Nervous chatter

I sit here tonight in awe of our friends and family. It is 2 days before Christmas, and people felt the want to come to a benefit for me and my family. I'm certain that their was plenty to do at home, or work, or with kids and their own families. I'm so grateful for the time and money and support we have received thought this entire journey. Its possible for me to stay home a bit longer from full time work, and get my family back in a healthy and normal routine without our finances being such an area for stress. It's amazing, all of it, and we are thankful <3

My dad put me on the spot tonight, asking that I update everyone at the benefit about Kayden.. Awesome idea, but caught me off guard. I'm a terrible speaker, and my words come out much nicer written out instead of spoken. So for those who had to hear my nervous chatter... Here is what I should have said..along with my thank you, which didn't make it's way out of my mouth either!

Kayden is doing well so far at home. I can tell he is so much more comfortable. I feel like im getting into a routine again with him, and im a little bit more at ease around him. I don't know the name of it, but there is a prayer or childs song that a snow globe I once had played. It goes something like, "now I lay me down to sleep, I pray the lord my soul to keep, if I shall die before I wake, I pray the lord my soul to take" - i have prayed this prayer every night since we have been home. It calms me down about the sleeping hours of the day, when I'm not able to stalk Kayden :) It's my way of handing things over to God for the night, to keep a watchful eye on my baby. I'm hoping that one day, my nerves will relax, and I'll feel like Kayd is so much more durable.

We have seen our doctors office once, and a visiting nurse once since we've been home. He is gaining weight and eating well. He has a fussy period of day, which is around dinner time and other than that - he is as happy as a clam. (I have to admit I don't really understand that metaphor, why are clams so happy?) He is still taking Zantac for acid reflux, and gas drops, and vitamins. He is starting to finally grow somembutt cheeks!

Well, with much to do tomorrow, and 4 hrs of sleep a night... I'm off to bed. Enjoy every moment with your loved ones, and from my family to yours,
Have a very merry holiday <3

Benjamin, Melissa, Maxon & Kayden

We made it!

We made it! We are home, and settled and trying to find a routine again. I wish it was a little less chaotic at home, without chores and things so that I could just sit and enjoy! Kayden is doing wonderful so far, and really thriving, we had a follow up check today and he gained 2 oz yesterday, which is awesome since they are hopeful for 1oz per day. He is eating like a good little baby, a little snuggle addict <3

I was sooooooo super nervous to go to sleep last night, which of course resulted in my over tiredness today. He slept in his bassinet right beside my bed, while I watched him via the video monitor. Is that ridiculous or what? Ben refers to the monitor as baby stalking. Your damn right, and I'll be stalking my boys for many more years to come!

Max is very excited for Kayden's re-arrival. He has been telling people at the store, and just complete strangers, that Kayd is home, and he got his tube out. Haha. I feel like I JUST had a baby, and I brought him home for the first time yesterday. He is still so small, and we have to get to know each other all over again - which, if I'm honest, I'll admit that I'm enjoying it. I felt like I was missing out on those precious first few weeks at home, and now I don't. Because he was 5 weeks early, and we had a full months worth of a sedated baby, it's as if he was born on his due date, and is only 3 weeks old. He remembers me, and still loves me <3

My sister and I got some Christmas wrapping done last night after the boys went to bed (all 3 of them), ate some chocolate chip cookies, and watched Pitch Perfect :) Tonight I'm going to make dinner for the first time in a month... and I'm starting easy, spaghetti :) Then, I'm thinking maybe we can watch the Burl Ives classic stuff like Rudolph, and Frosty. 

First day home..

Agent Pants had a pool party last night :) 

We are coming home!!

