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.


Jennifer P said...

Oh Rachel. What a journey and still "post-partum" with Cole. Thanks for sharing your ability to roll with the punches. This happens more than we would want it to. Like your video, so worth it.

likeschocolate said...

From one heart mom to another, I am so sorry you have to go through this. I will pray for your sweet Lily. I will pray that the surgeon will have the guidence to know what to do and do a good jon.

Jo's Corner said...

Wow, Rachel, as I read your words I just felt the Holy Spirit speaking to my heart, "It was not The Time". His Time. I need to share that with you! I know that the situation has/had many disappointing factors, but I was just reminded of how His Timing is Always, Always Perfect. I Believe that He will show you something huge during Rachel's actual surgery time. I can't wait to hear what that is.
Love to You and your family. Oh, and Congratulations on your sweet son, Cole! ~ Jo

rosedel said...

I've been away and praying every day. I wonder what God thought when he heard me praying for Lily to recover well. :) As you have said after every evaluation and doctor's visit, you will enjoy Lily and love her bunches and leave the rest to God.