Dec 1, 2008

Mia Mia Bo Bia Banana....

Today has been CRAZY!!!

Many Happy and not so happy minutes of today.

Happy Minute = Mia slept from 9 - 6 am (until her scheduled blood draw)
Sad Minutes = The lab people came into draw her blood and couldn't get any. I kind of have a reputation with the lab. When we were initially on the floor there were standing orders for the IV team to try and get her labs. I don't know what it is about the lab kids (I say kids because most of them look like they're twelve) that cause such a sick feeling in my stomach. They walk in the door- and I know that they are going to stick her again and again with no success. We have had one lab person draw blood from her... ONE. Anyway, Mia has been a pin cushion today- and it hurts my heart to see her cry so hard. Her blood draws are necessary, I just wish they were a little less cruel. It would be so wonderful if there could be a one poke a day guarantee. It's not that the lab people aren't trained- they are. Mia has had an IV in every inch of her body, and her veins are shot.

Happy Minute = Mia is playing with toys hanging over her crib- it's amazing what a new heart will do. She is changing right before my eyes.

Sad Minute = Mia had a swallow study today because she hasn't been progressing with her oral feeds. The study showed that she aspirates when she swallows. She does have some clean swallows but will occasionally aspirate- which is dangerous to her. She will get re-tested in 6-8 weeks to see if we can re-introduce the bottle. I am totally bummed, she was doing so GREAT! In the beginning of all of this, I just wanted to feed her, now I have to wait longer. I guess if there is one thing I have learned it's patience. This also means that my days of pumping aren't winding down. Pumping is my least favorite thing, but I am determined to stick it out. Mia will be sporting the NG tube for at least another eight weeks. Little set backs are rough, but we can handle anything compared to a few weeks ago. I know she wants to eat so badly, but just needs to heal and get organized- She is my baby hero!

Happy Minute = I passed my quiz for all of the medications. They make sure we are ready to handle home life giving so many meds. The pharmacist guy was a crack up.

Sad Minute = I have to not concentrate on all of the meds because I can already see the side effects.

Happy Minute = She Smiled so much today. She had a huge grin on her face when she was getting an ear nose throat consult. I don't know why she was so happy to see him.

Sad Minute = Her smile was quickly replaced by screaming when he placed a scope down her nose. He looked at her vocal chords and confirmed the suspicion that her chords are swollen. She was intubated for quite some time and it isn't uncommon for kids to struggle with swollen vocal chords. I feel so bad for the little one. I see her smiling at him...she is so trusting and loving. Then she is so confused by having someone gag her with a scope. I don't know how to explain it- but seeing her sweetness only be punished (in mommy eyes) is humbling to the core. I am glad she is a sweetie and won't have memories of these day to day tests.

Happy Minute = We are out of Here on FRIDAY

Sad Minute = No more eating the delicious cafeteria food :D

Happy Minute = Komo 4 news is coming in the morning to interview us.

Sad Minute = I look like I haven't slept in DAYS.


21 comments:

Janet B said...

Oh precious little hero! What a brave baby girl you have! I love the smile in your last picture and I just know that the happy minutes and going to outweigh the sad minutes very soon! Praying for a super speedy recovery with special love from South Africa!

Rebecca said...

SPELL CHECK! How obnixious am I? So...love the cheeks and can't wait to give them a little squeeze!

Rebecca said...

So my first comment came from not really reading the post. I was trying to figure out which poster size family shot to order, and needed to glance at teh one you chose for your blog...so I looked at the cheeks and commented.

Sad minutes are so sad, and I feel you!

A change of Heart said...

Me encanta spell check! Muchisimas gracias.

Katie said...

Hi Mimi - this is Katie Turner from Heber. My sister-in-law Camille told me about Mia. I have spent the evening reading her story. What a strong girl she is, and you and your family are so strong! What a miracle! I'll be praying for her and your family.

Abbie said...

Did I read correctly that you all will be leaving the hospital and heading home on Friday?! Prayers have been answered! I couldn't be happier.

Brimaca said...

Thank you for the pics. I get teary eyed every time I see her cute face. She is so adorable. Her cheeks are awesome! I'm sorry about all the sad things. I remember when M had to get bilirubin checked every day and he would be so content and then they'd stab him. And then whenever the babies get shots. They always smile at the doctor and then their little trust is shattered. I always feel so bad. Your situation is a million times worse so I can only imagine how sad it makes you. You're amazing! Yay for leaving on Friday. YAY!

