Thursday, April 26, 2012

3...2...1 BLAST OFF!

I remember when I was a little girl and my father would take my brothers and me to the park to launch rockets. The entire process started with building the rockets but apparently I blocked that step. Maybe I wasn't very good at it.
  Last weekend, my brother came to visit us, he surprised the kids with rockets of their own. What an awesome surprise! For me, those are the types of experiences that are  remembered forever. Alanah didn't take much interest in building the rockets but she enjoyed the blast off.
Listening to Jayson count down and seeing excitement radiating from him was wonderful.  I'm so grateful for the small things that bring families together. Mark and Jayson are so much alike in their personalities.  I have to say that 34 year old Jayson is just as excited about rockets as 8 year old Jayson.  Those two were just a joy to observe.

Spectacled Bear

I've been a bit concerned about Bella's eyes lately.  She is extremely sensitive to indoor and natural light, and her right eye goes rogue occasionally.  After Bella's laser surgery and almost going blind, I tend to freak out over every little detail of her vision.  I took her in for an exam and everything went great! She is free of any ocular diseases and just needed glasses.  I love these frames and lenses because the plastic is very pliable and the lenses are scratch resistant.  They've already been pulled out from under the driver's seat...unharmed.  Sweet right!  She's just so adorable I cuddle her all day, and those eyes...forget about it!   Notice the bottom picture, she took a few bites of toast. SCORE!

Wednesday, April 25, 2012

Update: Bella's Progress or Lack There of

  Isabella hasn't been doing so well over the past few weeks. She stopped eating just after her last appointment and dropped quite a bit of weight. It can't be coincidental that she develops a gross stomach bug every time we go to the hospital. Would it be weird if we wore gloves and masks to her appointments? Of course I'm kidding.
 Bella's dietitian advised me to offer her a bottle every two to three hours. If she refuses to eat, I hook her up to the tube and finish the feed. This seems to be keeping her happier, but the weight still isn't coming.  We just switched her feeds from a completely broken down milk based formula, to a barely broken down nutritional drink.  It seems a bit backwards but she has been tolerating the latter much better than the former.  She's also figured out how to remove the Button Extension from her stomach which makes the overnight feeds a complete waist. Lets do the math. Formula soaked sheets + cold,wet, immunodeficient baby =  More CALORIES LOST trying to stay warm and a head cold. Do you see my frustration here?  Her oral aversion has morphed into a complete distrust in food.  She looks at food and immediately refuses, if the food touches her tray it makes her gag.
Hello mother nature, I'd like a nice plate of despair with a side of defeatism please, and could you sprinkle some hopelessness on it?...thanks!  Dramatic...I know. I'm sure we'll get this figured out at one point or another. Let's all just pray that it's before another PICC Line and TPN is in order.

Tuesday, April 24, 2012

Spring Time is...

   Spring is one of my favorite times of the year!  RSV season is coming to an end, the weather couldn't be more perfect, and everything is pastel and girly (insert cheesy schoolgirl hand clapping).  The view from our home is amazing! The grass is turning green, the trees are blossoming, my flower's are blooming,and of course, there's this...
What other time of the year will I see my husband doing cartwheels at the park if not during the Spring? 

   Friends, family and General Conference has made this Spring one to remember.   It's a rare privilege to see both sides of my family in the same month. Thanks to Easter and my brother in law's, Law School graduation, I was able to enjoy said privilege.  I feel very blessed to have fun and loving  in-law's and extended family on both sides, they are a true joy to accompany. 

   On the Saturday before Easter, we attended an Easter Egg Hunt in our friend / neighbor's yard.  This was no small event, there were over 800 eggs hidden for the kids... i've befriended superwoman!  Just the thought of stuffing THAT many eggs is enough to give a gal Carpal tunnel. Am I right?! 

  Isabella's eyes are extremely light sensitive and the bright sun was causing some problems. We were hoping that her eyes would adjust enough to participate in the egg hunt but it didn't happen.  Not to worry, we found a solution that's just as cute, as it is effective, some SWEET shades.  As far as stuffed eggs go, both of her amazing Grandma's made sure that she didn't miss out on the festivities.  She had candy for the first time... and may have ingested a little grass and foil too.

