Wednesday, November 30th
I'm going to get right to the point because my emotions are raw tonight.  Kylie is scheduled for her pace maker surgery about noon tomorrow.  She is second case, so we don't have an exact time.  Inside I mentally fought the decision as the surgeon talked to me tonight.  No it's only day 8 tomorrow and maybe it could change.  No Lord I really don't want my girl to have to have continual surgeries the rest of her life.  Bottom line I was not willing to give up the fight.  But as the surgeon talked I realized he was right.  As my new precious friend said we trust and serve a God who holds the universe together.  He knows every part of Kylie's inner workings of her heart.  He knows what's best for her.  So Lord I trust in you now.  And if you choose not to change things till surgery I'm ok. I truly mean this, but it doesn't mean at times, fear and heartache doesn't grip me as I watch my sweet little girl in her hospital bed right now.  Thanks for praying with me...

Snapshot from today...

So good to have my sweet niece Katie (who graduated top in her nursing class) here to help.

I rested well back at the Yawkey house knowing Kylie was in good hands.  And Kylie's 

Aunt Mary got some of the best but little smiles from her.  I came back and the nurse and Mary

were laughing hard.  Apparently Mary set off one of Kylies alarms and quickly pointed

to Mary when the nurse walked in. 

Grandma works on teddy bear Wesley's heart 

with Kylie's new doctor set.

This is what Kylie thinks of walking...

Tuesday, November 29th, 2016

Today's Kylie update is being written by Katie Stoltzfus.

Kylie has some visitors today. Mary Ann (Aunt) and I (cousin) made the trek up to Boston to come visit the little munchkin and help take some turns sitting in her room with her. Lee left this morning to return back home for a couple of days.

Today didn't have too many changes for little miss Kylie, but she has made some progress. At this point, she remains quite and mostly expressionless, and she's not interested in too much at this point. As the day progressed she became more and more alert and active, so it's encouraging to see her continue to progress. She is starting to re-position herself more frequently and more easily. The nurse worked with her to get her out of bed twice today. It's important for her to be getting up and moving even though it is difficult and uncomfortable for her. She was hesitant and resistant to getting out of bed, but with encouragement from the nurse and us she bravely made herself try. True to Kylie fashion, her determination to try shone through.

Child life specialists were able to come by today and engage Kylie in some activities and music therapy. She enjoyed that.

Eating has been a bit of a struggle for her. She has very little interest in trying to eat much. Mostly the best she has been doing is drinking juice. While trying to get her to eat some of her dinner tonight she did verbally ask for water, which was a positive sign because she hasn't really been attempting to talk very much. In order to encourage her to eat a couple more bites of her dinner, we FaceTimed Grandma (Katie Kauffman) and Grandma coaxed her to eat a little bit more. She'll do just about anything for Grandma :)

Thank you all for continuing to lift up Kylie in your prayers. The love and support is definitely appreciated. It's truly incredible to see how many people are invested in praying for this little girl.

Technically food isn't supposed to be brought into the patient rooms, but drinks with lids are okay. Kris and Mom both have started hiding food inside of cups. They are quite pleased with themselves. 

Monday, Nov. 28th 2016:
I'm not sure how it happens that I'm always blogging when I should be going to sleep.  And my brain
is too tired to even think.  Sorry!  Especially since this is not my gifting to begin with.  So bare with me as I muddle through a quick update.  Kylie came out of sedation yesterday about 1pm.  It was much easier than I remember in April.  She fought all the cords for a bit but soon settled down.  I'm thankful they removed the chest tubes right before they brought her out.  Then when she got mad they were able to remove her from the ventilator.  All of her vitals have been good.  We are so thankful.  And her little fingers and toes are as pink as we have ever seen them.  Praise God!  Yesterday and this morning she was not keeping anything down which is normal.  The couple bites at lunch and at dinner have stayed down.  Again Praise God!
Prayer requests:
- fluid in lungs
- heart is still in complete block meaning a pace maker will be needed
- safe travels for MaryAnn & Katie who are traveling here tonight and Lee who is going home tomorrow
- in my sleepy state that I let my light shine with the people around me

Praises:
- successful surgery
- wonderful and kind nurses
- family who are coming to give me a break tomorrow
- an amazing husband and dad right by my side  (Did I mention he stayed in the hospital 4 nights in a row after surgery?)
- Heavenly Father to lean on 24/7

tubes being pulled

first sip since Tuesday

first ride, this is quite a feat with all her things

first walk, not happy about it

daddy reading cards to her from her class mates

Saturday, November 26th, 2016:
Our little lady continues to be sedated.  They keep assuring us things are looking good and she is progressing nicely.  As for the heart block nothing has changed on that end.  The doctor this morning said you never know but his gut feeling is she will need a pace maker.  We will continue to pray for this block to open.  However God knows if she is safer with a pacer, if that's his decision then we are ok with it.  And will be thankful for technology that can keep a heart beating like it's meant.  The plan is to slowly bring her out of sedation tomorrow and to remover the ventilator.  They are starting the weaning process now.  We continue to be amazed at how the hospital flows, working as a team continually.  No decision is made by one person, well except Dr. del Nido.  :)  Incredible blessed to find this man and this hospital.  Thanks Dr. Chowdhury!  Thanks again for all your prayers!

