Christmas in August!

 

 

 

 

 

 

Bath chair, tomato (also known as a tumble form), and the kid kart.

 

(overlook the lack of make-up and hair not being done!  It was a very busy and stressful couple of days!)

WAHOO!  They came!!

 

 

 

Joy was so excited to see what this was all about.  Here is Bella, the Queen of Sheba.  :)  And then with some entertainment added to the canopy.  :)  

 

 

 

 

 

We were so excited, we took a walk – to the mailbox!  The girls ready to roll  …….and then at the curb – wahoo!  Welcome to the great outdoors little one!       

 

 

 

 

 

Bella back in bed.  Her reaction to everything….

For Family Home Evening we took a short walk around the block. (!!)  My family did that!

         

 

 

 

 

 

That night during dinner, we had no nurse.  Jason brought his dinner in to eat with Bella.  “She is lonely.” he said.  :)  Sweet Papa.

She’s making progress!

 

 

Big sister Sammi

 

 

 

 

 

PT – The PT was astonished by how well Bella is doing!  She is making such progress.  Who would have ever thought?

Reaching!

 

 

 

 

 

 

Moving her head to track toys

 

 

 

 

 

 

Putting some weight onto her feet

Roller Coaster

Life with Bella is uncertain, much like a roller coaster.  There are the good times and there are the bad times, but always there is the love.  We love you Bella!

Right now is a good time.  Bella is doing great!  Her pneumonia is gone.  Now that she is eating directly in her small intestines, she is no longer refluxing, therefore no longer aspirating.  I wonder how much energy she was using just on GERD and aspirations because my baby hasn’t even been home a week and look at what she is doing…….

 

She rolled over!!!!!!!

She is having tummy time – for the first time in her almost 10 months of life.

 

I can’t believe it!  She rolled.  She is kicking her legs.  She is moving her arms.  She is acting like a baby!  She lifted her head.  She no longer sleeps all day long.  Is this my baby?  My Arabella?  WAHOO girl!

She is getting off the vent – we are up to 2 hours a day – and sating in the upper 90s.  This kid had double pneunomia last week?  You are amazing kid!

Some super sweet pictures:

There’s No Place Like Home!

We are home!  I am so grateful.

Her hair is getting so long!!

 

 

 

 

 

In the hospital and then home at last….

Our night nurse pulled me aside and asked me if I understood that Bella is a very sick little girl.  Yes, I understand that and I cherish every moment she is in our home.

Hoping for tomorrow!!

Good news – looks like we are going home tomorrow!!

Bad news – looks like her heart would like some more attention.  She is having regurgitation in her her mitral and tricuspid valves.  The mitral valve is more worrisome to us right now because it can cause increased pressures in the lungs.  And with pulmonary hypertension, we don’t need any more pressure there.  Oh well.  It’s another medication and more monitoring.

She lost her IV access (no surprise there.  I was shocked she kept it for 2 1/2 days!) so they had to decide.  Is she staying awhile, then re-stick her and get access or going home, change her meds to PO.   Home won!  So assuming all continues to go well, we should be home for the first day of school!

She isn’t all smiles.  She is uncomfortable and fussy more than usual.  I think it’s either digestion or the site of her GJ tube.  The stoma (hole) had to get bigger to go from the G to the GJ tube.  It’s pretty red and there’s still a little blood when I clean it.  I’m hoping that’ll heal quickly.

Jason and the kids came up last night to bring me more clothes and food.  They love the distraction station – and Bella loved listening to their noise.  :)

Bella during OT:

Long Day, Long Post

Poor Bella – they won’t feed her – and she is hungry.  But the last thing she needs is more formula in her lungs, so she goes hungry for now.  She alternates between being extremely fussy or talking to lady bug.  She is probably telling her how horrible we all are not to feed her!

The doctor doesn’t trust her, so she is treating her very conservatively.  Bella is down to 1/2 a liter of oxygen and sating well.  She still has nasal drainage and lots of gunk that she is coughing up.  She still has the dry smoker’s cough after the gunky coughs.  The RT and I decided it’s probably just irritation.

The doctor feels Bella will have the GJ for a couple of years and then they’ll probably try the radical approach to the fundo (the 2nd image in my notes to self from yesterday) where she will create a new fundus to wrap around the esophagus.  The doctor says it’s not ideal, but it’s what we’ve got at this point.  Poor Bell.  The sad thing to me is that is no food for the next two to three years unless we get a miracle and she outgrows this on her own.  That means no birthday cake, no ice cream, no yummy cookies….but we will have Bella and that’s good.

