One month ago today, our family received the most precious humanely gift that can ever be given.
On Friday the 13th at 7:10pm I had just finished giving a lecture at the university when I noticed that I had six missed calls and voice messages on my cell phone from numbers that I did not recognize. The first thing that caught my eye was a voice message that Jacques had forwarded to me via text. About one sentence into the message, the name of Lily's heart transplant cardiologist caught my eye, and my heart instantly skipped a beat. Was this THE call? Sure enough it was...they had a heart for Lily!
I barely remember my drive home, but I will never forget when I opened the door to the house, and saw Lily standing in the school room playing with Soleil. She immediately ran over to me and asked, "Is Papa joking? Am I really going to get my new heart?"
I quickly packed a couple bags to bring to the hospital. At one point Jacques walked into our bedroom and I collapsed into his chest hysterically crying. Fear gripped me from head to toe. I could hear every conversation that we had over the past six months with the doctors replaying in my mind about how risky a heart transplant would be for Lily...not to mention the fact that she was turned down from being listed from two of the top heart transplant hospitals for children. Jacques held me, and reminded me that after two years of pain and suffering, long hospital stay after long hospital stay, this new heart would bring one of two things for Lily. Either this new heart would give Lily a new lease on life, and she could FINALLY play and run like she has always dreamed of doing. Or, Lily would not survive the transplant or the recovery, and she would spend eternity in heaven with Jesus. Both options were a win/win situation for our little empress. Lily has taught me that we must always choose hope no matter what. So in that moment HOPE is what I chose.
Our dear friend Jan came to the rescue to stay with the other three girls, and before too long, Jacques, Lily, and I were off to Washington DC to get Lily Grace's new hero heart. We arrived to the hospital around 10pm, and Lily was directly admitted to the Cardiac Intensive Care Unit where she took care of getting herself all hooked up to the heart monitor and pulse oximeter machines.
Lily had an EKG, echocardiogram, an IV placed followed by LOTS of blood work, urine collection, and MANY hospital friends stop in to say "hello"! Lily stayed up until 2am playing playdoh, singing "Let It Go", and thoroughly enjoying her pre-transplant party. At promptly 5:30am, Lily was wheeled down to the operating room. She was sedated, intubated, and put on bypass through her groin. Jacques and I went outside to watch for the helicopter that would bring Lily's heart to the hospital. Little did we know that Lily's new heart would not arrive until 12pm!
It's here! Lily Grace's Heart is here!
Twelve hours after Lily's heart transplant surgery began, she was wheeled back to her room in the Cardiac Intensive Care Unit by her team of smiling doctors. An hour after that, Jacques and I were allowed to see Lily Grace, and be introduced to her new hero heart.
There are no words for that moment.
Lily's hero heart story would not be complete if I didn't share this:
Four days before we received the call that there was a new heart for Lily, we had "THE" heart transplant talk. I knew this day was coming,
and I could tell by the way that Lily's questions were escalating in
intensity that I was not going to be able to dodge that bullet any longer. Since
Lily is only 4 years old, I was hopeful that she would be content in
knowing that she would have another surgery where she would get a new
heart...end of story. But on that day, Lily was adamant that she wanted to know exactly how
she would get this new heart, when we would get the phone call,
and where this new heart would come from. So in the minivan on our way
to get Lily's blood drawn that morning I shared with her through many
tears how she would come to have a new heart. Lily's first question was,
"Hmmmm...will they make sure my new heart doesn't have any germs on it?
I need to be very careful of germs ya know." I assured Lily that her
new heart will be very clean. The next thing Lily wanted to know was why
I was crying. I explained to Lily that my heart was sad thinking about
how much the family will miss the little child who will die. Lily
immediately suggested that we get Thai chicken noodle soup for lunch
since that always helps her feel better when she is sad. At the Thai restaurant, Lily asked if
she could pray for our meal, and she began by praying for the family who
will be very sad when their child dies. And then she asked God to help
her mommy to not be sad. This child astounds me. An old soul, wise
beyond her 4 years.
Lily praying for her heart donor's family
For those of you that know how organ donation works, the fact that Lily and I had this conversation four days before the call for Lily's new heart should give you chills. "At some point, a potential donor is admitted to a hospital because of
illness or accident. Most donors are victims of severe head trauma, a
brain aneurysm or stroke. Healthcare professionals work hard and long,
doing everything possible to save the patient's life while maintaining
the patient on mechanical devices. When the medical team has exhausted all possible lifesaving efforts and
the patient is not responding, a physician will perform a series of
tests, usually on multiple occasions, to determine if brain death has
occurred. This is usually done by a neurosurgeon or neurologist in
compliance with accepted medical practice and state law. Patients who
are brain dead have no brain activity and cannot breathe on their own.
Brain death is not coma. Brain death is death" (http://organdonor.gov/about/organdonationprocess.html). This process takes several days, so it is highly likely that Lily was praying for her organ donor's family very close to the time of their death. I am so thankful that God prepared Lily (and me) for what was about to occur. As we drove to the hospital on the night of Friday the 13th, a peace washed over me that Lily knew, to the best of her ability, what was about to occur.
