstairs with his "lucky pail" (hee hee) having a GREAT time! This just confirms how important it is for us to lay low and not have the boys out meeting new people. The doctors visits are tough on us because we are always the first in (7am appointments are our friends), but this keeps the "bugs" away (so we thought). The boys luckily had their third RSV shot last Friday and immunizations the week prior. They certainly don't need a flu or "bug" right now!

Enjoy the pics below as I go try to feed the boys some organic green beans (they are trying solids again, but only veggies - not cereal or fruit yet). I will have some green-faced little guys in about 10 minutes! ;o)



Parker is quite a "jabber box" and just talks and complains all day. It's hilarious! He's also started "motor-boating" with his mouth...he especially loves doing it when he's getting his medications - hum...clever boy!



Tyler has been such a smiley guy - "cooing" most of the time. His belly laughs are just adorable and for such a big boy, he's has the sweetest little voice. It'll melt your heart!


Monday, January 12, 2009

Tyler's Upper GI

This morning Tyler and I went in for his upper GI and OH what fun...NOT!

There are just moments when you see your child in pain and hear his cries - and for some reason you end up questioning every decision you've made. Unfortunately, today I had one of those moments. Poor Tybug's xray of his esophagus, stomach and intestines turned out to be a very long ordeal. His arms were stretched up by his head and then he was strapped to a board (pic below) at his head (with his arms on either side of his head), chest and legs. Now Tyler hates being strapped down in general, but to have his arms strapped up by his head was pure torture.

The procedure (with him strapped down) lasted about 15 minutes...that's 15 minutes of Tyler crying as they rotated him like a roasted chicken. After the doctor was done with his initial analysis, the nurse gave him a little more Barium (thank goodness he didn't have to drink it - she could just put it through his feeding tube). We then had to wait for 20 minutes, get an xray, then 15 more and another xray. What a hassle!

Bottom line though...we found out that Tyler DOES NOT have issues with his track! So I guess it was worth it because we now know that there is nothing wrong with the functionality of Tyler's body - which makes us convinced that most of his issues are the reflux. Not pretty, but at least we've come closer to concluding why he can't eat.


Tyler wore this little hospital gown - too cute! He thought it would taste like orange!

Here's the evil board with straps - you can see it's an octagon so they can rotate him at their leisure! The little black strap is a lead protector for Tyler's "parts". Cute, huh?



"Bubby" looks so happy right here...if only he knew what was coming! The paci DID NOT help by the way...he'd rather chew on his hands than suck on a paci!

Hi Brother!

Two neat things are happening here:

First, Parker is lifting his head up! Normally Tyler has the great head control but today Tyler was a bit tired (probably from his upper GI drama) and brother held his head up for a really long time. Just amazing to see!

Second, brothers are staring at each other! They usually don't acknowledge each other and barely look if you put them in front of each other. As they played and had "tummy time", brothers actually checked each other out for a little while!


"Hi Brother!"

"Okay mommy, enough tummy time already!"

Friday, January 9, 2009

Understatement

Friday Jan 9th

"........it could be a very interesting week" This is how I ended my last blog entry last Thursday. Little did I know that would be a complete understatement of how this week unfolded. As Heather wrote on Wednesday, Tyler not only had his NG tube put in on Tuesday, but also decided to add to the drama of the week by puking it up on Wednesday which prompted a trip back to the docs to have it reinserted. Well, he had so much fun doing it on Wednesday that he thought he'd do it again at 5:30 am on Thursday morning as well. We've decided that he just has a crush on the gals at the GI office and is creating reasons to go back in and see them :):) He's honing his flirtation skills early. So we pull the tube out completely, get him cleaned up and head back down to the doc's. Tyler and I spent a couple of hours getting a new tube placed and discussing the possibilities of moving to a G-tube which is the feeding tube that bypasses everything else and just goes directly into your stomach. The new NG tube that was inserted was a little bigger and weighs more at the bottom end (the end in your stomach). The hope is that this one won't be as easy to puke up.

So, home we came, in time to get ready to pack up mommy and brother and head downtown to the pulmonologist's office. This is where we received the good news......yes, you heard me.....we received good news.....and believe me we were in desperate need of some good news!!!!! The pulmonologist took them both off the oral medication they were on and.....here comes the good part.......took them off of oxygen during the day!!!! YEAH BABY!!!! No more oxygen except at night!!! It is unbelievable how much of a difference it makes. For example, I was holding Parker last night and remembered I had left the formula bottle out and needed to get it back into the fridge. I sat there trying to figure out how I would do it when I realized I could just get up and walk into the kitchen with Parker in my arms and put the formula away.....I didn't have to navigate around two fifty foot hoses or anything.....I could actually be mobile with him in my arms....it was incredible!!!! This is the jolt of good news we needed. We have just felt completely defeated for over two months. Every day we have been watching the boys take steps backwards not forward. Progress was just no where to be found. This was progress, this was positive, this was just what we needed. Today brought more throwing up by Tyler, but fortunately he has not thrown up the tube yet. He has also started gaining weight again. We're hoping the throw ups decrease and he settle in on the tube. If he does he can continue gaining weight which will only help the situation.

