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  

Slow but steady... Wins the race

Hi! Nothing too much to share about Kayden's condition. It's still the same, just hanging out watching T.V. together... He's so awesome, he always let's me pick what we watch :)

I figured I'd share a picture of what we have to wear while in his room. Every time you enter you have to mask and gown up, and if you leave (even for a quick bathroom break), you have to take it off, trash them, and suit back up again to enter. Worst part... drinking coffee and wearing the mask! Best part... ripping the gown off like the hulk would! Haha it's the little things. 

Some highlights of my day today:

*I decided to suck it up this morning and travel to the cafeteria for my coffee, assuming it would be nasty & burnt, to find perfectly brewed Starbucks coffee...for $1.75 :) 

*I got to spend a large chunk of my day in Kayd's room

*Ben got to spend some alone time with Kayden tonight. He has been taking care of Max and hasn't 

gotten any good quality time with Kayden for, like, five days. I was really happy for that opportunity.

* My mom brought me and Kayden a little gift today. Kayden got a little sea turtle snugly buddy, 

which is so perfect because..1) Turtles are slow but steady, like Kayden's fight with RSV, and 2)

 they are fragile and teeny tiny at birth, but as they grow they have tough shells and live to be 100 yrs old (says Nemo anyways!) I got a guardian angel necklace...which speaks for itself. 

Fingers crossed for tomorrow X

<3 Melis & Kayd 

Mehhh :(  I'm sitting by the window, annoyed with this mornings rounds. At least the view from his room is cool.

Chest X-ray was worse this morning... super depressing. They increased some settings on the vent to help him along. Baby boy is not keeping his temp up either, he has been at 95.6 for a while now. I'm getting nervous again. I really thought yesterday was going to be the worst, and today we might see some signs of progression - I'm hopeful for tomorrow.
Max had school today, a smidge of normalcy for him! Ben had work today, and school this evening and I'm working tonight from 5-8. This life we live is crazy, and right now has been the most trying days of my life - BUT - I'm lucky. I have an amazing husband, and we have created a wonderful little life. I couldn't feel more blessed to have what I have. Now... get better Kayden because you have a lot of life to live, and plenty of trouble to cause I'm sure. He is a Palumbo boy after all :)

Until tonight friends....
<3 Melissa & Kayden

Day 5, room 304, in the PICU at CCMC ~

No changes with Kayd today, he is still scaring us with his dipping spells. He had a few doses of Vecuronium to relax his muscles (even more), and extra doses of oxygen today. We haven't hit our turn around point yet. He is MUCH less swollen today, thanks to the lasiks drug.

Our struggles today have been those more of the mental and emotional kind. Along with our worries for Kayden, we have our other son to care for. Lucky for me and my kids, they have an amazing father. Trying to balance our time is upsetting. The PICU isn't exactly Max's favorite place, and he isn't allowed to stay overnight with us. Ben stays with Max at night, and I'm here with Kayden in the hospital.  However, Max still has to go to school twice a week...oh and, of course, we have that fun life activity called work. :/ SO, when I'm here at the hospital I feel neglectful of Max, and when I leave to spend some time with him, I feel neglectful of Kayden. Even though we have an amazing family and friends who want to help us take care of Max, it doesn't take away the amount of time I would like to be spending with him. Truly, I just want my entire family back together again... But since that can't happen we just choose the best plan for each new day. Kayden fortunately won't remember this, and Max is a very happy kiddo, so that at least gives me mind at peace.

Today was also a very sad one for another reason. A very amazing, young, and talented woman that I had the pleasure of knowing and cheering with passed today from this crazy world we live in. She is surely dancing with the angels now... and probably teaching them a thing or two! Amy Jones was an incredible coach and choreographer. She has been battling her cancer for quite some time now, and a few hours after marrying her best friend this morning, God took her from him. Today I have a heavy, heavy heart for her family and all those closest to her. She made a difference in the lives of many kids through her coaching and now they have a beautiful angel watching over them <3 May you dance your ass off up there Amy, in peace :)

Anxious to keep an eye on his little brother...

Updates

Because so many people are invested in our journey as Kayden fights this infection, I have decided to post daily updates on this blog.  

Kayden is on day 6/7 of this virus. They say it peaks between 4-7 days so here we sit at the eye of the storm. His BP will be great one minute, and then, boom, his heart rate drops.  By the time that comes up, his oxygen level dives down.  Then he tries to cough and contracts his breathing tube.  It's draining. 

So here was today's kicker.. Ready? I met with our PCP and he explained that the reason they don't mention the preventative shot is because insurance doesn't want to covert it. It's very expensive ($1,200) and requires 3 doses. SO due to cost they place strict requirements on who qualifies. Preemie babies born 34 weeks or earlier automatically get it. Kayden was 35 weeks, shy of "qualifying" by 1 damn week, yet clearly equally at risk. Just peachy :) 

Tomorrow starts the work week again, and so comes the crazy schedule. Praying for the strength to get us through the next couple of weeks. Its going to be a lot to handle, but we are so greatful for the prayers and thoughts of all our friends and family. They say it takes a village, right? Luckily my little bug is a fighter, and is truckin along. Hopefully tomorrow will be better :) 

Now for some Zzzz's... 

♥ Melissa & Kayden

How This Began...

This is Kayden.

Kayden was born on October 20, 2012.  Even though he was 4 1/2 weeks early, he was bigger and healthier than anyone expected.

He did have to spend 5 days in the NICU getting his little lungs adjusted to the world, but before we knew it, he was healthy, happy and at home with his family.

He even got to celebrate Halloween with us.  

After that Kayd and I had a few weeks while I was off of work to just get to know each other, get used to our new schedule and for our whole family to enjoy our newest member.  

As you might expect, the weekend before I went back to work got a little hectic, especially considering it was also the weekend before Thanksgiving.  To add to the chaos of potty training, babysitter scheduling, holiday planning and breastfeeding, Maxon, my 3-year-old, got an awful cold.  

We visited our PCP Monday for Maxon's cough and AGAIN Wednesday because Kayd started coughing, even though we were told on Monday that he was less at-risk of catching the cold since he was breastfeeding.  The same doctor that assured of his low risk of catching Max's cold sent us home Wednesday with no diagnosis for Kayden.  

Now here's where things get scary.

Our newborn Kayden, only 4 weeks old, stopped breathing on us twice Thursday morning.  Grey/blue coloring, glossy eyes, lifeless, the whole scary bit. We literally dropped everything and rushed to the hospital and within 30 min of swabbing his nose results were back that he had RSV, a respiratory infection that is common, terrifying and sometimes fatal.  To an adult, or even 3-year-old Max, this is just a simple winter cold.  To Kayden, it's an all-out battle for his premature, newborn body to fight.  

During our two visits that week, the doctor never mentioned this virus or offered testing or prevention for it. If she had, I might not be sitting in the PICU with him right now writing this.  We have been at CCMC since Thursday morning with Kayd on a ventilator. They estimate an additional 4-7 days with the breathing tube from today. There are no medication to treat this virus, it has to just run its course as we give him respiratory support along the way.  I can't explain how awful this is, and how in fear I've been for my baby's life. 

My goal with this blog is to help inform any parent who is not aware of how serious this is.  If this blog informs just one family, it will be worth my effort. No child should have to go through this and no parent should have to sit by and watch. Send some prayers for Kayden, and keep your kids safe and healthy this winter! 

♥ Melissa & Kayden