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