Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Sunday, September 30, 2012

Introducing Bella 3.0

What an amazing week for Bell!  So many firsts and major milestones!

We went to the eye doctor.  She turns her one eye in when she is Sept 30 009sleepy, but he has never seen it, so we don’t treat it.  But her ocular function is great!  No glasses needed.  She doesn’t need to come back for two years, unless the eye starts turning in more.  Awesome!  I would love to hear a half dozen other doctors say see ya in two years!

I took her to the grocery store.  First time ever!  She marveled.  She signed.  Apple, banana, milk, ice cream.   So fun to see her seeing the world!

Tuesday night  - last pictures with the trach


We went to the hospital on Wednesday.  As I wheeled her into the room, she burst into tears.  Too many owies in her past.  The doctor came a few hours later to decannulate her.  I had thought this all through.  I figured if I was the one that had to live with all the stress and worry, I should be the one to do the decannulation.  So when he said, “Let’s lay her down.” Sept 30 012I turned her around (she was facing me), undid her trach collar and place the whole thing (collar, trach, gauze) on the bed beside us and laid her down on the pillow.  He looked down at her and then up at me, “I was supposed to do that!” with a smile.  And that was that.  We watched and observed her for not quite 24 hours.  She did Sept 30 015really well with oxygen and we went home.  A little surreal, especially how hyped up it is.  But it is finished.  She is no longer a vent/trach kid.  She is Bella.  My big strong girl.


The official hospital band removal ceremony,  Joy checking her out to make sure she was OK


The family celebrated Bella’s victory with cake – one with gluten and one without.  She ate half a piece!  Wow Bell!


Asleep in her bed, just her.





Congratulations Bella! You are an amazing warrior! I am so proud of you!

Sunday, September 23, 2012

Processing Post

I did our normal post for Bella already today, but I feel a second post is needed today.  Feel free to skip it!  It’s way long.

This week my Bell is going to be decannulated.  I am feeling so many different emotions that I need to type them out.  I need to add pictures.  I need to respect this place I am in.arabella day 1 007


This is the first time I held Bella.  Oh my goodness, how I feel in love with her.  This beautiful sweet little angel!  She had already overcome so much.  She was born early with fetalis hydrops.



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Home at last – my six girls!  I was so excited!  We knew we had open heart surgery ahead of us, but everyone had told us that would be no big deal.  We would see the cardiologist once a year.  How na├»ve we were!  And those sweet five girls – the hell we were about to drag them through!



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It wasn’t long before we ended up in the ER with this sweet girl who was doing her best just to stay alive.  We showed up stating in the 60s – she was gray.  I was so scared.  We didn’t see the light outside of the hospital for a long, long time.



This post – someone said you must be handling things well and having fun taking these fun pictures – well, no.  The truth was I was trying to take pictures for her funeral.  I wanted there to be proof that she had been here.



I see a couple of things in this picture – I never saw my other children and they never saw me.  The things they saw.  My heart breaks to think about the change in their lives.  And that bink in her mouth – proof that she didn’t always have that oral aversion!



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Then finally she stayed well enough to have open heart surgery.  She took a long time to recover. I started really learning about medicine and ventilation.





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We started hearing the phrase “pulmonary hypertension",  but everyone was so sure that with her heart corrected she would be ready to go home and lead a “normal” life.  We were ready to leave it all behind us.




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We went home – and once again, it didn’t last.  Look how gray she is!







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She ended up back here – sedated, paralyzed, and fighting for her life.





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This picture is from a good day. 

She and I lived at that hospital for so long.  I finally had to hire a nanny for my other poor children who needed someone to love them and take care of them.  How my heart was torn – I wanted to be in both places at the same time!


She had been sedated and paralyzed so long that they had to let her wake up a little – and I got to see her eyes for the first time in three weeks.  Eyes, what a big deal that was!  And the girls were given special permission to come see me on Mother’s Day in the ICU

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We decided to trach/fundo/gtube.  I absolutely loved seeing her little face.




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She went through so much – every day there were new threats.  Always something new.  My prayer for her was to have one day of peace.  I remember having to tell her good-bye.  That is something a mother should never have to do!  I remember the fellow telling me it was time to plan her funeral.  I remember too much.


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I got to hold her – it had been months!





may 19 001Another step backwards.  She just couldn’t catch a break.  Emergency surgery.

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Finally out of the ICU and into PICU.  I had to push for that one.  But this is one reason why: sisters.  They are allowed to visit here.  And we had all been separated for so long!

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The next month was spent recovering and getting ready to go home.  This is our home vent – how thrilled I was!

slowly, slowly, slowly she started to gain some strength.  slowly.

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Finally we said goodbye and headed home to begin a new chapter.  One that contained paramedics, ambulances, and so many trips down town.

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We took her outside!

She had so little reserve.  The least little thing would set her back.  She just slept all the time.






Ambulances were our norm.  We tried so hard to make this normal for our family.

