Saturday Night

Saturday, April 9, 2011

I am so thankful to my brother in law Donny, who came out to sit and talk with me tonight. He even brought some chocolate shakes from portillo's. It has been a long past four days. I have lots to say, but with Griffin asleep i need to get some rest so that I don't get sick.

Here are a couple big things that need to happen for Griffin to get home:
a) the fluid on his lungs needs to be gone.
b) he needs to have his chest tubes removed. (they are there to drain the fluid in and around his lungs)
c) begin taking blood thinners
d) regulate the right dosage of blood thinners (can take a couple of days to do this).

We are looking at another 3-4 days here in the hospital if everything goes according to plan.

Pray that everything moves along quickly.

Thank you.

Video Update

Friday, April 8, 2011

Hey everyone, just hanging out with Griffin tonight so here is a video update.

Reflections

A couple of days before Griffin was born I decided to do a search on what his name actually meant. The search kept showing that a griffin was a legendary, mythical beast that had the body of a lion and the head and wings of an eagle. At first I thought, 'that's a pretty cool animal, who wouldn't want to be half lion-half eagle?' Then I realized that wouldn't work as a viable name meaning when Jody Zappia announces it for the parent-child dedication at Harvest. (that was an inside joke to all you harvesters out there). So I searched a little more and discovered that the name Griffin had a Welsh meaning and thanks to the wonders of modern technology I discovered that his name meant strong in faith. I found a great verse on faith and wrote it in my journal and prayed for him. The verse was from 1 Cor 16:13-14 it says "Be watchful, stand firm in the faith, act like men, be strong. Let all that you do be done in love." A few days later he was born and little did Amber and I know that it would be our faith that was going to be tested.

It has been a long journey with Griffin. As I sat and thought about this I decided to look for other verses on faith. I compiled a few and thought I would share some to encourage you in your faith as well.

Isa 7:9 - If you are not firm in faith, you will not be firm at all.

Heb 11:1 - Faith is the assurance of things hoped for, the conviction of things not seen.

Heb 12:2 - Jesus is the founder and perfecter of our faith

2 Cor 5:7 - We walk by faith, not by sight.

Gal 2:20 - I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

1 Tim 6:12 - Fight the good fight of the faith.

1 Peter 5:9 - Resist him (Satan), firm in your faith

There are many more but I thought I would just start with these. My faith has been challenged and I hope yours is too.

Griffin Update

amber giving him his first sips of water.

Griffin's heart function is great. The doctors are excited about his progress and say that he is on track with the recovery timeline. However, in the midst of his heart doing well he is in a bunch of pain and discomfort. From yesterday afternoon until now he was up coughing and screaming. Needless to say he didn't sleep much at all (and neither did I). He isn't interested in food at all which for him is a big deal. Food is always a motivation for Griffin, but he doesn't want anything. He is also on restricted fluids, so even though he is thirsty I can only give him little bits otherwise he might get fluid built up in his chest.

holding him for the first time

Thank you so much for your prayers. I had a moment last night of overwhelming emotion. I was trying to console Griffin as he was crying and nothing was working. So I started a slideshow of all our family pictures for him to watch. He wasn't interested, but it hit me hard as a father watching my son in pain and seeing pictures of my other children and missing them. It made me reflect on God the Father and it blows my mind to think of the depths of anguish He must have felt seeing his son suffer and die. It doesn't matter what we go through in life we have a Father who understands our hurt and pain and knows what is best for us. That is what i place my hope in.

Here is a clip of Griffin finally falling asleep this morning.

surgery recap

Wednesday, April 6, 2011

yesterday was a long one. we were up at 4:00 and on our way to the hospital by 4:45. the hospital was a ghost town. nobody in sight. we registered and they showed us to the pre-op room. he was prepped for surgery; weight, height, and a lot of ID checking. they gave him something called versed. it knocks him out a bit and causes temporary amnesia, i like to call it 'liquid courage.' it allowed him to be able to go into surgery without screaming at us or at the nurses carrying him. he was in surgery for about 4 hours. everything went really smooth with surgery. the procedure is called a Fontan, and he now has a Gore-Tex tube connecting his IVC to his pulmonary artery. Griffin will never have a normal heart, however now his heart can function in a way to allow him a life that is like everyone else's.

now we have to wait over the next week to get his chest tubes removed and get him used to being on blood thinners. i put together a video of all the things that went down yesterday you can watch it here.

thanks for praying and supporting amber and i through all of this. we can't thank you enough.

Getting Ready...

Monday, April 4, 2011

Well things are in full swing here. We finally made it through John being gone for a week and now are trying to wrap our head's around Griffin having surgery on Wed. For John and I we keep going back and forth between being happy that the surgery is finally here and wanting to take Griffin and run away from it all.

Today we took Griffin in to get his chest x-ray, labs done, and a meeting with our surgeon's nurse. I tried to ask all my questions so I could be prepared for anything. My nurse Natalie is always the best at setting my mind at ease and walking me through it all. So thankful for her. Griffin did great, didn't love the blood draw or as you can see the x-ray, but besides that he was is crazy life filled self.

The plan...

We will be taking him in on Wed morning. He has to be there by six and will be first in line for surgery. The surgery should last about 4-5 hours (depending on how much scare tissue they have to go through). They will put him on the ECMO machine (heart long bypass machine) and then will be detaching his inferior vena cava and then reattach it to pulmonary artery (which will feed straight into his lungs). Which should make it so his blood oxygen levels should be in the 90's (what a normal person's levels are).

