Medical Mystery...the 3rd weekend

Well, here we are finishing up Audra's 3rd weekend in the hospital.

During the first weekend we thought she would only be here through the weekend. 
During the second weekend we took bets on which day of the following week she would be going home. 
And now, during this third weekend we are trying not to think too far ahead.

Friday
Audra pretty much slept all day Friday...and I mean ALL day.  The few times she did open her eyes she could hardly keep them open for even a minute.  Any attempt to prop her up and get her involved in an activity quickly ended with some shut eye.

The clonidine patch was placed on her back last night and today she is still getting her oral dose twice a day.  The doctors have noted that Audra seems to be exquisitely sensitive to even the smallest of changes in her clonidine dosing so they have opted for an over-sedated Audra for a day or two instead of having another set back with severely high blood pressures. 

Audra has done well with continuous pedialyte running through her g-tube since yesterday afternoon so today's big plan was to put her back on full strength formula.  We won't be slowly increasing her from 1/4 strength to 1/2 strength to full strength like we did last week. 

Audra received a very "magical" delivery today...Mickey and Minnie !!  And even before opening the card I knew exactly who it was from....Uncle Tim and Aunt Dawn

 Mickey is literally taller and wider than lil peanut Audra!

 

 

And they brought the only smile of the day to her face :)

 

Which was quickly followed by some more shut eye for little sleeping beauty.

Saturday
Audra was still very sleepy today but was able to stay awake for an hour or two here and there throughout the day.  Today's plan was to start weaning down her oral dose of clonidine since it is anticipated that the clonidine patch is beginning to kick in by now. 

Grandma and Grandpa came down to visit again for a few hours.  Audra had some serious giggles with Grandpa and the Mickey Mouse balloon. 

Later Daddy and Maura came.  Oh how sweet it was to see and hold my other girl!  We could have hugged forever in that elevator lobby. 

 

 Maura, the proud big-little sister, pushed Audra around the unit in this little car for quite a while.  All the nurses here fussed over her and said what a great sister she is.

 

 Audra got a bag full of cards and well wishes from her friends at school.

All those precious little hand written names lit up Audra's face and melted my heart.  So sweet!!

 

Audra started to perk up after a while and had some fun with her sissy.

 

Today is our 4th Familyversary. 

Such a special day for us as a family. 

I can't believe that it's been four years since we first held Audra in our arms,

and it's hard to even remember our lives without her.

April 8, 2017

 and April 8, 2013

 

In honor of Audra's special day I thought I would share {again}

the video I made for her 1st Familyversary

 

After much encouragement from nearly everyone including Maura, my friends, my parents and even my boss...

I decided to go home for the night Saturday. 

This was an extremely difficult decision for me, especially given that today is THE day Audra walked into our lives, arms and hearts four years ago.  I struggled with a sense of abandoning her, although I knew I was being a little dramatic.  I have never left her alone for the night while she has been in the hospital.  But I needed a quick break to recharge, my other kiddos at home needed a little mommy time, and I really needed a bit of fresh, non-hospital air.  I haven't even set foot outside in 15 days!  And if there ever was a good time to did, now was the time...while she is extra sleepy and has a 1:1 tech assigned to sit at the bedside with her. 

At home the sight of Audra's empty bed and feeding pole/pump made my heart so sad.



 

Sunday
I made it back to the hospital about 2pm after my quick 18 hour getaway.  Turns out Audra had been awake between 2am-6am and then fell asleep for most of the morning/early afternoon...so I didn't miss much.  And my kiddos at home were so very happy to have some time with mommy.  It was hard on Maura when I needed to leave to go back to the hospital today.  She cried and worried about how long it would be until I came home again.  It is such a terrible, torn feeling for a mama's heart when you have to chose which of your babies to be with. 

Today Audra was more awake than the last two days.  She still took about 4 naps, but she spent longer stretches awake in between those naps. 

Audra is now officially off the oral clonidine and is just receiving it continuously via the patch on her back.  So far her blood pressures have stayed steady.  Now we just need to make sure that patch stays put, because if it comes off without us knowing and she is still so sensitive then we could see her blood pressure rebound again.

Audra was most excited about being able to eat real food again today.  She feasted on chicken strips, french fries, and a rice krispie treat for her first meal.  This afternoon she had another abdominal x-ray done to make sure she isn't getting constipated.  She has been receiving and will go home on a cocktail of meds to keep things moving in that department.  With her history of pancreatic insufficiency Audra usually has the opposite problem which is why she takes enzymes before she eats.   But whatever it was that caused her little tummy to slow down so much over the past two weeks led to things not wanting to stay in up top or come out down bottom. 

Here is Audra's collection of new fluffy friends that she acquired since being in the hospital,

{plus pink-flamingo-bunny...who's been with her since her very first day at CHOP in 2013}

And I've joked that she has so many balloons that we could probably use them to float our way home {Up style!}