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! 

5 comments:

  1. Kristin- I continue to pray for you, Jason and baby Landon. Thank you for sharing your thoughts. Landon looks great! He looks like he is gaining weight, he is starting to fill out. He is a beautiful baby! I know life is hard right now. Try to take one day at a time and look forward to the day you take little Landon home. God is good and has everything under control, we just need to have faith in that. (easier said than done I know) I am just a phone call away and would be there in a minute if you needed me or if you can think of how I can help in other areas of your life. I care and love you all. Aunt Sue

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  2. We are praying for you guys! You are all in my thoughts every day. Keep your chin up. You are doing an amazing job of handling this all! He is so precious and is lucky to have you and Jason as his parents :)

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  3. Hi Kristen,
    This Angela Thomas. My parents, Dan and Linda Davis have been friends with your dad for a very long time, as well as your aunt sue. My mom sent me the link to your blog and I have been trying hard to keep up with it. I just wanted you to know that we will be praying for your sweet family. I can't imagine what you are going through. I'd like to share a bible verse with you, one that I've used often lately. Ephesians 1:11 "Furthermore, because we are united in Christ, we have received an inheritance from God, for He chose us in advance and he makes everything work out according to his plan." I truly believed that God chose you and Jason to be the parents of sweet Landon. He knew you guys would be perfect for the task of taking care of Landon. That little man is SO blessed to have such loving and caring parents. Thanks so much for sharing your journey. My husband and I have 4 small kiddos and one thing I have learned, is to not be afraid to ask for help. Don't be afraid to ask for help with cleaning, shopping, cooking, whatever you may need to help reduce the stress and so that you can spend more time with Landon. I know you have no idea who I am, but I would be more than happy to bring meals to you and Jason or clean or help with whatever the need may be. You can get references from your dad and Sue. ;-) In the meantime, we will continue to pray for all of you!

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  4. I found your blog though Dream Book Designs and I can't help myself but comment! My little girl was born at 24 weeks weighing 1 pound 9 ounces, your journey is very familiar to me! I can't believe he extubated himself, what a stinker! I will be sending my prayers your way!

    Danielle

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  5. I found your blog through one of my favorite home design sites, Dream Book Design. We have twin two year old boys that were born at 24 weeks at Scottsdale Health Care. Our guys bounced back and forth between CPAP and vents several times. And one assisted in removing himself from his vent more than once. We can relate to so many of your posts. Please let us know if my husband or I can provide you with any support or advice. Megan.Bopp@DCRanch.com

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