Thursday, October 18, 2012

Tangled up in Justifications

    I just HAD to do it! HAD TO. Bella is determined to prove her age to the world by overdramatizing the already dramatic temper tantrums.  Bella now has the mark of the beast on her Onsie! The staff was so taken by her temper that they were bringing other nurses in just to observe. I overheard one of the nurses thanking her maker for the end of her shift because of Bella.  So what did I do? EVERYTHING in my power!  I turned on Tangled (rotted her brain), gave her a sippie cup in bed (rotted her teeth) turned off the pulse ox (totally AMA) turned off the light, and left. Doesn't she look quaint? I promise that I won't make this a habit but for her sake, this needed to happen.  Oh how I love this little squirt. 

Keep Clean

Hey everyone! 
The Holliday season is here right along with the flu and RSV. Bella is on lockdown until the spring and we'd like to spend as much time with everyone as possible.  Please get your flu shots if you haven't already and try to stay healthy for her sake and yours. If you plan to come over, or invite us over, look back at the past 72 hrs of your fabulous life. Any head colds, diarrhea, stomach aches, soar throats or coughs? How about complaints of  ailments from anyone you've spent time with? Since August, Bella has already been admitted twice for RSV and once for a stomach virus.  I'd like to think that her feisty personality and newly acquired 40% weight status would boost her immune system,unfortunately, that isn't the case. We love you all dearly and we appreciate all of your thoughts and prayers on her behalf. 

Sunday, September 2, 2012

the Status Quo

    I really need to abandon this ONE post every FIVE months train that I've boarded this last year. Is the excuse, "It just happened" admissible in this circumstance? How about this one, "it wasn't my intention", no?  Okay, I don't have a valid excuse so I will offer a big giant I'M SO SORRY and a hug... ((squeeze)) Did you feel it?
    I haven't quite figured myself out this year.  Each of my legs feel as heavy as 100 pound weights and my mind is lost in utter chaos at times.  I feel vulnerable to the point of shame admitting this but it's the truth my friends, I just can't seem to pull myself together.  I'll figure this out soon enough and all will be well. Just know that your patience and support during this difficult time means the world to me. Enough about me, lets talk about the good stuff... my 4 Sweet Biscuits, the status quo and the status quo ante. 

  We are currently in the process of moving to California. Regardless of the fact that it's been a bit sudden and seemingly reckless, I am thrilled for this change. We decided to move for so many good reasons but I couldn't bare to torture you with a boring novel. Let's just say, There's no time like the present... right?
   We kicked off our big transition out of state with school starting 4 days after we decided to move, as well as on our Move-in day. How 'bout that for a fire drill?  The kids and I drove to California and shacked up in a hotel close to school. Nate stayed behind to work and finish packing up the house.  We registered for school, went "back to school" shopping and made it on time for their first day of school! The "on time" part is where I pat myself on the back.  This entire process was either very smooth or it all happened so quickly that I didn't notice the wreckage along the way. I'm going with SMOOTH...what do you think?

Smiling, healthy, happy and punctual... We were in total control. (wink)


Here's is a little update on life before the big move.  Do you see how much they all have grown? What a lucky woman I am!
Alanah and Ashlynn finished an entire year of competitive dance in April and Jayson never fails to impress with his brilliant mind and music talent.  He completed the Suzuki piano book 1 and performed beautifully at his May recital.  I'm so proud of them for enduring hours and hours of practice...practice and more practice.
 Isabella turned two in July...quite the accomplishment i'll say. Not to undermine her big day, but have you seem her thighs lately?, one more ham-hock please!  She has reached her target weight this past month and is tolerating tube feeds like a champ! She's up to 25.6 pounds and is FINALLY walking.  Bella's cognitive function is between that of a 16 to 20 month old. It sounds low, but trust me, this is stellar news for a 25 weeker.  I couldn't be more proud of her!  Having a birthday is good news but seeing the number on the scale go UP is the icing on the cake...or should I say, the gravy on the biscuit (wink wink). 



 



  I am so grateful to all of you who've kept us and Isabella in your thoughts and prayers. Thank you so much from the depths of my heart.  I can really feel your love and we couldn't do this without you.













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 health.allrefer.com 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 visits...you 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!

Friday, March 23, 2012

Hip Mama Diaper Bag

  I have more bags, diaper bags and purses than I'd like to admit.  Unfortunately, none of them have enough pockets to accommodate our medical equipment.  One fine day while admiring creations by my favorite DIY girls, I came across a link to THIS  fabulous tutorial.  This bag has a front flap with magnetic closures, 2 front pockets, 2 side pockets, 1 zipper pocket in the back and 5 inside pockets.  I added an adjustable strap and a hook for feeding bags.  I used upholstery fabric for the outer bag and quilter's cotton for the lining.  I plan to use vinyl for the lining in my next bag.  I'm SUPER excited about this!  It's big, functional, and cute enough to use as a purse. PERFECT!  
  As you can see, the lighting in my house is terrible, so, needless to say, I didn't get a shot of the details.  I don't know what the corner of the bag is doing in this picture.  It's cute, I promise. I'll upload more pictures if I can snap a few decent one's.  These really don't do justice to her amazing design and my mad sewing skills ( wink.wink).   





