Thursday, August 22, 2013

Lily Update

Today I feel a little strange, I can't really describe how I am feeling.  I should be sitting in a hospital waiting room, praying, thinking, pacing, longing to see my precious girl and hold her in my arms again, but instead I am home, sitting on my deck, watching my kids play on the trampoline, while my precious girl sleeps safely and happily in her own bed.

You see Lily was supposed to have major heart surgery yesterday.  As most of you know we have been waiting for this day for three years, since we bough her home from China, a very sick little two year old. If you have followed Lily's journey you know that it has been a roller coaster ride.

Due to the pulmonary hypertension in her lungs she has been unable to have cardiac surgery. She has been treated medically for 3 years, with the hope of her lungs improving.  We were initially told she would never get surgery and she would live as long as her heart could survive.  A year later after a second opinion and treatment, we saw a miraculous improvement in her lungs and were told surgery was possible.  Then 3 days before the scheduled surgery, the doctors bough up concerns and decided she was still to risky and we should wait.  In January she was supposed to receive another cardiac catherization to check her hypertension, but due to there being no cardiac ICU beds it was cancelled.  She finally received the test in March, where we were given once again miraculous news, her lungs were even better - this time surgery was definitely a go.

January 2012 we started the process to adopt again, at the time we had been told Lily was getting surgery that summer, the adoption would be at least a year later, so we were good.  Well with the delay in surgery by a year, it quickly became obvious that these two events were at risk of colliding.  As it looked like Cole's adoption would happen in August or September, we started pushing to get
Lily's surgery in May or June 2013, unfortunately because our cardiac cath had been rescheduled, our surgeon was already booked, through August, so we took the first available date August 22nd, today!!

Well as you all know theses two life altering events happened almost back to back by 11 days.  The logistics of planning for both, packing, child care, school starting, bonding to a new child (that's just the highlights), then never mind the emotional drain has been intense.  With the surgery I was planning to be gone for at least 2-4 weeks, possibly longer.

I can't explain how the last 11 days have been.  Of coarse they have been filled with joy as we integrate Cole into our family, but also full of pressures, errands, jet lag, and emotions as we anticipated surgery.

You see, although we know it is miraculous that we are at this place of surgical intervention for Lily, are grateful  to God, and trust our heavenly father with our precious girl.  As her parents we were dreading handing her over to the surgeon. We were ready, but we were not reading, if that makes any sense.

Needless to say yesterday was a day full of emotions.  We were tied, the logistics of packing for 7 people, and making sure things were straight for back to school, meant a late night.  We needed to leave by 8am so the night was short.  Saying goodbye to our other children, especially Cole was emotional, but I have to say he did great.  He went off quite happily with my mom.  We arrived for our 1pm preop appointment early (that's a first), so had some lunch.  Lily was doing great, not overly stressed about being in the hospital.  We started our preop visit, vitals, EKG, chest xray.  Then one of the surgeons came in to explain the surgery.  The exciting news was that when they had discussed Lily's case that week, everyone was on board with the decision to do surgery, unlike last year.  The surgeon decided they would do what the call "the full Monte".  Although final decisions would be made in the operating room, if things went to plan, they would do a Bilateral Glenn, Fontan and fenestration, as well as other possible procedures all at once, instead of doing two or 3 separate surgeries.

Then it was time for the dreaded risk talk, and with this kind of major surgery there are of coarse many.  After a few tears as the realization of what you already know hits even harder you have to sign consent.

This was then followed by the news that there was a scheduling problem and they weren't sure yet if the surgery was going to happen the next day.  We were told to hold on and as soon as they new they would let us know.  About an hour later it was definite, it was cancelled.  Our surgeon, the top cardiac thoracic surgeon at CHOP is under high demand and there was an emergency that required his skills.  He felt that because Lily's surgery was so big, he could not try and do both in one day.  Of coarse we appreciate that, you want the man operating on your child heart to be at his best, and we understand that Lily is stable and this other patient isn't.  It is what it is, but it was hard to hear and emotional.  All that had gone into getting us there yesterday, the emotions, were hard to contain.  Yes I shed a few tears, our nurse practitioner even shed some tears with me (love her).  Our cardiologist came to speak with us, and was obviously very upset by the situation, but there was nothing to be done, so we packed up got in the car and drove the 5 hours home (in rush hour traffic).  Picked up our kids from my mom and went to bed.

