It is what it is…

When Bella was still in the hospital and doing so poorly, my favorite scripture was 1 Nephi 22:31, well at least the last line.  The whole scripture is Nephi telling everyone that they have to be obedient to the commandments and endure to the end to qualify for salvation.  My fav part is the last line, “And thus it is. Amen.”  That is how I felt about everything Bella was going through.  It was just this way and we just had to deal.  Period.  End of story. 

We got her trach, fundo, and g-tube back in May with the hopes that it would allow Bella to come home and lead some type of normal life – at least a life at home and with her family, instead of at the hospital.

As time has passed, my expectations have risen.  I want her to have a normal life.  Then there are days like today and I am brought back to reality.  A couple of people have met Bella for the first time lately and I have heard, “it’s a little hospital in here” – exactly what I was trying to avoid.  Today Bella vomits if she sits up.  I am reminded that this is her reality.  Her life.  We did accomplish our goal set in May.  Bella is home with her family.  The life that she has, while not what I want for her all the time, is her life.  And she is happy with it.  She loves her toys.  She loves her movies.  She loves interacting with the family.  She is content, so I am content.  And thus it is.  Amen.

 

 

Chewing those fingers off

 

 

 

 

 

Playing with ladybug – the joy!

Meeting Aunt Angie

Aunt Angie is in town visiting and got to meet our little love.  Thanks for stopping by Aunt Angie.

Up and Down

On Monday during PT, we talked about how she just can’t do any tummy time with all of her wires.  She was doing so well, that I decided she could do a small HME time during therapy.  She got to be on her tummy!  But we sure did wear her out!

 

Currently, she is not feeling well.  Her temp is elevated.  She is struggling with coughing and vomiting.  She is so sleepy, but not feeling well enough to rest well. 

We have been in communication with Cardiology.  They agree with Pulmonology that this is cardiac.  They agree with the addition of Lasix and they are trying to fit us into clinic.  This is not an emergency, but they feel she needs to be seen.

Grandma and Grandpa

 

Grandma and Grandpa are visiting from Iowa.  The last time they saw Bella she was in the ICU.  What a difference!!

 

 

 

Bella Bug

She is so cute!  I could eat her up!

Bella is now on daily Lasix, and it’s helping!  She is on room air again.  Her liver enzymes are high, so we have to check that out next week.  The poor thing is teething.  Her 2 front bottom teeth are here, but those molars – ouch.  They are hurting her so much.

 

Onto the good stuff …

LOOK at what is in her mouth!!!  It was only for a second, but she didn’t throw up!  She is making so much progress on her oral aversion. 

 

 

And after thinking and thinking about Lacey’s post, we took Bella for a walk.  She loved it!

Teeter-Totter

Up and down.  This has been Bella’s O2 requirements.   Everything from HMEs to 3Liters.   She will be great, then terrible.  The theory is her heart is not moving the fluid around in her body appropriately.  So it is backing up into her lungs and then into her body tissues and back and forth.

We are on gentimician.  Today they started Lasix (on top of the other 2 diuretics).  Sounds like we need to visit with our friendly neighborhood cardiologist again.  For those in the know, yes, there is a drug response between Gent and Lasix.  Yes, it does cause hearing loss.  Yes, she does have mild hearing loss as a result of her past usage.  But I’d rather have a living baby with a hearing aid than the alternative.  :)

Her liver panel is due today.  Fortunately, we talked them into letting our home RN do the blood draw.  I’ll drop it off at LabCorp tomorrow AM.  One less trip for Bella to make.

Some cute pics:

Yes!

I feel like dancing.  After a vascular dilator and a bronchial dilator and 3L of oxygen, we are finally back inside of Bella’s limits.  Yea!

But the scary thing is, I have no more wiggle room.  Anything above 3L means hospital.  Come on inhaled antibiotics, work your magic!  I don’t want another weekend at TCH.

Jessi Singing and Decisions…

This is a low quality video of our Jessi singing to Bella.  This is Bella’s song from Songs of Love.  We think it’s sweet – and right on with her sweet personality.

Jason and I have some decisions to make.  After much paperwork and the nursing home stay, Bella qualified for MDCP (Medically Dependent Children’s Program).  It gives us more nursing hours and a certain amount of money for home modifications.  We are grateful for the nursing hours.  Our nurses are life-savers and I am grateful to have them.  I am grateful for the money for the home modifications, but we aren’t sure what to do.  Bella’s room was our formal dining room.   We want to add doors to her room for privacy.  The paramedics have asked for a sidewalk.  As they carry the gurney out to the ambulance, they have to walk over our pavers and some tree roots.  For safety we will do that.  But what else?  Unfortunately, this is a one time shot.  We have to do everything right now.  We can’t do some things and then in a couple of years, do more.    Well, I guess we could, but we would be paying for it from our own pockets.  Today I talked with her nurse, her therapist, and the contractor who specializes in remodels for those with disabilities.  If only we had a crystal ball….will she need a roll in shower?  Or will she become mobile?  Today, she will not tolerate weight on her legs at all.  If you pick her up, her little legs curl up like frog legs.  Will she get off the vent?  Today we are desating again.   Hmm…I just don’t know whether or not to try and add some handicapped accessible facilities to our house.  The contractor said to also keep in mind resell value.  If we start adding random showers and closets to rooms, how will we ever sell?  Not that I see us ever leaving, but….   And what if this coming summer she suddenly gets better?  Then I don’t need any of it.  Sigh…I need a crystal ball.  :)  What a blessing that this program exists.  Even if there is stress, I am grateful for this opportunity!

More time outside and with family

After bowling for my brother’s birthday, we came here for cake and ice cream.  It was so nice, we went outside to eat.  (I need a bigger table!  :)  )  Bella was just starting her HME time (read she was off the vent!), so we thought it would be easy to bring her out to join us.  I love when she can be with everyone. 

Grandma brought over Bella’s birthday presents - this colorful noisy toy that plays 4 instruments sounds and a sample from a symphony and a brightly colored pull toy – a ladybug, in fact!  But more importantly, Grandma got to hold sweet Bella.  I love watching Bella’s personality emerge.   She is a very quiet little person.  She wants to watch everyone.  She notices everything around her.  There is a very sweet presence around her.  She is very calm and time just seems to move a little more slowly around her.  She’s content.  We love ya Bella!

Happy Birthday Bella!!!

Sammi wrote the first song for Bella.

Here are her lyrics:

Bella you’re a butterfly.

You spread your wings and start to fly.

And so I’m here to write this song,

And hope one day you’ll sing along.

Cards and Presents…the Good Stuff

Enough of the emotional Mom bit…bring on the good stuff. 

 

 

When I opened Aunt Kathie’s card, I handed it to her.  I had no idea what she would do with it.  She was delighted!  Thanks Aunt Kathie!!

  

 

  From us: luggage.  I know it’s not very exciting, but we have these two ugly bags for all her trach supplies and everything we have to carry with us when we travel.  Now we can travel in style!  :)

 

 

Grandma and Grandpa Turpin sent Bella some money.  We went out and got her a My Pal Violet from LeapFrog.  It says her name, talks, and plays music.  It’s so cute and she is really enjoying it!  Thanks!

 

Even though Bella can’t eat we still can!  So I picked out a chocolate mousse cake, oh so yummy!  Happy Birthday little one!

Happiest Birthday to my Little Love!

What a day this has been!  I am a little bit emotional, a lot a bit emotional, actually.  My kid’s are reading the Harry Potter books right now and the title to the first chapter of the first book keeps going through my mind, but slightly altered…..

The Girl Who Lived…..

There have been so many days when I didn’t know if we would see this day.  One year of life.  What an accomplishment, little one!

My sweet girl who has been through so much.  Who has fought so many battles.  Who fights daily, even today…  My sweet girl who defies all the odds.  Who has no prognosis.  Who gets a new diagnosis every time we go to the doctor, it seems – including two days ago.  Sigh.  My sweetest girl.  You have taught me so much – about love, about strength, about courage, about hope.  I love you, my Bella.  Happiest birthday!  May there be many, many to follow. 

Today my thoughts have been with Bella’s birth parents.  One year ago a lot was going on.  Our sweetest girl was born with fetal hydrops.  She was born early.  Her birth weight was 7 pounds, 11 ounces (my birth weight, by the way).     When they were done draining the fluid from her body, they used 4 pounds as her weight.  I don’t have a picture of her at birth.  I can’t imagine what her little body was doing then.  But I have a small inkling from all of her struggles since then.   My heart is full for her parents and all they were going through.  My heart is full of gratitude for all the doctors and nurses at Saddleback Memorial Hospital that loved her and kept her alive.  I am grateful for all the doctors, nurses, fellows, residents, CNAs, EMTs, paramedics, medical supply companies, and people that keep my baby alive every day.

Bella, you are a jewel!  You teach me so much every day.  How I love you my dear sweet baby!

Meeting my little love in January……

My sweetest girl today….and her cards and balloons…..

We love you Arabella!  Happy 1st  Birthday!