Friday, July 22, 2011

July 21st - CPAP

Landon has officially been extubated (breathing tube removed) and put on CPAP (continuous positive airway pressure)  So far our little man is doing really well on the new ventilator and we could not be more thankful.  I went in later in the afternoon than normal and they had already changed him over.  We were supposed to wait until Friday but they surprised us by doing it a day earlier.  I will have pictures up soon of him on the new ventilator and pictures of his cute little face.   We are not allowed to kangaroo for 48 hours but we can hear him cry for the first time in a few weeks.  He is so much stronger than the last time we tried CPAP, it is crazy.

Thanks again for all of your prayers and we ask that you continue them.  Landon still has a ways to go and a few more hoops to jump through before he is allowed to come home.  We will keep you posted on any new updates besides this. 

Much Love,
Jason and Kristin

Thursday, July 21, 2011

July 20th - Scoping things out

So today we had a specialized doctor come in to take a look at Landon and his little lungs.  We are trying to get him off of the ventilator as soon as possible but really want to set him up for success so we are trying everything to do that.  A pulmonologist came in today to take a deeper look at Landon's lungs.  They put a scope down his breathing tube (hence the title, pretty clever right?!?!)  :)  It was a little unsettling because any procedure can have complications but Landon did well.  They are going to test some of the fluid they got from his lungs to make sure there is no infection but so far we are looking alright. 

After the procedure his oxygen levels went up to 78% (not good but expected after the procedure) but the nurse he had today was able to bring him back down to 29% in just a few hours.  He has not been in the 20's on his oxygen levels in weeks.  I think the steroids are really helping him and hopefully they were able to clean the junk out of his lungs during the bronchial scope.  Our tentative plan now is the extubate (pull his breathing tube out) Friday-ish depending on how Landon does in the next 24 - 48 hours.  I am going to ask for prayers for Landon of course but also, selfishly for me.  I have to work not only Friday but for the next four days after that and hate that I can't be there for him during this huge transition.  I know in my head that he will be fine but I am feeling very torn and sad that I will not be there for him during all of this.  Being a mom is a lot tougher than I thought.  Making decisions like this is so difficult and I had no idea.  You feel guilty as a mom for not being there for your little baby when they need you but you feel bad as a wife (at least I do) for not working and contributing financially when we need it so badly.  Damned if you do, damned if you don't.  I have a feeling this is just the beginning of making choices like this...

Jason and I have felt so blessed though and can't begin to praise God enough for all he has done.  We were told yesterday that Landon's airways look perfect, that you would have no idea that he has been intubated (tube down his airway) for 8 weeks.  Typically babies get abrasions and things from the irritation of the tube but to quote the NP (Nurse Practitioner) "he has the airway of a newborn."  That is not our doing.  Landon has been through a lot and has had multiple breathing tubes inserted in this journey, it is a miracle that his airways look the way they do.  It is a miracle that he is still alive.  It is a miracle that he is taking full feedings, doesn't need an IV for fluids, that his eyes so far show no signs of disease, that he hasn't gotten an infection and the list could go on and on.  Our prayers have been answered and although we are not completely out of the woods I truly believe that God is using Landon to show his faithfulness and power.  Please keep praying for Landon, praising God for what he has done and thanking him for the doctors and nurses we have been blessed with.  The care we have gotten from them has been incredible.  They are so great with Landon but also have made the time to explain everything to us, let us be with Landon as much as possible, make us laugh, let us cry.  The NICU staff is fantastic and has made this journey much easier, I don't know how we would do it with anyone else. 

Thank you ALL for everything, friends, family, and NICU staff!

Much Love,
Jason and Kristin

Still Catching up...

So we are just continuing the updates from the past few weeks of me not posting anything.  Hope you enjoy!

July 11th - Just checking things out

July 14th - Gaining weight!

Landon is now THREE POUNDS.  What?  I feel like that happened so fast, he has more than doubled his weight since birth and we are so proud of our little man.

