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