This is the post I've been waiting to write for weeks now.... **We Are Coming Home Tomorrow** (or today actually)!! Since my last post, Kayden has taken every one of his feedings by mouth, and he's eaten as much as he should be. He is off all medications aside from Zantac, which is for reflux. He will be taking that for awhile. Today we had ENT (ear, nose & throat) watch his nasal passages and throat with a scope as he ate. He has minor laryngomalacia (a floppy voice box that blocks the airway) when he eats. All this means is that he is noisy, but now we know why. The doctors have taken him off all wires, so no more monitors or IV's or feeding tubes or breathing tubes... Just my precious baby boy :)
I spent tonight at home cleaning the hell out of my house. It's been bleached and Lysol-ed to the extreme. All laundry has been done, and floors and couches cleaned. There will be a box of masks and sanitizer waiting at the door for anyone who may stop by...
Im feeling excited, anxious, nervous, scared and beyond blissful to have Kayden back home. I am getting my Christmas miracle :) It's going to be a quit one this year though since we will be staying home. We are usually very busy with lots of family, and we will miss all the festivities dearly this year, but nothing is more important than the health and safety of our boys. We will enjoy a laid back, home-in-pajamas-all-day kind of Christmas <3

Thanks for each and every prayer, kind word, though, and gift. They have all helped get us to today, and we will never forget the support we have gotten throughout this terrible event. This won't be my last blog, I promise :) I really enjoy writing, and I'm sure I'll have loads of fun stories to share once he is home.

Loving this exciting feeling tonight, and loving all of you for all the prayers :)
<3 Melissa & Kayden
Room 706 CCMC, day # 29   Hospital stay Nov 22 - Dec 20

This girl is on FiRe

When our evening nurse came in tonight, this is what she said to me... "oh, your not that bad - I got assigned to you because Im known to manhandle people if I need to". Ohhh! Bahaaaaha, so what your saying ma'am, is that I've made quite an impression today :)

Kayden has been way under aggressive with his feedings. His goal is 65 mL every 3 hours (<--- I almost just wrote Q3 there, which tells you I've been here entirely too long) and he's been taking anywhere from 25-45. Not so hot Kayden. In exchange for his poor eating habits, he has lost weight, isn't sleeping well, has a less than pinkish color and is all over the place with any type of schedule. Needless to say, we aren't at the milestone I was hoping for today. However, I am fine with that as long as he is stable. I am so very scared that he is going to revert to how he was when we brought him in. Today was scary for me, his coloring was really close to that of the night before Thanksgiving, and all I can imagine is that reoccurring. So, ive been completely and probably a little neurotic about his schedule, and even started writing my own notes down about when and how long he is eating and sleeping.
      Here comes my crazy...
           - but first, just FYI, they lock my milk in a freezer that I do to have any access to. I label it and they store it and heat it up for us as needed. Which means I need to ring the call bell and wait for someone to be available, get to my milk, fortify it if it hasn't been already, warm it up and bring it to us. All the while, I'm trying to pacify Kayden... You might imagine how awesome that is.
          - *SO* my nuerosis kicks in and I give the nurses a heads up on when I'm feeding him next and when to please have it ready. This is very proactive I feel.
         - ok, que the crazy lady (that's me) Time to feed, 10 minutes past no one has come. I use the call bell, tell the secretary I need my nurse to bring the milk. Another 10 minutes... I call again, explain what I need again. Another 10 minutes.. My ass is marching down the hallway until the first poor unsuspecting nurses aid comes in my path.

Since 1:00 when this all went down, I've managed to score myself a meeting with all of Kaydens doctors (which is very helpful btw), the patient representative stopped by, social work asked if I needed someone to talk to (which I probably do), got the "bad ass" nurse apparently, and I've gotten my milk precisely when I need it.

Ok, I realize this was all very dramatic. I also realize I wasnt just aggravated over the milk. If Kayden doesn't eat his goal feeds, he needs a feeding tube back in. We have been here for 27 days, and I feel like we are taking steps backwards :(

 Max was here today, and while I love that I get my two boys at once he just doesn't understand why we are at the "hosiple" all the time. He is so freaking funny though. There is a mirror in our room, which he was looking at today while one of the nurses was evaluating Kayden. She was asking him his age and name, and he was answering her but checking himself out in the mirror at the same time. Next she asked him if he thought he looked good today, joking around with me, and Max says... "Yes! I do look good" hahaha. Ahhh kids, this is why all this craziness is worthwhile. Someday soon Kayden will be abnoxiously funny and playful too.

I'm going to bed a happy little chicken tonight, Kayden just took his entire 65 mL feeding :) Yaay, no GI tube for now! Also, we got him a swing from the child life peeps tonight, and someone is loving it. 

Sleep well friends <3
Melissa & Kayden

85% there?

