Friday, December 9th:
WE ARE HOME!!!  We got the final paperwork signed at 7:30 last night and were on the road at 7:35.  Traffic was light and it took just under 6 hours.  Ironically I got home exactly 3 weeks to the hour/day of when I left.  A lot happened in those 3 weeks.  There were ups and downs, but when I look back I could not be more grateful for the care we received and that Kylie has a heart that is functioning the way it should. I am thankful for family and friends who helped at home and at the hospital.  There was meals brought to our house, cards to encourage us, care packages, safe travels for family traveling back and forth, rides and homes for Kate, texts checking in on us, and most of all a peace that only comes from our Father above.  We are BLESSED!  Please continue to pray for healing.  The blood clot is very painful.  I also need to give her an injection 2X a day.  This is hard on both of us.  Today she was back and forth from the sofa. Would play a little and then rest.  Thanks to each of you for following along on our journey.

Blessings and Peace to each of you this holiday season!   

Kylie's card wall at the hospital.

Good Bye Boston Children's Hospital.

Kylie's favorite blanket and spot today.

Thanks to family and friends who decorated for Christmas, made

 Kylie and Kate's bed room special, and even hung Christmas ornaments in our room.  

Wednesday, December 7th:
We are praising the Lord as our little girl's smile and sense of humor has returned.  We were teasing daddy tonight by hiding his ice cream.  No this one was not medicated and yes he does have a love affair with ice cream!  Don't tell him I said that! Now back to Kylie.  Yesterday was a fantastic day with lots of smiles, walks, and eating more.  Today started out that way but pain in her left thigh took her joy. They did an ultrasound and discovered a blood clot in a superficial vein.  They assured me this is not dangerous but it is painful.  After some advil and hot packs Kylie's smile is back.  We had gotten approvals for discharge tomorrow, but this could change things a bit.  We will know more tomorrow when her cardio team sees the ultrasound.  Please pray this clears up quickly and we are on the way home.  This trip has felt long, but we have much to be grateful for.

The real Kylie smile returned yesterday.

Daddy painted Kylie's toenails before I got in this morning.  

Not bad...

 

The Turkey Hill Ice Tea is almost gone...time to go home!

No Turkey Hills in Boston...

We visited a winter wonderland Party today on floor 1.  They did a fantastic job

of making the kids feel loved.  Crafts, stuffed animals, hot chocolate/doughnuts,

and pictures with Olaf...

A note from Kylie's 3 week old roommate who got to 

go home for the first time in his life.  Now we are

sharing a room with a cute little spanish girl who

is still watching TV and it's almost 11pm... 

The true meaning of a messy bun.  Seriously a shower cap head washing and

a brush was no match for this tangle.  I need a whole bottle of cream rinse

 or detangler when we are home!

A gift from a dear friend that came at the perfect time. God knew...

Monday, December 5th:
They say laughter is the best medicine, and I'd have to agree.  Nothing feels better than laughing so hard you are exhausted when you are done. Today I had one of those laughs.  We were having a hard time getting a med in Kylie.  The liquid came right back out.  We tried the pill and she spit that out. So last resort was to crush it and put it in her ice cream.  The nurse brought it in and put it on her tray beside her bed.  I was busy and didn't notice that Lee picked it up.  Lee loves ice cream.  And Kylie typically eats 2 bites of one thing and we eat the rest.  So Lee was helping her out with her ice cream when I looked up.  I gasp and said no don't eat it, her meds are in there.  The nurse looks up horrified and ask if he ate any.  He has a smirk on his face and I am now full out laughing!  The nurse just stood there flustered.  I have now totally lost control.  And if you know me you know I am crying and can't say a word.  Mean while Lee is amused watching the nurse and me in hysterics.  I don't remember what she said when she left, but every time she came back Lee made up something about not feeling well, I'd yell at  him to be nice, and start laughing all over again.  Eventually the nurse was laughing too but it took a couple hours.  She said as she wrote up the report it struck her funny and said in 25 years this has never happened.  She also said she will never hear the end of it from co workers and probably a new rule will happen where you can't put meds in ice cream.  So there you have it.  I'm hoping you are smiling or laughing as you read this.  I have a BIG ole Jessie cat grin on my face...

