Pictures

Proud Aunt Annie holding Will

I thought I would share these pictures of my sister, Leigh-Ann, holding Will. We actually took these with her cell phone. Not so bad for a camera phone, huh? I meant to upload these sooner, but I haven't gotten around to it. This was the only time she was able to hold him, and we had forgotten our cameras! Thank goodness for cell phones!

Josh and I are doing as well as expected I guess. We still have these moments when we look at each other, and our eyes start to well up with tears. Some days, I can talk about Will and talk about him, and it puts me in such a good mood. But other times, I can hardly say his name without having a complete meltdown. That's when it seems like my tears never stop... it's like a water faucet, and I can't seem to shut it off.

We spent most of the weekend in Knoxville with my sister and her boyfriend, Brandon. I felt kinda bad that in the 2 years she has been there, I hadn't made a trip up to visit her. But, we've been just a little busy.

Josh did pretty well with his first week back at work. I have been keeping myself busy. I even had a job interview with WebMD last Thursday for a marketing position... it seems right up my alley! I hope to hear from them early this week. I'll let you know what happens!

Letter from Dr. Bove

Josh & I are back in Nashville. We arrived here late last night. We wanted to be back for church this morning. It felt good to get out and go to church this morning with Hunter and Sarah.

When we arrived home last night, we were greeted with a large stack of mail. The first letter I noticed was from the University of Michigan Congenital Heart Center. I wondered what this could be. It was a letter from Dr. Bove, Will's heart surgeon. We never got a chance to speak with him after Will's death, since it occured over the weekend when he was not in. His letter was very comforting to us. Here it is:

Dear Josh and Stephanie:

Please accept my sincerest condolences over the death of your son, Will. As you know, Will had a very serious heart defect further complicated by a number of other abnormalities. When Will returned to our institution in early February, we felt that an attempt to repair his heart using all four chambers was his best chance and, in fact, this seemed to be successful. Most unfortunately, the gravity of the other issues including infection, kidney dysfunction, and neurological issues, eventually took their toll. I hope that you were comfortable knowing that all the best decisions were made for Will and I hope that you can achieve some closure in that knowledge.

Again, please accept my sincerest condolences and those of my entire staff.

Sincerely,

Edward Bove, M.D.


Josh is returning to work tomorrow, while I figure out where to go from here.

As for our future family, Josh and I will probably look into genetics counseling before trying again. The genetics team at Vanderbilt did a series of tests on Will, but they all turned out to be normal. His abnormalities were more than likely a fluke thing that will never happen again. We're not sure at this point when we will try to have children again, but we will know when the time is right. We look forward to the day when we become parents again.

Having Will made me realize that one of the main reasons why I am here on earth is to be a mother. It is the most wonderful gift that I could ever have. I am so thankful that God chose Josh & I to be the parents of Will. We are so blessed to have been given the opportunity to know and love him.

Will's Eulogy

I have really missed doing my daily updates on the blog. I was thinking about it just now when I decided to post an update.

Josh and I are doing ok. We have enjoyed our time together in Heber Springs, Arkansas, where we have taken a much needed break this week. It has been nice, but when we resume our life as we know it next week, it will be tough. All we can do is take it one day at at time, one hour at a time.

The hardest part about my grief for losing Will is when I forget that he is gone. I have caught myself doing this a couple of times, but I am sure it will pass. For example, when our power went out last week, the first thing I thought about was... oh no! Will's ventilator! But then, I remember, he isn't here. Maternal instinct is a very powerful thing. You can't just shut it off.

But, I am still amazed at the affect Will has had upon others. For this I am very thankful.

Anyway, I thought I would share the wonderful eulogy that our pastor, Dale Robble, did for Will's memorial service.




147 Days. It sounds so short. And it leads to the profound mystery of life…and to the most asked question in life…Why?

Over the years I've probably asked myself thousands of times “Why?” Why does God allows things like this to happen — and I still don't know the full answer.

The Bible speaks of "the mystery of iniquity"— In Second Thessalonians 2:7.
and that is what evil and death is: a mystery. But what I do know is this: No matter what happens to us, God still loves us and He still cares for us.

He knows your pain and heartache. He knows the grief we are going through.

