Friday, January 27, 2012

More Pictures!

So recently my very talented, hysterical, and wonderfully generous friend Melissa came by to once again take outstanding pictures for us.  After the day started with Landon having a massive poo blow out and then me making his face bleed when I took the tape off his cheeks I was surprised she was able to get any good shots, but low and behold she did!  Check out a few here but also visit her blog for some more!

Such a weird little boy!  :)

Look how big those feet have gotten...

And then he passed out... quite the day

Hope you enjoyed!
Much Love,
Jason and Kristin

Sunday, December 25, 2011

Merry Christmas!

We are celebrating our first (well technically second since I was pregnant last time this year) Christmas with Landon.  We have a new outlook on Christmas this year and are so thankful to have Landon home celebrating with us.  Wishing you all a wonderful day today!

(PS... we didn't send out cards this year so this is our makeshift Christmas card)

Our Christmas Outfit Today:

And Meeting Santa Claus at the hospital on Friday:

Much Love,
Jason and Kristin

Tuesday, December 6, 2011

December 5th, Catch up once again...

I keep thinking that I will magically find time to update the blog (which I obviously suck at) but to no avail... until today.  When I get behind on posts it feels overwhelming to sit down and attempt to catch everyone up.  We have had some ups and downs since our last post...  The worst of that being when Landon "coded."  A few days after he developed Pulmonary Hypertension (what caused him to be intubated in the last post) we were walking in and they had called a code on Landon.  His heart had stopped beating and they had to do chest compressions on our little man.  I can't even begin to describe how that moment will forever be etched into my mind, how you are completely numb yet feeling every emotion possible, how the world stands still in the blink of an eye.  To this day they still are not completely sure of what caused it, maybe a bad reaction to all of his medications, who knows.  Landon made it through and within minutes was kicking and happy as a clam as Jason and I held his hand through tear filled eyes.  From that point on Landon proceeded to get better and better.

We anxiously watched as he slowly came off machine after machine.  We were moved into a private room, FINALLY!!!  Things were getting closer and closer and Jason and I are proud to inform you that our little man is now home with us!!!!  There is so much that happened in the interim but for now I will just get you up to speed, we can always go back and talk about the past.  (that would require more blog posts though so don't hold your breath, lol)

Landon came home with us October 24th.  We got to celebrate Halloween and Thanksgiving here and are looking forward to Christmas with our son at home.  As great as it is that he is home, he is still on oxygen, a feeding tube, and a pulse oximeter (measures the amount of oxygen in his blood.)  Landon is at high risk for catching colds, etc., any of which WOULD put him back in the hospital.  We are basically on house arrest for the remainder of winter (aka RSV season) but that is fine with us.  It is not easy being confined to the house with the excitement of the day being a quick stroller ride around the block but I have to keep reminding myself that this is WAY better than being in the hospital.

So far at home Landon has been doing wonderfully.  He is gaining weight, feeding on his own more frequently and we just decreased his oxygen needs this past week.  We still have an uphill battle before us but for now we are looking at the good, our man is finally home.

Here are some more recent pics of Landon, sorry for some of them... they are phone pics:

Our First Stroller Ride in the NICU!

Little Man loves his bath time... this is one of my favorite pictures!

After another bath, this kid might be part fish

Passing our Car Seat Test... one of the last things to do before we went home

"What?!?!  You are really going to let me leave with these people?"

Yup, in the car and about to have a nervous breakdown...  I will possibly tell you about that later :)

Made it home...

Now What?

Hard to see but our first REAL walk, we tried to go to Starbucks but only made it around the block the first time.

Landon's First Halloween Costume, he is a Guido Baby! 
"Fist Pump, Push ups, Chapstick"

"Hey Jason, can you watch Landon while I go take a shower?" 
 "No Problem babe" 
LOL, sleeps just like his dad

Playing with his toy which just happens to be an owl

Happy Boy

LOVES Sleeping on our bed

Naked man after his vaccines

 And a few shots from our mini photo session one morning:

Hope you enjoyed the quick update

Much Love,
Jason and Kristin

Monday, September 5, 2011

September 5th... Back to the Beginning???