We were told they would could all us to reschedule and hopefully surgery would be 2-3 weeks from now.

We are filled with mixed emotions.  Upset because we were ready, prepared, and had worked so hard to prepare for today. We do not want to go through the emotional anticipation of the surgery again, we want to be on the other side, with her doing great!!  And then there is this sense of relief after hearing all the bad things that can happen you just want to take her and run in the opposite direction.  You now have a temporary out.

So here is where we are at today.  We are choosing to trust God as we have with Lily since day one.  We are taking this extra time before the kids go back to school as a gift. Time to have some fun as a family with Cole.  I have already done the school shopping, done all the laundry, cleaned my house.  This logistically may work better as the kids will be in school.  We have time to prepare more, and I can be here when school  starts. We are going to continue to move forward and walk through the doors as He opens them.  We are choosing to dwell on the positives of the situation.

The biggest of which is this

and being here for this

and for the fun I have had hanging out with Ethan today, and spending time with Benjamin while driving him to band camp.

We want to thank you all for all your prayers, love and support over the last few days, it means so much.  We will continue to update and let everyone know as soon as we have a new surgery date.

Wednesday, August 14, 2013

Home Sweet Home

We have been home a few days and are finally getting back on US time schedule
Cole did great on the plane ride home

He loved the personal movie screen, ate the food, and only slept the last 2 hours
We were exhausted when we arrived in Newark, NJ as it was 2am for us.  Cole became a US citizen as we went through immigration
and he celebrated by eating - NOODLES
We had a 5 hour wait in NJ then a quick plane ride to Virginia, where we were welcomed home by some amazing friends - what a great surprise
Then it was home to bed - our precious son, in his bed, in his home - no words!!
The boys and Lily, and our extended family were still away on vacation.  Cole got to meet them the next day. He was shy at first, but it didn't take long for him to be attached to his big brothers. 

He had some fun getting to know his Papa

Amazing to finally be all together as a family
We are treasuring these days together, but are also very busy getting ready to leave next week for Lily's surgery.  Cole is taking it all amazingly well.  He has been school supply shopping, visits to the park, eaten Italian, Mexican and pizza (we have been very spoilt, by our church family that have provided meals all week). He cries at night when it is time for bed, and sometimes in the morning if he doesn't see us. It doesn't last long, and this seems to be his hardest time. At night, I think he just doesn't want to go to bed, in the morning I think he is scared we are not there.  It is hard to know exactly as we can't ask him. We are so proud of him - he has had his whole world turned upside down, and we are so blessed by how loving and accepting he is of us.  He is calling us by name, and learning his brothers, and sisters name.  He is already repeating English words.
We feel so blessed and honored to be his parents, and to be his family.

Wednesday, August 7, 2013

China Trip to Cole (5)

Today we had our appointment at the US consulate to file all Cole's paper work so that he can become a US citizen. We weren't able to take our camera's or phones in, for security, so no pictures, but Cole was so excited to wear his buttoned shirt - this kid loves clothes :)

We spent the rest of the day, exploring the neighborhood behind our hotel, eating at our favorite noodle shop for lunch, swimming, and eating at our favorite western restaurant for dinner.
Tomorrow we pack up and leave  Cole's province, Guangdong, and drive to Hong Kong.  Our flight home is 10am Friday. 
Our time here has been very special, it has been a priceless to have this time to bond with Cole
We are ready to get home, hug our other children, and be together as a family.  We can not wait for them to meet their brother.
Thank you all for prayers, love, comments, and support, you are all apart of Coles story

Tuesday, August 6, 2013

China Trip to Cole (4)

One of the main reasons we decided at the last minute to bring Mia to China with us is this
and this
and this
and this
even though it was a stretch financially, we felt it was important for Cole's transition
we prayed that they would bond
our prayers were answered
even though it is not always this sweet, they have their moments, he has already formed an attachment to his sister
we are praying this will help him, when we have to leave for Lily's surgery
Just like that, they are brother and sister, gotta love adoption!!
 Can't wait for him to meet Lily and his big brothers - he is going to LOVE them!!

