Praying for our sweet little guy...

Wednesday, April 14, 2010

Recovery.......for all of us










Recovery has been quite a roller coaster for all of us. After we brought Caden home from the hospital after his surgery I think I was on a post surgery "high" for awhile and then I kind of crashed. Not only was it tough to see him in pain and having trouble breathing because his nose was plugged, but I realized I was so focused on the surgery for such a long time that it was a great distraction from all of Caden's other issues. Once his surgery was finished I was so happy that he made it through and looked so great, and then it hit me that this was not the end of the road. See, while I was pregnant with Caden we only knew he had the cleft lip and palate. We were pretty certain there were not any other issues. I kept dreaming of the day Caden would get to have his surgery and we could sort of move forward with our lives. I knew a cleft lip and palate were always going to be an ongoing issue with repeat surgeries, orthodontia, and speech therapy, but the surgeries were the big deals. It suddenly struck me after Caden's surgery when we were at the plastic surgeon's office and surrounded by other kids with repaired cleft lips that Caden has other things that can't just be "fixed" by surgery.

When I was pregnant I was devastated that Caden was going to have a cleft lip and now I wish that was all we were dealing with. It makes his encompassing diagnosis so real now. The lip repair was just one of the many things we have to walk through with our baby. Don't get me wrong, I am ecstatic with the outcome and so relieved that the surgery is over. It definitely is a weight off of our shoulders to have this surgery behind us and that he did so well, but we are still on an uphill battle with our little guy. The doctors appointments, therapies, and questions continue.


The good news is Caden is as happy as a clam these days. His nose stints are off and his arms no longer have to be in restraints so he is a free man! He rolled over for the first time last weekend, too, and we were so thrilled! He is just a little love and he probably thinks he is the cat's meow because everyone is always smiling and kissing on him! His personality is really coming out, too.


The biggest battle for us right now is to try and get his reflux to improve and work on consolidating his feeding so that he is not hooked up to the feeding pump 24 hours a day. It would be great for all of us if he was able to bolus feed someday. That way he could eat 3 or 4 times a day at a half hour each time. This is our next hurdle. He just doesn't seem to tolerate much in his stomach at any given time. He is also refluxing a lot still, and it is hard to watch him choke and gag so much. We are praying for something to change in this department.



On to other news, by the pictures I am sure you can see we added a new member to our family. Snowflake, the bunny, was given to Cara by the "pacifier fairy" Easter morning for giving up her pacifier and blanket. Snowflake has been a lot of fun for the girls. She really likes to be held and Cara is so proud to have her very own pet. If that bunny could only wear a diaper when she hops around it would make things a bit easier. I forgot how much pooping rabbits do!

I hope everyone had a great Easter holiday. Thanks for all the prayers for Caden during his surgery. Also, thank you to the many people that helped with meals and the kids, and dropped of goodies. You people are amazingly thoughtful.

Mary

5 comments:

  1. Look at that big guy looking just as handsome as ever! I'll bet he's always being kissed with all those big sisters around. Get use to it Caden, lots more kisses coming your way! Love the bunny (are you out of your mind???!!!) hahaha Natalie looks so grown up. Make her stop!
    Hugs,
    Sharon

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  2. That first photo melts my heart!!
    Good luck with the feedings/reflux, I can't imgaine. You are an amazing family.
    Kate

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  3. Thanks for sharing your story with us, Mary. It's inspiring. Hang in there , you can do this!! Sally

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  5. Who is the cutest baby named Caden in the world? Caden Lukkes that's who! And who knew you had a playlist? Was it your intent to make me cry??? 'Cause it worked! Maybe some day I will learn how to read a web page AND how to use it!@#$ The fact that my computer is always on mute doesn't help - I guess... Did you know you can train a rabbit to use a litter box? We did it with our rabbit - Rascal the Rascally Rabbit. We called him Sir-Poops-a-lot cause - you guessed it - he pooped a lot - at least the poops are firm. Hopefully Snowflake will be trained before Caden is crawling and can't resist the yummy looking morsal on the floor. :) You are doing a fabulous job with your whole family - take care and be good to yourself... Aunt Gail

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