After surgery the first day will be tough. He will be out of it and probably in a lot of pain. Then hopefully each day he will get stronger and a bit more back to himself. For the first few days he will have to keep the chest tube in which can be quite uncomfortable. But our nurse told us that after a bit he will be able to get out of the bed and actually play on the floor or get up and move around (even with the chest tube still in). Knowing Griffin he will want to get up and be everywhere!!! Then the big thing they need to do before he can go home is regulate the blood thinner that he will be taking. They told us to plan for him to go home in about a week.

I won't even go into what we are preparing for as we go home until I know exactly what will be happening.

Our sweet Griffin.

That is about it from here. John's parents get in late tonight and then we will be preparing and having some good family time tomorrow. Please pray for peace and strength as we prepare for it all.

Round 3 of Surgery

Thursday, February 24, 2011

After 20 months since his last surgery we are right around the corner from Griffin's final heart surgery. Everything has been going so well with his development and his heart over the past year and half, that it is hard to believe we are re-entering the world of labs, procedures, and operations. Looking at him you would never know that he has a heart defect. The only indicator is his shortness of breath from all the running around he does.

As I write this, Griffin is having a cardiac catheter. It is a 3 hour procedure where they will run two or three lines through his neck and groin and allows the doctors to have an accurate blueprint of his heart when they perform the next surgery. The recovery will be difficult because he has to lay flat for six hours after the cardiac cath. Anyone with little children knows this is a difficult task. Pray that the procedure will go smoothly and that the recovery will be quick.

Here is a little video and some pictures of him before he went in.

finding joy

Monday, December 7, 2009

this was a video that our church (Harvest Bible Chapel) put together to tell a small part of our story. We are so thankful that God has given us the opportunity to share with others what he has done in our lives. enjoy.

"Joy" Harvest Bible Chapel from Arcane Productions on Vimeo.

How things have changed...

Saturday, November 14, 2009

Wow Griffin is almost 10 months old!!! I can't believe that in two more short month Griffin will be a year old. There are times this whole process has seemed like 10 years, but then when I really think about it I have no idea how almost a whole year has passed. I am so thankful for the provision the Lord has blessed us with this last year. God has brought us through so many hard times, but has given us so many amazing times a long the way. I wanted to post some pictures of how far God has brought Griffin. There were times when we didn't know if Griffin was going to make it he was so tiny and fragile, but now if you look at him he looks so healthy and strong. We always say he is a "beast" because he is so big and eats so much. Still hard to watch him turn colors and see him get blue around his lips, but I guess that is what the doctors say is to be expected. I think for a mom no matter how much the doctors say it is normal it still doesn't seem right. I am learning each day to put Griffin back into God's hands and know that no matter how much I worry it won't change anything. He truly is God's not mine, yikes that one doesn't always come easy. Sometimes when I am caught up in the worrying I start to think to the future and think about his next surgery. He seems so "normal" right now, it is hard to think that we never know which cardiologist visit they are going to say his numbers are dropping and surgery is coming. Uhhh.... the thought of surgery is hard, but I know there is no point in dwelling on it now. As much as I don't want surgery to come it will be nice to think that hopefully this may be his last cold and flu season that is kind of scary. So here are a few pictures of how far Griffin has come. Thank you Jesus for truly taking care of my sweet baby Griffin...

Sorry for the font change midway through, can't figure out how to change it!!!

Griffin's doing fantastic...

Wednesday, September 23, 2009

Those were the words that his Cardiologist said about Griffin last week FANTASTIC!!! It was such an answer to prayer. I mean don't get me wrong Griffin still does need a third surgery, but right now he is doing amazing. I guess kids with defects can have "leaky hearts" because of the surgeries, but nothing like that is going on for Griffin. We have heard differing opinions on when Griffin will need his next surgery so we are just thinking it could be as close as 18 months old or as far away as 3 years old. The great thing is that we know that God is completely in control and whenever it is it will be perfect timing. We are so thankful for the blessing Griffin has been to our family, can't tell you how proud we are to be his parents.

Now we are just focusing in on baby things. I can't believe he is already 8 months old already!! Griffin now has two teeth and is sitting up now. He still falls over occasionally, but for the most part he is loving sitting up and playing with toys. He is eating all kinds of food, still taking a bit with real people food. He can have a tendency to choke so that is never fun. I don't know if it is from having the ventilator in or if that is just how God made him. Not going to lie the choking has given me a bit of a heart attack, so we are trying to take it slow. Griffin is always just so happy and I can't even begin to tell you how thankful we are for that, especially with all that he has been through. We are also taking Griffin to a chiropractor (Mark Meyers) to help him with a bit of tightness in his neck. So we are excited to see what he can do for him and so thankful for the way he has blessed us with his serves!!

Things have been pretty crazy around here with Eli starting up school, Griffin getting older and wanting to do more, Eden becoming quite the little girl, and John now being the High School director at our church. Even though it might be crazy we are loving it and loving where God has us. There have been some rough times and we know that there are some rough times to come, but we are holding on to the promises that God never fails, never leaves us, and is always with us and going ahead of us!!

Sorry it has been so long, thank you to all of you who have taken an interest in our family and all the prayers.
Love you all.

Amber