Big 'ol Fat Man!  :)   No, Seriously.  Look at the difference:


DAY 54:

We are very proud parents, Landon has been doing so well!!!

This is only the second picture we have of the three of us, unfortunately this one is blurry.  Whatever!

July 16th

July 17th - Happy Birthday Friends.  We have three friends who have birthdays today so we did a little photo session to get a good picture for them.

Big Yawn

Ok, so a little catch up on Landon's status.  He has been gaining weight at a pretty steady rate.  They are still concerned about his lungs and the fact that he has been on a ventilator for two months now.  (On a side note, I can't believe he is two months old!)  The doctors have decided to give him another blood transfusion and a round of steroids to get him prepped for Cpap again (the nose prongs instead of the breathing tube down his throat)  They had a set date to make the switch but somehow we/Landon/who knows who accidentally pulled out his breathing tube when we went to kangaroo.  When that happened it set Landon back another week or so on making the switch.  We do appreciate all of your prayers and ask that you continue them.  Everyday with him is one more day closer to bringing our little boy home.  A day that is so exciting and petrifying to think about.  I think it will be quite the transition to go from Intensive Care with nurses and doctors constantly close by to being all on our own.  We are still a few weeks away from that though so I am not going to stress about it yet.  Wow, as I am writing this I am realizing how all over the place I am and how much my brain really has turned into mush!  If you all have questions or if any of this doesn't make sense, feel free to let me know!  :)

Much Love,
Jason and Kristin

Getting Caught Up!

Alright, I wasn't sure if I should post everything in one incredibly long post or if I should do individual posts.  I think I am going to do a little combo of sorts...  So the last post was from July 1st, we will jump ahead and cover the next few days.  Most of this post will be pictures, enjoy!

July 4th - Landon's first 4th of July!!!  And how big is Landon...

SO BIG!!! 

July 5th - Kangaroo Time

July 6th

July 8th - Oh yeah, Landon now sucks his thumb!!!

July 9th - Kangaroo Time with dad

July 10th - More Bath time!!!  Landon got another tub bath but our hands were full with an active, slippery baby so we didn't catch any pictures this time.  We did change out his isolette though so one of our primary nurses got to hold him while another nurse made the switch.  (Hope it's ok that I put this picture on here J, if not let me know and I can take it down)

Look at how cute and tiny Landon is!  And yes, I am fully aware that he is going to hate these pictures when he gets bigger, no man wants the "spa day" look but as a baby it is too cute!  :)

I apologize for a lot of these pictures, they are mostly taken with our phones so the quality is not fantastic on some of them.  Landon is getting bigger and bigger though.  He is starting to open his eyes a lot more and take interest in whats going on around him.  He is much more active and it is so encouraging to see him so much bigger and stronger than when he was born.

There is more to come, promise!
Much Love,
Jason and Kristin

Saturday, July 16, 2011

It's been awhile... again!

So apparently I am getting pretty lazy with this blogging business!  I apologize again for taking forever to update things here.  Things have been up and down as usual, lets see where to begin.  Wow, when checking the pictures that haven't been added, they are all the way from July 1st!  Oops....

Alright, so July 1st we had bath time.  We have shown bath pictures before but this time little man was spoiled with his first ever TUB bath!!!

Lets start with before bath time, our little "baby burrito"

And now, onto the main event... 1st Bath in a Bath Tub!!!
(Well, it is a bed pan for most, but a bath tub for our little 2lb. baby, lol)

After bath time we got to Kangaroo for a little while, my favorite time!

And when we tried to put him back in bed, Landon decided to show off his big muscles for us.  Yup, little tripod baby doesn't want to lay back down yet...

I have more updates that are coming, just waiting for more pictures to load onto the computer!!!  Thanks again for checking in on the three of us and for all of your continued support and kind words.

Much Love,
Jason and Kristin

Friday, July 1, 2011

Where to Begin?!?

