Thursday, October 30, 2008

4 weeks gone bye... ...

The dull emptiness is still and always will be all so real... ... only time has distanced us from the sharp pain our loss four weeks ago.

Have pictures to post of our time at the State Fair with Pierce and family but the time will come to post those later. Also, we've decided to bring Pierce home from pre-school till January or so to get to know him again. It's been hard taking him to Easter Seals each day and walk past Lucas's old class room etc...; and Pierce has had some tantrums lately, not sure if they are related to Lucas being gone or just typical 3 year old stuff; but he does seem to us to be more upset at letting go of things he really loves, like his cars and bike??

Still working on Lucas's shadow boxes... ... So, we are moving on though trying to still focus on Lucas with the blog for now; we carry him in our hearts and see him in the stars shining down on us. The sky has always seemed extra blue and bright since our Lucas ("bringer of light") is in the heavens now... ...

If I knew it would be the last time
That I'd see you fall asleep,
I would tuck you in more tightly
and pray the Lord, your soul to keep.

If I knew it would be the last time
that I see you walk out the door,
I would give you a hug and kiss
and call you back for one more.

If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would video tape each action and word,
so I could play them back day after day.
If I knew it would be the last time,
I could spare an extra minute
to stop and say "I love you,"
instead of assuming you would KNOW I do.

If I knew it would be the last time
I would be there to share your day,
Well I'm sure you'll have so many more,
so I can let just this one slip away.

For surely there's always tomorrow
to make up for an oversight,
and we always get a second chance
to make everything just right.

There will always be another day
to say "I love you,"
And certainly there's another chance
to say our "Anything I can do?"

But just in case I might be wrong,
and today is all I get,
I'd like to say how much I love you
and I hope we never forget.

Tomorrow is not promised to anyone,
young or old alike,
And today may be the last chance
you get to hold your loved one tight.

So if you're waiting for tomorrow,
why not do it today?
For if tomorrow never comes,
you'll surely regret the day,

That you didn't take that extra time
for a smile, a hug, or a kiss
and you were too busy to grant someone,
what turned out to be their one last wish.

So hold your loved ones close today,
and whisper in their ear,
Tell them how much you love them
and that you'll always hold them dear

Take time to say "I'm sorry,"
"Please forgive me," "Thank you," or "It's okay."
And if tomorrow never comes,
you'll have no regrets about today.

Saturday, October 25, 2008

Extra Special Thank You's!!

We recieved the most wonderful gift yesterday from all of our CHARGE family across the world. Words can't express enough thanks to all our friends who contributed and produced such a fantastic scrap book of Lucas including special thoughts and words of encouragement. We can't figure out how you guys did it; ten moms from literally across the US and the UK each putting their own piece together combining to make such a precious tapestry of love for us.

Thank You so much seems like such small words for such a BIG expression of love, all we can say is we know we are loved, we love in return and will always be connected to you all. Thanks for being there for us and we are always here for you... ...

This is LOVE:

Also, thanks to one of my closest friends, Anna, for creating this piece of art for Lucas's room:

Thanks to the PICU unit for the hands and feet impressions:

Thanks to our family for the Lucas's room make over:

We are currently creating a shadow box which will contain some of Lucas's favorite things and will post pictures when it is complete... ...

Thursday, October 16, 2008

Cards & Letters / Thoughts & Prayers

The card above is one of hundreds our family has received concerning Lucas. This one is from his friends made over the coarse of his stay in the PICU at ACH. Words can't express our thanks to the staff there for making his stay and last days so happy for us and him.

Thank you all so much for your expressions of love, condolences, and respect for us and Lucas; like him they will never be forgotten.

Two weeks have passed and the pain is dull and constant as we try to breathe and move these days; we are thankful for our Family, Friends, Faith, Hope, Love, and all the great memories of our Blue Eyes... ...

cute picture I had forgot about and just found... ...

sleeping beauties... ..

Wednesday, October 15, 2008

Excellent article on Primary Pulmonary Hypertension in Children

Also after some further searching on the internet I found where children and infants with Pulmonary Hypertension and congenital heart disease had a mortality rate of 73% if having RSV (respiratory syncytial virus). With Lucas having CHARGE and PH and getting the adenovirus (very similar to RSV) looks like things (obviously) went down from there... ...