Jesus' promise for you is: "Blessed are those who mourn, for they will be comforted" (Matthew 5:4).

We may not always understand why things happen—but God does,

And we can turn to Him for the comfort we need.
Take comfort in the fact that Will is now whole.
His heart is full of love and happiness.

He has no more scars and tubes…
He has seen his last physician…
Because he had an appointment…
With the great physician.

And as we speak, Will is playing safely in heaven

Beyond the pain and sorrows
of this room and this world.

And take comfort also in the fact that some day you can see Will again in heaven.
-------------------
In heaven there is "no more death or mourning or crying or pain, for the old order of things has passed away" (Revelation 21:4).

Thank God for the hope we have in Christ!

In cases such as this, we have a choice to make.

All of us survivors have a choice.

A choice, to either view Little Will from the vantage point of entitlement,
and that is to say, “He was mine. I had a right to him. He was my child,
and therefore his death is tantamount to theft,” or to look on Will from the vantage point of grace and gift … That is that fact that: He was never really ours, really, -- not for a single moment longer than we could claim was our “right.”

We have a choice between which perspectives we would put around his 147 days with us
and as a part of your and our history.
My prayer is, our prayer is, that you chose to regard his life as a gift.

I chose to regard him as a little boy that I never deserved to know. As someone
whose very presence in my existence was utterly beyond anything I could have created.

That does not take the sadness out of it. It does not in any way diminish the grief,
but it keeps me from being angry and resentful at God … or at the doctors
and I would say to you that you, too, have the same choice –

You can either regard the people you have loved and lost…as your rightful possession and therefore their death as a kind of stealing of what rightfully belongs to you;

or … you can stop asking, “Why did he die?”

and step back and ask a greater question, “Why did he live?”

When you ask that question, you’re getting back to that mystery of grace that any of us exists for a single day and the kind of gratitude that you feel in the presence of something
that you know is a gift is something very different from what you feel when something that is rightfully yours has been stolen.

So “Why did Will live?”

You know, God could have just made sure he was never conceived.

But Will had a purpose. “Why did Will live?”

I don’t know both families real well. I don’t know everyone here. But I suspect Will lived so this family would come together, intertwined together in love as every family should be.

I think Will lived for so Josh and Stephanie would experience real love. Will lived so the Burns, Cox, Smith, Perdue families would come together.

I think he lived so we would all turn to God. I think Will lived to bring this large extended, blended family together.

And I pray he lived, so that that this becomes routine, and not just during a time such as this.

Will lived for all of you…Will, Little Man, mission accomplished. Well done!

It only took him 147 days to do amazing things in our lives. 147 days.

Imagine what you could do. Imagine what you could do in honor of Will n the next 365 days.

John 14:2-3 (NLT)
There are many rooms in my Father's home, and I am going to prepare a place for you. If this were not so, I would tell you plainly. When everything is ready, I will come and get you, so that you will always be with me where I am.

Somehow, I think God made sure Will’s place was ready fast, because his heart was small…and so full of fight…and so tired…but it could only take so much.

Psalm 56:8,
"You, God, keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book."

The image there is that God is so moved by our tears, he collects and numbers every single one of them.

Eric Clapton wondered in his Grammy Award winning song that was just played about the loss of his six-year-old son, if there would be tears in heaven. And the answer is, yes.
Your tears are there. God is so aware of every single one of them. He's made note of them.

Just as a parent needs to know that his or her child is safe at school. Josh and Stephanie,
You long to know that Will is safe in death. We long for reassurance that the soul of a child goes immediately to be with God. But dare we believe it. Can we believe it?

According to the Bible we can.

Scripture is surprisingly quiet about this phase of our lives.

When speaking about the period between the death of the body, and the resurrection of the body, the Bible doesn't shout; it whispers. Kind of like you would lean over and whisper into Will’s little ear.

But in that whisper, a strong voice is heard.

This authoritative voice assures us that, at death, Will immediately entered
into the presence of God and enjoys conscious fellowship with the Father
and with those who have gone before.

