Bennett Justice
After Bennett’s Funeral I made the decision that I wanted to write one more post before leaving it be, preserving it as is, so that people can see our story. Every time I have picked up my computer since Friday I have attempted to write and my mind has been empty. It is frustrating really to want to so badly communicate yet not feel as if you can. So day after day I have been writing in my head, trying to craft my final words for this blog. I think that’s where I get caught up, the word final. I don’t want to use it because of the implications it has. My realization however is that this blog is not what will keep Bennett’s memory alive, it will only serve as a part of this process. Our hope is that it will be something that people can reflect, learn and grow from.
We would love to invite anyone who is able to attend the services for Bennett, please refer to information below. Once again thank you for all your thoughts, encouragement and prayer.
Friday, November 11, 2011
Visitation: 4:00-7:00 pm
Memorial Service: 7:00 pm
First Baptist Church New Lebanon
335 S. Church St
New Lebanon, OH 45345
Also at our church this evening they are gathering boxes for children around the world for Christmas. Please if it is on your heart pack a box in memory of Bennett so that the same love we have felt can be felt around the world. The link below will give you instruction on how this can be done.
http://www.samaritanspurse.org/index.php/OCC/Pack_A_Shoe_Box/
Last night at 6:15 Bennett was taken off of life support and placed into Tabitha and I’s arms. We sat on a small couch with our little boy, no longer obstructed by tubes and wires. All machines turned off, no beeping or white noise. Just us and Bennett. We wept as we held him close to our chests surveying his perfect little body, his soft skin, thin dark hair, his nostrils as they flared with every breath. Our dream of holding our little boy realized. For over an hour we held our son, we played music for him, talked to him, sang to him and kissed him continually. We told him of our love for him and of how happy he makes us. I told him that once a long time ago there was a man named Jesus and he was Gods son, just like you are my son, and Jesus had to die, but because Jesus died we all get to live together forever when we die, and when you get to heaven you will get to meet Jesus and he will be there waiting for you, and heaven is going to be so beautiful and wonderful.
Bennett will be coming off of life support shortly. We will have a few precious moments to hold our son until he goes to be with the Lord.
Thank you for your love, support and prayer.
Rounds came by and the doctors said they were going to meet and come back. We are waiting and will let you know when we know what’s going on.
Pray for good news.
So despite an ECMO (lifesupport) replacement, today was pretty quiet. It has also been Bennett’s greatest fluid loss today so far. Tab and I are tired and getting ready to go to bed, but it is with some anxiety we do so. Tomorrow is the day they decide whether to take Bennett off of ECMO. Originally the plan was to do so since it was only adding to the problem of fluid retention, with the new success it has been suggested by some of the doctors to keep him going for a little longer on it. We have alot of questions that need to be answered in the morning. Is Bennett going to stay on ECMO? Is he closer to getting a new heart?
Tomorrow will be trying for our family. We will continue to be in constant prayer for our son and we hope that you would join us. Once again we’d like to thank everyone for your support as we go through this, your love is felt constantly. Our prayers continue to be answered, and we know that GOD is perfect in his will.
Continue to pray for fluid loss and for GOD to continue to strengthen Bennett’s heart.
John 9
1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.
The total prep time to get the ECMO unit ready is approximately an hour, the time required to switch it, under a minute. Bennett his now hooked up to ECMO 2.0 and doing fine. The fluid they had to add should be able to be removed rather quickly based on how he has been doing so far.
He looks better, his belly although not flat is on its way. I keep on looking at pics of him at hours old and everyday he resembles that child just a little more. Today you could even make out his chin.
With the new machine, we anticipate less problems with pressure, flow, and the inability to remove fluid.
Little victories are still happening. Prayers are still being answered. Bennett means blessed and he truly is.
Psalm 34
1I will bless the LORD at all times;
his praise shall continually be in my mouth.
2My soul makes its boast in the LORD;
let the humble hear and be glad.
3Oh, magnify the LORD with me,
and let us exalt his name together!
4I sought the LORD, and he answered me
and delivered me from all my fears.
5Those who look to him are radiant,
and their faces shall never be ashamed.
6 This poor man cried, and the LORD heard him
and saved him out of all his troubles.
7 The angel of the LORD encamps
around those who fear him, and delivers them.
8Oh, taste and see that the LORD is good!
Blessed is the man who takes refuge in him!
Bennett continues to have a great day, ECMO however isn’t. A few clots have formed and one has made its way a little too far for comfort. They are going to replace the unit in about an hour. Although needed for the safety of our son it may result in some additional fluid coming back.
We got news that if he continues to lose fluid they may not take him off of the machine on Monday since he is responding so well to his current treatment plan. More time for our little fighter.
Please pray that the ECMO replacement will go smoothly and no fluid will be gained.
Thank you all for your prayer abd support.
Bennett had another good night. The doctor repositioned the tubes coming from his neck and the machine has been operating better all night. On top of this he had a good night for fluid loss. Hes not where he needs to be and still needs a ton of prayer but he is showing continuous improvement, and this gives us great hope.
The plan for today is fluid loss. I know that is repetitious but it is the single most important thing for him at this time. Continue to pray for the fluid to come off of Bennett and pray for the medical team to come up with a long term solution for our son to get him to transplant.
We love you all. More updates later today. Right now, breakfast with Eshton.
I thought when I came to the hospital it would consist of constant downtime. I brought books, movies, and lofty goals of things I wanted to finish. This as it has turned out was foolish. The past 12 days have been a blur, a revolving door of attendings, fellows and nurses, yet we are the constant. Bennett and his little bed, Tab and I and our little chair. We nod at security who have began to recognize us, we no longer have to identify ourselves to check in, they know us.This journey is not what we originally set out to do. The plan 2-3 weeks, surgery and bring our little boy home. Its really hard to think about sometimes.