Saturday, August 3, 2013

China Trip to Cole (3)

Today was the medical exam!!
Cole had a rough time with this.  Because he is naturally very shy around new people, he had a hard time with each part of the exam.
He refused to stand up tall for his height, and refused to look and name the pictures for his vision test.
Oh well, he passed anyway.
They did draw blood for a TB test, we will get the results next week.  They don't let you go in the room, so we could just hear him crying - not fun.
Once again bubbles came to the rescue
The afternoon was spent with some pool time for the kids, while I went to the "paperwork party" with the other families.  This is where we complete all the paper work for our US consulate appointment next Wednesday.  This is the last official thing we do, before leaving Thursday for Hong Kong, and Friday for HOME!!
This paper work insures Cole becomes a US citizen when he goes through immigration in New Jersey.
I think the stress of the morning, wore him out, this is the first time he has fallen asleep before bed time.

Friday, August 2, 2013

China Trip to Cole (2)

Sorry for the lack of blog posts, but we continue to have on and off issues with internet access.
Since Cole has been with us we have spent most days going to some sort of official appointment, exploring the parks and area around our hotel and trying the local food,

(boat ride on the lake in the park)
but most of all we have been getting to know the newest member of our family.
The more relaxed he is getting with us the more his personality is coming out. 
What we know so far - he is very ticklish and has a great laugh and smile.
We have found that he is very considerate and helpful - wants to open doors, do things for himself, and share an umbrella with his sister.
This actually was a big step.  The day before we had been caught out at the park in the rain, we had finally purchased an umbrella the day before after getting rained on several times!!  When we got the umbrella out Cole wanted to hold it and refused to let Mia stand under it.  When we went to the bus and had to put the umbrella down, we had to pry it out of his hands.  He was upset with us, and refused to look at us. This lasted for some time, even once we were back in the hotel.  After a while he was distracted with other things and his happy personality was back.  Today we bought him his own umbrella, and as soon as it started raining he opened it up and immediately went over to Mia and put it over her head :)!! 
We can tell he is testing us, and pushing boundaries.  It is hard at times, to know when to just let him have his way and when to stand our ground.  It is especially hard when you can't explain things.  He knows what no is and doesn't like to hear it, but what 5 years old does.  He wants everything Mia has so we are having to balance that too, Mia is doing great at sharing and trying to show him how to do things.  Everything is SO new for him, his world has been turned upside down.  We know he probably thinks all the time that this is all going to end, he does not have any way to know that we are here forever.
He has been wearing Mia's purple sunglasses because we couldn't find any for him, until yesterday.  He was so proud to have his own glasses, anything he gets he holds on to.  I know this comes from being in an orphanage where everything you own you share with everyone else, including your clothes.  Oh that reminds me, something else we know, is he loves his clothes, he picks them out every morning.
He has a great appetite and will try almost anything.  The first day he wanted nothing to do with the bath and was scared of the pool.  Well 3 days later he is loving the bath and can't get enough of the pool.  We no longer have to hold him in the pool.
He also has attempted several rides at the park, even though he was scared at first, he insisted on going on
what we know is he is BRAVE.  Brave because he will do things even though he is scared. 
Brave because he is willing to allow us to show him love, and to start to trust us.
There are 2 amazing parks near our hotel, with lakes, boats, fish, rides, music, people dancing, statues, exercise equipment, table tennis, and much more.  They are a great place to spend time and get to know a very busy and active five year old boy.
(someone else who is brave)
(exercise equipment)
Although there is a part of us that is very ready to go home.  We have Cole, and we miss Benjamin, Ethan, and Lily like crazy.  We want to be together as a family, but we know this time is precious bonding time with Cole.  If we were home, we would be busy with life.  So we are focusing on him and enjoying every moment.
We appreciate all your comments, it makes us feel close to you all.  We also appreciate your continued prayers for Coles adjustment.  We know as we travel home, he will have to face a lot more changes, especially with Lily's up coming surgery.
Tomorrow we have Coles medical exam.  We will also be joined by 4 other families with our adoption agency that have adopted from other provinces.
Ok so right now Cole is trying to play on the iPad, but can't work it out, but refuses help - he is STUBBORN :)!!