Putting one foot in front of the other...

Endurance. Tenacity. Perseverance. Steadfastness. Persistence. These are all words that you think of when you think of running a race or finishing a big project at work. They are all words that we hope would be used to describe us but in all honesty, deep down in the pit of our stomachs, we don't want to have to use. These are also all words that have been thrust into our lives in the last two weeks...although, I would use a much different term to describe the state that Trey and I find ourselves in...treading water. Existing. Our typical answer to daily inquiries into our existence is that we are hanging in there. We have even started to occasionally catch ourselves smiling. We know that God will heal these wounds, but like all deep cuts it will take some serious time. We have also started doing crazy (borderline insane) things. For example, tomorrow I am running an 8K. Perhaps I should rephrase that and say that I am WALKING an 8K. Really I am going to try to run...TRY!!! A lot of people are reading this and thinking "Good for you...going and doing something healthy". If you knew me at all, you would know that me going to this run tomorrow is almost suicidal. Seriously...I am not a runner. I have not trained. And it will be an absolute miracle of God if I even cross the finish line!!! Really it's not that bad, but I'm pretty sure I won't be able to run the whole thing.

That being said, we are doing things to try to return to life as we know it. I am going back to work in the next week or two on a part-time basis at Grand Strand. Trey is getting back into full swing of a busy youth schedule. And, we're even planning on going to the Clemson-Carolina game (it should be easy to get tickets if Carolina keeps losing!!!). We are frequently having dinner and lunch with friends and planning for the holidays. Our main goal is to be as busy as possible so that by the end of the day, we collapse. We have incredible families and absolutely amazing friends that have been diligent in checking on us and keeping us going throughout this pit. Many of you are in one of those groups and let me clearly say that there is no way...NO WAY...we would have survived this without you. We know that God can heal anything and we know that He sustains us through this time, but we also know that he is using many of you to do just that. So please know that we love you and that we owe you all more than we will ever be able to repay in kindness.

Wesleigh Anne's eulogy

First, I cannot begin to thank everyone for the amazing outpouring of love and support for us over the last week. Every day is still a struggle, but would be much, much more difficult without the support and prayers of so many! We will never be able to thank you all enough!

I've been told multiple times that I should post the eulogy that Trey and I wrote for Wesleigh Anne's funeral on Thursday. We appreciate everyone who made the drive to be with us and must tell those of you who didn't that you missed a beautiful tribute to a little princess and to the amazing God who loves her and us. Here is the eulogy...


Wesleigh Anne Greene was born on May 8, 2009 in Sumter, SC. It was the first
time we knew that Wesleigh Anne would refuse to follow our plan for her life. We
learned then, as we would be reminded many times after, that God had His own timing
and plan for our little girl. In stages, we learned His plan for our princess...first that she
had a congenital heart defect and later the Downs Syndrome. We learned that she
would have to be strong and fight, which she did for as long as she could. Every time
the doctors had a plan for our next step with Wesleigh Anne, we learned what it meant
to be in the minority of people who donʼt follow plans. We also learned that she would
bring great joy, which she continues to do today.

At home, we quickly learned that Wesleigh Anne enjoyed extremes. She always
wanted to bounce a little harder or swing a little higher. She loved to learn new things,
experience new foods and see new settings. She lit up when we read her books and
when she could see the pictures. She loved to watch her mobile and make faces at her
monkey. She never wanted to be alone and loved to be the center of attention, which
we were happy to oblige. She was always happiest when in our arms, especially when
there were several people watching her adorable expressions.

Wesleigh Anneʼs home away from home became the pediatric cardiology units of
MUSC. The nurses and physicians there became our second family and always went
out of their way to care for Wesleigh Anne and even more so for her parents. They
always took the time to make sure she looked perfect and to talk to us or answer just
one more question. For their amazing love and care we will always be thankful.

For the last several months, many of you have prayed for us and with us. Prayed
for a miracle. Do not be misled, this is Wesleigh Anneʼs miracle. She is strong now and
healthy, in the arms of a loving Father. There are no more surgeries ahead of her and
no more pain. We will anxiously await the day when we will see her and hold her again.
In her short time, she accomplished more than most of us will in a lifetime. She has
brought families together, strengthened our faith and made many who knew her and
knew of her appreciate every second that they have. She has made parents hug their
children a little longer each night and we are thankful for so many lessons that we all
learned from knowing and loving this amazing little girl.

We appreciate the incredible amount of love and support we have received
during this greatest of challenges in our lives. We are very fortunate to have so many to
love and care for us. We know the next several weeks and months will be difficult, but
we know that our God is faithful to carry us and to send loving family and friends to help
us along the way. Thank you for walking this journey with us. We love you all.