Jesus said, "Bring the little children unto me."
And He said that for a reason.
Will is complete again

He will be missed. Our God is the God of all comfort and He can bind our broken hearts with His love. God loves you and sees your needs. Let Him meet those needs today
and every day.

Lean on Him today and every day until you meet Will again.

Tuesday, March 7th

Will's obituary ran today in The Commercial Appeal.

The address they have for Saving Little Hearts is incorrect. Send donations to:

Saving Little Hearts
5629 Barineau Lane
Knoxville, TN 37920

Make sure that you indicate that your donation is in memory of William Blake Burns. They are setting up a memorial fund in his name. Be on the lookout in a few weeks on their website where they will have a link about this fund which will have pictures of him and his story. I'll let you know when you will be able to see it. Their website is: www.savinglittlehearts.com

Monday, March 6th

We have made the funeral arrangements for little Will:

The funeral services will be held at :

Harpeth Hills Memory Gardens
9090 Highway 100
Nashville, TN 37221
www.harpethhills.com

The visitation will be held this Friday from 4-7 p.m.
The memorial service will be held this Saturday at 11:30 a.m.

Also be on the lookout this Wednesday in both The Tennessean and The Commercial Appeal for his obituary.

If you would like to send flowers, please contact:

Bouquets & Baskets Florist
7091 Old Harding Rd.
Nashville, TN 37221
615-662-7755

Also, for any of you who are coming in from out of town and need a place to stay, several people have offered their homes. Please call me at 615-498-0441 if you are interested.

Thank you once again for all of your comments and prayers. It means so much to us!

Sunday, March 5th

Today was pretty hard for us, as you can imagine. It has been a rollercoaster of emotions.

The toughest part had to be when we came home this afternoon. We set our bags down in the living room, and the first thing I wanted to do was go into Will's nursery. Tears rolled down my face as I realized he would never see his room that I had so carefully decorated and planned out for him. It is hard to know that he never knew what life was like outside of a hospital.

And as I finish his baby book, I realize all the "firsts" we will miss together... first bottle, first outing, first tooth, first steps, etc. Our hearts are broken, and I wonder if they will ever be unbroken.

Our experience with Will's life and death is something that I would not wish upon my worst enemy, but at the same time, I would not trade this experience for anything in the world.

It was through Will that Josh & I have come to wrestle with the sovereignty of God and ultimately find a deeper walk with God than we could have ever imagined. When you are faced with burying your firstborn infant child, you are shaken to the core of your being. The blessing in that is, it is then that we approach God and His sovereignty from a rare perspective. We come to Him stripped of all pride, broken, desperately aware of our hopelessness apart from Christ. It is in our weakness that we find His strength, hope, comfort, and salvation.

October 10, 2005 - March 5, 2006

Our sweet Will is now in heaven. No more pain, no more surgeries, no more suffering. He is perfect.

Will passed away at 2:05 this morning. He was surrounded by his mommy, daddy, uncle joe and shauna.

He went peacefully. We miss him so much.

Will has touched so many lives in his short little life... more than most of us will in a lifetime.

We are in the process of making plans to fly back to Nashville. We will update as soon as we know the arrangements.

Saturday 2nd Update

We have some bad news.

When I came into Will's room this evening... I had this horrible feeling of dread as I looked at him. I knew. Will's swelling has gotten much worse over the past couple of hours. His drain only got out 5 cc's over the course of this afternoon. There's only so much he can pee out.

I asked to talk to the doctor on call. And he said that they have done everything they can do. He didn't think Will was going to make it through the night, and if he did it would only be a day or two. He said that parents tend to have a good perspective on things.

We have moved Will into a private room. Josh and I will hold him. We may start weaning his ventilator and his blood pressure meds, or we may let nature take its course. He is on a lot of pain and sedation meds, so he won't feel anything but our loving arms.

We will let you know what happens. Thank you to everyone for your prayers.

Saturday, March 4th

Will is hanging in there.

They haven't been able to wean anything. His ventilator settings are the same. He is still getting the same dosages of dopamine and epi (blood pressure meds). His chest x-ray from this morning showed no changes... it will take time for his lungs to improve and heal.

Will's chest tubes have been removed since they haven't been draining anything. The drain they installed yesterday seems to be draining pretty well. He is still very swollen... it looks so painful! To address this, they started him on a lasix IV drip and increased his dosage of diurel.

