She is doing great!

Bella, little Bella.  How you are shining this week! 

She is getting big – next week she will be three!  She is a big girl and she knows it.  This trach/vent thing is just slowing her down!  She wants off.  She wants out of her room.  She is ready to live.  Too bad her lungs didn’t get the memo!  Her nurses and I are wracking our brains trying to come up with ways of entertaining her/ teaching her/doing anything with her to keep her busy and happy.

Let’s go for a walk!

Checking out the Jack O Lanterns   Her impressions?  This is kinda gross!  I’ll pose for a picture, but put me back on the vent quick.

Let’s Swing and watch TV with Daddy

Showing my cousin the very cool Ipad and in the walker for PT

I will lean for Signing Time!  Her PT says whatever it takes!

More swinging and playing in the toy box with sister

Then Saturday came and we had no nurse.  Which was probably a good thing, because they probably wouldn’t have liked what we did.  Our neighbor has a Halloween Carnival every year – and this year I brought Bella.  Everyone was so surprised to see her!  And off the vent!  I kept my distance to keep the stimulation down and we went slow.  After a while, she was so tired, breathing super fast, really pulling, so we went home while everyone else enjoyed the rest of the carnival, BUT she went!  And she saw.  And she enjoyed!  It was worth all the medicating we had to do when we got home.

Love ya Bell!

For all you football fans:  (Thanks to Daddy!)

Bella’s Week

Two girls – one nap nanny                            Therapy time

Reading with sisters                                         Being introduced to sliding

What?  You want me to let go?  This is fun?  Are you serious? 

Watching TV in the big room                   If I can’t go outside because I am wheezing too much, I can still swing inside on the Johnny Jump Up!

The Power of the iPad!

What are you doing?

She’s Back!

Her nurses and I are astonished!  She recouped so quickly!  Welcome back smiley girl!

Swinging – she was delighted to go outside!

The joy of discovery – a slinky!

Watching TV in the big room!  Wonder what she is signing?  She is definitely concentrating on Miss Rachel!

Checking out a lunch box – so cool, and look, I can sit on it!

Laying in bed with sissy (it only lasted a moment, but it was so cute!)

OT – playing with a lollipop and the mirror

I am so delighted with myself!

Almost two weeks of no weight bearing had it’s effects, no weight on that right leg again.  Oh well, if that is our only set back from this sickness, I’ll take it! 

 

 

 

 

 

From OT, wearing her inline passy muir valve.  She hasn’t done that in a long time.  She was having so much fun playing with her voice.

The Mighty Warrior (Wonder)

In the not so distant past, in a land near the blue waters of the Pacific Ocean, was born a beautiful and mighty warrior.  To her birth she brought a whole lot of extra fluid, a few holes in her heart, an extra chromosome, and a triple dose of determination, drive, and the will to live.  She determined that each and every day was a battle worthy of her fullest and best effort.  She placed that motto firmly in her mind and began.   She faced death – and conquered.  She meet and charmed everyone she meet.  They sensed inside that little warrior her unquenchable spirit.  She faced down death again – and came off victoriously once again.  She patiently waited as her naysayers listed the things she couldn’t and wouldn’t be able to do – and with patience and perseverance, she started erasing items from their list.  She is the warrior, determined every day.

Bella amazes people that work with her.  “She is a pistol.”  “She is feisty.”  “She is a fighter.”  Yes, I smile, yes she is.  I smile when it takes me and three other grown adults to hold her down for monthly blood draws. (I also cringe – I hate that we have to do this to her.)   It’s that fight, that drive that keeps her going.  It’s that drive that has enable her to make it to this point.  To my Bella warrior!  The definition of perseverance!

Fetalis Hydrops (wonder)

(the first pictures we ever saw of Bella – she’s about two months old)

I’ve been thinking.  Why didn’t I realize how ill Bella was?  I mean I knew she was ill (see here), but why didn’t I have any idea how hard her battle would be.   I had communication with her mother for almost her entire NICU stay.  Well, maybe I didn’t want to believe she was.  Maybe.  Maybe I saw that beautiful face and fell hopelessly in love.  She was a baby in a NICU.  But when I look back over the emails, I see how she was improving.  Just like my other five little girls had done – they all had NICU stays and they all turned out just fine.  She had the heart problem, but we had been told multiple times that once she was repaired, she’d be fine.  Really, though, I don’t think anyone knew how badly effected her lungs were until after her heart was repaired.  As evidence, my email to Bella’s mother after getting back to Texas:

We went to the doctor this morning. He is calling the cardiologist for us to set up her first appointment at Texas Children’s. He says that once she has her surgery, she should be a pretty normal little girl. That was wonderful to hear. The girls are all loving on Arabella and having a wonderful time.

Of course, I knew that she was born with fetalis hydrops.  Her mother had told me, but I didn’t understand it.  All I knew was that sweet little girl, who I thought would be fine, needed a family.  I was happy to make her part of mine.  When we got home from California, I told myself that I was going to go through all of her medical records from her NICU stay.  I tried.  I needed a dictionary for every other word.  I quit and just used the discharge summary given to me for the doctors here at TCH.  I recently looked through them again.  The sad thing?  I can understand them now.  Now that I understand so much more, I have been researching fetalis hydrops again. I don’t have any pictures of Bella as a newborn, but I have googled “fetalis hydrops image” and it isn’t pretty. I have learned that of those diagnosed prenatally, only 20% survive.  Of those 20%, only 50% will make it through the neonate period.  It helps me to understand why her lungs are so damaged.  I have had so many questions of why at almost three is she sitting here on a vent.  I’m beginning to discover some of the answers.