hinger happenings

A Week at Home

2011-06-16T21:53:00.004-05:00

First off, let me apologize for not updating the blog sooner with the results from last week's echo. I have had a number of people say to me "what's happening?, how is Griffin doing?, I haven't seen anything on the blog." It has been a little bit of a rough transition at home. There has been very little extra time to sit and update the blog. Little did I know the sleep I had at the hospital would be better than the sleep at home. Between the new baby being up to administering Griffin's meds throughout the night, sleep is a rarity.

But enough about me and my strange sleep patterns. The appointment last week went really well. I took Griffin in and I'll admit I was a bit apprehensive. I sat in the "echo room" with our favorite nurses Natalie and Kathy waiting to see the results. It came back showing the same amount of fluid as when he left the hospital. This is great because it means the fluid isn't continually accumulating. It could simply be Griffin's normal amount that he lives with forever. The best part is that it showed his heart is healing!!!! Thank you Jesus.

After the echo I took Griffin to the Infectious Disease doctor and they said his numbers were looking good!! If they continue to progress thy will take him off all the antibiotics he is taking. Which would be amazing because he is on six doses of antibiotic a day. One med makes his pee and tears turn orange and the other makes him sweat, all things I can't imagine being great for his body. Hopefully this will also mean we can take the picc line out soon. He hates it, I think he associates it to the hospital every time I hook him up to his medication. Even as I write this I am waiting for his medication to finish so I can disconnect it and then set the alarm to do it again at 6:00 AM. Hence the reason I am writing this at 12:47 AM.

This brings me to my main point for writing. Monday morning we will be going back in to have his heart looked at again. I read and amazing verse that has encapsulated what we are going through in Romans 12:12 - Rejoice in hope, be patient in tribulation, and constant in prayer. I am rejoicing in the hope that his heart is completely fine and everything is back to normal. The words be patient in tribulation are a huge reminder to me throughout everything that has happened and as we continue in this journey. I would ask you to be constant in prayer with us so that we do not have to return to the hospital or cardiologist for a long time.

Today was the first time I had been at church in a long time and I stood there in the back during the last song and was in tears as we sang Jesus! What a Friend for Sinners. These words jumped out at me.

Jesus! what a Strength in weakness!
Let me hide myself in Him.
Tempted, tried, and sometimes failing,
He, my Strength, my victory wins.

Last Request

2011-06-12T20:36:00.003-05:00

Griffin's empty bed

I have always been the optimist. Always the one to say "it will be OK."

It doesn't matter what the situation is:

flat tire - "it'll be fine" (no jack to lift the car either - "we'll figure something out")

no money - "we'll be OK"

the kids are climbing over the fence - "they'll be OK, they're kids"

only one car - "I'll ride my bike to work" (it's actually Amber's bike. from high school.)

lost my wallet - "oh shoot, I lost my wallet!" (you can't be optimistic all the time)

My optimism has almost been to a fault. My laid back tendency has gotten me in trouble at times. But for the most part it has been an ability to look at a situation and trust God through it and know he will in fact make everything OK.

Going into tomorrow's cardiologist appointment I don't have that same optimism. Sadly, it comes as a result of the last two times I have taken Griffin in for an appointment. Each of those resulted in us not returning home, and instead being shuttled over to the PICU. So going in to tomorrow's appointment I am fully trusting in God. I know this should always be the case, but in my own ability I can't walk into that place without fear, worry, and doubt.

I am sure everyone has at least seen or heard the verse in Proverbs 3:5-6. Whether it's on a cheesy, sunday school bookmark or a nice needle point, framed picture in your Grandma's bathroom. As redundant as those words might be to some, they could not be more imperative at this time. As a refresher, it goes like this

Proverbs 3:5-6

Trust in the Lord with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him

and he will make your paths straight.

It's pretty clear. Just needs to be put into practice. What is the area you need to trust the Lord with all your heart? Spouse, finances, children, abuse, job... whatever it is, look to the Lord and he will direct your path.

For me it is tomorrow morning at 9:00 AM when I look at a screen to see if the fluid has re accumulated around Griffin's heart. Let's pray for each other. I will pray for your areas of need and I deeply covet your prayers for my area of need.

Pray the bed pictured above would remain empty.

thank you.

Home...

2011-06-11T12:31:00.004-05:00

She doesn't write all the time, but when she does it's really good. Read this post about being home from Amber...