  Every year during General Conference weekend, I make cinnamon rolls, bacon and orange juice for my family.  It's become a fun tradition and a great way to take the edge off of waking up early on a Saturday.  Mormon or not, these messages are uplifting and empowering for anyone that has or wants to have faith in a higher power and in themselves.  There's always at least one message that pinpoints whatever insight I needed at that time and just fills my confidence cup .  Here's the link again...just in case ;) 

Tuesday, April 3, 2012

Post appointment 411 on Bella

    Appointments between the hours of 10 AM and 3 PM should not exist.  Apparently the schedulers missed the Universal Nap Time memo. All of the babies in the waiting room were fussy, tired, hungry and of course there was a giant NO FOOD sign on the door in our waiting room...of course.  We wandered through the halls snacking on Doritos and string cheese, flirting with EVERY passer by.  Well,  I wasn't snacking on junk, nor was I flirting, it was all her... really it was.  We made the best of our 3 hour appointment and it turned out okay.

Okay, so I wimped out a little with the button change and let the doctor do the entire thing. I observed VERY closely and I could totally do it on my own if I had to. I do have the Doctor's cell phone number just in case.
    On to more important topics. The appointment went well. Isabella weighs about 19 pounds, a measly one pound up from her last appointment but it means that she hasn't been losing weight, which is a huge step for her. CHEERS!
Radiology checked the placement of the tube and it was perfect.  The Dr. thinks that she is swallowing lots of air when she drinks her bottles.  It's taking up enough room in her stomach to fill it, satisfy her appetite and cause vomiting when she's tube fed.  I watched her closely today and she was indeed swallowing LOTS of air.  If I fill her bottle too much and she's able to keep it down, she's in danger of extremely high ostomy output and dehydration.  I can only give her 4 ounces of fluid at a time but she won't drink out of the smaller bottles. What's a girl to do?   She does have textural and behavioral issues as well, but those are manageable. The swallowing of air...not so much. Now would be a good time for that magic wand!  As far as her gag reflex goes, Dr says that I just need to wait it out. I brush her teeth a few times a day and I have noticed that she gags less during the process.  It's looking like we're on the right track with her feeding issues.
My goals over the next 3 weeks are to get Isabella on full feeds without stomach upset, help her to overcome the behavioral vomiting issues, and see her gain about 5 pounds before her next doctors appointment. Baby steps and consistency is what it will take. Slow and steady wins the race, right?!

Monday, April 2, 2012

Coming up!

Isabella has a doctor's appointment tomorrow. I'll be learning how to change her button / feeding tube.  I'm a bit nervous about the entire process so it will be nice to have medical staff around the first time that I do it. As you can see, thanks to for the amazing diagram, her stomach is sewn to her abdominal wall. There's a balloon that is filled with sterile water inside of her stomach that keeps the button in place.  I'll be emptying the ballon, removing the the G-Tube and inserting a new one. It sounds fairly simple but so did changing the ostomy bag... ehem.  
Having this wonderful device has allowed me to force feed Bella, which is great, she's way to skinny! The only downfall is that if she isn't hungry enough, she'll throw up everything i've given her, and more. Then what?...dehydration and a trip to Primary's for an I.V and a slumber party. Oh, and $500.00 every time she visits the E.R. Since October of last year, she's had ELEVEN do the math. CRAZY RIGHT!
At this appointment tomorrow, I'd like them to address this vomiting issue and give me some pointer's on desensitizing her gag reflex. I'm not sure how much of it is triggered by a full tummy, textural issue or behavioral issues.  Surely this isn't the first oral aversion that they're dealing with, can't they just tell me how to fix it and hand me a magic wand on my way out?...Am I right!?  In all seriousness, life without a colon has really been tuff on her. Bella needs more nutrition and hydration, there has GOT to be something more that I can do to get her healthy.  Feeling helpless is torture when it comes to my kids. This is what I'm here for, it is my responsibility to nurture my kids...not to watch them starve to death with a feeding tube in place.
 Primary Children's Hospital has an amazing team of Nutritionists and Gastroenterologists. I'm really hoping for some encouraging feedback after they examine her and evaluate her progress.   I'm excited for tomorrow and hopefully I can report good news to you!  Wish me luck with the button change!