Kristine said...

Hi Mimi, Thanks so much reading Katie's blog. :) It makes me so happy to know that other moms are getting to know her and rooting for her.

Mia is doing SO well!! She's a true little fighter.

Try not to sweat the eating issue yet. They told us that it would be a very long time before Katie could get off the NG and it was only about 2.5 weeks. She also had swollen vocal cords and "strider" when she cried for the first few months. They told us it would last till the age of 2...it went away in 2 months. In hindsight I would say listen to the doctors (obviously), but try to keep a positive mind and Mia will tell you when she's ready.

We were told that it was very unlikely that Katie would see, hear, communicate, or even have any sense of awareness. Watch one of the videos on our blog and you'll see how she proved them wrong.

Okay, now that I've given you spoilers for Katie's story Parts 3 and 4...I'll go. I know the suspense was killing you. :)

Kristine

The Simmons Family said...

Home on Friday?? WOO HOO!!!! I am SO Exctied for you all!

I just adore those chubby cheeks of hers... they melt my heart.

Nothing is worse than the pokes, the scopes, the scared cry and then being completely helpless. It's aweful!! It will all end soon and she'll be HOME in your arms where she belongs!

Andrea

Erin said...

Friday?!!! Really? FRIDAY???!!!! YAY! I am so happy for you to be home with your baby. And those cheeks....I just want to kiss them. Too Cute! Love Mia's smile, she has grown up so much in the past 3 weeks. I can't believe how much she has changed. So sad that she has to be poked so much...she is definately my baby hero too! LOVED this post and ALL the cute pictures. Yay for MIA!

Kaidence's Mommy said...

Call Me so that we can talk. I understand your worries. I have some ideas for organizing meds and everything else for when you come home. It has worked well for us and it realy made things much easier. Love those little cheeks while you can because believe it or not they will go away once she gets further out from transplant! Did you get my email? I know that you are busy!

Analisa-creator of hairblingzcutethings said...

yeah for the happy moments and i'm truly sorry for the sad ones! it was good to chat last night, hopefully i was making sense! can't wait to see the interview and till your family is reunited. can you believe that day has almost arrived?!!!

Shila said...

Friday! I love friday's, Fridays are the best day of the week! They are the ones where you can look forward to and get a sence of relief when they come. This will be one of the best Friday's of your life! Whoo Hoo!

Stephanie said...

I just love the first picture!!! She is absolutely beautiful and what wonderful news about Friday!!!! Yay Mia...you are doing great!

Katie said...

So glad you posted that "cheeks" shot...she is so adorable and those are the most kissable cheeks I've ever laid eyes on! Friday will be such a JOYOUS day for you all! Yeah!!!! I bet you can hardly wait. Sorry about the pokes, that is the worst! I wanted to kill the IV lady prior to Maddie's Glenn so Bryan shooshed me out of the room before I went off and made a scene!!! They do it so non-chalantly (sp?) too, no feelings attached with those pokes. I guess that's how they're able to do the job time after time. Anyway, just wanted to say congrats and give Mia hugs from us!
Love,
Katie & Maddie

Kirstin said...

Oh my goodness look at those cheeks. She is so dang cute I want to pick her up and squeeze her and love her to pieces. I am so excited that Friday is a sure thing for you. Congrats on getting through all of this.

The Eggett Family said...

Wow What a day you've had!! And Mia!! Draining for both of you I'm sure. What a little trooper. I'm glad she is so smiley and happy atleast when she's not being poked or prodded by someone. And how amazing the she slept for that long, and oh how I love those CHEEKS!!! Amazing little girl!!

The Eggett Family said...

P.S. Do you really like cafeteria food, or was that sarcastic?

Sheri said...

Love all the happy minutes!! Sad minutes not so much. She is such a sweetie! Can't wait for Friday.

jayna said...

YEAH!!!!!! That is so exciting! It truly is such an amazing process to watch unfold. I can't wait to see how much she grows in the coming weeks! So happy for your sweet fam.

Jane Anne said...

I wish I could have seen Mia on the news! Congrats on getting out on Friday. That is going to be one HAPPY homecoming!!!