Wow, where do I even begin? I want to start off by saying how thankful we are. There are so many things but above all I am thankful for God's faithfulness. It has been a tough road and at times I didn't know if I would make it, but God has been there every step of the way. Through all of this I have learned to find joy in the little things, find my strength in the Lord (minute by minute), and to take every worrying thought captive. Somedays that has come easier than others. The mornings when I would sit at home waiting to hear what the echo results would be were some of the most difficult. I would sit in constant prayer asking for strength to be able to keep going no matter what the results. And for those of you who don't know me well I am an instant results kind of person and nothing about this whole 2 months has been instant!!! I feel like I could go on and on about everything I have learned, but I know you are all probably wanting to hear how Griffin is doing now.

But before I go there, I want to say thank you to all of you that read this blog, follow us on facebook, and have prayed on behalf of our family. As a family we have truly felt the body of Christ surround us. I am always amazed that people continue to keep up with what is happening even when it has seemed like things just keep going. Your faithfulness to our family we will never be able to repay, but know it will always stay close to our hearts!!!

So home... Yikes. It has been filled with sad tears, happy tears, not much sleep, lots of movies, trying to come up with something Griffin would want to eat, Griffin sitting with daddy, not much sleep, Nurse Nancy (our home nurse who come to help with Griffin's picc line), lots of prayer, John and I looking at each other in amazement that we are actually a family at HOME, not much sleep, trying to figure out what a new normal is, and lots of prayers about Monday's echo. There is so much more because it seems like our days last forever (maybe because we see a lot of the night being up with the newborn).

Something else that has been heavy on my heart is looking at Griffin and knowing the reason he cries so much is because of all the pain he has had to go through. So many times I would get caught up in how hard this has been for me, but my baby boy has been the one getting poked, cut open, and had tubes coming out of his chest for 4 weeks. As I write this I can't help, but cry. The pain of that is deep and I can tell it is deep in Griffin, as a mom I honestly sit here and don't even know how to put it into words. Something I am trying to teach my kids is that God is always with them, this is a truth that I have to feel when I think about it. Through every poke, cry, and pain God is and was there with Griffin comforting him better than I could. Something I am still working on. But in all of these things, hugely thankful hearts. Thankful for the little things like doing the laundry and my dishes, all these I longed to do because it would mean life is more normal.

Next Step... Griffin has an echo on Monday. The past two times we have gone for check-ups he has not come home and then had an echo on Monday he has had to go back into the hospital, ugh. So obviously it doesn't really bring warm feelings to my heart when I think about it. It will be a big day for us because then we will truly know that Griffin's heart is healing. That will be so nice to hear. Then when John goes back to work (which can I just say how thankful we are for our church Harvest Bible Chapel- Naperville for being so gracious with us through this time, we love our church and can't wait to be back!!!) and I don't have to think about if Griffin is looking too pale or not eating enough or too tired. On Monday he also has an appointment with Infectious Disease doctor (wow yes it sounds very intense to us too!!) and even though everything has looked good with the infection, we are just praying that goes well too!!!

The prayer...

-That we would walk in God's strength all day long

- For Griffin's echo on Monday- that it would show his heart is still healing and that no more fluid has gathered

- For me not to get overwhelmed, getting use to having 4 kids along with one 2 year old that isn't happy with much these days

- That little by little Griffin would start to come back to his joy, life filled self

- That worry wouldn't over take our minds and thoughts

- That there would be no sign of infection

- As things get better that we never forget where God has taken us

- For Eli and Eden who had their Daddy and brother gone for a long time and are now dealing with so much family change

Big Day

2011-06-08T18:18:00.003-05:00

right before the tubes came out

up and moving around

As most of you know Griffin had his chest tubes removed today. It was a thrilling moment because for the first time in four weeks he hasn't had tubes hanging out of his chest. He was excited (not during the process but afterward) and was up and running around not long after.

So where do we go from here?

Tomorrow morning he will have another echo and if everything looks good we will be released later in the morning. I am still in shock. I can't really comprehend the idea of going home.
It seems surreal.
It feels impossible.
In my mind I keep thinking; can this really be happening.

It is happening and I am so thankful. As all the comments started pouring in today, of people who were thankful on our behalf, I was brought to tears. Someone reminded me of the story in Mark 2 where four friends lowered a man who was sick through the roof to be healed by Jesus. They didn't give up, they persevered, they had faith, they fought on behalf of that man. That is what each of you have done. You have fought for Griffin. Some of you don't even know us. When it seemed like there was no way, more people would message us and say "we too, are praying for you and your family." Thank you. I firmly believe in the power of prayer and each of you has played a part in our family arriving at this point.