The Good... Saturday Bath Time!!!

please get the pits, I'm stinking myself out of my crib...
 I'm watching you two very closely, if you miss anything I'll let you know...
 I think you got everything, can we be done now?

The Bad...

So now that we got the cute out of the way let's move on to the bad. On our return home Sunday night we received a call that our little man was finally losing his battle on breathing. He was taken off of the normal oxygen feed they were giving him (a.k.a. high flow) and put back on CPAP (the ugly tube strapped down to his little nose, which I think I'll rename HippopotoNose).

We had known for a couple days that Landon was having to work to breathe a little bit more than the nurses and doctors wanted him too, but we were all hoping and praying he'd over come the difficulties. We returned to the hospital to find Landon looking a little more like yester-month all decked out in his plastic tubing and looking uncomfortable. We did a quick change, waited for him to settle, and set out on our way home. On our way home Kristin and I both discussed our concerns and made mention that at least he wasn't intubated, but both expressed that we shouldn't get to comfortable yet.

The Ugly
... Phone call at 12:30am?!?!? (on my phone... not a big deal, probably just a friend that butt dialed, however, on Kristin's phone not likely). Our concerns were met and exceeded, Landon figured why work on Labor day and gave up on breathing. The call was immediately made to reintubate and we were back on ventilation just as we quietly feared. Oh and shortly after our arrival at the hospital in the morning we went back on the "Jet" which was our very first ventilator after his arrival May 24th. (yeah! -sarcasm) 

With everything that's happened it's hard not to feel a little defeated, but we're hoping he's just taking a day or two off of work so he can come back on the offensive and kick some ventilator ass.

So what's the diagnosis doc???
To make a long story short, his lungs aren't getting the blood they need to keep up. The "Jet" is going to keep his lungs inflated so he gets the time he needs to build his reserve energy back up and we'll start this over again. The doctor's have prescribed him a couple things to help with the blood flow and some sedatives so he can actually get some rest and heal. There's been a couple of scenarios expressed to us that have some pretty long term effects, but let's pray that those don't happen and if they do I'll explain then.

I'm praying for fast healing and then I'll be going on a campaign for a middle name change from Caleb to "the wolverine"   Landon "The Wolverine" Marley    now to talk the wife into it...

Last but not least a picture is worth a thousand words...
When we told Sake her new friend might be out a little longer.

With much love,
Jason and Kristin

Wednesday, August 24, 2011

August 24th - THREE MONTHS OLD!!!

Wow, how time flies! When I started this blog I had every intention of updating it daily, keeping everyone as "in the loop" as we were.... and I should have known better!  Plans with our little child never turn out as expected.  It has been a month since my last posting and I am starting to get the "Are you still doing your blog?" question pretty regularly.  Sorry!   So I will begin by answering some of the most frequent questions and then give you the run down on the crazy activities of the past month.

"Are you still doing your blog?"

- Yes, I am just crap-tastic at updating it.  My apologies once again, I know that some of you were used to checking in daily for updates

"How big is Landon now?"

- Landon is a whopping 5 pounds 4 ounces and growing daily!  Jason and I are completely blown away by how much bigger he is, he is barely fitting into his preemie clothes now.

"When will he be home?"

- That question is still up in the air and one that pulls at my heart every time it is asked.  We are predicting mid to end of September but it will all depend on Landon.  He is getting closer and closer to meeting all requirements of going home, with one big one ahead.... eating.  Landon has to be able to maintain his body temperature (not need the heated bed), be at least on "wall oxygen" which is the type that can also come in the tank (like you see older people with sometimes), and able to take all of his feedings not through a feeding tube.  There is also a car seat test and a few other smaller things, but those are the major goals right now.

"Is it hard leaving him there?"

- Duh.  I know people ask that meaning nothing but the best and just wanting to understand the situation a little better. I don't wish the feeling on anyone.  Leaving Landon still feels the same way it did the first day.  It sucks, you want to cry, you never want to actually leave, but we can't live in the NICU.   I am in a constant battle of figuring out where to be and when.  If I am at home, I feel like I am being a terrible mother abandoning her child.  If I am at the hospital all day I feel like I am a terrible wife because the house is dirty, dishes aren't done, laundry is piling up, etc.  It feels like a lose, lose at this point.  (but we hopefully have only a few weeks left)

"How is he getting food?"