I know, I know! I'm SUCH a slacker! It's been so much busier now that Kayden is off the ventilator, not that I'm complaining :) I worked all day yesterday, came to the hospital and didnt get to bed until 1:00am, so forgive me for not updating :) 

Respiratory speaking Kayden is doing amazing. He hasn't had any problems with oxygen, respiratory rate, or heart rate in days. Our biggest focus is now on eating and gaining weight. He has lost weight the past 2 days, even though he is eating every 3 hours, and they have been fortifying my breast milk. Interesting... And a little concerning. I think a bit of the problem was the withdrawing from sedation, a bit from being intubated for so long, and bit because his gag reflex is very sensitive. We altered which nipple flow we are using for his bottles, and I'm not nursing for now (still pumping). So he is getting pumped milk, with added calories. By strictly using a bottle I feel it's consistent for him and we can really monitor his intake. Also, instead of feeding every 3 hours, we are trying every 2. I think once he starts to gain weight, we can finally go home! 

Speaking of home, Ben and I wrapped some of the kids gifts last night. I'm really starting to look forward to Christmas. Max is very excited and has been such a good kiddo through all of this. He really loves all of his family, and has even enjoyed visiting them all a little more frequently then normal. 

We will see ear, nose & throat tomorrow and they will make sure there is no further swelling in his airway. My sister, Stacey is coming home for Christmas a little early to help us out. She will be here Tuesday and I am so anxious for that. Still praying for us to all be home for Christmas, I'm not giving up on that yet <3

Loving & missing my boys at home tonight, but thankful to be sleeping in Kaydens room :)

With all our love, 

Melissa & Kayden

Kayden is doing great :) He is off all oxygen and maintaining 100% oxygen on his own.. Good boy :)

 The doctor told us today that we COULD be home within 48 hours. I'm anxious, excited, and super nervous for that. Meanwhile, we have a shared room now. I have a little plastic bed/couch, aren't you jealous!?

For those interested in what our Elf, Agent pants has been up to, here's yesterday and today's activities...

On a very tragic side note, I can't stop thinking of the awful shooting in Newton today. What on earth gives someone the idea that they can end an innocent childs life, and ruine families. Tonight, all my extra prayers are for the family members of the murdered children. My heart is heavy for those who will be burying their kids a week before Christmas. May god be with these families and give them some type of peace.

With lots of prayers & faith,
Melissa & Kayden

Super...tuckered....out

Super duper quick... Everything is going great. We have been moved out of the NICU, onto regular floors. I've just spent the last 2 hours moving. I'm also not feeling well today, lovely :( Kayden is doing awesome - he's moved to the regular oxygen nasal cannula, 2 more days of antibiotics, and a day or two more of weening from sedation. Sorry this is short tonight, I'll try to upload pictures from today in the morning...and PLEASE pray I don't get sick!!!!

Love,
Melissa and Kayden - Room 706 CCMC

Faaaaa la la la la la la Laaaa!

FaaaalalalalaLalalalaaaa! It's almost Christmas time, and do I dare say it?.... I feel like we might actually make it home for Xmas :) Kayden has progressed to a crib, rather than a bed...

He's getting his central IV line taken out and having just a regular IV instead. The central line is in a deeper vein, and is located in his groin, secured by 4 stitches. It's is his last concerning potential threat of infection... Goooood riddance! His lung is fully expanded again, and the greatest news of all......he's nursing again :) 

We had a hectic, but good day. I got to spend time with Maxon today, which was really really nice - except for the guilty part of leaving Kayden. We had a snuggle session after Grammy A. dropped him off, visited with Kyden for as long as Max's attention span lasted, had ourselves some cafeteria breakfast (not so delish), then went to check on Agent pants...

He wasted a good portion of my new wrapping paper! Thanks a heap buddy.

Along our travels to our house we mailed out our Xmas cards, visited Daddy-O at the shop, and paid some bills. After we discovered Agents pants' little mess, we had popcorn and watched Wibbly Pig together before Max headed to Grammy P.'s for some gingerbread train making. 