Wednesday, October 8, 2008

Shine On Blue Eyes

You drifted into my life you blue eyed boy
My heart skipped a beat, then I was quiet.
So strong in your spirit with such a joy
You proved to us all that life is golden.
Unique and supple so soft to touch
An honor to hold, you and kiss you and such.
The greatest teacher I know laying in my arms
When the winds took a change and carried you home.
With all I am, is honored and blessed
To have held you at birth and held you at rest.
You are a piece of heaven God knew we would need.
To continue this life and sow new seed.
I was there through sickness, health, and death
You were the one who created in me the breath.
In my heart you live on, I see you in everything
To feel the wind on my face I know one day I will sing.
It’s ok to know that God called you home,
To help prepare a place for us, on the streets of Gold.
Around and around and around we go,
You are walking, talking, and singing with a glow.
This life has been touched by the strength you portrayed.
A picture, a tapestry, weaving away…..Shine On Blue Eyes!

Monday, October 6, 2008

What Happened / What Now... ...

Just wanted to post some detail on what happened to our precious "blue eyes" Lucas on the off chance that we would forget any details later or that someone could be helped by what happened to him. Before I forget to mention, wasn't Lucas service perfect; we thought it couldn't have been better. Thanks to all who came and supported us with overwelming love and kindness.

Lucas's Pulmonary Hypertension got out of control very very quickly the last month and in the cath lab last Thursday the cardiologist said it was the highest pressure he had recorded in a PH case (and he does 200 per year for the last 25 years). The advanced medicine they were trying, Prostacyclin, actually raised his PH slightly and he was already maxed out on sildenafil and inhaled Nitric Oxide. His lungs had permanent irreversible damage and after he came out of the cath lab we were informed he only had days at best. No one thought it would be that day, but Lucas has always done things his own way. So he waited till we knew, and took away any difficult decision we would have had to make and went home after we laid with him a while. Since he didn't respond to the advanced medicine he would there was nothing else that could have been done even if they would have found this much sooner. He had some great days in the PICU and only wanted to play the whole time, even to the end, he played so much that he even started sleeping less, like he knew. He touched so many people while he was here and we'll miss him so very and painfully much!!

We (Blake, MK, & Pierce) have slipped away to breath and grieve and get to know each other again for several days. We are in northern Arkansas in a cabin near the buffalo national river. Things are very peaceful and healing here... ... (special thanks to Fred and Tammy for allowing us to stay and rest here in their home away from home) We feel like we haven't seen each other's faces in so long, especially Pierce's. He is doing well though. We got here on Sunday and plan to stay for a bit. Yesterday we walked by the river and threw rocks in with Pierce, last night we took in a drive-in movie together(yes, they still have a few of those, this one was the kenda in Marshall, AR)and it was a moment to remember, stars were out like never before and we saw a shooting star during the movie. Today we went shopping a bit in Branson, MO and when we returned the rain on the front porch was so peaceful and soothing. Here is a bit of our get away so far... .... we also hope to go canoeing and find other relaxing things to do in this place hidden from time and almost the rest of the outside world (we do have internet from the Gilbert Cafe across the street though), we'll see what we can get into. The hard part is an empty seat in the car and at the dinner table and missing our baby boy so much.

Saturday, October 4, 2008

Watch Lucas's service live; thanks, love Blake & MK

click here: to watch and chat live...

Thanks for coming; we just thought the blog world would like to particpate since he meet so many of you here, please sign in your attendance under the comment section.

Thursday, October 2, 2008

He is finally home

Lucas grew his angel wings today and went home. He is truly a miracle and we were all fortunate to know him and have him near for the brief time he was here with us. He is whole and healed now with no more tears and no more pain. He showed us what it was to live and laugh through it all. Though this hurts so unbearably bad now and how we wish he would have grown and stayed much longer; our son is resting in such sweet peace now and patty caking with the angels forever... ...

Lucas Fillmore Weindorf
born to us 5-10-07
went home 10-02-08
Viewing Friday, 10-3-08, 6pm -8pm at Griffen Leggett 10200 Hwy 5, Alexander, AR, 72002
Service Saturday, 10-4-08, 11:30 am Brand New Church 2203 N Reynolds Rd, Bryant, AR 72019 with Graveside service to follow at Forest Hills Cemetery 10200 Hwy 5, Alexander, AR, 72002
The funeral service will also be web cast here on the blog so if you can't make it check back tomorrow at 11:30 am

Details of the day... ... Thursday, October 2nd, 2008

We really had a great summer despite discovering Lucas had Primary Pulmonary Hypertension back in May; also we really thought we were "out of the woods" with Lucas's health issues before finding this out. Looking back I suppose we should have read a bit more into the concerned look that Dr. Eble (Lucas's cardiologist) had that day.

