Short but sweet

Today was simple... and this will be short & sweet :)

I woke up to these little eyeballs...

He had a very restful and uneventful night :)

I picked up Max from school - he had a lovely morning there. We went home to see what kind of mischief our Elf, Agent Pants got into...

He baked some donuts :)

Then I worked tonight...and while I was there I got my green extension for Kayden! 

Love it! 

Not too much new info today, I think they are trying to give us a break :) And I'm grateful, 'cause I'm beat!! So until tomorrow friends......

Much love, 

Melissa & Kayden

Today's boxing match...

Oh... For the love of Kayden! When you all see me next, you might mistake me for a haggard old maid. Today was an experience, to say the least.
Round 1: The nurse woke me up early this morning by emergency phone call, telling me that Kayden yanked his breathing tube out. In the 3 seconds it took me to run down the hallway (parents have sleep rooms, we aren't allowed to sleep in the kids' rooms) he was being rolled into the OR for reintubation. Awesomeness.
Round 2 : The attending sat Ben and I down to explain that she, in fact, lied to me yesterday when I asked if she was concerned that something else might be going on with Kayden aside from RSV and she responded no. She is worried about his weight, and him still being so small. He isn't gaining the appropriate weight given the amount of controlled calories he is getting through the GI tube. She would like to take blood and do some more genetic testing (they already screen your baby at birth for broad-spectrum diseases, and all of his were negative) to see if there is something hidden. More awesomeness :(
Round 3 : Kayden has pneumonia as well now and is being treated with antibiotics.
Round 4 : I was THAT mom today, flipping out on the nurse staff after he came back from the OR. I was in panic mode, and reverted right back to our scary Thanksgiving day nightmare. Kayden's alarms went off and no one was at our station hub except two people doing paperwork. I popped my head out of his room to request help since no one was coming and NO ONE was responding still! Once my nurse arrived she told me she was sorry, but her other patient of the day was on the opposite side of the PICU floor. *Unacceptable* !!!!!! I'm sure I'm the talk of PICU. I had a complete mental breakdown and in the middle of it my nurse says, "welp, I'm going to lunch now".......Baaaahhhh! Speechless, utterly dumbfounded, and FURIOUS momma bear are some adjectives to describe myself at this point. Needless to say, I got our room moved to right in front of the main station where the doctors are.

Thank goodness we are finally at shift change and I have my little support group of  nurses here. I'm familiar with them, and them us. It's a relief knowing that when I have to go to bed tonight I am ok walking out of his room. Thank you night staff for being so freaking awesome at the most exhausting
hours of the day. Kayden is stable and back on track, kinda. His settings didn't go up any, but we are giving him the remainder of today to rest before we change any settings. I'm in awe of his rowdiness, and ability to stay awake through all of the sedation meds he is on. I can tell he is just as over this as I am. He wants to plump right up from a Christmas feast and snuggle on the couch by the fire and Christmas tree.

So tonight, I'm still praying for a Christmas miracle and for all good results from the blood and urine samples (we won't know for weeks). God, please look after my baby and give us all the strength to get through this and back home. I'm praying that as bad as RSV was/is for him, that RSV is the only issue here, and we can continue to work towards an extubation date and weight gain without any other bumps or pot holes along the way!

* The waves keep crashing down, but he is trying SO hard to swim*

With all our love for those thinking and praying for us <3
Melissa & Kayden

A little more to help...

Hello again, blog readers!

Stacey here.  Just wanted to update that my parents are hosting a small benefit dinner to help support Melissa and Ben with the expenses of Kayden's hospital stay and recovery once he gets home.  Below is a flyer with all the details but PLEASE, no matter what, keep praying for our boy!

Turtle Team

Sorry for the delay tonight, but I was being a hands-on mommy for once, and boy, is he feisty! He wrangled a good grip on his breathing tube, and had two grown women wrestling to get his diaper changed :) That's my boy, and Daddy would be proud!! 

Grammy & Poppy P. came to visit tonight and got to see Kayden slightly awake :) They got PICU nursing 101 from nurse Lynn, and then we got some milkshakes across the street from Friendly's... not too shabby. 

Kayden had a good day today, no drastic changes - that would be WAY too speedy for this little turtle - but little steps. His Peep (amount of pressure left in his lungs after exhaling) was weened successfully down to 7 today. It needs to be at 5 for extubation. The plan is to go to 6 tomorrow and then 5 Thursday. Now, they say POSSIBLE extubation Friday or Monday. *I'M* not holding my breathe this time :)

Annnnnndddd my awesome event of the day: I won the laundry battle with the lady who is - no, *WAS* - obnoxiously doing 75 loads per day! ALSO I got moved into a sleep room with WINDOWS....oh yeah, serious things happening in our sleep quad today :) 

I worked today for a bit and had some pretty awesome clients. I added some lime green streaks in our friends' hair, for Kayden. Mom, Dad, and both girls got one done! I ordered lime green extentions also, and they will be in tomorrow. I can't wait to get my turtle extention :) Here are some pictures of Kaydens first turtle team members <3 

Tomorrow (or rather, today, since it's 1:00 am) is my day with Maxon. I can't wait to get home and have him find his Elf... Whom, by the way, he named Special Agent Pants. 3 yr olds... I don't get it. 

