Kicking off 2017 with a Healthy Heart Report!

We've started the New Year off right in the Henrickson household.  Not only did Sloan turn 4 in which she celebrated with friends and family, but she also received another good report from her cardiologist!  We couldn't have asked for a better start to the New Year!

Celebrating turning 4 with a Trolls party!

Another year we were able to give back to celebrate Sloan's birthday.  This year, we purchased new toys for her cardiologists office to give to their patients

With the start of the new year, also comes Congenital Heart Defect Awareness week (Feb 7 - 14).  Since Sloan is now in school, I wanted to come in and share a story with the class about the importance of keeping your heart healthy (exercise, eating right) and that those kiddos born with different hearts need extra care, but otherwise are just like anyone else!  So I went in and read a book to the kids and did a small craft with them.  Trying to spread awareness in all the ways that I can!

Our heart bird feeder craft.  Everyone needs to take care of their heart...including the birds! :)

The bag each bird feeder was put in to take home

All else is going well here.  Sloan really enjoys school, goes three days a week and has made some little friends in class.  Her heart is doing really well and we have no concerns at this point.  Not much more we could ask for than that!

My sweet, sweet Sloan

2016 In Review

Wow, has it really been over a year since I have gave an update?!?!  Well for any of you still following the blog, I apologize and also applaud you for still being here with us!  :)

Since a lot can happen in a year, I am going to try and sum up our 2016 in a series of photos.  Hope you enjoy!  Oh - and most importantly...all is going well with Sloan!

January/February 2016:

Sloan turns 4 with a Wizard of Oz party!  And yes, it was January and she was able to be outside without a coat on!  

For Sloan's annual birthday give back, we were able to donate a bunch of gently used toys that they kids helped pick out themselves to Sloan's cardiologist office.  It was wonderful to see them go through their own old toys and select ones they wanted to pass on to others.

Back to Florida for our annual Clearwater Beach trip with Mimi, Poppi, Aunt Vicki, Uncle Peter and Aiden

March/April/May 2016:

Easter Egg Hunting

Cheering on big brother Drake at his tee-ball game

June/July/August 2016:

First dance recital

SoHa Mermaid

First day of.....PRESCHOOL!!

Signing in at Saint Basil

With big brother, ready for school

September/October/November/December 2016:

First school field trip to the pumpkin patch

Halloween - Snow White and Kylo Ren

Snuggling up in big brothers bed.  The first time they had a slumber party together

I see you Santa!

Enjoying the snow

Ringing in the New Year with friends & family

Let's Play Some Catch Up

We are still here!  You may be wondering as I said I would post a LONG time ago...but I guess time has got to me once again.  So here is some catch up:

• Cardio Update - Sloan has had two cardio appointments since my last post and both went well. She still has some fluid in her chest (which is common at this time) so she is still on her diuretic.  We cut it down to once a day versus the twice a day she was getting.  We hope that she'll be off it entirely when we go back to see Dr Grifka in January.  During her last appointment, we also had an echo.  All looked great and things were functioning as they should be.  So all in all Sloan is on the mend just as the text book says she should be.  Since I haven't given her stats in awhile, here is where Sloan was at:
• Height: 3'0.5" 
• Weight: 32lb 6.4oz 
• Oxygen Level: 92%.  For those of us with no heart complications, our oxygen levels should be 100%.  Sloan has never had 100% and prior to her fontan, she would be in the low 80s.  For children that have a non fenestrated fontan procedure (which is what Sloan had) their oxygen levels should be in the low 90s...so Sloan is right on point

• Fall Fun - The weather was beautiful this fall so we have been able to enjoy a lot of fall activities - jumping in leaf piles, lots of Halloween activities, and celebrating big brothers 5th birthday.  This year our house had a Dorothy (from Wizard of Oz) and a Darth Vader (from Star Wars).  We've had a couple of colds through the house that have hung on for a few weeks, but luckily it's been nothing more than a bad cough and runny nose.

Pumpkin Bowling

Our Dorothy - Wizard of Oz is one of
Sloan's favorite movies

Darth, Dorothy,  my dad and the costume creator my mom

Drake's 5th birthday party - Star Wars,of course!

• Christmas Preparations - We made our annual trip to Chicago to meet with Santa.  Both kids were so excited and hopped right up on his lap to tell them all they wanted.  It was a fun trip!

Santa Trip

We head back to Grand Rapids to see Dr Grifka in January.  Sloan also starts ballet & tap classes in January.  Let's just say she is BEYOND excited.

A Few Day's Late

I'm a few days late updating you that we are HOME!  They ended up pulling her remaining chest tubes on Thursday and then we were discharged on Friday (9/25).  Once the chest tubes were pulled, Sloan was like a new girl.  Running around, acting like herself.

Since we have been home, things have been going pretty well.  Sloan hasn't had much pain, so we have been able to cut back on her pain medications.  We are still giving her some diuretics and her daily aspirin but that's it right now.  Her sleeping schedule is still a bit off - she's waking up at night and not going right back to bed so she ends up in bed with us.  Hoping we can focus on a schedule this week to get back on track before I go back to work.