Anyway you can read all about Lucas's last stand starting here starting with the month of September and here from anothers view. Needless to say but Lucas's Pulmonary Hypertension got out of control very very quickly the last month.

Here is the story of the fateful day that was Thursday, October 2nd, 2008... ...

To begin I should go back to Wednesday afternoon.

As was "usual" routine for our days in the PICU, MK spent most of the day and afternoon with Lucas and left that evening to get Pierce from her mom. I (blake here) had a major meeting for work that I spent the afternoon in till around 5 pm. Went home to eat with MK and Pierce and then went to the PICU to be with Lucas for a bit. At this time no one ever expected Lucas to be gone the next day and we surely had much much faith and sincere hopes that the cardiac cath procedure would give us an answer and a medical solution for Lucas's PH, or that God would heal him completely. When I got to the PICU Wednesday night the nurse had him in his walker (picu style without wheels) and had the restraints they had to use only one night a few weeks before tethered to his crib with his toys hanging down for him to play with. We played a good bit and then I got him back in his crib and played a bit more before he fell asleep for the night around 9ish. I prayed over him and watched him sleep peacefully. I knew that MK was waiting up for me but I just didn't want to leave him for some reason; so I sat on the bed and watched him sleep and headed home around 11pm. I took this picture before I left and it was the last one before the pictures of him intubated and on the vent for his procedure the next day.
On the way home I was thinking how long it had been since I got MK flowers so I stopped off and bought some roses for her. It was a cool night and I figured I would surprise her the next morning with them (I thought it would be a good way to start our big day because of Lucas's procedure). So I left them in water in the car and I also took three out and laid them on the ground from the door to the car. We got up Thursday morning got Pierce ready and made him stay back behind so MK would go out first and find the roses; I must say also that she followed a similar trail of roses before I proposed. Anyway she couldn't really speak but was pleasantly surprised by the flowers and when we got in the car Keith Urban was cued up singing one of "our" songs. (I also must admit that that was because I was listening to his cd the night before and not planned, but she doesn't know that yet still... ...shhh) .

So on the way to take Pierce to school and just before we get there Lucas's very best nurse of all time calls (Amber, who was his nurse for his last four days) and ask if we are close. We already knew Lucas would be intubated that morning early and we had planned on him pulling through and knew that we didn't want to be there while they intubated him. So we told here we were on our way but to go ahead; this is the only thing we have regretted through it all.

We get there and Lucas is peacefully sedated and Amber said he did really well and that of course he got some patty cakes in with all the nurses that always came by to say good morning to him and that she played with him and rocked him before they sedated him to intubate. We wait for the cardiac cath team to arrive and they do and explain everything they play on doing in the lab to check him over, run diagnostics, look at his lungs, etc... ... We walk with him down to the lab and say our good byes and kisses and go back to the waiting room (around a bit after 10 am) to wait the planned four hour procedure time with family and friends who are already there to support us when we get there.

As we are waiting they call a few times and assure us that Lucas is doing good and comfortable (why do they keep telling us how comfortable he is just finish up already). And finally they come to get MK and I from the private waiting room near the PICU waiting room with family and friends and take us across the hall to another room. In it the "team" all start to literally pile in, the head Dr. Green, the PICU attending; Dr. Eble, Lucas's clinic cardiologist; Dr. Fontenot, the cardiologist that did the cath procedure; Leslie, Lucas's PICU APN; Patti, the conselor, and finally his greatest nurse ever Amber. We can feel the seriousness and you can cut the tension in the room with a shoe lace.