Her temperature is a bit higher than they would like.  This is why the cold compress is on her forehead.  Thankful she is no longer on the cooling blanket.

Since it was apparent we would be in ICU longer than last time, I decided it was time to do some decorating.  We have a lot more cards to go up, but we want Kylie to help open them.

A little Lancaster Co. away from home!  Woopie Pie... :)
If you have never eaten at a Shake Shack you need to, mmm!

Thanks Doug and Shari!

Thursday, November 24th, 2016:

HAPPY THANKSGIVING to each of you!  Even though we are in the hospital with our little girl, we feel blessed.  Our family at home is being taken care of at Grandparents house, Kylie remained stable today, and we were treated royally to a Thanksgiving meal here at the hospital. The food was truly amazing and everything tasted home cooked.

Kylie is heavily sedated, and will be this way at least tonight.  So there is not a lot for Lee and I to do right now.  The nurses and doctors have all been wonderful with her.  We continue to ask for prayer for her heart rythm to correct it's self.  I got the feeling today one of her doctors was doubtful.  I learned a little today about what it looks like.  She would need to remain in ICU till the heart corrects or she has the pace maker installed.  The pace make is a surgery so they would need to open her back up.  Of course nothing like the surgery she has had but still hate the thought.  It would mean at least another week up here.  A pace maker battery lasts on average 7 years.  At this point she would need surgery again.  All of this feels a little overwhelming for Lee and I.  We serve a master physician who can get that little heart pacing correctly in a wink of an eye. Thanks again for praying with us!

Kylie's Spa Day

Chefs hard at work to make us feel loved.

Wonderful Dessert Spread

Lee took his first ever selfie, with this Rhino he found

on his walk, in the streets of Boston.

Kylie says Happy Thanksgiving and she thinks she looks like a little

 Indian girl today on Thanksgiving...

Wednesday, November 23, 2016
SURGERY day started with a scare as they needed more blood with the same antibody.  And till they tracked that down surgery was not starting.  They didn't want to put her down till it was found.  However  Kylie was having such a hard time they decided that it was too much trauma so they put her under as they drew more blood and tracked blood down with the same antibody.  Surgery started two and half hours late.  We were praising the Lord when we heard there was a match and the surgery was on.  The surgery was closer to seven and half hours verses the six hours they predicted.  Dr. del Nido was pleased with how it went.  She does need a pacer at this point.  The surgeon said it could be just from the trauma today, and we will know in a couple days if its temporary or if she will need a permanent pace maker.  We are so thankful for so many answered prayers today.  Ten to fifteen years ago the nurse said this was just starting to be performed.  The surgeon also said this type of surgery is one of his most complex.  Again so much to be THANKFUL for!
Happy Thanksgiving to each of you!

Again we are amazed how one person can be hooked up to so many machines.

 Lee was very intrigued with the little train that goes all by itself.  Of course he couldn't stop with that

and had to see if the train would carry him too.  I was waiting for security to come running.  

.

Mom catching some rays while we waited.  :)

Tuesday, November 22nd:
DADDY arrived...the world is now all right!  There have been 100 "when is daddy coming" since we arrived in Boston last Friday.  We had a sweet night together before her BIG day tomorrow.  Daddy just knows how to get the giggles.  A little recap of her night at the hospital and today.  Our night nurse was the most amazing.  So kind and gentle with her.  Kylie slept well despite the hourly vital check.  Are they really necessary???  Myself not so much.  Anyone who knows me well, knows my emotional state the next day after losing a night of sleep.  Not so pretty!  Kylie has been up and down today emotionally and in discomfort from the cardiac cath.  Tomorrow is the BIG day and she is scheduled for 8 am surgery.  Kylie knows what is coming, and is anxious.  We are upfront and honest with her.  We have a BIG God who will be with the surgeon, Kylie, and us as we travel through this. Thanks again for your prayers, encouragement, and so many kind gestures from so many!  We feel incredible loved and blessed to have you all walking this journey with us.  Love to each of you!

Best part of the day for Kylie and me.

