1.20.2010

A Birthday and a Small Setback...

Dear Sweet Cheeks,
Wow! You are NINE months old today! I can hardly believe how quickly the time has gone by. You are such a tough little man and we are so proud of you. In these short nine months you have gone through more than most adults ever do, but you roll with the punches (and you get a lot of punches) and do it with a smile (except for this picture, ironically!). I wish I could be more like you.

Over the past month here's what you've been up to:

  • You had your second heart surgery.

  • You had your second heart cath.
  • You pulled up completely for the first time (at the hospital, of all places!)
  • You have come so close to crawling, but we're thinking you'll skip that part and go straight to walking.
  • You celebrated your first Christmas.

  • You've become quite an eater...of table food that is. You'll eat anything we give you, as long as it's not made for babies.
  • You enjoy eating crackers, usually on the kitchen floor while I'm cooking.
  • You have gotten pretty good at feeding yourself finger foods. You really enjoy doing this, and usually talk/sing/make noise while you feed yourself.

  • You say "da" and flap your arms and smile a huge smile when daddy comes home from work. You're always SO happy to see him!
  • When you get upset you'll say "mama" but that's pretty much the only time you'll ever say it.
  • You don't say "bye bye" and wave when we ask you to anymore. You'll do it on your own every now and then, but never when we ask. I guess you're just rotten like that.

  • You enjoy non-traditional toys like wrapping paper rolls, gift bags, paper, cell phones, remotes, pens, and cords.
  • You like your new cell phone. We think you think it looks real. There was no tricking you with those "play" cartoon-baby-like phones.

  • You've started pointing at everything.
  • You reach for everything you want, and you seem to want everything. You'll do whatever it takes to get to what you want.
  • You sometimes try to mock funny noises, then you laugh. You have a great sense of humor.
  • You enjoy playing with big kids. You get very excited to see them and watch them closely. You love all of your cousins, and KeKe too.

You're our hero, Derrick. You're an amazing little guy and you have made both of us better people. As I write this, I'm watching you take a nap in your hospital bed. I feel so sorry for you sometimes, but at the same time, you're not the kind of person who wants or needs pity. You've made that evident already. You are so strong and you don't whine and complain. You do what you have to do and you're ready to be happy again. If all of us could be more like you we would all be happier people. We love you sweet boy...more than I ever thought possible. Happy nine months Cheeky!

We love you to the moon and back!

Love,
Mama and Da
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This morning around 3:00 Derrick woke up crying. Not just crying, but really crying. We think he was hurting, so we gave him some more pain medicine and I held him and fed him and he fell back asleep. It felt so good to hold him! It wasn't easy with those chest tubes in, but it was absolutely worth it!
Later this morning one of the doctors came to talk about the plans for the day. She said they probably wouldn't pull D's chest tubes today because he was still draining too much. I thought this was odd because they were close to pulling them yesterday, and we hadn't noticed much drainage then. Well, this morning when we looked there was more drainage. But worse than just more drainage, was that it was milky-looking. We had been told before surgery that this could happen, so we knew immediately what it probably was.

Since this was D's second rodeo, his scar tissue made it impossible to see a few things when he was opened up. One of those things was the thoracic duct. The thoracic duct carries lymph and chyle which are emptied into the bloodstream and go to nourish the body. When the thoracic duct is injured, chyle (a fluid that contains fat) drains out into the chest cavity. Since Derrick still had his chest tubes in, it could be seen in the drainage after eating something fatty. This isn't uncommon, and it's really and easy fix. I say easy fix because it could be much worse...but it won't be easy for the next six weeks.
For the next six weeks Derrick has to be on a NO FAT diet. His formula has been changed to something called Portagen, which is a fat-free formula that we will get from the hospital. It smells terrible and he hated it from the first sip. We even added (a lot of) chocolate syrup to it, but that didn't help either. He'll have to eat fat free foods too. Heidi, I hope you're reading this because we're really going to need you!! If anyone has any fat free suggestions for a baby, feel free to share! He had applesauce earlier, and we ordered "spaghetti" for him for dinner (noodles w/ marinara sauce, yummo!).

This will take some adjusting to, but it is doable. Heart-wise, D is still doing GREAT! This thoracic duct problem is manageable for us and we can take care of it at home, so for that we're grateful. If it's something we can control and make better, it's fine by me. I'm just SO THANKFUL his heart is doing well.

This will slow down our progress of getting out of this place. They pulled one of D's chest tubes today, but the other one will probably be in for another day or two just to make sure the draining stops when the fat in his diet is gone. I think that's pretty much what we're waiting on as far as going home. Isn't that GREAT?!

Today D got a gift from a heart friend, Ivan. He LOVED it!! Ivan, THANK YOU SO MUCH! (I don't have your email address or anything, so email me.) Derrick has been fascinated by the balloon all day, and he carried his new bear friend with him to comfort him when he got his chest tube pulled. That was very sweet. Thank you so much!

D's new fascination, and his little friend looking on.
 
We went to the Atrium today to play. It's such a neat place! Derrick enjoyed getting out of the room and seeing some other kids. He had the infant section all to himself, and we read books and played with toys for almost an hour.