Thank you again from the bottom of my heart and I will keep you posted as to what happens tomorrow.

they gave Griffin a special cake for being so brave

he is ready to dig in

Cool Story

2011-06-07T17:59:00.004-05:00

Most of you saw the video I made the other day of Griffin and myself. I tried to capture what a typical day looked like. If you haven't seen it, I'll add it to the bottom of this post. Anyway a friend of mine saw it and recognized the music that was playing in the background and decided to send the video to the lead singer of the band. Not only did he watch the video but he wrote back that same day! Here is a little snippet of what he wrote:

my goodness. thank you so much for the email.. i just watched the video and am so so heart broken by the situation that griffin and his family are facing. at the same time, it's so inspiring to see him and his dad being brave and still finding ways to smile throughout such challenging times. ugh. i will absolutely keep griffin and his family in prayer and will ask this of others as well - if there's anything i can do to help in some way, please let me know. even if it's just posting a blog to ask folks to keep them in prayer and thought.. let me know if there's some way!

please let them know that i am praying and that i am truly touched by courage and by the privilege of them allowing that song to be a part of the backdrop to the experiences they are having right now.

thank you for sharing this.

much love, ryan

sleeping at last

I am humbled by his response to our situation. Thanks Ryan. The band is Sleeping at Last and the song is Next to Me. It's great music so support these guys. (I was just happy Youtube didn't reject the video because of copyright laws).

Oh Boy...

2011-06-07T17:24:00.000-05:00

I spoke with the surgeon and his nurse this morning and I am trying to process everything that was said. They are happy with the amount of fluid that is draining from the tubes and also the amount that is around his heart. They will do another echo tomorrow and as long as everything stays the same or gets better they will pull out the chest tubes tomorrow. Four weeks of chest tubes and draining all comes down to this echo tomorrow. Lord have your way. They will then keep him overnight do one last echo on Thursday morning and then possibly send him home.

Like I said, I am not sure how to even process this. Do I jump up and down, do I take it with a grain of salt, how should we respond? My heart is leaping for joy right now and yet I am not 100% confident that everything will go according to plan. Mostly because nothing has gone according to plan in this place.

Inevitably it all falls back to trusting God and his plan. Amber and I know that He can get us out of here in an instant and we also know he could keep us here longer. We rest in his plan and his purpose.

Whatever the news is tomorrow, We will rejoice.

We believe, hope, and have faith for the miraculous, and in the same breath we know God has our best in mind even if it doesn't come back clear.

Just heard an amazing song that encapsulates the journey we have been on. It speaks to the pain of trials and suffering and recognizing we don't walk this road alone. It is called Never Once by Matt Redman, here are just a few of the lyrics.

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

a step in the right direction

2011-06-06T20:49:00.002-05:00

The echo didn't come back 100% clear of fluid. My heart sunk a little as I watched the technician clicking and measuring on his machine. A myriad of thoughts were flowing through my mind. I didn't want to have to tell Amber but as I spoke with her she showed such faith and peace. I was challenged and confronted in my lack of faith at that moment. We waited to hear the 'official' report and it wasn't as bad as I thought. Both the surgeon's nurse and our cardiologist were encouraged. It appeared as though the fluid had actually decreased slightly from Friday and there has been less fluid draining from the tube.

A step.

Not a leap.

A step in the right direction.

I'll take it.

I will be sitting down with his surgeon tomorrow morning to discuss the future plans and see what he wants to do.

Amber and I kept saying how thankful we were for the little victories. Thank you for praying. The amount of support and love we have felt has been overwhelming (in a good way). People I don't even know are writing and telling how much they are praying. We are humbled.

Thank you. This has been a journey, and like Ron preached this past Sunday we would not be able to make it without the body of Christ, the church. (I have been listening online)

Please Pray

2011-06-06T09:08:00.003-05:00

I spoke with the surgeon's nurse this morning and they said that this echo will determine what happens next. If it comes back clear than they will probably take the chest tubes in the next couple days. If fluid is there then we have to figure out another way to fix this problem.

Pray with us that there is no fluid. I know so many of you already have been praying but today is vital step in us either staying here or getting to go home. Not sure when exactly they will come to do the ultrasound of his heart but it could come at any time.

Spread the word!

thank you so much!