- Landon still has a feeding tube that goes in his nose down to his tummy.  We have been condensing his feeds to prepare him to take a bottle so instead of getting food around the clock, he is getting fed for an hour, every three hours.

"How often are you there?"

- Depends on the day.  Typically during the week I go for a few hours in the morning, leave around 1 or 2ish and come home to run errands, clean, etc. make dinner with Jason and head back to the hospital at night for a few more hours.  During the weekend I am usually working, plus its Jason's time to see Landon so he spends most of the day there with him.

The past month:

I still am in shock that it has been a month since I have updated you all and brace yourselves... its been a crazy month!  About 3 1/2 weeks ago Landon started getting a little tired, a little grumpy, just not really acting like himself.  After some very persistent nurses continued to raise their concerns it was discovered that Landon had become infected with something.  It started in his left hand where he had had an IV a week or so before as a small bump that turned into a pustule.  They began to run a bunch of tests and found out that it had spread to his blood stream and settled around his left knee as well.  The major concern there was that it had spread to his bone or joint which could have serious effects on his growth.  He was taken off cpap and reintubated (breathing tube put back down his throat) to help him breathe.  Infectious Disease was called in to come look at him and help determine what bacteria was effecting him.  They also called in an orthopedic doctor to check his leg.  After frantic praying for him and worrying incessantly, we were told he had contracted a type of Staph infection but that it was NOT in his bones or joints.  The Staph had formed an abscess in his leg which was drained.  To be on the safe side, the doctors decided to do a round of antibiotics for 6 weeks.   Because these antibiotics are given through an IV, guess what that means.... we are in the hospital for at least six weeks.  Awesome.

Since Landon had to have so many IV's they decided to put in a PICC line (Peripheral Inserted Central Catheter).   It is basically an IV that is threaded deeper into your veins, close to your heart, that can be left in for weeks instead of days.  Landon has had one before and it worked great.  They had to wait a few days though until the infection in his blood had subsided before they could do the PICC, we were just using good old IV's that kept going bad every day or so.

It was finally time for his PICC about a week later and they inserted it into his arm.  The procedure went well but about 48 hours later, the PICC in his head was bad.  Now we are faced with two options, try again with a different type of tubing, or surgically insert a Broviac (basically the same thing but it is put into a major artery in your neck or leg and has to be done by a surgeon).  In order to do the surgery they would have to reintubate Landon.  (side note: once the antibiotics kicked in and Landon was feeling better we were able to move back to Cpap and then eventually onto high flow!!!  See... there is so much that happened I am forgetting a lot) 

They decided to try one more PICC line with different tubing, that lasted another 24 hours.  Sad day... off to surgery we went.  This was last Wednesday, August 17th.  Jason and I spent the day with him and he was taken to surgery around 4pm, I, of course cried.  Surgery lasted only about an hour and it went well.  Landon's Broviac was inserted in his right thigh.  We were thankfully able to get him extubated (take the breathing tube out) the next morning and he went straight back to high flow instead of Cpap. 

As of now, we are half way through his 6 weeks of antibiotics and he is doing great.  We have been able to ween his oxygen needs and the doctors are aiming at getting him to just regular "wall oxygen" ASAP.  Our next big step is to start trying to breast feed.  He has been loving his pacifier and they have been dipping it into milk to get him associating sucking with eating.  Please, please, please pray for him in this next step.  We are not so much worried about his ability to eat, rather his ability to breathe while eating.  Babies with lungs as damaged as his tend to have a hard time breathing while eating since they have very little reserve.  We may even start as early as tomorrow on feeding, I will (attempt to) keep you posted.

I know there are things I have forgotten, its been a crazy few weeks!  We did pass my due date this past Monday which was pretty surreal.  Also, Melissa Young came and took pictures of Landon about two weeks ago, please check out her blog to see them!

Lastly, here are some updated pictures for you...






Footprints on his due date compared to when he was born

8.22 - Yes, I missed a toe but he does have all 5 on his left foot...



Yup... that's our son, flipping us off!

I hope I have caught everyone up at least a little bit!

Much Love,
Jason and Kristin