Dr. Green begins by telling us that things are not good at all and then defers to Dr. Fontenot to explain. He tells us that Lucas PH pressured measured in the cath lab are the highest pressures he has recorded in a PH case (and he does 200 per year for the last 25 years). The advanced medicine they were trying, Prostacyclin, actually raised his PH slightly and he was already maxed out on sildenafil and inhaled Nitric Oxide. After looking at Lucas's lungs he has permanent irreversible damage from the high pressures. Additionally, his regular blood pressure was around 80 over 30 (left side) and his pressures on the right side of his heart were around 115 which was pushing more blue blood through his ASD and mixing with his blue blood which was causing the rest of his body to get blood with not much oxygen in it, even though his lungs we maxed out and not transferring much oxygen into the blue blood because they have turned so muscular. The die they injected at the end of the catheter into his lungs should have flooded the x-ray with a path through the lungs and it only had a straight line indicating that the outer branches of his lungs were pretty much destroyed. We were informed he only had days at best. I asked weather or not he could be extubated to be allowed to wake up for some hours remaining and they said that was a decision that could be looked at but that there was a possibility that he might not survive an extubation. At this time they said that Lucas was in his PICU room and stable (whatever stable on a vent and with on a few days left means). MK and I were utterly crushed at this moment. I asked Amber if she would take MK to see Lucas and I asked Dr. Eble to go back across the hall with me to talk to the rest of our family.

Dr. Eble and I explained things in a way that everyone could understand what had happened. MK's mom asked surely there was something they could do. Dr. Eble responded with a statement I will never forget, he said, "Lucas's has always been in God's hands, he is in God's hands right now. If God chooses to heal Lucas, then I want to be a part of that miracle. But if God chooses to bring Lucas home then I can't stop Him." At that point I left Dr. Eble to explain more and went to be with MK and Lucas.

Lucas was at peace but his blood pressure was very low and he desated when I got there. Dr. Green bagged him some and they pushed a lot (seemed like a ton) of IV fluids in and his levels improved; [FYI: something we didn't try that helped earlier in the week was the calcium channel blockers that he seemed to really respond to well] but he was still being weaned of his Prostacyclin which seemed to kind of back fire on us. I asked Amber how low his sats were in the cath lab and she said 3!, I said as in the number 1, 2, 3? She said yes... ... They decided to move Lucas out of the crib into a bed so that we could get in bed with him. While they did this I held Lucas and MK went to bring her family back. They all came back and we asked Tony to get some word out to others. MK got in bed with Lucas and laid with him a for a while. MK and I then went to a room outside his bed to talk between ourselves and we had not been in there for a few minutes when Tony came in and said we needed to get back in there. We rushed back and his sats were not good, MK was crying and I was standing over Lucas. Dr. Green then said in my ear that he was passing and there was no point in trying anything else (I assume he meant shocking his heart because a few seconds before I heard someone ask for a crash cart). I told MK what he said and she fell to the floor. Dr. Green asked if I wanted to hold him and I said yes. They began to unhook everything from him and Lucas died in my arms.

No one thought it would be that day, but Lucas has always done things his own way. So he waited till we knew, and took away any difficult decision we would have had to make and went home after we laid with him a while. Since he didn't respond to the advanced medicine he would there was nothing else that could have been done even if they would have found this much sooner. He had some great days in the PICU and only wanted to play the whole time, even to the end, he played so much that he even started sleeping less, like he knew.

After MK got up she held Lucas a while and after a while Dr. Eble came in, kneeled at our feet, put his hand on Lucas, and prayed for a miracle. We did have our miracle for almost 18 months and we'll see him again in heaven. After Dr. Eble said his prayer and his condolences, several of the staff came through and either touched us on our shoulders or said brief words of encouragement and sorrow for us and for their friend. He really did mean a lot and touched a lot of people there. A bit later a nurse asked if we wanted to bath him and MK did. It was the most peaceful and holy thing I have ever seen. They carefully bathed him and wrapped him in his favorite blanket and we held him a bit longer that evening before we decided it was time to go... ...

... ... I think that is about it sorry this post is detailed but we don't want to forget a bit of it as time goes by and as it does we'll miss him so very and painfully much!!

Wednesday, October 1, 2008

PICU Montage (so far... ...)

Beautiful Angel by Catherine Lacey Dodd for Lucas

Thanks so much for this precious and awesome encouragement for our family Catherine, you'll never know how much it has meant to us this morning; words can't express... ....

Lucas Update

Lucas's drainage stopped yesterday and they gave him a round of calcium channel blockers which really helped bring his sats back up. We're checking into weather they can continue the calcium channel blockers but last we heard it in usually not used on a continual basis. He had a good night but didn't sleep much so we're trying to get him to rest up today for the big day tomorrow for the cardiac cath at 10am.

Can't express how much all of your prayers and words of encouragement mean to us over the last few days, it truly strengthens us in our greatest time of need!

Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit