“Bella, Bella, Bella”

That is what Bella’s doctor says about her vomiting.  She has no idea why she continues to vomit so much.  The frequency is actually increasing some.  Poor thing.  We are trying an increased dose of Robinal to see if that will help at all.

The doctor was really sweet to me.  She had to fill out a final medical report for Bella’s court papers.  After laughing at the form, obviously meant for healthy children, she wrote about what a good mother I was.  She didn’t need to do that.  She was very kind.  In other news, we officially have a prognosis, something I haven’t been able to get out of anyone – we are guarded.  Yeah – it’s not poor!  :)

This next section is to record what I am learning so I don’t forget it.  Feel free to skip…

I have been learning a lot about the difference between ventilation and oxygenation lately.  Yes, she did great on Christmas, but it wasn’t good for her to be off so long.  She has had to pay the price since Christmas night.  Oxygen has been our friend since then.

I have learned about the relationship between oxygen and getting off the vent.  One of my questions today was about our goal to get off the vent.  Back in May when she got the trach, she was so fluid sensitive.  She either had to be a little dry or perfectly even.  Any extra fluid went straight to her lungs.  Part of the problem is when she breathes off the vent, she breathes very rapidly.  She pulls and works – hard.  She creates pressure in her chest cavity, so the extra fluid goes in her lungs.    With the trach, the pressures are different, so she can be positive and do fine. Now as we do these trials, she is sating well, but breathing so fast again.  So I asked the doctor, if we get her off the vent, aren’t we back in the same place we were before?  Yep.   It’s a delicate balance she said.  The same thing I have heard other people say.  We have to wait for Bell, but not wait too long.   The hope is that her pulmonary hypertension is controlled and as she grows, her lungs won’t be so bad.  She said she had another patient that had bad PH and was weaned successfully from the vent between 2 and 3 years old.  OK.  A realistic goal is always good to have.  But then in my mind is the pulmonologist that wants to wean her so badly.  Hmmm….  How I wish I could get everyone in the same room at the same time.  I get such contradictory information.  Is this extra fluid floating around in her body cardiac or is it due to her rapid breathing?  Is this something she will outgrow?

Goals: 

1.  Using wisdom, get off the vent twice a day for 30 minutes.  Use O2.  If she is on O2, use more.  If she is at 3 L, don’t do it.

2. Get the nurses to follow this.

3. Robinal trial – watch for adverse reactions.  Heart rate increase or drying out the secretions in her lungs so much that she starts getting plugs.  Is it helping to decrease the emesis?

4. New formula – due to dumping syndrome, we will start with peptamen junior plus nano vm supplement (got to get ahold of all that) instead of pedia sure.  Adverse reactions to watch for – distended tummy or diarrhea, increased fussiness

Merriest Christmas, Bella Love

Bella did so well on Christmas Day.  She was able to come off the vent and spend a lot of time out with the family!  I absolutely loved that!  She was off for 7 hours – I couldn’t believe it.  Today she is on 2 liters of oxygen.  I probably wore her out!  :(  But listen, she is starting to talk – isn’t it so cute?

 

Talking to Aunt Kathie on Christmas Eve.

 

 

 

Santa couldn’t resist these stocking stuffers!  They reminded him of California and Texas – Bella’s two home states! 

Making and eating Sushi with the family – and then watching the Wii.

 

Hanging out in the kitchen while Mama made her Chocolate Cake.  I love holding you Bella!  I love the holidays that we have more time together!

Two pictures that I stole from Aunt Kathie from Christmas Eve.

The Martinez Family Visits

Danielle and kids got to come and play with us for a couple of hours.  This was Aunt Danielle’s first time to meet Bella!!  Then we made some reindeer from candy canes.  We brought Bella out to join in the fun.   It was so fun to see them!

Bella loved the feel of the ribbon!

So Close…

I just finished my last form for Bella’s adoption (I hope!)  This has been the secret battle we have been fighting behind everything that Bella has been fighting.  Lest you think otherwise, it wasn’t anything to do with her birthparents.  They have been wonderful and so sweet.  No, this has been with the states of California and Texas and the federal government.  Oh well – I think we are finished. 

It’s crazy filling out all of these forms.  How do you explain in a form that you love your daughter more than you ever dreamed was possible?  How do you explain that no, she doesn’t “do” any of the normal development things, but you love her unconditionally regardless?  How do you explain the hell that she has been through in the short three line space for medical?  How do you explain that yes, our lives are 100% different than they were before this child was placed with us, but that she is our child – and she was worth every change, every difference?  Where is the line that says, “I love her, please hurry up and make it legal!”

We love you Arabella!

Doing so much better…

Feeling the sisterly love….

Out of bed!  Mama is so happy!  The many faces of Bella…

You are so cute Bella!  I love you so much!

For Christmas, my Mom and I are making Bella a kick board.  A board that she can push against while laying in bed.  The therapist helped me with my brainstorming.  We thought to add panels of different fabrics so that she would have be able to feel the different textures – more sensory input!  The panels are done – She loves them! 

 

She wanted to taste this one!  :)

 

 

 

Playing with her hands and feet!  Wahoo!  It’s working already!

 

Blessed

Today I have been reminded by life events in two of my friend’s (Lacey and Kristin) lives, how truly blessed I am to have my sweet Bella.  So I just wanted to take a second and acknowledge my gratitude for her presence in my life.  I thank thee. Very much.

A Plea for an Orphan in Russia

Please Grab This Button!
URGENT PLEA!

This sweet little one has touched my heart.  She will be four in January.  At the ripe old age of four, she will be transferred to a mental institution.  It’s terrible to think about.  She is healthy.  She doesn’t deserve that kind of a life.  She deserves a life in a home with a Mommy and a Daddy. 

If I could figure out how to leave Bella for the travel required, I’d do it.  I’d adopt her.  I’d love her and help her to experience all that life offers.  I hope there is someone out there that feels like I do.  Someone who would travel half way around the world and bring home this sweet girl.  It would cost about $25,000 to adopt from this region in Russia.  If we were to raise funds for her adoption, the chances are higher she would be adopted.  Just think if 250 people each gave $100, we’d be there.  If you can, please donate.  No child should lay in bed all day until they die.  No one should live without love.

Some Cuteness to Share

Yes, she has been sick.  Yes, she spiked a new fever this morning – 101.4, but she is still the cutest 13 month old I know.  Thought I’d share this cute video of Jason and Bella playing.  Bella loves her Daddy – you can see it in her face.  And you’ll see her new trick – waving hi!  Her therapist and I think that she hasn’t quite put together cognitively that waving is saying hi, but she is doing it, so we act like that is what she means.  :)  It’ll come.  On to the cuteness….

 

Feeling a little better

Joy saying, “Hi, sissy!”

Bella is only vomiting about six to ten times a day now – back to normal.  Yeah!  Her fever is gone.  She was put on gentamicin again, but I think it was just viral and ran it’s course. 

The poor thing is teething.  Her bottom front two teeth are in, but that pesky molar is taking it’s sweet time.  She is not a happy camper.   Hopefully soon it’ll break through.

Update

I haven’t posted lately because nothing has changed.  She is still vomiting and desating.  She is still hopping on and off of oxygen.  Her bath took a hour and a half this morning because she kept vomiting.  Poor thing.  Sammi braided her hair.  I think it’s so cute!

An Educated Guess

Really that is what it comes down to.  After years of training and experience, doctors just do their best.  I remember one day during rounds asking a doctor point blank, “So you are just guessing at this point?”  His answer, “But it’s an educated guess.”  :)

The doctor has reduced Bella’s intake and increased her lasix.  She is still vomiting.  We are hoping to see cardiology this month, but they have to work us in, so we’ll see with the holidays.   Her Primary doesn’t think it’s cardiac, “unless it’s cardiomyopathy” (cringe).  Pulmonology and cardiology think it’s cardiac.  So we’ll go see the cardiologist and see what’s going on.

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!