HOME SWEET HOME!
We arrived home last night right before bed.  Going through NY city at 5 pm on a Friday is not recommended!  But thankful for a safe trip.  After lots of hugs, kisses, and catching up with kids we crawled into bed.  The silence in my bedroom scared me for a second and then I sighed happily.
Today Kylie was very mellow and tired but was so happy to be home.  The last 17 days have been hard and exhausting, but we felt the presence of the Lord in a beautiful way.  And it has given us the courage and strength to face the next surgery for phase two.  Again thanks to each of you who have supported us in so many ways!  We are blessed to have you journey with us!

Big Bro and little sis...

Jesse and Shira kisses...

Visit and lunch from Bella and Hailey.

ANSWERED PRAYERS:
- Kylie's chest x-ray looked great this morning.
- Today she started eating more.
- She is walking unassisted.
- If chest x-ray looks good in the morning...we are headed home!

Spent a lot of time in the play room doing crafts.

Kylie's wall of cards...thanks so much to you all!

Thanks Faith Church

It was a good day, but we are starting to go stir crazy so time to go home! 

Pictures are worth a thousand words...
(ok so I'm adding a few words)

The clown show we took Kylie to yesterday to try and get her through a rough day.

Kate and I had a date to the movies, after we did the Kylie day shift.

We love our therapy musicians!

View from our hospital room.  Lee and Kate are waving to Kylie from the corner of the parking garage roof.  We wondered what they were up to, when they left with big grins.  Kylie loved it!

Beautiful day for a walk in the Hospital garden.

Loving our time going through cards from Quarryville Elementary and Preschool.  Even when Kylie was too sick to watch tv she wanted me to open her mail and read it to her.  What a blessing from so many family and friends!

Thanks to Brenda for the diet turkey hill ice tea!  Very special treat for the day!

lots of echos and chest xrays

We love Liz our child life specialist.

As soon as dad came today Kylie was all smiles.  She was sad to see Grandma and Kate leave for PA.

sister time

PRAISES:

- We had the best day yet.  Kylie walked, giggled, ate, and talked.

- Kind nurses and hospital staff.

- New IV put in last night, was done amazingly fast with little pain to Kylie.

- Lungs sounded better tonight.

- Even in my sleep deprived state I have had the energy I've needed to love on Kylie.

- Yackey House has been a total blessing.

- Everyone at home lifting us up in prayer, running Kate (Shira), feeding my dogs (Cody), filling in 

for me at work (Laura), watching Kate (Joy, Julie, Marv  & Bethany) and so much more.

PRAYER REQUEST:

- check xray tomorrow will  show little fluid and the partial collapsed lung will be normal

- Kylie's appetite will return.

- we can come HOME...today is two weeks of being away

* A shout out to my mom at home feeding my family on numerous occasions.  Love you mom!

It was a good day!  We are so thankful Kylie was moved out of ICU.  On a rare occasion we get a weak smile, but she is starting to respond more than a stare.  She is also taking a couple bites each meal and keeping it down. Even with not a lot of sleep last night I am feeling so good.  I told mom tonight seeing how well she is doing has given me the courage to think about the next surgery.  Lee and I were so discouraged she needed to go through this again in approx. 6 months when the doctor told us last week. Now I feel like God is saying yes you can do this, and she is going to be ok.  I also know this peace comes from my heavenly Father. He is answering our prayers and yours.

Grandma ask her what she wanted to eat, No more needs to be said.  :)

Kate and I enjoyed some time away from the hospital today.

Swan Boat Ride in Boston Common which is the oldest public park in the country.

China town of course.

Kylie saying good bye to a friend who we met in testing,

and then had rooms next to each other in ICU.

Kylie seemed to turn a corner after the hospital 

musicians came in and played to her.

Sunday, April 24th:
This big news is Grandma is back and she brought Kate with her.  Kylie managed to get a smile out and then snuggled in next to her big sis.  It was the sweetest thing.  Last night was a rough night for Kylie.  She continued to throw up all night. Lee said she stirred about every 10 minutes.  Today was much better and her stomach settled.  About the only time she smiled was when she saw Kate and Grandma arrive.  The nurse said we should be moved out of ICU tomorrow am.  This will be better as now we can only have 2 in the room.  Today we were hiding Kate behind pillows.  :)  The nurse was kind and let us go.  So thankful for God's goodness and her continued healing.  Also for getting Lee home safe to PA with little to no sleep last night.

Small Group from our church.  You brought tears to my eyes!

This was about the best smile we got today.

Hiding Kate from the nurse who could kick her out.  

Kylie snuggled up to Kate right away.  Best medicine ever!

Holding onto Grandma's hand for support...too sweet.

Saturday April 23rd:
Kylie had a good night till about 4 am.  At that point she was done with numerous tubes and on her own was trying to take things out.  I woke to see her bed surrounded with nurses and hospital staff working with her.  She pulled one out and I don't even want to know what liquid was all her her and her teddy bear.  One nurse said she is really strong!  (teddy bear got a bath today in the washing machine)  This happened again about 5am and they decided to remove the respirator.  YEAH!!!  After this Kylie was much happier.  She has not been able to keep anything down today.  So our day was rubbing her back, arms, and legs in between sleeping and heaving.   So that would be the prayer request this evening that she can start to keep liquid down.  Dr. Del Nido was in again to check her and continues to be happy with her progress. We are so grateful!  She has numerous IV's but one central iv in the jugular vein at her neck that really bothers her and when she drops a couple meds that will come out and she can move out of ICU.  We are hoping this happens tomorrow.  To get her attention off her pain we opened cards tonight.  There was no smiles but when I ask if she wanted me to stop she said no.  I could tell she was enjoying it as I read each card to her and showed her pictures.  So again Thanks so much prayers, love, and taking time to send her cards!  Blessings to each of you!

Apple juice for Kylie.

Kylie's first smile of the day, not too many to follow.

Kylie was moved to a chair for a bit today.

This is for Grandma, she loves when Kylie cross's her legs. :)

Friday, April 22nd:
Lee had a good night with Kylie, and I had to smile when I came in and saw Kylie's hair was braided.  No it was not Lee but a kind nurse.  Dr Del Nido stopped in this morning and said he is very pleased and she is on track.  He also ordered her drainage tubes to be removed. This is a painful procedure so a blessing since she is still heavily sedated.  The nurses were fast and good.  Ken the respirator guy (and sure he has a better title than that, but I have no idea what) called her a teen as she was not cooperating with getting her off the ventilator.  They worked quite a bit with levels today and it will most likely come out tomorrow. I've discovered one negative of Boston.  They have no Turkey Hills.  I could really use a diet ice tea.  I mentioned this to my sister in law who lives off the stuff, and she said Boston is no longer on her bucket list.  :)  I seriously doubt it was ever on her list! Ok back to Kylie she would wake on and off today for 10-30 seconds at at time.  She'd have a glazed look and usually get upset and if she started thrashing they would up the meds. They say this stage is not the fun one for the parents. I would agree.  Hopefully tomorrow she will be awake more, less pain, and respirator out which the nurses say make the patient much happier.  I can't wait for a Kylie smile!

Prayer requests:

- fluid does not build up since the drainage tubes are out

- can be removed from the respirator sooner than later

- we all survive this stage till she is no longer sedated

- the nurses have wisdom with balancing her pain meds

THANKS!

;

It took lots of hands to quickly and efficiently 

remove Kylie's drainage tubes.  

The sweet nurse braided and put Kylie's 

hair in pig tails.  Not quite as good as 

Aunt Mary can do, but very close!

In between Kylie's little awake times I worked on 

entering recipes into my ipad.  Something that has

been on my list for a LONG time.

Any guess which is Kylie's mailbox at the Yawkey house?

Thursday, April 21st

Kylie had a good night and day.  They needed to give her a bit of blood over night and today an ekg when her levels were a bit off.  Forgive me if there are medical people reading this and things don't make sense. Pretty much everything goes right over my head!  She continues to be heavily sedated and does not move or open her eyes.  This is what they want so her body can heal.  She has become more swollen through out the day, but they assured me this is normal and it will get worse before better.  I'm over whelmed with the pile of cards that is growing.  It will be a bit till we can open them, but I can already picture the smiles.  Thanks again for your kindness.  Grandma left this morning.  They are very strict with only one or two people in the room at a time. Plus there really is nothing to do at this point.  There was a doctor in today and we talked about our surgeon and he said "there are not many in the world that can do what he does".  This is not the first we have heard this.  I do feel like he is giving our little girl a second chance.  Today we Thank the Lord for bringing Kylie this far!