Lazy Sunday

2011-06-05T20:05:00.003-05:00

When a doctor says to you 'this is a hard case because it's out of my control' it reveals who is the Author of creation. See, the doctors can't do anything to stop the fluid. The only thing they can do is wait and watch. It has allowed me to speak about the trust that I have in God, knowing He is in control and that for me and my family we will trust in Him every step of the way. The only reason I have peace, or hope, or joy is because of Christ. I am a sinner, selfish through and through. Left to my own devices I would choose me over and over. It's only because of Christ's redeeming work that I am able to have faith, confidence, and assurance. God has our best in mind throughout all of this.

Tomorrow is a big day. They will see if any fluid has re-accumulated around his heart. If it hasn't, we will be making steps to getting out of here. As I mentioned earlier, this is in the Lord's hands. Agree with us in prayer that Griffin could come home this week.

I documented the entire day today and made a little video of it. Amber brought the whole family up and it was fun to hang out. Unfortunately in all my excitement to see Amber I didn't get to document her being there. I am so thankful for that woman. I cannot do what I am doing without her being an absolute amazing woman who is dedicated to her children and family. Love you Amber.

Enjoy the video.

Griffin/Fluid Update

2011-06-03T20:28:00.003-05:00

Today we had our first echo since the surgery. We were anxious to see the results and find out if there was any fluid around his heart (that is why he is here in the first place, you can click here to read more about that if you need to get caught up). So the echo guy comes and I guess there was still fluid remaining around the left side of his heart. It does look better, but still it's there none the less. As a result we got Griffin up and had to force him to move around so that the fluid wouldn't just sit there. He wasn't too thrilled about the idea, which you can see from the video below, but as a result we saw some fluid drain from around his heart. The doctor said he thought the fluid that drained would be the amount that they saw on the echo. Now the prayer is that no fluid would accumulate over the weekend so that when he has an echo on Monday it would come back clear and they can start looking at him returning home.

We cannot leave until they see very little drain from his chest tubes and each echo comes back clear. I know that day is coming soon.

One other prayer request is that they did a culture of the fluid that was around his heart and found a staph infection. They don't seem too worried about it and he is on antibiotics which should wipe it completely out. However, pray with us that it wouldn't materialize into anything worse.

Here is a little progression of Griffin's day from not so happy to happy. He is a trooper and I love him with all my heart.

The day after surgery

2011-06-02T21:03:00.009-05:00

first time up since surgery

mother's touch makes a difference

I have been attempting to write this on my computer but for some reason the hospital internet is acting up. So here I am typing this out on my phone.

I forgot how difficult the recovery is after surgery. I think Griffin's high spirit's this entire hospital stay had me thinking he would bounce back with no problems. However, let's remember those small details about his chest being cut open, rib cage cracked open, and his heart being worked on. Yeah. I would be in a lot of pain and a lot crankier than he has ever been. I have to give my man credit, he has endured so much. All I've had to is sleep on a couch for a couple weeks. That is nowhere near as difficult as being pinned to the bed for blood draws, woken up in the middle of the night for blood pressure, tubes hanging out of his chest, waking up in pain from surgery, and so on. Griffin is truly my hero and my inspiration. If he can maintain an excellent attitude then so can I.

Today has been all about recovery, were not even thinking about fluid yet. It's one step at a time. He made a remarkable turn around from last night and this morning where he was crying and agitated. By the afternoon he was actually smiling, talking, and eating (does ice cream count). Amber and the kids came up to visit and big brother Eli was amazing. He has had a really difficult time being separated from his little brother and his dad. He played with Griffin and helped him turn the corner (the morphine didn't hurt either).

I am amazed at the amount of support and prayer we have received, it is humbling to know that so many people are pleading at the feet of the Father on behalf of our son. From the bottom of my heart, thank you. As a good friend reminded me today we have a Father who is sympathetic towards us. He knows the pain of watching a son suffer, we do not walk this path alone. When I read those words this morning I was in tears thinking about God the Father seeing his son; beaten, mocked, and crucified all to pay the price for my sin. I wouldn't put my son through any of this for someone else's sin. The words of the old hymn ring true, "How deep the Father's love for us..."

In the days ahead will lie the verdict of Griffin being able to come home. Continue to pray with us that fluid would cease to drain and he would be released from the hospital. We will keep you posted.

Once again, thank you.

Eli and Eden love their little brother

a magician stopped by

Surgery Update

2011-06-01T10:34:00.004-05:00

post operation

Surgery is complete. Not the results we were anticipating.

