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.

Monday, September 1, 2008

Busy Busy Busy

Sept 1 10:15 pm

What a whirlwind. The last two days have seen a lot of action in the Koala room. Yesterday's pics showed nurse Allison's "trapeze" device that was holding up Parker's intubation tube. What we didn't tell you was why......we didn't want to say anything until it actually happened.......today was a milestone.......today we heard Parker's hoarse little voice for the first time in four weeks and two days......yup you guessed it.....today Parker got extubated!!!! You see, yesterday the doctor came into the Koala room and told Allison that he'd like to see Parker's O2 down to 40% for his extubation today.......Allison's reaction was a very justifiable laugh out loud. Parker had been camped at 50 and above for quite some time.....we had seen some times of dropping into the mid to upper 40's, but when the doc said it, he was at 55%. Well, call it what you will, but within a couple of hours Allison had him down to 40%. Her trapeze helped, but she said it was basically him responding to what the doc said. Either way, when we got there today he was sittin' pretty at 38%. The extubation was on target for 2 pm!!!! The bad news was that Tyler had taken a step backwards which resulted in him being put back on CPAP:( This meant that once again the boys would be in the exact same boat.....both on CPAP......life in the NICU.....you never know what's going to happen. Tyler was simply not happy, but more on him in a second. Parker had his tube taken out just after two o' clock and for a brief second we got to see his face completely unobstructed by ANY tubes whatsoever....it was pretty great to see his face for the first time!!! Pics below. He spent the rest of the afternoon trying to adjust to the CPAP device which is really poorly designed and exceptionally frustrating. There are pics below to get a better visual. The problem is that the device is supposed to align perfectly over their nose and stay aligned. If it shifts at all, the rigid cannula dig into their noses and cause a tremendous amount of pain. THEY DON'T STAY PUT......THEY CAN'T POSSIBLY STAY IN PLACE....they are really not designed well. Any movement from the baby causes it to shift.....sometimes just a little which they can handle, but most of the time it moves a lot. Once it moves it loses the seal that it has to have to remain completely functional. When sealed properly a canister of water that it is hooked up to will bubble. It makes it really easy to see and hear if it is working properly.....or in the case of reality....when it isn't functioning properly. So you are constantly having to readjust it because it's not bubbling, because it's not sealed, because it's a piece of crap! Okay so I'm clearly venting a little here, but it's really frustrating. I feel so incredibly sorry for the nurses. They have to constantly keep adjusting the device which really upsets the baby and causes them to cry and thrash about which just exacerbates the problem further. Now imagine a nurse having to deal with both boys on CPAP simultaneously! I found myself completely tense and stressed the entire time....it was the rare occasion that they both had a moments peace and the nurses are dealing with this for twelve straight hours. Well that brings us to Tyler. He was completely miserable the entire time. Crying a lot and in real pain. After changing the cannula to a different size in an attempt to get a better fit it became evident there was a problem. Allison noticed that it had already started breaking down poor Tyler's little nose. Thankfully she called the doc. Thankfully he agreed to put Tyler back on the old style CPAP (see pics below). They have their own little issues, but it was simply a much better fit for Tyler. He was able to actually calm down a little bit and seemed to at least tolerate it. When we left they were making some further adjustments to it so that hopefully nurse Kathy can help him get some sleep tonight. We'll see. All in all, Heather and I are thrilled that Parker is off the breathing tube!!!! Let's hope it is for good this time:):) It is strange, but it seems that both boys are at the same developmental place??? Life in the NICU.....we'll see what tomorrow brings.


MooseMom said...

We are keeping you ALL in our prayers! So thankful for the (almost) daily posts on their progress... I'm sure it is a hassle for you to post, but less so than 5-million (+ or -) phone calls to update the world!
Eileen Mahoney (Girl Scouts)

Kanani Nolen said...

John & Heather,

I've just had my first visit to your blog. I had misplaced the blog site address until yesterday. Anyway, 2 1/2 hrs. later...I'm excited to see the progress Tyler & Parker have made over the months. I started from your 1st blog and just finished your 9/1 entry. From start to finish, you can see the improvement. As you've said, one day at a time, and focus on the positive. I think you've both done a fantastic job parenting. John, although you may not like reading, you're really a great writer. Heather, (we've only met once, years ago)you've done a fabulous job blogging yourself. You're all in our prayers. Keep up the great work. Their little pictures are soooo precious you just want to "give them a squeeze"...give little Tyler & Parker a squeeze for me.
Kanani Nolen

Anonymous said...

Sending you , all four of you, lots of love and prayers. We have never met,, but keeping up with you via the internet means we are "connected." Thank you.
Sean Michael's Gram-gram

Lacoste Family said...

Wow! this is the first time i have been able to get online in a few weeks and i can't believe how big they have gotten! They look like actual babies now! (i mean, they always looked like "babies" but, well, you know what i mean). We are thinking of you all everyday.
dave and gina lacoste

Karla said...

The two of you are so strong I hope you are not just holding your breath which will then cause an utter collapse.
We are also thankful of the time you spend sharing this struggle on the blog.