I'm emotional when I get email notifications that I've been tagged on a photo,

and there are people who have never met Kylie from all over praying for our girl.

This heart pillow arrived this morning.  They use it when the child

wakes for them to hold to their chest when ever the nurses need to move them.

This picture was taken this morning, when she looked so good.  Grandma thinks she looks like Kate in this picture.  Mitch thinks she looks like him.  And Shira and I agreed to make Mitch feel good.

Grandma takes one more look at Kylie before heading back to PA.

Wednesday, April 20th
Today was the BIG day we have been anticipating and dreading all at the same time.  It started at
7 am with check in, nurses, anesthesiologists, and so many others who I have no idea who they were.  The team attending her all day and including tonight is remarkable.  It's been an emotional day, but we are so thankful the surgeon came out around 2:30 pm and announced it went very well.  He was pleased with what he accomplished and what he saw.  We are praising the Lord for this report!  We were able to see her around 4 pm.  There was more wires and tubes coming from her than I could count.  Lee and I were prepared but it's still difficult.  The surgeon said they will keep her sedated for about 4 days depending how she does.  The sedation is to keep her body totally relaxed so the lungs and heart can adjust to the new blood flow. Her ICU room is larger than our bedroom.  A minute ago there was 7 people attending to her as a couple numbers were off.  They reassured us this is normal for heart patients.  The next 48 hours are so important, so thanks for your continued prayers. I can't thank you all enough for all the support we have received over the last couple weeks.  Meals, cards for Kylie, care packages for Lee and I, homes for Kate to be at, open invitation for Cody to eat dinner, and I'm sure I'm forgetting others.  The love and support brings tears to my eyes.  Thanks!

bear support for Kylie

making her ICU room personal

Lee's perch over looking Kylie.

Beading with Kylie to keep her mind 

off of what was coming...

it wasn't working so daddy stepped in.

Tuesday, April 19th
I'm not a night person so here it is after 10 pm and I feel like I can't put more than 5 words together.  So bare with me as I write a few jumbled sentences. We had a fun two day of traipsing around Boston.  It was a real treat to be here during the marathon.  To see amputee's, blind people, a dwarf, and people of all shapes and sizes working so hard was inspiring.  The energy and excitement was contagious! Today was a full day at the hospital.  We finally met our surgeon, Dr Del Nido, and instantly like him. He was kind, explained things on our level, and was patient with us.  Our surgery is set for 8:30 am tomorrow with an arrival time of 7 am.  The surgeon will not be doing the full repair tomorrow, but splitting it into 2 surgeries, both of equal intensity.  The second one will be done 3-12 months from now depending on how her heart does.  Kylie has been only using half of her heart since her surgery in China at 3.  So to do all the repairs and expect the half that hasn't worked for 3 years to do the full job is asking a lot.  Dr. Del Nito said if she was younger he would do the full procedure but he has seen too many at her age really struggle, and some they have had to reverse, and do it again.  This was hard for us but what he said made sense and ultimately we want the best for Kylie.  I talked to two families today at our Boston home as Kylie calls it, and one has been her 6 month and the other 9 months.  I can't even imagine.  It felt like God was showing me if they can do it, you can too, stop whining.  Yes I've had a few silent pity parties for myself today. Tonight we had a time of prayer with a dad from the southern part of Africa.  It was a sweet time.  His son V is also having surgery tomorrow.  Another little China baby girl is having surgery too.  I do not know her name, and they do not speak English.  Please also pray for these families.  These next days will be extremely hard for us.  In six months we have fallen in love with Kylie.  The thought of her having go through this is overwhelming.  Thanks for your prayers!

Sunday was a good day...Daddy arrived

walk in the park...

PJ's & bear from Grandma's friend

Boston marathon...truly inspiring

Kylie's new friend

day at the hospital for pre op

opening letters with Kylie tonight...all smiles