All in all, I felt like today was equally divided with both my boys - who if you couldn't tell already, I love dearly. My family is my entire world, and I cherish them with everything I have. I have to admit, I'm starting to allow myself to get a little excited that we could all be waking up Christmas morning together. One of us holding Kayden, one of us video taping Maxon, all 4 of us enjoying Christmas as its meant to be - at home with your loved ones <3 

Enjoy your families, treat each other with respect, and love each other unconditionally. You never know what tomorrow will bring, so don't leave any room for regrets :) 

Day # 21 

(stil in the PICU)

With all our love & sweetest dreams, 

Melissa & Kayden

My sweet little fuss face :)

I wanna got to bed!....and I will as soon as I update this. It's 1:00am, I just fed Kayden (bottle fed), and he took it successfully. He has been screaming his little head off all day. He hasn't been allowed to eat since 2am Sunday morning, and the child was starving! I finally convinced our favorite doctor here to let him have a go at it :)

Yesterday morning's x-ray showed that his lower right lung was a bit collapsed, but through chest PT today we are hoping that we fixed that problem. We won't know until today's x-ray.

Some things to look forward to are: today's events with Agent Pants :), consistent feedings & weight gain..and no more collapsed lung! 

I'm going to keep this post pretty short, since there isn't too much more to add. Fussy baby = tired momma!
Goooooooooooooooooooood Night <3

XOXOXO
Melissa & fussy face Kayden 

Benefit Raffle Preview

Hi folks!

Stacey here again.  While I don't have any tear-inducing pictures (happy tears, of course!), I do have an update on the Palumbo Family Benefit.

We have been BEYOND blessed by the response from both friends and strangers to help Kayden and his family.  Here's a preview...

I also wanted to let everyone know that tickets are in and can be purchased by contacting me or my mom (aka Grammy A) at the info above.  

We also wanted everyone to know that if you cannot make it to the benefit but still would like to participate in the raffle, you can!  Just contact one of us and we will make sure to put raffle tickets with your name on it in for the prize or prizes of your choice!

Thanks again for everyone's continued support and prayers!

(Ok managed to steal a pic of Kayden holding his Daddy's hand... this one is more heart-warming, I think... cue the "awwwws"!)

Amazing doesn't even capture it...

Today was amazing. Amazing doesn't even capture it. 

It started off a little rocky. Kaydens breathing tube slid out a bit over night and so they had to retape it at 9:00am (4 hours pre OR).  Retaping is such a delicate procedure it requires a paralyzingly drug for Kayden OPPOSITE of what we needed to extubate. For extubation he actually needed to be awake and even a bit rowdy :) THEN at rounds, which happened later than usual (11:00am), the new attending decided she didn't feel comfortable with his vent settings - even though the attending doctor the night before said that Kayden was ready, and was scheduled in the OR for 1:00 - hence my exciting blog last night! He was switched onto the appropriate medication for extubation, and had his feeding tube out in preparation as well. I was floored, if this was what needed to happen, *WhY* would you wait until 2 hrs before his OR time to share this!? I took a few good deep breathes and then called the doctor out on this very poor communication problem. Sooooo, we decided he needed a trial test from the ventilator, which he passed with flying colors! 

After our morning/early afternoon of ups and downs - they were ready to give him a real chance. 3:30 came, and away he went. Longest hour in my life, but totally worth all the anticipation... at 4:30, this is how he was brought back to us :) 

He looked right at Ben and me and gave this tiny little baby wail. My heart leapt into my throat, as it struck me that I hadn't heard my baby cry in almost 3 weeks! It was the most beautiful sound I've ever heard - I still can't get over that moment <3..... Like I said, today was amazing*

Only a short while later, amazing moment #2...I got to snuggle that little turtle butt right up. The last time I held Kayden was on the way to the ER on Thanksgiving morning...and tonight was SO much better than that morning. I've been anxiously awaiting this day for weeks, nervous that I would be too scared to touch him, or he wouldn't remember being held and might prefer laying down instead now... I was sooooo wrong :) Thank GOD I was wrong. 

I mean that too.. thank God. He was right by us today, cheering right alongside Kayden. Thank you all for those additional prayers and good thoughts today. I will forever be grateful for all the love people have been sending our way, and all the people invested in my son's journey. My family is so lucky to have each one of you in our corner!

Ok, I've spent too much time without Kayden in my arms now.... 

Time for another cuddle session <3

Sweet dreams friends :) 

With much love, 

Melissa & Kayden

Ready!?..... GO!