This morning's pediatrician appointment saw both boys getting four shots each.....ouch! Needless to say we have been nursing sore babies who now don't feel well. They are on Tylenol just cranky as can be. ".....an interesting week..." boy what an understatement. So I am officially predicting that next week will be a boring, mundane week that doesn't have any happenings other than growing thriving boys. Monday's trip to the hospital to get an upper GI series done on Tyler will probably not start the week off that way, but we can always hope can't we!!!!!

Wednesday, January 7, 2009

NG Tube Adventures


First...Happy Birthday Daddy!
Today is my honey's birthday - the big 41. The celebration is sort of like my 41st in July...non-existent! Between having two little ones to deal with and John working today, it was just another day. Poor daddy! Of course the boys were very good and remembered to send daddy some balloons and cookies! They were excited to have a first birthday with their number 1 HERO!

So...big news...the tube is in!
It seems as though John and I have been talking about Tyler's eating and potential NG tube for weeks. In fact we were just talking about the number of times we've "cried wolf" with the threat of a tube. Well, the inevitable happened yesterday when a feeding tube was received by a weight-losing Tyler. Poor little guy - it was visions of NICU torture rearing it's ugly head as they shoved the tube down his nasal canal! After the tube was placed, John and I immediately saw how poorly it was taped and said, "We need extra tape because he'll pull that out in seconds!" 143 days in the NICU told us this!

So Tyler is now being fed 21 of 24 hours each day. This first week the goal is to get FULL feeds into his body - 630 cc's/daily. My concern is Tyler not taking daily bottles - I don't want him to forget how to suck and feel hungry. So we will be giving him a bottle at the beginning of his feeding "shift", after his three hour break without food. Hopefully he'll feel hungry without the drip and will take some food orally. He should immediately begin to gain considerable weight and hopefully we'll be able to incorporate more oral feedings next week.

Well, our biggest fear with the tube is Tyler pulling it out, causing daily visits to the GI office to have tube re-inserted. Well, we did have to go back into the GI's office today to get the tube re-inserted because Tyler PUKED it out today! Yes, the poor little guy had a HUGE puking episode and "woop!", out came the end of the tube, right out of his mouth. It sort of looked like that spaghetti trick where the piece of spaghetti is blown up your nose and coughed out through the nose canal and into the mouth. I HAVEN'T done this, mind you - I've only seen it on trashy TV! Ha ha! But basically both ends are showing, one out of the nose, the other end coming out of the mouth. If I weren't so concerned over the puke everywhere, it would've been quite a picture!

So Tyler is on the REAL food train now - getting all the food his little stomach can take (without puking hopefully). Even though having the tube is a pain in the rear, the benefits are enormous - one being that Tyler doesn't need to wake up at night to feed! So basically he can sleep through the night, should he choose. In fact, last night Tyler slept for 8 straight hours! Holy...that was awesome! Of course it would have been even better if John didn't have to get up three times to cancel the pump alarm and unplug the feeding tube. Yes, there IS a learning curve with our new "toy"! Well, to make matters better (for me), John also got up with Parker last night - BUT I got 6 hours of sleep night...all in row! That RARELY happens and was sooooo appreciated! zzzzz....

So tomorrow is our Pulmonology appointment and Friday our physicals and immunizations. Doctors, doctors and more doctors! Below are some pics and a little Parky news! Enjoy!
Here's the backpack that holds the feeding bag with formula and the pump. It's VERY mobile, which is good considering we have to take it with us to his doctor's appointments.

So this was yesterday's taping job - today it is taped completely back over his ear and down his neck. No pulling the tube out Lovie!



There's Park sleeping in the background - what a good boy! So Parker quit eating the other day - perfect, right? The GI suspects he's plugged up from the high cal specialty formula so we ('we' as in John - ha ha) gave him a suppository and are putting Mirolax in his food. He is still not eating regularly and yesterday I took him into the doctor because there was dried blood in his ear. The Ped said it wasn't an ear infection and that the blood was probably a scratch. BUT he did take a couple of xrays and noticed that Parker was breathing a little rough. Sure enough the xray showed that Park was a little "backed up" and has a little chest cold. So we are going to give him Magnesium Citrate to fully uncork his back up and started Albuterol breathing treatments with a nebulizer. Good grief! All we need is MORE medicines and treatments to juggle - smile! But overall the little snuggle-saurus is fabulous!