Bella’s EKG: She hates it when they take all of the stickers off.  Sweet thing.  The nice thing about being vent dependent is that a lot of the tests can come to the bed side – so very nice!

The doctor did say that the nystamus that increases with therapy is because of muscle weakness – one of the joys of DS.  When she is tired or trying to focus on other things, it’ll get worse.  As she ages and gets stronger it should go away.  Great!  It’s crazy – I forget Bella even has Down syndrome I’m so focused on other things.

Super Duper Fantastic News!  My Mom bought Bella the Nap Nanny!  I can’t believe it!  I am so grateful – it will help so much.  And I won’t have to worry so much when she is sleeping!  Thank you Mama!  It’s August and back to school time.  With four kids needing school supplies….it just wasn't in the budget.  We even had a garage sale last Friday (yes, it was 100 degrees outside) to try and raise money for it.  $21 later…..have I ever mentioned how much I hate garage sales?  :)  So, thank you Mama.  Truly!

Bella had her echo – I haven’t gotten the report yet, but I’m not worried about her heart right now.  It’ll tell us about her pressures though, so that will be helpful.  She also had OT and PT.  She has had a busy day!  Look at how well she is using her hands to reach for toys!

 

I am more determined than ever with this reflux to get her sitting up.

 

 

 

 

 

 

We are back from having her GJ tube placed.  It is finished. As soon as her formula is prepped, she can eat.  This is a huge change for us, but it’s what is best for Bell.  It looks very simliar to the mickey – except there is a 3rd port on the button.  So now we have access to her tummy or her small intestines.  I am hoping this will help.

This is the plan…

The surgeon that did her second fundo happens to be on call today.  I am grateful for the seemingly innocent coincidences during this stay.  President Monson says coincidences are God’s way of being anonymous.  I am grateful.  The surgeon remembers Bella.  Makes sense.  It was a terrible mess when she went in there – a partially dead stomach, abscess, fluid everywhere.  I guess that’s hard to forget.

She says that there is not enough tissue left to re-do her fundo.  Which means we are left with option number 2.  Bella will get a JG tube.  The good thing about that is it’s pretty minor to put in (compared to major surgery). It’s done here in Interventional Radiology – just like her PICC lines were.   Bad things – continuous feeds.  Where Bella goes, so goes the feeding pump.  If it comes out, we have to return to the hospital, you can’t re-insert these at home.  They tend to get blocked more than g-tubes.  And the small intestines weren’t designed to be the start of the digestive tract, so a consult with the dietician has been ordered.  Her super high calorie, super fortified formula may need to be changed.  We’ll  see.  And now that I know she is refluxing so badly from just 15 cc’s (that’s 1/2 an ounce), I am going to be so much more paranoid with keeping her up in the 30 degree angle and super stingy with how much flush the nurses and I can use for her meds.  I am saving my pennies for a Nap Nanny right now.

The pulmonologists want a swallow study.  Cardiology wants an EKG and echo.  I’m hoping now that we aren’t having major surgery, just a procedure, that we can be home before school starts on Monday.

Bella is feeling better and I was bored so we were playing:

 

For my record keeping –  The picture that Dr Brandt drew on the crib sheet.  The left is what happened the first time – the fundus is wrapped around the esophagus.  The middle (minus the bold line) shows what was left after they re-sectioned her fundus.  On the right is what she had to do – basically just pulled it over and hoped for the best.  The left picture also shows what the GJ does – goes in the stomach and the tube goes down into the small intestines.  The circles are the sphincter there.  This also explains why she must be feed continuously.  The body naturally protects itself from overeating and just sends out small bits to the small intestines.  By bypassing the stomach, we have to just give little bits or she’ll get sick.  The liquid balance, the osmosis balance, has to be kept in mind as well.  If too much is dumped in there, the body will send lots of water and she’ll get diarrhea.  Other options later on when she’s bigger:  The second image with the bold line this time.  She could go in and staple down to basically create a new fundus then wrap that around.  A more radical option that is sometimes attempted (bottom image) is to bring a section of the small intestine to the surface and feed directly there.

She also apologized again for all that Bell has been through.  In all of the fundos she has done, she has never seen this.  Same thing Dr Stein said and Dr. N, her first surgeon.

Question yet to be answered (or asked) – reminder to self:  The Zantac will help with the acid in the stomach, but will she feel hungry all the time?  Sounds miserable!