The gore-tex tube is not the problem, his own heart tissue is the cause of the fluid. This means that replacing the tube wouldn't solve anything. His heart hasn't fully healed and as a result it is weeping fluid and causing the fluid to build up around his heart. It wasn't until they had him opened up and cleared everything out that they realized the tube wasn't the source.

So what did they do?

They ended up wrapping the gore-tex tube with this special mesh that will help in case it leaks at all. They also put in some mesh around the lining of his heart. All this is an effort to have to try and allow his heart to heal and dry up.

What does this mean?

This is the most depressing part. We still don't have a definite answer as to when he will be coming home. He has two giant tubes in his chest that will continue draining any fluid that gathers (this is better than what he had before; they won't get blocked, and they drain much more effectively). Again we are to sit, wait, and watch. There is nothing else they can do to get the heart to stop seeping fluid other than to dry it out and hope it heals. If it continues to drain a lot they will re-open his chest and replace the gore-tex tube because it will be the only option left.

So here we are again. God has asked us to wait, to trust, and to lean. I was in tears this morning hearing the unexpected news and the unknown future. At that moment is when Job 2:10 popped into my mind. "Should we receive the good from God and not the bad." I trust my Lord and Savior. I trust His plans and purpose. I trust that He is in control.

I will leave you all with a verse that has encouraged me multiple times and even more so at this moment.

Romans 11:33-36

Oh the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgements and how inscrutable his ways!

"For who has known the mind of the Lord,

who has been his counselor?"

"Or who has given a gift to him

that he might be repaid?"

For from him and through him and to him are all things. To him be all the glory forever. Amen

best mom ever

A Mother's Heart...

2011-05-31T21:23:00.004-05:00

Well tomorrow is it. We have waited three weeks and now we know the only option is surgery. Today when I came to visit Griffin I could tell he looked paler and he wasn’t eating too much. So hard to see, but in a sense gave me conformation that we had to do the surgery. Above all I want Griffin to be healthy and home with us.

Through this whole time it is hard to describe the range of emotions I have felt. I have gone from true peace in God, to utter frustration, experienced a hurt I didn’t think I could bare, and moments of standing in faith. The reality is that I could switch from any of those emotions in a 20 min period. These three weeks have felt like a lifetime, probably doesn’t help that I had a baby somewhere in there too!!! But through all of these emotions God has been there faithful to take care of my baby.

Tomorrow I feel like I will be stepping into a new season, surgery. We have made it through the waiting and hoping and now we know surgery is happening tomorrow. In one sense it feels like a relief because now hopefully each day he can be taken steps towards home, instead of the constant waiting. But in another sense it rips me apart. Thinking my baby who I was just with today that is so full of life is going to be cut back open and have his heart messed with is so hard. I guess this is why I am thankful I don’t get a choice, Griffin has to have surgery or he won’t come home. And then this is where my faith has to kick in. Faith to know that God is in control and He knows what’s best. Yikes that one doesn’t always come natural to me. John on the other hand has faith like I have never seen in my life. I can’t tell you how much deeper I have fallen in love with John as a person and with his faith. Each day he wakes up on the same hospital couch and faces the day. Without complaining, bad attitudes, or even the 'why me’s,' but with joy, faith, optimism, and strength not just for himself but for me. Can’t tell you how thankful I am for him!!!

Surgery tomorrow will start at 7 am. We don’t really know what the surgery is going to entail tomorrow. There will be three options and they will decide when they are in there what they are going to do. First option- if they can see a hole in the gore-tex tube then they will wrap it and test it to see if it works. My nurse told me they would only do that if they thought they were 99% sure it won’t leak. Second option- Take out the gor tex tube and replace it with another one. This one he would have to be on the Heart Lung Bypass Machine and would essentially be like he was having the fontan surgery over again. The third option- to take out the gor tex tube and replace it with part of an aorta from a cadaver. This one he would have to be on the bypass machine again and would be like the fontan.

I have mixed emotions about all of them. I just pray that God would make it super clear to the surgeons which ever one they choose will be the right one. The one that would stop the fluid and let Griffin come home!!!!