Some of us really enjoyed the toys, while others of us really enjoyed the music!




    Isn't it amazing how resilient children are?  This is about 48 hours after open heart surgery, and our little guy is dancing!  In case you're wondering...the "boxing glove" is to keep him from pulling the IV out of his hand.  It's fun.  We've re-covered his hand about 486 times today, but that's ok.  We have nothing else to do! :)

    Thanks for the continued prayers and support!!  We love you all!

    14 comments:

    1. Glad to hear that things are going well. Derrick looks great in the pictures. We are still praying and thinking of you all.

      Daniel, Amy, Emma, & Julianne

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    2. He is so amazing. I read your update from this morning and was brought to tears. HOW WONDERFUL of him to be awake and smiling. I know how much that means to you all.
      Keep up the positive thinking!
      We will continue our prayers for Derrick and you.
      Heart hugs!

      What a good day!!!

      Laura

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    3. So amazing to see you dancing! Way to go big guy! Boy oh boy those chylous effusions are no fun! Sydnie had the same thing after her fontan. She was a bit older but proably was eathing thins D could eat. We had a TON of spaghetti, rice, fat free crakers, toast with fat free jelly, applesauce, there's even cookies that are fat free (I wish I could remember the name) and they're pretty good! Hope the "fat free" world isn't too much of a problem! I'm so happy to see D doing so well! Happy 9 months buddy!
      Hugs and prayers,
      Sundie

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    4. Derrick looks great to just have had surgery, on day 3. Happy Birthday little guy. We miss all of you, keep up the great job of getting well soon. You are doing great, I love the pictures your mommy and daddy post for all of us to see. We love you guys. Let us know if there's anything we can do for you guys. Carol Hinze

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    5. Wow, D looks so good to have just had surgery 48 hours ago. At least his setback is manageable and it won't keep you there much longer than anticipated. I hope he continues to do just as well and get better. I wish I could bounce back like that so soon after a surgery...the miracle of youth. Praying for you. Take care.

      Kim

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    6. a yummy fat free snack for Derrick is marshmallows. He would love them I bet. They are labeled as a fat free food but still have the sugars and everything else. I just love seeing the pictures of him. He really is such a precious little boy....Happy 9 months D!!! We hope you get to go home soon, but not too soon!!

      Alisha, Jay, Josh and Ryan

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    7. Shannon,

      Thanks for stopping in on our blog. Zachary is doing awesome, thanks to God. He's learning all his brothers' ornery tricks!

      Derrick is such a cutie-pie... I want to pinch all over those sweet cheeks! And he looks AMAZING just days after surgery! Zachy had a tough time after his Hemi-Fontan (Glenn) and was stuck on the vent much longer. Looks like you guys will be going home soon!

      We'll be sure to keep your family in our prayers.

      Happy nine-month birthday, sweet baby!

      Michelle Hagerott
      http://fivelittleboys.blogspot.com

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    8. Wow Shannon!! D looks great! I am so sorry that he got the whole chylo thing. That stinks but like you said...it is manageable.

      Hope things continue to go well for D's recovery with no more speed bumps.

      Stef, Ryan, Wyatt and Logan
      www.whenlifehandsyouabrokenheart.blogspot.com

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    9. So glad that Derek is doing so well. Kasey had Cholothorax sp?? and was on that formula too. But unfortunately it didn't work for him :( glad that it does for D!!

      Nicolle

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    10. WOW! He looks great...It is so amazing..I hate it for the setback and the challenge ahead but 6 wks is doable.Praise God nothing worse. We will keep praying for you guys! Keep sending the updates and precious pics..We love them!!

      Rhonda

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    11. Wow! What a trooper Derrick is! So glad he is doing awesome! Prayers are still with you guys!

      Heart hugs,
      Shannon, Abbie, Elijah, and Micah

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    12. He looks awesome! Wishing him a full and speedy recovery!

      Michelle
      www.withallmyhearts.blogspot.com

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    13. Derrick looks wonderful!!! I'm so glad he is doing well!!! Not to worry about the "Fat Free" thing, it's just a minor bump in the road that I had after my Fontan 20yrs. ago... back then they didn't have a whole bunch of "Fat Free" diet things; My mom made cookies herself and though the were aweful (well not as bad after she dumped a whole thing of cinnomon in the mix lol) it made me a happy camper. Praying for no more speed bumps!!

      Happy 9 Month Derrick!!! Your one strong Little Man!!!

      Sending LOTS of **Heart Hugs** your way!!!

      With LOTS of Hope, Love, and Faith,
      Lauren (22yr. old w/Tricuspid Atresia aka HRHS)

      Blog: www.laurensheart.blogspot.com

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    14. Happy Nine Month Birthday! You have had a "big" month...that is for sure. I am super proud of you for holding that bottle, your mom caught it in a picture you know, so we may have to show it to you to remind you that you can do it :-) Now...this whole fat free concept...no worries..I will still have a list of foods for you to eat when you get home :-) Great to seeing that smiling face and chunky cheeks! Heidi

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