 











Friday, March 9, 2012

The Naked truth


Don't ask me why, but us mom's love to strip our little one's down to their birthday suit and stick them in the tub.  We love to watch them try to take off their belly button and put bubbles on their head.  We think it's adorable when they stand at the edge of the tub to watch it fill, or flee the scene with a full moon. We love their perfect little body's and I'm sure we all have the pictures to prove it.  (Don't think for a second that I won't bust those photos out just before prom...'cause I will.)  
Now that Bella's two weeks out of surgery and no longer has a central line, we can ditch the sponge baths and get started on bubble baths and pictures of baby butts! 
Truth be told, I usually tear up a bit when it's bath time and I rarely grab the camera.  She's thin, frail and loaded with hardware. Don't get me wrong, I'm grateful for the hardware...so very VERY grateful! It's the gaunt Ethiopian-esque look that makes me teary.  Not just that, but when I say,"show mommy your belly button", she points to her G-tube which just happen's to be called a Button.  As for the ostomy, I suppose the center of her stomach sounded like a good idea at the time. I miss her little belly button but i've grown to appreciate the new one, after all, it IS her lifeline.  Having the central line out and kicking the TPN with Lipids has been good for her. She doesn't gain weight as quickly as she did but she is healthier and happier. 
We've missed out on the ham hock thighs and butterball tummy, but that's okay. In all her imperfect humanness, she is beautiful and I'm so excited for bubble baths! 









Tuesday, March 6, 2012

Dance Competition

Alanah and Ashlynn danced their little hearts out for the Utah Food Bank. The Will Dance For Kids Project was held at Taylorsville High in Utah.  The day was extremely long and they didn't complain at all! I'm so proud of them for working so hard on their routines.  The entire fund raiser was a blast!  You can see great pictures of the event and read all about the part fundraiser, part competition, HERE!   Thank you to all of our friends and family that donated to the Will Dance For Kids Project! It's nice to hear that a few of you won a prize or two!  




Friday, February 24, 2012

Swassy Chic Biscuit Boutique

Surely you see what I see, a sad and pathetic excuse for a blogger.  I mean really, how hard could it be for me to keep my head above water? 
I remember when I had two, and even three healthy kids, I would look at the homely sweat pants moms and wonder how they got to that point. What terrible tragedy could have triggered these women to give up on fashion, nice hair,manicured nails,clean cars and well groomed children? Now with three healthy, rambunctious biscuits and one medically compromised but totally active biscuit, sweat pants are all the more attractive. Spending an hour on my hair is an hour waisted, too much time and money on my makeup is just that...too much, fashionable attire...yea right, the spit up will be so much more noticeable, manicures are a joke with a screaming infant in the salon, and thank you husband for an elliptical because the day care at the gym is a cesspool. Tragedy isn’t necessarily the trigger at all, it’s just a matter of choices.  I could get up 3 hours early and groom myself, but I won't. I could spend more money dry cleaning spit up out of my nice clothes, but I’d rather spend it on something else...you get my drift? Opportunity cost has taken over my conscience and there is no room for cognitive distortion.  I may look homely but as far as my family goes, my head is in the game!
Here’s a list of how I spend most of my time each day:
  • Making and keeping doctors appointments
  • fulfilling church callings
  •  filling and re-filling feeding bags
  • ordering medical supplies
  • checking blood sugar 
  • helping with homework 
  • laundry/cleaning/filling tummies
  • keeping a daily food journal for Bella (harder than it sounds) 
  • picking up and dropping off at school
  • music lessons
  • dance classes and competitions
 I'm a bit of a domestic engineer, pretty cool eh?  My sanity is of course important and a little me time never hurt nobody...am I right? I’ve been learning to play the drums, sewing,crafting, exercising (sort of), reading books and so forth. Hopefully I can now add blogging to my "me time" list again.  Baking, cooking and sewing for my kids makes me feel like I have my own boutique (non profit)...which I've always wanted by the way...except, not nonprofit. I'd rock the creativity in my nasty sweats and call it the The Swassy Chic Biscuit Boutique  (No...Not really though)!

I'd love to get you all caught up on the Bunnell household's goings-on. To read the many pages that it would take to cover 16 months (for shame Victoria...for shamewould be the epitome of BORING. I hope you don’t mind if I fast track it a little...okay, a lot. A few good highlights should suffice.  
We ended 2010 feeling THIS good:
 Because on November 9th, we brought home one of these! 
After 118 long days in the NICU,
she was finally coming home to stay

and we were finally able to do this...
 and take turns giving her tons of these!
2011 began with Nate feeling a bit less than young, but wouldn't ya know it, he got older?
Everyone else had to go and get older too. Except for me of course.


 Jayson turned the big 8. He was baptized on July 9th and Bella was blessed the same day. Unfortunately, my camera malfunctioned and deleted all of the Baptism and Blessing photos.I managed to salvage few candids from the Luncheon. 



We celebrated Alanah's 6th birthday in style!





We marveled at Isabella's strength to overcome SO many obstacles! After all, she started like this...
...then became like this,



and we celebrated her 1st birthday with her looking something like this! How blessed are we!?



This little gal was next. Apparently Ashlynn thought that 4 was the magical age when she's allowed to wear makeup to school, church and wherever else we went...UM...WRONG!



We played and played some more in NY
What?...like you never bit the butt of a sphinx.





 California







Canada









We did some camping and boating here in Utah!


We shacked up at Primary Children's Hospital 5 times too many!



Despite all of the new changes and challenges that my family and I have faced in the past year, we have kept or sanity and grown closer together as a family.  A loving support group has made all the difference in the world. We are so grateful to those of you who've kept us in your prayers, drove or flew over just to babysit, prepared meals, and called or emailed just to check on us. There may not be a large number of people who truly understand the details of our challenges, but in NO way do I feel alone in this.  I don't have much of a social life, my closest acquaintances are home health nurses and doctors, I almost never keep a play date because of one reason or another, but thanks to you, I am happy.  Friends and family, I love you...we love you and we appreciate your love, patience and kind gestures.  I look forward to blogging and keeping all of you up to speed! I hope you'll forgive my inconsistency since Bella was born and please continue to visit us often.