Ways to pray for us:

-That God would protect my baby Griffin and put His healing hand around him in surgery and through recovery

-That recovery would go super smoothly and quickly

-NO MORE LEAKING FLUID

-That he wouldn’t get any fluid on his lungs like last time

-For strength and protection for John so he doesn't get get sick

-That God would protect Flynn at the hospital. newborn + hospital = not good

-Strength and peace for Eli and Eden who are really feeling the effects of having their daddy and brother gone

-That I would have faith in the midst of struggle and peace only God can give

-Strength for my mother who goes everywhere with me and helps me in the nights with Flynn

-God given wisdom for the surgeons to make the best call so nothing else has to be done afterwards

-That even though we might not feel like it at times that we would be a light and share our faith

Thank you all for standing with us through all of this. A lot of days I feel like I am not going to make it or don’t even want to make it for that matter, but all of your prayers, emails, facebook message, and constant encouragement have helped carry us through. THANK YOU.

Please Jesus protect my baby…

The Verdict

2011-05-30T20:48:00.004-05:00

Well after being here in the hospital 18 out of the last 21 days trying to get fluid away from Griffin's heart the decision for surgical intervention is all but finalized.

Today we waited. We were told that he wouldn't have an echo today because of the holiday and only if it was an emergency would they have it done. Well this afternoon, his heart rate began to jump and after attempts to bring it down they decided to have the echo technicain come in and see if the high heart rate was caused by fluid around his heart. Sure enough there is a moderate to large effusion (fluid) that was seen by the technician. I am still waiting to hear from the cardiologist what the next steps will be. Will they need to remove the fluid before surgery or will they just closely monitor him until Wednesday morning? I should hear more in the hours ahead.

We are going to try and bring Flynn up to the hospital tomorrow so the brothers can meet and say hi before surgery.

I stumbled across this video as I was reading some blogs and it couldn't have been more timely and more clear about God's heart.

Oh and Eden got a tick in her hair today. Good times.

Waiting

2011-05-30T09:29:00.003-05:00

Well this morning there has been no fluid that has drained. That means one of two things:

1. The fluid around his heart has dried up and is fixing itself or

2. There is a blockage in the tube not allowing the fluid to pass through.

I am praying it's the first one.

I spoke with the surgeon this morning and he mentioned that if the echocardiogram still shows fluid on the heart they will proceed with the surgery.

So here we sit.

Waiting.

Anticipating.

Expecting.

Praying.

I will keep you posted.

Griffin is better at waiting than I am.

Major Prayer

2011-05-29T14:20:00.003-05:00

Ok so now that you are up to speed. We have this nasty fluid problem in Griffin's heart. The source of the fluid is from the gore tex tube that they placed in his heart during the last surgery. Apparently they have only had 2 or 3 cases like this in the past ten years. What happens is that fluid seeps out of the tube and fills the sack around the heart. Sometimes the fluid dries up on it's own and other times they need to surgically repair it.

We have been waiting the past two weeks for it to drain and clear up on it's own. However it hasn't exactly cooperated. If it doesn't show significant signs of improvement in the next couple days they will be doing surgery on Wednesday.

Surgery would entail them having to open his chest up again. Then, depending on how bad it is, either repairing the existing gore-tex tube or replacing it all together.

We really do not want him to have surgery again. Please join us in praying, fasting, interceding for this to be resolved. We will find out Monday morning if any fluid has re-accumulated around his heart and that will be a big sign of whether they do surgery or not.

Thank you for partnering with us through this.

May 29th Griffin Update

2011-05-29T11:12:00.004-05:00

27 out of the last 54 days have been spent in the hospital.

In case you haven't been caught up to speed, Griffin has had fluid accumulated around his heart that, if left untreated, would be very damaging to his heart and health. Twice we have gone in for "check-ups" with his cardiologists and twice we have been immediately transported to the Pediatric Intensive Care Unit (PICU). They then promptly insert a tube into his chest as an attempt to drain the fluid. At one point almost 16 oz was drained in 12 hours. This time, Griffin and I have been here since the 15th of May waiting to see if the fluid would stop draining. It has been an up and down roller coaster of thinking we are about to go home to being told he would be here for another week. It feels like there is no end in sight.

I went home for the first time last night to be with Amber and our other children. I held Amber in my arms as she was weeping. The physical pain that comes from our family being separated has become more than she can bear. It is a hard reality that our youngest son, Flynn, is a week old today and has never met Griffin and I have only seen him a handful of times. As I tried to comfort Amber I couldn't help but begin to ask "Why?"

Why is this happening?

Why is it dragging out for so long?

Why won't the fluid stop?

Why can't we just be together as a family?

God.... why?