We have a check up on Wednesday so I will post more after that.  Everyone is very happy to be home and to have the surgery behind us!

Sloan's last picture before we were discharged the next day.
Some of the UofM athletes visited Sloan and gave her a new pink hat.

Drain, Drain, go Away....

Unfortunately, our motto remains - they didn't end up pulling her chest tubes today.  There were two key issues:

1. Her morning labs came back that she is on the drier side.  They don't want to pull the tubes and then when she goes home, and is on less medications to pull fluid off her, she begins to retain fluids around her lungs and become admitted again.  To help with her being on the drier side, they are reducing her medications today which is a good thing as she HATES her meds

2. Her tubes began putting out more fluid over night then decreasing.  They want to see the opposite.  

So to be cautious, they are going to wait another day and if things are going in the right direction they will pull them tomorrow morning.  

Yesterday (Tuesday) Sloan had a good day.  At around 5:30pm she all of a sudden got a burst of energy and was doing summersaults in her bed (it may be due to her having another bowel movement).  So we got out of bed and went to the play room and I could barely chase her around with her chest tubes she was moving so fast.  I had to ask her to slow down!  It was good to see her  more herself.

Feeling more like herself!

We Have Poop!

Well the big news for today is, we have poop.  Finally, this morning, she was able to have a small bowel movement.  If you have ever been in the hospital post surgery, you know that's a big celebration around these parts.  The rest of today (Monday) has been pretty good for Sloan.  She's been up moving around, took a good nap, painted a wooden horse in the Child Life room, ate a good dinner, and has been goofing around with mom & dad.

Found her in bed with stickers all over her face - goofy girl!

They also separated her chest tubes this morning so they can begin to measure if one is putting out more than the other.   Her center chest tube was taken out yesterday so if one of her peripheral chest tubes is putting out less than the other, they could pull that one as well.  They decided to do this because Sunday Sloan had some major back pains.  She pretty much laid in bed all day moaning about her back.  They found out it was due to her chest tubes moving and at least one of them now pressing on her back.  There isn't much they can do for that except monitor it with pain meds and continue to work towards getting the drainage tubes out.  So our new motto will be...drains, drains, go away.

Sloan continues to have a hard time with all the oral medications she has to take.  Many of them cause her to gag/have an upset tummy, so we've had a few baths and outfit changes over the past few days.  Kyle and I are beginning to learn the order and timing of giving her medications in order to prevent her from getting sick.  We are still perfecting this, but it's a trial and error process.  You can say we've had lots of errors (aka: lots of puke)!  :)

One of her, many, baths the past two days. She pretty much hated
each one (and this shampoo cap) so always had this sad face.  

Goals remain the same for tomorrow - eating, drinking, bowel moment, and getting out of bed!

On the Mend

Sloan has made some great progress the last few days.  Here is a quick recap since our last post:

Thursday evening - We had a bit of a rough night, up every three hours for meds which was not a fun, nor easy, process.  Sloan was still showing fear when any nurse comes into the room.  She keeps thinking they are going to hurt her.  So when they come in for medication, it's a fight.

Starting off Friday feeling better

Friday - We had a slow start to the day with lots of cuddle time in the rocking char.  Mimi, Poppi and Drake came up for a visit mid morning.  Sloan was very excited to see them all.  Drake was so good with Sloan, he was trying to make her laugh by making funny faces.  He knew she wasn't feeling good and I think was trying to cheer her up in his own way.  After they left Sloan took a good nap then when she got up was ready to go.  She walked some more, even walked all the way to the play room, began to take her medications without a huge fight, and asked for dinner.  We were quite impressed!  She ended up eating some chicken noodle soup, got a bit of a sick tummy so some of it came back out, but after that she was ready to eat some more.

Friday night Sloan had a great nights sleep, which means mom and dad did too!  Our nurse overnight must have had the touch because Sloan barely made a peep when she would come in and out.  She just fussed a little bit when it was medication time.

Reading books - one of her favorite things to do.  We even found
one of the books we donated in honor of her 2nd birthday in the play room

Saturday - We all slept in a little bit longer (around 8am) which was a nice feeling!  When Sloan got up she was ready to get up and play again.  We had her up and out of bed in the play room which she walked to on her own again.  We also had more visitors (Aunt Lori, Anna, Alex, and our friend John).  Sloan enjoyed the attention. :)  Sloan continued to eat, without getting sick this time, and seems to be more like herself as each day goes on.

Blowing, and catching, bubbles.
Blowing bubbles helps to open up her lungs

Goals for Sunday are - to get her middle chest tube out, get a bowel movement, and continue getting food & fluids down.  I think we are well on our way to hit these goals.  Everyone keeps telling us how she's the champ of moving post surgery.  I don't doubt it with this girl - her determination is something to be proud of.