Ok onto the upade...We are so THANKFUL Kylie had a better day.  Her xray was better and we started to see a little Kylie come out. Tonight she looked at me and said "I love mommy".  It melted my heart.  She said the same to daddy when he came back.  Her pacing wires that were put in during her heart surgery were pulled since her pacemaker is working well.  Also her chest drainage tub was pulled today. And she is being weened off of oxygen so we could go with out the tank on our walk. We can actually take her out of her room with out 3 people holding onto different things.  She got a couple dollars in a card today so we took her to the gift shop.  Didn't have any energy to shop but did point to the candy.  We will try again tomorrow.  So so thankful for more baby steps forward today.  So thankful for answered prayers.  We give him the honor and glory. Please continue to pray for the lungs to clear totally so we can come home.

The BIG event of the day is opening cards.   Thanks so 

much for blessing us in this way!

Our card wall is almost full.

We have been moved out of ICU!!!

Oh happy day!

Kylie was able to eat on her own a little today. 

Shira and Kate made it back to PA on the train.

Miss you guys already.

Kylie cried for awhile after you left. 

Sunday, December 4th:
It was such a blessing to have some of the kids come and see Kylie this weekend.  Kylie was too sick to show a lot of emotion but it definitely helped her during her tough times.  Kylie adores her older brothers and sisters.  The last couple days have been hard.  We continue to battle a partial collapsed left lung and fluid build up.  We were in ICU, then left ICU, only to return less than 12 hours later.  The drainage tube was removed because it partially came out and was not doing it's job.  So last night they sedated her and inserted another tube.  So we were disappointed that today's x-ray didn't look better.   We are trusting God with these bumps along the road, and know he has a special plan for her.  We are so thankful for encouragement from home, so when the doctor said his guess was another week in the hospital for Kylie, I was relatively strong.  We keep telling Kylie during blood drawls and painful procedures "you got this girl".  Today I'm telling myself "you got this girl".  

Big brother Cody (future nurse)

helps Kylie with her walk...

Cody and Kate wanted a quick visit with Kylie when 

they arrived Friday night.  

Trying a little coloring with my girl.

sister snuggle time...

Friday, Dec. 2nd:
I told my friend back in PA that I'm too tired to blog and I'd like her to.  This is what she told me to blog:
Been freaked out
God is good all the time.
Keep Praying!
Bye!

chest xrays 5am, 10am, and 7pm

not much change if any...

many not fun things today to work on lungs 

Thanks Faith Church...beautiful!

Grandma and Kylie time

bribing Kylie to eat her food with mini marshmallows, a technique 

used by Miss Maureen her speech therapist back in PA

Thursday, December 1st

The day has felt like a couple days.  Not necessarily bad just LONG.  At ten tonight they took her off her sleeping meds and then removed her from the breathing machine.  I could almost cry (which I've done a lot of in the last 24 hours) how brave this little one is.  I could not be prouder of her.  She is comfortable resting while the nurse massages her back. The day started with surgery on...then off...then on again.  Kylie was running a fever over night they were concerned about.  After blood work they felt it was from the fluid in the partial collapsed lung.   And surgery in the long run would be good so they could clean out both lungs.  I noticed yesterday she really started to feel worse as the day continued.  A HUGE blessing was they were able to give her a little sleeping medicine right here in the room that took the anxiety away.  So she gave the tiniest of smiles and lifted her little hand off the bed to say good bye.  Why oh why could I not have some of that medicine? They took her at 11:45 and we didn't get to see her till 6 pm tonight. They ran into a couple issues but over all it was a success.  A lot to be thankful for today.  Our prayer requests for now would be no infection and her lungs would stay clear after they remove the drainage tubes.  I feel like a broken record, but again thanks for praying and doing this journey with us.  

OR nurses heart shaped bandage almost made me cry

Overwhelmed with our card wall

Grandma took this picture back at the Yawkey house.  Mr. Dee is baking with the kids. This kind gentleman comes and bakes with the kids every Thursday night.  I'm again over come with emotion when I think of all the people serving at the Yawkey House.  This home has been our home

for over  a month since last April.  Going back to a motel would have been so different.

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.  :)