Finally off to bed... Looking forward to day #13 here at CCMC, and with it, bringing a Peep level 6! 

Goodnight friends!

XOXO

Melissa & Kayden

Better days...

If you have been following, you know that they anticipated today for extubation (surgery to take out the breathing tube). Well, he just isn't ready yet - so that hasn't happened. I was ok with it yesterday but today I'm feeling mad. I wasn't even sure if I was going to post tonight. BUT if I'm going to be true to what this blog is supposed to be about, how honest would I be if I portrayed everyday to be cheerful? It's a struggle, and the most difficult time of my life. So as there is ups and downs in real life - there is with our story too :/ I'm not mad at the doctors or nurses, and definetly not Kayden, or even any of our very awesome friends and family. I know I'm just having a bad day, and I realize where this is steming from, but I feel mad at every little stupid insignificant thing, such as the lady who is staying next to me in our little quad living area. She has been occupying the laundry for 2 days straight. I'm almost positive she is doing her entire family's laundry daily. I'm mad that I was 2 hours late pumping - and even madder that I have to pump instead of being able to nurse. I'm mad that I haven't been able to sleep next my husband in 2 weeks, or change my baby's diaper. I'm mad I don't have an ornament for Kayden on the Christmas tree. Isn't this all so stupid!? I even know it is as I'm writing it...
So as a woman... what have I done to help my mood!? Well, I walked my little butt down the street and bought myself a large chocolate croissant :) I'm even going to heat it up in the microwave!

Tomorrow, I promise, will be a better day, and I'll have a better blog post. Hope you all don't get discouraged with my post, keep following! I know there are better, more wonderful days ahead to be had and shared with you <3

Much love, 
Melis & Kayd

Is it ok to have a frustrated moment!? Here I go... Kayden STILL has no progress. He's not making any moves backwards, and his oxygenation levels are up a bit from yesterday - but that is all. We are not having the extubation done tomorrow, which I'm absolutely fine with if he isn't ready. I'd rather him be more than ready, but it has been a week and a half since I've held my baby. I only had 3 weeks home with him to get to know him, and even though this is so selfish, considering what our worst case scenario was, I can't help but feel like I don't know him anymore. I used to be so attuned to what he needed and wanted, and now I'm not even allowed to change his diaper or feed him :( 

BREATHE... Ok, I'm done being pouty. Thanks for listening :) My little guy is still on turtle time... so I better get on board.

Our good friends, the Soch'as, stopped by for a visit today and brought 2 things. 

1) The Elf of the Shelf for Maxon!! I'm so excited to start this tradition with my boys. Here is where he is hiding out for now...

By the way, how creepy is he!? 

2) A turtle keychain, LOVE it!

We also got our Christmas tree today. Max was excited to help "Bamm it down" with daddy. 

Ben walked almost the entire Dzen Tree Farm (or at least it felt that way) to find the perfect tree.. Here is the final outcome :) 

Now if only we could all be home to enjoy it! Baahhhhh hurry up Kayden, we have lots of fun memories to make:) Wishing for my house to be full again this Christmas! 

Tomorrow brings another day, and another full 24 hours of recovery. Tonight let's pray for some tiny turtle steps from Kayden <3

With so much love, 

Melissa & Kayden

Little sea turtle

Big moves... we changed Kayden's hat today :) 

He hasn't progressed as far as they hoped, so he may not be getting the tube out Monday. He could be, but they aren't sure. He hasn't taken any steps backwards... just been hanging out on this little plateau :/ Slow & steady I guess... I bet he will always be like that, just on his own little turtle time. Which of course will drive me mad! Maybe I'll put a lime green streak in my hair for him :)

Ben, Max, Gino, & Anjuli and I went to the tree lighting in Tolland tonight. The boys hung the lights earlier this week for the town, it took them the whole day, but it was worth it. The tree was beautiful. Good job boys! Tomorrow morning we are going to get our own tree with Grammy & Pompy A. and 

spend some time with Max decorating the house. We could use some holiday cheer :) I want to find a little Christmas hat for Kayden (maybe one of the knitted ones). OR..OR, I could attempt to make one!? Bahaha yeah, ok, I'll stick to the art of hair styling.

I love the nurses here, we get along great. They seem to genuinely care about my son and family, and we have an actual relationship with some of them. My nurse tonight brought me a coffee from Starbucks, and even remembered how and what I liked. It made my day, which was already good! 

Keep posted. Since I didn't have much to update with Kayden today, I might be productive tomorrow morning and post again after 9:00 am rounds. I'm curious to see, if he stays stable over the night, if they will still aim for mondays extubation? If so, there will be a lot of changes tomorrow. 

Just for fun, incase some of you don't have Facebook, here are some new born shots we had taken of Kayden. They are by far more fun to look at than the scary ones :) Our friends at A glimpse in Time Photography are amazing, and I recommend you visit their website. They do stunning work, and are 

very affordable... did I mention they are super sweet, too, and are on our prayer squad :)

Fingers crossed for progress X

Love,

Melissa & Kayden