Nurse Kylie works on Wesley her Teddy Bear.

So many have blessed us in so many ways.  This was a wonderful treat today.

This young group of financial professionals gave their time to us tonight!

Monday, November 21, 2016
Today's testing was a bit rough.  We got to the hospital a little after 7am.  This is now the 4th time she has been put to sleep since February.  Each time it gets a little rougher.  After 5 of us held her down to get the Happy Juice as they call it in her they went to option number 2.   Option number 2 was still unpleasant but it was fast.  No Happy Juice on Wednesday morning before surgery.  We will go right to option 2. The heart MRI and cardiac cath both went well.  They did have to use one coil.  Which in very simple terms a plug to stop a leak.  Don't repeat that to any medical professional!  Since they used a coil that means an over night hospital stay to monitor her.  She started coming out of her happy sleep around 3pm and was not so happy.  Poor thing couldn't keep anything down till about 8:30.  But then we saw Smiley Kylie!  It wasn't till 11pm that the blood work was drawn and the last chest xray was taken.  Tomorrow morning we will meet Dr. del Nido to get the final approval.  We are hoping tomorrow all looks well and we are out by lunch to enjoy an afternoon and evening with daddy.  She is so happy he is coming tomorrow.

Praises:
finding a wonderful church yesterday to worship with fellow believers
sweet nurses today
kind heart doctor who placed the coil and took lots of time with us looking at the MRI
Kylie was able to keep gold fish, orange juice, and ice cream down tonight
a wonderful grandma to make life easier while I'm here
and another wonderful grandma helping the family at home

Prayer requests:
all tests look good and surgery is a go for Wednesday
we get to leave the hospital tomorrow for a couple hours
good health and steady hands for our surgeon Wednesday
safe travels for Lee tomorrow

Thanks to each of you who are supporting us in prayer, encouraging texts, and sending cards.

Meal schedule at the Yawkey house.  It is such a blessing getting some home cooked meals.

And no wait at a restaurant.  Tonight I was able to zip out for 30 mins to grab some food. 

Visit to New England aquarium, a special treat we did yesterday.

The look after a turtle 3x her size swam past the window.

Hand puppets were a huge success.  Lots of giggles from Kylie!

Kylie coming out of anesthesia today.

Finally after a long day we saw Smiley Kylie!

Saturday, November 19, 2016  So I've heard the second day after you lose a nights sleep is when it hits you.  Well I've been hit!  Not much to say more than it was a good day of free time.  We just laughed, shopped, did school, and enjoyed Kylie.  We are shocked there are still trees with leaves.  It was a beautiful day for walking. I'll let the pictures do the rest of the talking...

Friday, November 18th, 2016
BACK TO BOSTON..so here goes round two. Many emotions, happy this will be behind us shortly, fear of an intense surgery, and yet peace knowing their is an army of prayer warriors around the country lifting our little girl up to the Holy One!
We left Quarryville at 1:55am so Grandma and Kyle are snoring in the bed next to me.  Already we are prayers, and God is answering them.
Praises:
- safe trip and travel time 6.5 hours, Kylie was either sleeping or singing, never stopped till the hospital
- productive day echo, xrays, ekg, blood work, and at least three meetings with hospital staff
- happy and healthy little girl this week (she kept saying just one more BIG surgery mom, right)

Prayer Requests:
- continued good health for Kylie/and good health for the surgeon Dr. del Nido
- a peace for the cardiac cath and MRI on Monday
- that we can be a light to the people we come in contact with

I have to share this one story from today.  We had her blood work done near the beginning of the day. There was screaming and two of us holding her down.  We were very disappointed to learn later in the day they did not get enough so back to the lab we went.  I quickly ask for prayer support to the last three people I had been texting.  As soon as we got into the lab she knew what was coming and started crying.  I was praying and trying to talk her through it.  After 15 minutes she stopped crying and said ok.  This has never happened in the past.  She patiently waited her turn we walked in and she put her arm out.  There was still tears as they searched for a vein but no struggles.  God clearly heard our cries and answered them.

A few pictures from the day...

Mrs. Ecker & Mrs. Miller see I'm doing my home work!  

A real trooper.

They look like partners in crime.

The beautiful renovations that are completed this trip.

Telling Kylie quite a few times through out the day you can pick a couple care packages tonight got her through and gave her something to look forward to.  She was all smiles.  What a blessing to family and friends for blessing her in this way.  Cards last trip were a real blessing.  When she was too sick to even watch tv she wanted me to open cards in bed with her.  If you send a card a picture of you would be great so she knows who the card came from.

Yawkey House

c/o Kylie Kauffman

241 Kent Street

Brookline, MA  02446