A bowl of Thai Noodle Soup bigger than her head!
Lily's surgeon told us that he believes she is the most complicated heart transplant done in the United States. He said that he saw a lot of complicated heart transplants during his time at Boston Children's Hospital, but nothing compared to Lily's case. Shortly after her Fontan procedure two years ago, Lily's right pulmonary artery clotted off and became discontinuous from her heart. During the transplant, her new heart was attached to her left lung. Lily's heart donor was not a lung donor due to trauma, so the team was able to take the right pulmonary artery with the hope of attaching Lily's new heart to her right lung someday. For now, Lily will be a single lung heart transplant recipient. Lily's recovery has not been easy, but through it all, she has continued to fight for her life. Over the course of the past month, Lily has amazed the medical professionals with how well she is doing!
Our response: "Only God!"
Our family is overwhelmed with how perfect this new heart is for our precious Lily Grace, and how sovereign God was in bringing her this specific heart. There will need to be a whole blog post devoted to that story someday when we are ready to share! Lily Grace's life is miraculous. We have witnessed miracle after miracle throughout her life that have taken our breath away. From lost to found, orphan to loved...God sets the lonely in families.
princesses, baby dolls, nail polish, lip gloss...
did I mention hair bows?
I honestly never envisioned myself with a son.
Until, this little man absolutely captured my heart...
I have a fun way that we will reveal his name soon,
but for now we will call him "Noah"
since that is the name his foster home has given him.
similar to our Lily Grace, hundreds of families turned down his file
because of the scary terminal diagnosis that came attached with each
cardiologist's review. Even though "Noah's" file was designated to a
very large adoption agency, none of their families chose to proceed with
his adoption. His file disappeared, until an advocate friend of mine
named Brooke found him on another agency's designated list. Ironically,
it was on Brooke's advocacy website that I first fell in love with Lily
Grace. This sweet lady is very dear to my heart!
"Noah's" file had been found, Jacques and I had a prayerful decision to
make. At the time, Lily had been turned down by three medical centers
to be listed for a heart transplant. I was currently living in the
Cardiac Intensive Care Unit with Lily, and her future was extremely
uncertain. Our plate was already full and often times overflowing with
the responsibility of just trying to keep Lily Grace alive. We could
have easily decided that bringing another critically ill child into our
home was crazy, and I think that most of you would have supported us and
agreed. But three years ago, when Jacques and I started down the
journey of adoption, we decided that we wanted to live reckless for
Jesus. We chose to put our comfort, security, and financial stability
on the line and risk everything to give God the opportunity to show up.
And let me tell you friends, not only did He show up, He has blessed us
abundantly in ways that we never dreamed possible. Jacques and I are
at a place right now where we have to rely on God for everything. Even
our day to day living is impossible without Him. In adopting these
children, we have taken on WAY more than we can handle alone.
But His grace is sufficient,
and His power is made perfect in our weakness!
little dude turned two years old this past February. He has a
combination of heart defects that are very familiar to Jacques and I.
"Noah" has a single ventricle heart just like Lily Grace, and a complete
AV canal, which is the same heart defect our Addy Hope had before she
passed away. Unlike Lily, "Noah" has not had any heart surgeries in
China. As a matter of fact, China has deemed him inoperable. It's hard
to tell from the darling, smiling photos but "Noah" fights for his life
with each breath he takes. The medical reports we have on him state
that his oxygen saturation is in the 50's-60's resting, and he is very
short of breath most of the time. Lily's cardiology team at the
National Children's Medical Center has reviewed his medical file, and
they are very anxious for us to bring him home so he can have a heart
catheterization. There are six factors that could in fact exclude
"Noah" from being a candidate for the Glenn Procedure open heart
surgery, but we will not know for sure until after his heart
catheterization. Due to the progressive nature of what the cardiology
team believes is severe ventricular outflow obstruction in the setting
of single ventricle physiology, we are desperate to get our boy home
Yes sweet boy, that's YOUR Papa and Mommy!
Please follow along, as our family's love story
takes us to China and back again!
But he said to me, “My grace is sufficient for you,
for my power is made
perfect in weakness.”
Therefore I will boast all the more gladly of my
so that the power of Christ may rest upon me.
sake of Christ, then, I am content with weaknesses,
One year ago today,
our sweet Addy Hope silently entered this world.
Although she never experienced life outside of my womb,
her little 7lb 15oz self has forever changed our lives.
We never had the privilege of hearing her cry,
smelling her newborn fragrance,
or snuggling her gently into the crook of our necks.
Our past year did not include lullabies in the middle of the night,
experiencing first smiles, or seeing the miracle of baby's first steps.
Instead, this past year would contain more grief and saddness
than our human hearts have ever endured.