Tomorrow is the big day! All settings are at the minimum, and Kayden has been doing great with them all day today. Tonight they will cut his current sedation medication in half and replace it with another one that will stop immediately when they stop it. He also has gotten some steroids for his lungs just in preparation. They took some more blood work to double check things and his red blood cells are low so he will get a small transfusion tonight (1 of 3 total since we have been here).  It sounds scary but he does great with it and it helps him quite a lot and actually will give him an extra little boost for tomorrow.  I can tell Kayden is ready for tomorrow, 'cause he was smiling at Ben and me this morning :) *heart swelling* I feel like I'm starting to get my baby back! 1:00, 12/10/12 we are ready to take you on! 

Elf alert for the day: Agent Pants was found this morning eating Max's yogurt! Naughty little thing, I wonder where he gets these ideas! :)

I've ordered a BBQ chicken melt & a vanilla milkshake from Friendly's for dinner tonight... I'm going to sit back, watch TLC and enjoy my little buddy. Tommorrow I may not be eating at all since my arms will be full and busy holding my baby :) CaNNoT WAIT!!

*Last little side note - as I was wrapping up my blog tonight, Kayden's Grammy P. informed me that 60 minutes has a special about turtles on tonight:) Pefection <3

Love, love, love...

Melissa & Kayden

Christmas spirit, faith & courage!

Gooooood evening friends! Kayden is doing so great today, and really proving to the doctors that he is ready for Monday. We don't talk about Monday in front of Kayd though, so he doesn't get any funny ideas :) We don't want to jinx anything! He has done phenomenal with all of his lowered vent settings and is just about at his goal settings. He is tolerating all of his sedation medicine, and is producing proper urine output and good stools (I know, I know, TMI but it's all part of what they look for). He hasn't had an "episode" in 3 days,  and he also is starting to look a bit more chubby! 

I'm finally feeling a bit in the Christmas spirit. Our Christmas cards are in.. And I put out some balsam & cedar candles, and my house smells like that warm Christmas feeling. I might have some warm egg nog in the morning instead of coffee. Ok, ok let's be serious... I can't make it without coffee, but maybe I'll have both :) 

So, I'd like to take a second to really, truly and thoroughly thank all of you reading this and rallying around us. We have amazing friends and family, and are so blessed to have you. For those who we don't really know, but are following Kayden's progress and/or my crazy blog - thank you for sending those thoughts and prayers our way. It's been a bit hectic lately, and if you've texted or emailed me without response, please know it's not intentional - and most likely I forgot to reply :/ My brain isn't fully functional lately, but please know I've read and loved each note sent my way <3

Busy days ahead, but we are headed into them with faith & courage.... 

With all our love

Melissa & Kayden

Torn

Day 15 on our road here.. And things are looking up. Kayden has been stable for 3 days now, and continues to be as they start to lower his vent settings again. Tonight his oxygen went from 40% to 30% and his PEEP went from 7 to 6. He got weighed today and is now 6.82 ounces - GO buddy! Not much else to report, which is good news :) We are still on the path for Monday being extubation day. Fingers, toes, arms, & legs crossed :)

Fridays, we've decided will be our "normal" night. We all stay at home. It makes me super duper anxious, but it gives us all a little refresh for the week ahead. It never feels right anywhere I sleep though, because either scenario I'm missing family members :/ I AM starting to feel like we might all come home soon(ish) though <3 So, for tonight I will snuggle up to my 2 oldest boys while I miss my tiniest. Don't judge me when I call the PIcU several times tonight for a check up :) 

With a worried heart tonight, but so much faith..
Ben, Melissa & Max

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

Our tiny trooper

So one of Kayden's doctors is doing a wonderful study on RSV, right up my alley :) He wanted to know if we would volunteer to be a part of it... psssh! Of course! If we can be a part of helping other babies avoid this nasty little virus, we sure will. So Kayden is participant #104, which is sort of a cooincidence, his room # is 304, there is 4 members of our family... haha ok, thats all the fours I can think of... haha, so maybe it's not. (Did I mention I'm not sleeping well, and could be losing my mind?) So, it's no crazy testing on Kayden's part, just adding his blood work and statistics into their pool of participants. They are looking to see if, genetically, they can prove who is susceptible to getting the worst of the disease. Like I said, most people who come in contact with RSV simply have a runny nose or a cough. But a few, like Kayden, need to be hospitalized, and that is what we are trying to avoid. If these 200 participants have the same gene, they think they can test each newborn through blood work to see if they have this gene also and if so, automatically give them the preventative shot. It makes my heart warm to know that through this awful experience we can help other children. LOVE THIS <3  