Arrangements

Here is the schedule of funeral arrangements for Wesleigh Anne.

Wednesday...Visitation at Goldfinch Funeral Home (Conway) from 5-7pm

Thursday...Funeral at North Conway Baptist Church 10:30 am
Private burial in Sumter

Thank you all for your tremendous support during this difficult time. We cannot express how loved we feel.

Saying Goodbye to Wesleigh Anne

Please let me begin by saying that we have been humbled and overwhelmed by the incredible outpouring of love after Wesleigh Anne's death and during her illness. I will attempt to go over the last 24 hours in hopes that people will understand our mindset and what happened.

Sunday morning at 6:30am we received a phone call that Wesleigh Anne coded again, requiring chest compressions and medication to bring her back. At this point, she was on quite a bit of medication to keep her going. She was tired. We then had a conversation with the attending, Dr Graham, about ECMO. ECMO would be very dangerous for Wesleigh Anne leading to surgery because she would have to be on blood thinners for ECMO and then she would bleed really easily going into surgery. Also, if Dr Bradley had felt good about fixing her valve, he would have done it two months ago when he was already in her chest. That left us with the options of a mechanical valve or a transplant. A mechanical valve would leave Wesleigh Anne on blood thinners for life. That means while learning to walk, ride a bike, rollerskate, etc. A transplant would require nothing short of a miracle for Wesleigh Anne to make it through. After much, much, long, hard conversation and much, much, long, hard prayer we decided that we would not send Wesleigh Anne to surgery again based on the pain that surgery causes versus the benefit that we felt she would gain. Therefore, we felt that our daughter was being tortured by being kept on paralytics and the breathing machine while coding every several hours. We also knew that Wesleigh Anne was tired and didn't have much fight left. We then made the terrible decision to remove Wesleigh Anne's life support, which we planned to do this morning (Monday). Well, God knew that we could not handle the responsibility of removing Wesleigh Anne's life support. And we know that we have a faithful, loving God who never gives us more than we can handle. So on Sunday evening we planned to spend the night in Wesleigh Anne's room, holding her and telling her how much we love her. While we were spending time with her, Wesleigh Anne's vital signs started trending downward. It became apparent that she was not going to make it through the night. We continued to hold her and love her until she passed peacefully in our arms, around 1:45 am. We stayed with her until around 3:30 am and then said our final goodbyes. We know that Wesleigh Anne is in a much, much better place and that she's healthy and whole now, breathing easily.

I would be lying to say that Trey and I are completely peaceful with this situation. We are absolutely broken. We miss our little angel more than we can possibly express and we know that this hasn't even fully hit us yet. We have fantastic support from our amazing families and our incredible church family and North Conway. We also have wonderful, wonderful friends who have been with us every step of the way. Thank you all for your tremendous support and for your continued prayers going forward.

As for arrangements, we plan for Wesleigh Anne's funeral to be on Thursday at North Conway Baptist Church. I will post the time when it is set. We will then go to Sumter for a family graveside service. As we know more, I will post it.

Another rough morning

We again woke up to a call this morning at 6:30 am to say that the doctors in the unit were "coding" our daughter. This means that they were doing chest compressions and giving her medication to keep her going. We rushed to the hospital in time for her to be on the upswing and getting better. She is now "stable" in the ICU, meaning she is still paralyzed and sedated with medications and is on several medications to keep her blood pressure and heart rate steady. We are still waiting for Dr Bradley to get back in town and assemble a plan for Wesleigh Anne's third heart surgery. From talking to the cardiologists, Wesleigh Anne has not grown enough to fix her actual tricuspid valve. That leaves putting in a mechanical valve (far from ideal for an infant due to having to be on blood thinners for the rest of your life and the fact that the valve would not grow with her and would have to be continually replaced). The other option might possibly be transplant. Heart transplants in children do very well most of the time. However, in infants, it involves a long wait. It also involves us hoping for someone else's child to die...not a good thought for us. Ultimately we know that Dr. Bradley's plan doesn't matter. God's plan matters. Wesleigh Anne is appointed a time to die...whether that is a week from now, hours from now, or years from now. We know that Wesleigh Anne cannot continue on this route for much longer. We also know that we cannot continue on this route for much longer. But, we will wait for Dr Bradley and the doctors in the PCICU to have an idea or plan. And then we will have to decide...and that will probably be the hardest decision of our lives. Please, please pray for us and our sweet little girl.