Thursday, January 1, 2009

Acceptance

Thursday Jan 1'st

There are just certain things in life that you have to accept. There's a fine line between battling something in hopes of changing it for the better and realizing that some things cannot be changed and thus must be accepted at face value. Whether or not Tyler needs an NG tube (or feeding tube) is the current paradox. Are we battling something that is inevitable, or will our efforts avert the challenge. We had our visit to the GI specialist on Wednesday, and the news was less than stellar, yet we still don't have the tube. On Monday both boys had lost weight. The Christmas week transition was really hard on both of them. "Try 100% of the new formula instead of a mixture of new and old and raise it back up to 27 cal. Then come back in on Wednesday...." This was the last directive. Parker is the good news. He seems to be getting back on track. We were pretty much discouraged since Parker had been gaining weight just fine. He was refluxing badly, but at least gaining weight. We changed his whole feeding regime in an attempt to control his reflux and pretty much destroyed what eating success he was having and he lost weight. Well, from Monday to Wednesday he gained two ounces!!! He finally adapted to the new formula and seems to be back on track to gaining good weight. We had hope for this since we saw his feeds increase over the two days. Tyler was another story. His feeds took a dramatic decline. Partially due to a new philosophy (or acceptance I should say) on feeding I adopted. I simply decided to stop force feeding him. Watching him literally claw at my hands and his bottle and physically writhe about trying to stop me from forcing the nipple into his mouth just became too much for me to bear every three hours. Three weeks of this and we were still not getting the results we needed. So I adopted acceptance. I accepted the fact that he would need an NG tube and began focusing on the positive attributes that would accompany the tube. It's actually really interesting to look back at the past six weeks since he's been home and the attitudes/philosophies of all the docs/specialists with regard to the tube. We currently have 8 doctors/specialists involved with the boys. Our pediatrician seems ready to go there and has been for some time. He has been great about allowing us to try different approaches in hopes of avoiding it, but is always ready to advocate for it (not in a bad way at all.....he really wants Ty to thrive and not struggle). On the contrary the feeding specialist, the dietitian and now the GI specialist all seem extremely reluctant to go there.......as we have been. For us, this changed on Monday. I simply stopped forcing the feeds and decided that his need for positive experiences would now be the focus. I let him latch on and feed until he pulled away. I'd give him a break and then spend about 15-20 minutes gently trying to coax him into taking more. No longer would I spend an additional full hour forcing the issue. Sometimes he'd take a little more, but for the most part he was done. I did this for a day and a half and sure enough saw his total volume decrease. So I spent most of Tuesday mentally preparing myself for the inevitable. We would go in on Wednesday morning, see a weight loss and accept the tube. As with every thing else, we would adapt to this new circumstance, focus on the positive aspects and move forward. The negative aspects that come along with the tube would just have to be dealt with and take a lower priority to his extreme need to gain weight. By Wednesday morning I was finally at ease with the situation and ready to move forward. He didn't lose weight. He didn't gain any, but he didn't lose any either........so what now.......well......there is no tube.....yet. The latest strategy is to up the formula once again, to 30 cal / ounce and to add in MCT oil. Yup, that's right. We are now giving Tyler oil in an attempt to get his total cals up. If his total volume is low then we will maximize the cals in that volume and see if it will put weight on him. We have two priorities to consider. First and foremost is to do whatever is necessary for the best health of Tyler. The GI still believes he is not in any danger. He is still in very good overall health. The second priority is to not go back to the constant battle and torture (for lack of a better term) of trying to force feed Tyler. It's just too taxing emotionally and we simply can't physically do it. I go back to work on Monday and Heather will not be able to spend that much time engaging in a futile battle. This new strategy allows both of these priorities to be met, while still avoiding the tube. So we go back in on Monday to see how this latest strategy has fared. So far it seems to be working okay. We'll see if he gains any weight though. The GI summed it up fairly well....."if we do need to put in the tube we can do it no problem, but at least we'll know we've tried everything else first". With three different doctor's appointments scheduled for next week (the GI specialist, the Pulmonary specialist and the Pediatrician's full physical and immunization shots) it could be a very interesting week:) Here's to hoping that 2009 brings much better developments and that our two little heroes start to thrive!!!