They are preparing Kayd today, tomorrow, and Sunday for surgery on Monday. He is scheduled for extubation at noon on Monday. Please, please, please pray for us that this goes smoothly. If his lungs aren't ready to breathe on their own when they take the tube out, he would need to have it back in for a bit. He has a critical airway, and it was very difficult for them to put the tube in the first time. *IF* he needs it back in and they cannot get it back in due to his critical airway he would need a tracheotomy. I'm dreading those words, they scare the shit out of me. So please... PRAY. Some other preps for surgery is a healthy heart, so he had an EKG this morning.... :) Such a trooper.

The doctors say his lungs look great, and should be ready for the big show. At this point they believe his "episodes" are being caused by the tube. It's not comfortable to have that down his throat as you might imagine, and his gag reflex is very sensitive. By getting the tube out, they predict those episodes will no longer be an issue :) 

The four of us haven't been together for over a week now, and are aiming for some family time this weekend. We might even get our Christmas tree and give Max loads of attention. We can show Kayden the pictures later :) He won't remember anyways, but he will NEVER live this down :) EVER!  

Until tomorrow, friends!

Love, Melissa & Kayden

Hi friends! Don't be mad that I am posting so late, I have good reason. Kayden has been awake for quite awhile tonight, and I have been soaking up every minute of it :) I haven't seen him awake and alert in 7 days... and so of course I captured the occasion... so here is my precious little love :) 

He has some intense and terrifying "episodes" still, but as you can see he is feeling better and in fact, even a bit pissed off by his little tape mustache. I keep telling him, it IS movember after all :) haha 

Today Max had a good day too. He had school this morning, and then we went to see our friends at mommy's work. They were doing some festive things and he got to help out :)

I worked tonight, which was nice. It put me in a little bit of the Christmas mood, but of course I was feeling like I should be somewhere else instead. Both yesterday and today I spent the day with Maxon. It's usually my day at home with the boys, and since Max really doesn't enjoy hanging out at the hospital all day I just can't force it anymore. So needless to say, I was really missing Kayden. 

Have any of you heard of the Elf on the shelf? I'm sure you must have... I found this picture today on someone's Facebook page, and had to steal it. Baaaahahaaha, this little "elf on the shelf" kit is $30, and this would make it worth every penny! 

So, a busy but nice day we had today. Still trooping along, but feeling so much more peaceful with things. It all seems to be a little less overwhelming tonight. Of course this is due to all of you, who pray and think of Kayden and our family. We have had some amazing people helping

us along this week and keeping our sanity. We thank you for every prayer, visit, thought, email, comment, and gift. We truly wouldn't be capable of surviving this alone!

Welp, I'm exhausted. I've spent the night making more friends on the nursing staff :) The nurses are amazing here.. they even take your Starbucks order in advance for tomorrow night :) 

Like I keep saying, it's the little things <3 

With much love, 

*Melissa and Kayden*

If, like me, you want to do ANYTHING to help...

Hi Blog Readers!

This is Stacey, Melissa's sister.  I made this blog, which means I get free rein to edit/post if I feel so compelled ;)  And this is exactly what bring me here.  Like I suspect most of you do too, I feel compelled to help Melissa and her family every time I see her posts.  Kayden's battle with RSV is weighing heavy on their little family and they have been nothing but positive, hopeful and appreciative of each other.  It's been a beautiful thing to watch, especially this time of year when we all hope to see such spirit in those around us.

So here's what Melissa and Ben are so thankful to have:

-Amazing friends and family that are taking turns watching Max so that he can continue to be one of the sweetest and happiest little boys to walk this earth.

-Great nurses and doctors doing everything they can to help care for Kayden and keep him as comfortable and healthy as possible.

-Flexible jobs that are allowing Ben to work hard for his family and Melissa to take the time off to be with her family.


