Monday, September 30, 2013

Lily Update - I'm out of here!!

I can not believe it has been 3 weeks since I last posted an update. For everyone who does not follow us on facebook I apologize for the lack of communication. 

 The big news is 


and have been for 2 weeks!!!!!!

(leaving CHOP just one week after surgery)

I had trouble with my lap top in the hospital, and couldn't post to the blog.  Since being home, the days have disappeared! The first week home was full of catching up with life, doctors appointments and keeping up with 5 kids schedules.  As I left when school started, we had, had no time to adjust and find our stride.

(follow up cardiology visit)

The second week home I was sick, I think my body was telling me it was time to slow down and take care of myself!

So here we are 3 weeks post open heart surgery and 2 weeks home.  I still can't hardly believe it.  We had expected to be in the hospital for at least 2 weeks if not much longer.  We had been told because of her lungs and the extent of the surgery there was a good chance Lily would have a long recovery.

Well she showed them - this girl is not only home, but started kindergarten today.

Lily only had one really bad day in the hospital, and that was the third day post surgery.  She vomited the entire day. After that her recovery was consistent and fast.

(daddy saying goodbye)

(the rest of the week was just momma and her girl)

Once we were out of the CICU it was all about getting her up and moving, and monitoring her lungs.  She had two small effusions (fluid in the lungs), one in each lung, but each day they got smaller.  They were there when we were discharged, but gone at our followup 4 days later.

(way to cool for this joint)

Lily loved the view from the cardiac floor at CHOP

Everyone was astounded by Lily's fast recovery.  We know without a doubt that God's hands were on our little girl.  That we witnessed a miracle. We can not thank everyone enough for all the prayers for Lily and us over this time.  Every message, like on FB, text, and email meant so much to us. We have felt loved and supported.  We were so blessed to receive gifts of meal vouchers, for our stay at the hospital, they were a huge help. Because our stay was so much shorter than we expected we actually couldn't use them all, so I gifted them to another family, who was facing cardiac surgery on their 3 day old. What a blessing to help someone else out - some of you were a part of that.  

We can not say enough about the care we received at CHOP, the doctors, nurses, therapists, were all wonderful. I especially enjoyed seeing the always happy, friendly and encouraging housekeeper that came into our room every morning.

What now?

We will followup at CHOP in the next few weeks, they will continue to watch her closely and coordinate things with our local cardiologist.  She will gradually be weaned off her pulmonary hypertension medications, but very slowly. She is now on lasix to prevent fluid in her lungs, this will also be weaned off. 

 Long term - we don't know.  

Ever day is a gift, and we decided a long time ago on Lily's journey to live each day God has given us, pursuing life to it's fullest. To not be worried or concerned about tomorrow. We have always known Lily's condition was not repairable and one day she may need a heart transplant, but right now she is well, her heart is functioning and for that we are more grateful than words can express. 

It almost feels surreal to be on the other side of this.  We have waited 3 years to be here!!  We do not take our situation lightly.  Being a mother of a child with a chronic heart defect and being involved in groups with other families of children with severe heart defects, I see many hard situations. Precious children waiting for heart transplants, beautiful children who's families are being told there is nothing else to be done, children who have lost the fight here, but are now rejoicing in their heavenly Fathers arms. I am honored to be able to stand with these families, to be able to hold one another up through good times and hard times.  To cry together and rejoice together. 

What I do think I can say for certain for all the heart moms I know, is that adopting, loving, and caring for these children, is life changing. Our families are better for having them in our lives. Our perspective on life and priorities are forever changed. 

We are thankful to God every day that we were given the privilege to be Lily's parents, and to be her family.

Saturday, September 7, 2013

Surgery Recap and Day One

I know most of you followed our updates on Lily yesterday via facebook, so sorry if this is repetitive, but I want to post here for those who only check our blog and for our own personal journal.
We arrived in Philly on Thursday so Lily could get blood work drawn in preparation for surgery. She did great at the hospital, cooperated, and showed no signs of stress.  She has come so far from the girl that would start crying as soon as we took the hospital exit off of the highway, and not stop until we left!!