So far, his blood and spinal fluid cultures haven't grown anything. I pray that it stays this way.

As always, I will keep you posted!

Friday 2nd Update

Will came back from his procedure a little while ago. He did ok... he is a little bit sicker, which is expected. They had to start him on epi and give him fluid to help him maintain his blood pressure. Since Will got some more fluid he is more swollen. They have also put Will on a fentanyl drip for pain. The ventilators don't work as well in the OR, and because of that Will came on high settings... rate of 50 and oxygen at 60%. His blood gasses have been getting better so hopefully later tonight that can begin weaning. The docs expect him to be sicker over the next 24 hours, but hopefully things will improve.

The drain that they installed is pretty much like a chest tube, but the catheder is smaller and kind of coils up underneath the incision. It drains out just like a regular chest tube.

This morning the neurosurgery team decided to tap Will's reservoir on his head so that they could get some cultures of his spinal fluid. So far it hasn't grown any bacteria, but the white blood cell count is up. When I asked how high the count was, the doc said that it was 1,600, but the count is different from blood. Apparently, you are not supposed to have any white blood cells in your spinal fluid. So, it may be that Will does have an infection in his spinal fluid. This is very troubling to us, and it may be as long as 72 hours (Monday morning) before they can say for sure whether or not he has an infection.

I'll continue to keep everyone posted on Will's condition.

Friday, March 3rd

We got the results back from all of the tests that the neurosurgeons ordered last night, and it appears that Will's VP shunt remains unchanged... a very good thing. So, they do not want to "externalize" the shunt. But, they do need to do something about getting all of the fluid out of his chest.

This morning was really rough for me. When I walked into Will's room my heart sank. He was so swollen... more swollen than he has ever been. The poor guy can't even open his eyes and his lips look like they got collagen injections. When I asked what happened, his nurse told me that his incision managed to dry up a little and it closed. Normally, this would be a good thing, but lately his fluid has been draining from this site, and now it had no place to go. It broke my heart... I cannot stand to see him like this.

At first the docs wanted to got to the OR and insert a PD cath in his belly so it could drain some fluid. The neurosurgeons had a problem with this because they felt that it would increase the risk of infection of the VP shunt because the cath would be next to it.

So, Dr. Bove has come up with a better plan. He is taking Will to the OR this afternoon (sometime between 3-4) and he is going to insert a drain on the upper right side of his chest. It will be similar to a chest tube, but it will be much more effective because it is going to be inserted so that it can go straight to the source of the leakage.

I am pleased with this decision. One of the great things about it is that it won't require a 2nd trip to the OR to have it removed like the PD cath would have.

I will update in a couple of hours after Will is back from surgery.

Thursday 3rd Update

Just thought we'd share these pictures that we took of Will tonight. Such a tough little guy!

Will had his tests this evening, but it will be sometime tomorrow before we hear the results.

Thursday 2nd Update

Here's the latest:

The docs have discovered that Will's belly and his chest are "communicating" through a hole that was accidently made during his heart surgery... something that is fairly common. "Communicating" means that fluid in his belly can get into his chest and vice versa.

One of the biggest concerns with this "communication" is that his VP shunt drains into his belly. This is serious because some of the infected fluid from his chest could get into his belly and into his VP shunt and finally infecting his brain.

There has been talk of taking out the bottom part of Will's VP shunt (in his belly) and putting it into a sterile bottle that will catch the excess fluid from his brain. This of course has risks and requires a trip to the OR. The neurosurgery team does not want the shunt to be tampered with unless there is a malfunction or infection in the VP shunt. So, they will be doing a series of tests on Will this evening to determine the patency of the VP shunt. This will include a CT scan and an ultrasound.

I haven't talked with Dr. Bove yet, but it appears that he and Dr. Hirsch (cardiac surgical fellow) want to take Will to the OR tomorrow to install a dialysis catheder (like the one he had for his Norwood Procedure). This catheder will not be for dialysis, but to help remove the fluid in his belly so it doesn't travel into his chest.

I will keep you posted as things develop.