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She had her moments of sickness where we were back in the hospital.    At home, she was mainly in her room.  She just didn’t have the energy for the family.  So whenever she got to leave her room, it was picture time!

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Mainly she slept.  She had therapy and a million appointments, but mainly she slept.




And that basically sums up the first year of her life.  She was so easily overstimed that she panicked when we sang her the birthday song on her first birthday.  But how we loved her and how fiercely we fought for her.  Our lives were turned completely upside down.  From accepting this little girl into our hearts, to being town apart as a family, to having nurses, therapists, and every one else under the planet come into our home 24 hours a day, 7 days a week.  Our lives completely changed.  But we felt it was totally, totally worth it.  She was our amazing fighting Bella.  We would move heaven and earth for her – all she had to do was just please stay alive.  And she did.  We loved her!

Slowly, slowly, slowly, she has gotten better.  She has gotten stronger.  She has built up her reserve.  She can breathe without the vent these days.  She can crawl.  She can sign like crazy!  She can charm anyone.  She is our Bella – the onery little cuss.  And how we love her.  I am so very, very proud of her!  She is the girl who lived.  She amazes me every day.

….and in three days she and I will walk into the hospital to have her trach removed….

and I feel ….

sad and depressed and overwhelmed

It doesn’t make much sense.  I took Bella to church today.  It was the second time she has stayed for all three hours.  And she did great!  But I had to lie with my face and my eyes to the members of my congregation.  Most of these people have never seen her.  Most don’t know her story.   (And if I am honest, yes that bothers me.)  They see her in the hall and I was told over and over, “she looks so good.”  Yes, she does.  and I kept on walking.  I don’t want to talk about it.  Yes, she is doing awesome!  But do you know where she has been?  Is it possible that the trach has come to be a badge of courage in my eyes?  My daughter looks different – and I’m used to that.  I am a medical expert in her care – and I take great pride in that.  I like going to the hospital and being asked if I have a medical background.  How do we just walk away from everything she has lived through?  How do we just pack all that up and move on?  Where is the graduation ceremony?  Where is the acknowledgement that she is a miracle?  How can life keep going when it was so terrible?  How do we acknowledge that she is alive when so many are not?  She will soon be another little girl in a crowd.  She won’t stand out because of her vent/trach/feeding tube/pulse ox/oxygen tanks.  See…I’m officially crazy.  After almost four years of Bella, I have lost it.  In a way I guess I feel like Spock talking to Bones (a Star Trek analogy)

McCoy: Perhaps, we could cover a little philosophical ground. Life
McCoy: Death
McCoy: Life.
McCoy: Things of that nature.
Spock: I did not have time on Vulcan to review the philosophical disciplines.
McCoy: C'mon, Spock, it's me, McCoy. You really have gone where no man's gone before. Can't you tell me what it felt like?
Spock: It would be impossible to discuss the subject without a common frame-of-reference.
McCoy: You're joking!
Spock: A joke
Spock: is a story with a humorous climax.
McCoy: You mean I have to die to discuss your insights on death?
Spock: Forgive me, Doctor. I am receiving a number of distress calls.
McCoy: I don't doubt it.

How can I share Bella with people who don’t know what we have been through?  She is so much more than a sweet and cute little girl.  She is a miracle.  A girl that has faced death so many times and has lived, time and time again.  It is time for this miracle to take another step and for me to adjust again.

Don’t worry Bella.  I will NEVER forget that you are a living miracle!  As my 13 year old would say it, “Bella, you are AWESOME!”

Where to next, little one?IMG_0684  Continue to lead the way and I will continue to try and keep up!

Bella’s life

Waiting for her sedated ABR.   She did really well.  I had all of her vent equipment, but I chose not to use it.  I had to put her on oxygen and her blood pressure got pretty low, but she really did do well.  It was the final thing that showed me that she is ready for decannulation.  We are going forward.  September 26th is the day!  And her hearing?  Just a mild loss.  Yeah!

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Let’s see….playing the piano.  She HATES to be put places in space that are high – so usually the piano bench causes intense panic.  Not this time, so we had to get a quick picture!

Then a great picture of our girl.  She is doing better.  She wants to go and be with the family.  We went to the park and she got to go.  She was thrilled!

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For 9/11 her teacher brought a flag to paint.  It was supposed to be a sensory experience – didn’t happen, but she did paint.  Hand over hand, but it happened!

Cuddle time with Jessi and brother


Playing with Joy.  This playing thing is happening more and more.  When we adopted Bella, before everyone realized how sick she was, I wanted so badly for the girls to have each other – to be friends and playmates.  And slowly, slowly I am seeing it unfold in front of my eyes.  :)IMG_0785IMG_0807

Music therapy- happy days!                     Being goofy!


So excited about this – as I start to allow myself to envision the future, I wanted to find a way to keep her mobile during feedings.  Two hours of sitting still just isn’t happening, so we got an infinity pump and it’s backpack.  Now if we can just teach her to keep it on!