I know I am not the first to ask that question and I certainly wont be the last. When we ask why it's because we don't understand. And in all honesty it is hard to understand when we go through hard times. The beauty of loving God who cares more for us than the birds of the air is that we don't have to ask the question why. He knows the plans for us even though we don't see it. I don't have to labor with the question, my "why?" rests in the hands of his infinite love and wisdom.

This takes faith. Faith is sometimes easier to talk about than to live out. Lord please give us faith to trust you with the why.

Good News!

2011-04-13T20:35:00.003-05:00

Today Griffin got his chest tubes out. This was huge. A vital part of the process of him coming home. Now we wait to get his blood levels regulated with the blood thinner.

There is a light at the end of this tunnel!

Both Amber and I are feeling the affects of being apart and the physical toll this is taking on each of us. For Amber, being 8 months pregnant, it has been difficult physically and emotionally and for me my body is starting to fatigue and fall apart.

On the other hand we are so thankful that things have gone so well. We know that there are so many children and families who have it far worse. Reflecting on that, helps keep everything in perspective.

Here are some videos and pictures of the day:

about to get his chest tube out

Our awesome surgeon taking the tubes out

little man with his mommy

Hospital: Day 7

2011-04-12T21:11:00.003-05:00

You may or may not have heard that Griffin didn't get his chest tubes out today. A little frustrating, however Amber and I have discovered that our timing is not always the best timing. God has the best timing and He knows exactly when Griffin needs to come home.

It sounds like they are going to remove the chest tubes some time tomorrow. They might even start him on the blood thinner tonight. It is hard to get any hopes up because we have thought for the past two days that the tubes were coming out and they haven't. Pray everything moves along smoothly.

As much as I love being with Griffin and helping him out, I am pretty sick of this hospital. Amber and I are eagerly awaiting the day when we can have our family all back together again. Thank you again for all your support and prayers.

Here are a few pictures from the day.

they removed the dressing on his incision today,

you can see his scar.

we have had some great father-son time

probably his favorite thing to do:

play with the remote and push the nurse button

we had a sweet skype session with Amber and the kids before bed

this is how he fell asleep

From Bad to Better

2011-04-11T19:14:00.006-05:00

Today started off pretty rough. Ever since we came in to the hospital we had anticipated a week long recovery for Griffin. So naturally, we were thinking he would be able to come home on Wednesday. Unfortunately, we had a minor set back today. Because of the fluid on his lungs they were unable to remove the chest tubes which means the date of his departure is moved further back. Why does this affect his departure so much? Well he has to get his chest tubes removed before they can start him on the coumadin (blood thinner). Otherwise he will bleed too much as they remove them. Once he starts the blood thinner we have to wait 48 hours before we can leave because it takes that long to be able to regulate it in his system. If everything goes well he will get his chest tubes out tomorrow and we will be able to come home on Thursday or Friday.

Although we received that news this morning the day turned out to be one of the best days we have had. In order to get the fluid off his lung they encouraged him to get out of bed and start walking around. At first he was quite resistant, but as time went on he took more and more steps and eventually looked at me and said 'Daddy..., run?' I had to remind him that running was out of the question but we did do a few laps around the PICU hallways and were able to hang out outside the crib.

Griffin sitting on the couch

Getting a sweet gown

Best mom ever

So although the initial thought of being in this place longer was quite daunting, seeing Griffin come to life today was amazing. And the other great answer to prayer was that they took another x-ray of his chest and said his left lung was 30% better than what it was in the morning. He is now resting in bed and Amber is rubbing his trying to help him get some rest.

Pray that everything goes well and he is able to have the chest tubes removed in the morning. Thank you so much to all of you who have sent encouraging texts, emails, comments, and facebook messages it shows the amazing dynamics and community in the body of Christ.

Here is one verse that really encouraged both Amber and I today Romans 4:17-22.

Great Visit

2011-04-10T18:45:00.003-05:00

I was blessed to have a Ron & Jody Zappia stop by the hospital today. I am so thankful for their leadership and friendship. They took time to pray for Griffin and listened to all the details of what he is experiencing. Griffin was happy for the most part, but started to get a little irritable by the end. Thanks Ron and Jody.

Hospital Day 5

2011-04-10T10:47:00.004-05:00

Well it's Sunday morning and it feels a little strange to be in a hospital and not at church. However, I am committed to being here with Griffin throughout his recovery. I love him so much and it is great to see him start to recover and act more like himself. The first few days were filled with pain, confusion, and anger for our little man. Now he is starting to communicate again and interact a little more. I shot a quick video of him this morning that I thought I would share with you. Thanks again for all your prayers and support.