Thursday, March 2nd

Will is not doing very well. He needs your prayers.

Well, we just had a sit down with an attending cardiologist and a cardiac surgical fellow. Here's what's going on:

1. Will's chest is full of fluid that hasn't been able to drain. I'm not too clear on what's going on with this fluid, but from what I understand his blood is having problems clotting the way it should and the fluid is starting to collect in pockets within his chest cavity. It is starting to create scar tissue in his chest wall. This has caused Will to have some problems with his lungs because they cannot ventilate properly.

2. Will is still having problems maintaining his blood pressure. He is now on a high dose of dopamine. If things keep going this way, he will be back on epinephrine.

3. All of this fluid has created problems with his incision trying to heal. As I mentioned before, fluid is constantly leaking from the top part of his incision, which is near his trach. In fact, the incision opened back up last night. The surgical fellow had to put a couple more stitches to close it back up. Now it appears that an intervention of some sort is needed to close his skin completely. We have 3 options (all of which have their risks and benefits):

a) Insert a sponge and a vaccum device: this is normally used for superficial wounds, and there are no studies on how this would do in a chest cavity in which the sternum is open. It is risky because it cause injury to the heart with it being so close to the incision... it could rupture a vessel. This can also take several weeks for it to work. It can also be highly beneficial if it works. It could help get rid of all of this extra fluid in Will's chest.

b) Cover the wound with a plastic sheild: this is what they normally do when a baby's chest is left open after surgery. This would essentially put us in a "stall mode," and it really has no benefit as far as we can see. The only risk is infection.

c) Have a skin graft taken from another part of Will's body: this procedure would involve plastic surgeons. Finding skin & tissue on Will's body will be very difficult, given that he has been hospitalized for almost 5 months and several parts of his body are swollen with stiff skin and tissues. This is also no small undertaking. Will would have to go to the OR for a lengthy procedure. And since the graft is so close to the trach site, it could create problems with his skin and tissue being able to support his trach. It looks like at this point, this will be Will's best option. The plastics team has already done a consult and taken pictures of Will. We should hear back from the attending soon.

Since Will is getting sick again, this has prompted a discussion with Will's doctors on whether or not Josh & I want "heroic measures" taken in the event he goes into cardiac arrest. This is something no parent should have to decide. At this point, we have decided that we do not want them to perform CPR or shock his heart. They will give him medicines and give him more support through his ventilator if needed. We may change our minds, but for now we feel that Will has been through enough. With all of his other problems, CPR would most likely add more insult to injury. We pray that we will never have to do this. We pray that whatever God wills to be done, will be done.

Wednesday, March 1st

Will is doing ok.

Yesterday a cardiac surgical fellow took out Will's remaining chest tube and put in another one because his tube was leaky around the site and it didn't efficiently remove the excess fluid in his chest cavity. Unfortunately, when he did this procedure, he made a contusion on one of Will's lungs causing him to have a lot of bloody secretions come out of his trach. This should heal in time.

Unfortunately, Will's new chest tube kinked up, and it too was only removing a small portion of the fluid in his chest. Since the fluid had no place to go, it came out of the top part of Will's chest incision. In just 5 minutes after doing a dressing change, it was completely saturated. Fluid was leaking out and soaking his trach ties and bedding. Poor little guy!

So, early this afternoon another surgical fellow fixed the chest tube and put in another chest tube on his other side to help with removing the fluid. So far, it looks like the new tubes are working like they should.

They also decided this afternoon to address his IV access issue. Yesterday, the docs ordered a vascular ultrasound of his inferior vena cava and femoral veins to see if the clots discovered at Vandy were still there. If the docs were to insert a line in his groin with the clots still there, it could be catastrophic. But thankfully, they didn't see the clots at the location of where a line would be put in (but it is possible that the clots are higher up), so this afternoon they are putting in a femoral line.

Since Will had all of this excess fluid in his chest, it has been very difficult for his lungs to ventilate properly. His lungs are wet and he has quite a bit of effusion (fluid around the outside of the lungs). So, his ventilator rate is still at 30, and his oxygen had to be turned up to 60%. Hopefully, this will be turned down shortly once the new chest tubes are able to remove the fluid so he can breathe better.