A little over a year and a half ago, I remember vividly the flash of peace that surged across my soul when I thought I had God all figured out. The moment that I felt I had put together the puzzle pieces of my life, and finally understood where I had been and where my journey was going. In my shallow understanding of our omnipotent God I thought I discovered His purpose for my life. I concluded that God brought Mackenzie into our lives to give us confidence in caring for a severely developmentally delayed child. It was Lily who was strategically placed in our home to help us navigate through the terrifying world of congenital heart disease. The precious baby that was growing inside of my belly would be a perfect combination of the two children we were already confidently raising. None of that could have been farther from the truth.
What our sweet daughter Addy Hope has taught me is that it is not my place to figure out God's plan for my life. I do not need to find my security in looking for signs or trying to piece together the complex puzzle of this life. Jesus told us to "take up your cross and follow me". It's easy to misinterpret this text and presume that the "cross" Jesus is referring to is some burden in our lives. What Jesus intended was that we must literally be willing to die to ourselves in order to follow Him. The call to death of self is then beautifully followed by the call to life in Christ - “For whoever wants to save his life will lose it, but whoever loses his life for me will find it” (Mathew 16:25-26). I've learned that it is easy to follow Jesus when life is smooth and going well. My true commitment to Him is revealed during times of trial. This past year has allowed me to test drive my commitment to Jesus at a whole new level. And I am here to encourage you that God's grace abounds in deepest water.
The eucharisteo -thanksgivng- always proceeds the miracle!
This is a decision that Jacques and I did not take lightly, especially after being turned down by three transplant centers already. We have been warned that Lily's case is very complex, and nothing will be straightforward or easy to predict. If Lily does receives a heart, she will be transplanted to her single left lung. Lily's clotting disorder and multiple blood clots in her body increase the likelihood that her recovery may be very difficult or that she may not even survive. It is so hard to not get caught up in statistics or the numerous "what ifs" as we embark upon this new journey.
Jacques and I are also painfully aware of the fact that in order for Lily to get a new heart, another child must die. Just ten months ago, we sat together in a hospital room holding our deceased daughter, Addy Hope, in our arms. It takes but only a simple thought for those horrible emotions to flood back into my mind. Our prayers are already focused on this precious child's brave parents who will make the decision to turn a tragedy into something beautiful...life.
Lily has been so very fragile over this past year and a half. Since October her Protein Losing Enteropathy, and the steroids used to treat it, have been killing her. Medically speaking, there is nothing left for them to do to help Lily. If she continues down the path she is currently on, the PLE will eventually cause her lungs and pleural cavity to fill with fluid and she will drown to death. When the Heart Transplant Team came to ask for our permission last Wednesday to bring Lily before the selection committee again, we said yes.
I am worn thin. I am weary. Watching
Lily suffer, endlessly, has taken its toll on me. I have been pulled in
more directions lately emotionally and physically than I can even
count. And certainly more than I can handle...alone. At the end of a
much needed chat with my sister Lori, she reminded me that the only
thing to do during a time like this is to bury myself in the word. To
carve out time, every single day, between just the Lord and I. To
breathe in his promises and meditate on them.
3:20-21 are perhaps two of my absolute favorite verses in the entire
Bible. "Now to Him who is able to do immeasurably more than all we ask
or imagine, according to His power that is at work within us, to Him be
glory in the church and in Christ Jesus throughout all generations, for
ever and ever!" But the gems buried directly before those verses, that I
tend to skim through to get to my "favorites", were salve to my soul
How grateful I am to know this love that surpasses knowledge!
"For this reason I kneel before the Father,
from whom every family in heaven and on earth derives its name
I pray that out of His glorious riches
He may strengthen you with power through His spirit in your inner being,
so that Christ may dwell in your hearts through faith.
And I pray that you,
being rooted and established in love, may have power
together with all the Lord's holy people,
to grasp how wide and long and high and deep
is the love of Christ,
and to know this love that surpasses knowledge -
that you may be filled to the measure
of all the fullness of God."
Catching some rays yesterday afternoon
had a very rough day today. She woke up feeling yucky, and it turns
out that her sodium levels are very low again. I feel like I am
experiencing the worst case of deja vu, and I am quite certain that the Prednisone is making Lily hyponatremic just like the Budesonide
steroid did. Lily was given a couple saline boluses, and they held two
doses of her diuretics. I feel like the past week of working so hard
to get the fluid off Lily has all been for not. But I agree with the
team that it is important to keep Lily safe from seizures, even if it
means that she will be puffy again.
frustrated as I am. As defeated as I feel, Lily continues to amaze
me. She always reminds me that no matter what, I must always choose
HOPE. This morning Lily gently wiped the tears that streamed down my
face as I placed her in the wagon. On our ride around the Heart and
Kidney Unit, Lily sang, "God is faithful, God is faithful!"
Yes Lily Grace, God is faithful...always.
is a very important meeting scheduled tomorrow, Monday, here at the
hospital to discuss our Lily Grace. Jacques and I have prayed that God
will make our decisions clear and our path for Lily known. Please join
us in praying for that miracle.