We were very excited to get a room at the Ronald Mcdonald House - what a blessing and amazing charity.  Not only can we stay there for very little cost, but they provide a meal every night, you can do laundry, and also meet some amazing families taking care of their sick children.  One ladies baby has been in the hospital for a year - I can not imagine!!
Lily got a good night sleep and woke up ready to go for the big day.  She walked into CHOP, smiling and laughing!!
She did great during the preop, held her arm out for the IV and didn't even cry.
They gave her some "happy meds" before wheeling her to the operating room - she was hilarious, she almost immediately started laughing, she laughed all the way to the elevator, where we had to say goodbye.
This was the hardest part for me, watching them take her away, but only a few moments for tears and it was off to talk to the cardiac surgeon, Dr Spray.  He explained what they were going to do.  We discussed the two procedures, the Glenn and Fontan.  He told us that he would probably only do the Glenn and would wait to do the Fontan, once we new how her lungs were responding.  We discussed the pros and cons, and the plan was that he would decide once he was in the OR and could reevaluate
the pressures in her lungs.
After about an hour our nurse came and told us he had just started, within 20 mins he was back to say the Glenn was done and he had started the Fontan.  Wow this was fast, which made us very happy as the less time she was on bypass and her heart was stopped the better.  Within another 20mins we were told he was done.  They then had to rewarm her body, place some monitoring lines into her heart and lungs, place a chest tube to drain fluid, restart her heart and close up her chest.
After about an hour we met the surgeon, who was able to tell us the news we had been waiting to hear all day, well actually for 3 years!!
Her surgery was done, she was doing great and so far there were no complications!!!
Seeing our girl for the first time was such a relief, it was like letting out a breath you had been holding all morning.
She was already extubated and breathing on her own!!
She was hooked up to many IV pumps and lines
She woke a few times during the day and night, drank some juice and even ate a yogurt, but mostly was sleeping with sedation and pain medications.
I made the very hard decision to go and sleep at the the RMH, last night.  I hated leaving, but the fact that she was looking so good, and was sedated, and with the promise from our nurse to call me for anything, I decided to go.  It is only 3 mins away, and I was so exhausted.  I am very grateful today that I made that decision.  I came back early and she was sound asleep.  She had, had a great night, and I felt so much better, and have been able to be here today when she has needed me.
Chris and I are in shock at how fast things are moving and how well she is doing. 
Today she has had her Fontan line removed, 2 internal lines removed, her foley removed, IV fluids stopped.  She has been taken off all her IV cardiac and sedation drips.  She has drank juice and had 2 yogurts.  She is still on nitrate through the cannula in her nose, which they are slowly weaning, but not rushing because of her pulmonary hypertension.  They are hoping to have it off by morning.
She even had about a 30 min period where she was smiling and almost laughing, you can only imagine how good this made us feel.
These were the big steps forward she made today - amazing
We have also had a few steps backwards.  She started vomiting this afternoon and did 6 times.  She is now refusing to drink and has had no urine out since her foley was removed, so they have restarted some IV fluids.  She is grinding her teeth, something she used to do when we first adopted her.  It is something she did when she was stressed, she hasn't done it in 2 years.  It seems she is doing it when she is in pain, so at least it is helping us tell when she needs meds.
She finally made it out of the bed today for about 10 mins and I got to hold my precious girl, no words!!
Chris and I want to thank you all for the amazing love and support we have felt from everyone.  Your prayers and love carried us through yesterday.
We are so grateful to our heavenly father for taking such good care of our girl, we are in awe that we are on the other side of this day, a day that we were told may never come.  We can not tell you enough how at peace we felt yesterday and how we see His hand in so many of the details. We truly feel we have seen a miracle unfold over the last 3 years.
Here is Lily's gotcha day video - I love to watch it and see how far she has come.

Wednesday, September 4, 2013

Here We Go Again

We leave tomorrow for Philadelphia for Lily's heart surgery, which is scheduled for Friday

Although it was hard when it was postponed 2 weeks ago, you can read about it here  (as well as details on the surgery),we are now very grateful for the extra days we have had together as a family

To enjoy moments like this

and to be blessed to be here for Cole's first day of kindergarten.  When you adopt an older child, you miss SO many of their firsts, grateful I didn't miss this one (thanks Jen for the reminder)

Sometimes things don't happen according to our plan, and in the moment it is hard to see the reasons, but we have seen many reasons over these two weeks. What was such a hard situation has turned out to be such a blessing. Continually reminded to trust in our heavenly Father, who knows and sees way more than I do. 

Please pray for our precious girl, handing her over to the surgeons on Friday will be one of the hardest things we have ever done.  Our peace and comfort comes from knowing, that ultimately she is in God's hands.

We will update regularly on facebook and here, we don't have a time for surgery yet.

Tuesday, September 3, 2013

Back to School 2013

Benjamin is starting high school

Ethan is in 7th grade

Mia is in second grade

Cole is starting Kindergarten

It was a big decision to decide to send Cole to school this year. We were originally not going to, but he is doing so well, was in Kindergarten in China last year, wants to do whatever Mia does and is used to the structure. Also with me leaving with Lily for surgery on Thursday, we felt it may be the best thing. We are honestly not certain, but decided to try, if it is not the right decision we will take him out.  He was very excited this morning though.  Holding my breath today, and just managing to keep my emotions under control, can not wait until 4pm!! Praying for Him today and all my babies.

Lily would have started Kindergarten today, but we are waiting until after her heart surgery!

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.