And here's what Melissa and Ben need (aka the part where you can help):

-Time.  Melissa and Ben need time to spend with Kayden and Max without feeling obligated to be somewhere else.  Kayden needs time with his parents, to hear their voices and feel the presence so that he can feel encouraged to stay strong.  The biggest way that you can help give Melissa and Ben time is through money.  I know it never feels like the best way to help, but the only thing holding them back from spending time with Kayd is their financial burdens.  The lighter this burden, the more time they can devote to helping their son heal and the less stress they will be under when they finally get that sweet boy home.

-Prayers.  There is no limit on these and duplicates are welcome!  Whether you say a silent prayer on your own or send prayers for Melissa and Ben to read through comments, the Palumbo/Arena clans appreciate it and believe that you are helping our newest member heal quickly.  (I personally like to take nice deep breaths and send them his way!  And while I'm at it, I remind myself how lucky I am to be recovering from the same icky cold that infected Kayden, and only needed a few couch days, four boxes of tissues and a little Robitussin.)

-Encouragement.  Nobody has commented on the blog yet, so I'm guessing you all don't know you can, since I've seen what you can do on Facebook!  So comment people!  Melissa loves to check this and see positive words from everyone.  It warms all our hearts to know that people are reading this, taking extra precautions with their own children and are keeping Kayden and his parents in their thoughts.


Prayers and encouragement need no instructions, but if you feel compelled to support Melissa and Ben in any financial way, here's some info:

Ben and Melissa have accounts at:
First New England Credit Union
62 Hyde Avenue, Vernon CT 06066

Anyone close to Melissa and Ben (parents, siblings and siblings-in-law) can make sure they get money if you don't want to go through the bank.

And please, no matter what, keep reading and keep praying!

Stacey

Home is where the heart is, and my heart is everywhere!

Progress!! (Insert 30 second dance party)! 

Today has been busy, but good. The doctors lowered some settings on the vent today to see how he would tolerate it. He's a rockstar... his oxygen levels were at 60%, and now they are at 40%. Keep in mind these numbers are what the ventilator was giving him, so what he isn't getting from the vent he is doing on his own.  They lowered the amount of breaths and he is doing great with that too. Still a few episodes of the bronchial spasms, but I finally think we are on the up! The nurse just spoke these words to my face, people - no joke - "a few more days and he will probably come off the vent," and "possibly Saturday." Ummmm YES PLEASE!
So here's a brief outline of our plan going forward:
1) No more bronchial spasms, weening of meds and vent settings
2) Vent comes out in OR, and they take a peek at his "critical airway"
3) Wait on pins and needles to see what that brings :/ Some kids need it back in if they weren't ready, some just need a little extra oxygen through nose prongs, and some are ready to fly.
4) All vitals are good, no meds
5) Move upstairs to a different unit where we learn to live normal again. Still monitors, but this is his thriving test. He needs to eat, gain weight, poop/pee normal, the usual infant routine.

 Then we can go home. Although, I might force them to keep him until he's like, 7, and nice and durable :)
Speaking of home... Max wasn't enjoying the hospital very much this morning.

 So we decided to spend some time at home today. It was the first time I've stayed there for more than two seconds since our Thanksgiving nightmare. I enjoyed it, to my surprise. It felt so nice to be home, and Max agreed. There was something missing, though, which of course was Kayden. It's so difficult to need to be at 2 places at once :/ Soon, right?

A few friends were wondering about his brain. We don't know the exact time without oxygen when we had those apnea spells at home, but all scans and X-rays look normal. There is never certainty with anything, but they aren't worried. They expect the baby I remember to be leaving with us by Christmas. This will be SUCH a blessed Christmas for sure!

Feel free to ask anything, comments are welcomed :) My initial intent for this blog was to be informative about RSV, which is still my intent of course - but it's turned into our daily journey. It's so much more than just Kayden's vital signs... it's the daily heartbreak, the love we have for each other, the battle of work and bills and sleep and insanity, about the friendships we have, and the new ones we are making here. It's about life...and all of the crazy that comes with it. So comment away!

**And one last thing.... We are feeling lucky tonight, so don't be shocked when we are millionaires by tomorrow.

With so much love & thanks to everyone following and praying with us!
<3 Melissa & Kayden