I want to start out by apologizing to the people who check the blog daily for my lack of posts!  Things have been crazy for us the past week, lots of ups and downs.  You would like to think, or at least hope, that when you have something monumental going on in your life that everything else can be put on hold a little bit.  That other tough situations would not arise, your finances would magically be taken care of, your house would learn to clean itself, and the list could go on and on.  I have learned a few times now, that this unfortunately does not happen.  Other people get sick, family members need you, bills stack up... life continues with or without you.  This sometimes feels great knowing that "life goes on" as friends get engaged (congrats Danielle and Andrew) and babies are born (Remy and Franklin) and life pulls you along to keep you moving forward, looking ahead, staying hopeful.  Each day that passes is another day we get to spend with Landon, watching him grow, celebrating the accomplishments and crying over the small steps backwards. On the other hand, every day that passes probably ads another thing or two to our "to do list" that at this point seems never-ending.  As overwhelming as it feels, as much as you would rather stay in bed and hide under the covers and pretend everything is perfect, you get up and move on and find out what that day has planned for you.  My great grandma, Nanny Brown, once told me that everyday brings something good, you may just have to look harder on some days than others.  Oh the lessons God is hammering into teaching us these days!  :)

So on that note, where to begin with Landon...

Last update was when he was put on Cpap, or the new ventilator that pushed air through prongs in his nose as opposed to a tube down his throat.  He was doing alright with it, but was struggling to stay stable throughout the day.  He was getting tired and in my completely unprofessional, overly protective mothers opinion, he was still too small for the nose prongs.  He ended up back on the traditional ventilator that he had before on Sunday morning.  It was a pretty traumatic experience for Jason and I and we both learned how quickly your parental instincts kick in.  We had a nurse who was probably more used to dealing with bigger babies than Landon and she was very rough with him.  Jason and I felt like we needed to intervene in the interest of our son.  It is a long story but after a terrible set of cares Sunday morning, I was in tears, Jason was furious, Landon was back on the conventional ventilator, and the nurse was moved to another baby.

When they re-intubated Landon Sunday morning they meant to insert a larger breathing tube for him.  In the midst of the crazy that morning, he ended up getting the wrong size breathing tube.  Not to be one that is ignored for things he needs, Landon extubated himself that next day!  Our little trouble maker...  Landon finally got the bigger tube he needed, on his own terms.  He was doing great with his breathing tube back in and his oxygen levels were down to the 30's.  (While on Cpap, his oxygen needs were slowly rising as he was getting tired.)

Tuesday I got to finally to Kangaroo our little man!!!  It had been quite a few days and I was ready for it.  It was my first day back to work so I was doubtful that I was going to get any time with Landon. I picked up a shift at the Biltmore but got cut early so I was able to head back to the hospital and "Roo" our little boy for a few hours.  I also got to give Landon a bath which was much needed as well!

Somewhere in this mess of days (all of these days are running together now) they did a chest x-ray to see how things were looking.  With the new tube his oxygen needs were rising again and they wanted to find out what was going on.   It looked like his upper right lung was filled with secretions so Landon earned himself some extra attention.  The nurses now put a small machine on his chest that vibrates to break up some of that junk in there and then they suction it out.  He actually likes it and he seems to be getting a little better.  His lungs are just still so small and weak.  A term the doctors use, but I hate, is that his lungs are diseased.  The term scares me and brings up terrible images of gross lungs, so please continue to pray for Landon.  We are so lucky that he has had so few medical interventions and needs, but breathing is a pretty significant need so until his lungs get better we are not out of the woods.

I am sure there is so much I am forgetting about... OH, Weight gain!  Landon Caleb is a growing man, we are now up to 1010 grams or 2lb. 4oz.  He was up to 1060 yesterday, June 30th but lost 50 grams that night.  Here are some pictures Jason and I have snapped throughout the past few days.  I apologize about the quality, they are all phone pictures.

After he was taken off Cpap, he was much happier

No Jason, although it is tempting we are not allowed to lick the baby!

Can you see all the little blonde hair fuzz on his head?!?

Also, if I missed anything or you have questions please feel free to ask!