Saturday Night

2011-04-09T22:40:00.002-05:00

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

2011-04-08T22:09:00.004-05:00

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

Reflections

2011-04-08T20:40:00.004-05:00

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

2011-04-08T09:15:00.003-05:00

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

2011-04-06T21:02:00.012-05:00

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...

2011-04-04T21:22:00.006-05:00

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

2011-02-24T09:06:00.006-06:00

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

2009-12-07T12:40:00.003-06:00

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...

2009-11-14T09:14:00.003-06:00

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...

2009-09-23T10:17:00.003-05:00

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

Help Support Eli for School

2009-08-24T09:15:00.002-05:00

Hey everybody,

It's been a long time since I have posted anything on here. That doesn't mean nothing has been happening, because there has been tremendous amounts happening in the lives of the Hinger family. I will have to fill you in with everything later.

One of the things that is happening is that Eli is going to kindergarten this year. We are so thankful for his school, Clapham. They love their students and genuinely pray for them and seek what is best for the student. He was there last year for preschool and now back at Clapham for kindergarten.

This is where you come in, over the summer Eli was doing a reading plan to raise money for the school. He did a great job, reading around 900 minutes! If you would like to help support Eli in his reading and the school, I am looking for some people who would be willing to pledge a few cents per minute that he read this summer. How can you turn down this guy?

If you think you can help in anyway please let me know at thehingers@gmail.com. Thanks

links of the week

2009-06-30T15:38:00.004-05:00

i got this idea from a friend over at the harvest blog. he posts links to interesting articles that he has seen over the week and shares them with everyone.

here are some of the things that have impacted me over the past week:

this might sound sexist at first but i think it is a good challenge.

michael jackson and the book of ecclesiastes?

one way to be the most popular kid in school.

all men should read this....and this, no matter what line of work you are in.

finally please enjoy this video as it celebrates all things canadian. happy canada day!

what do you do for family night?

2009-06-25T12:27:00.002-05:00

something that really motivated me to be more deliberate.

Family Nights from Carlos Whittaker on Vimeo.

life at home

2009-06-23T22:58:00.005-05:00

i have realized that it is a lot harder to update the blog when you're not sitting around for hours a day in the hospital. now i have responsibilities that i have to take care of.

it is pretty exciting to see how griffin has progressed since we have brought him home. he has still been in pain and is not quite back to his normal self, however it hasn't even been a full week since the surgery. some moments you'd never know he had heart surgery and others it is quite evident he was in the hospital last week.

here are some pictures of life here at home

and a video that is about 30 seconds of griffin playing with a toy, with his foot.

a tribute

2009-06-21T08:01:00.003-05:00

i want to take a moment and give credit to my father and say thank you. on this father's day it is a joy to celebrate it together. me in my semi-new role as father and his from years of being a father.

as i think back to when i was three and sick in the hospital with a kidney disease. it was God who used that time to bring my father to himself and into a new relationship with Christ. since then he has not looked back. getting out of his business and feeling called to go to bible college we sold everything and moved to louisianna as an act of faith. from there the journey continued and ever since i have witnessed a desire and a sensitivity to the leading of the Lord.

i want to say thank you for being an example of what the spiritual head of the family looks like. i often remember seeing and hearing you, up early in the morning reading your bible and fervently praying for our family. i also remember the list of names written in pencil on an 8 1/2 x 11 piece of paper that you would pray over daily. people in the church, people you knew, or anyone that just needed prayer. that is a testimony to your belief in the power of prayer as well as a discipline to do it.

growing up there was never a time when dad wasn't singing some song to Jesus or just walking around the house saying 'thank you Jesus.' i am also blown away at the open door my dad has always had. there were always people living with us and him and my mom continue to open their home for people to live with them.

all this to say, thank you dad for being and example to me and how to lead my family and reach out to others.

now i have to run because i have a little boy who is craving my attention.

almost there

2009-06-20T09:54:00.004-05:00

well griffin and i are waiting for the surgeon's nurse to come around and tell us we can go home. so we will wait patiently (not easy to do after 75 hours). this is us hanging out at some ungodly hour this morning.

the kids come to visit

2009-06-19T16:08:00.003-05:00

we had the pleasure of having grandma and grandpa bringing Eli and Eden today. it was fun to have them here since i have not seen them since tuesday. how does the human heart have enough room to love so many people? i don't know how, but i just love each of my kids like crazy and they each have their own little personalities.

anyway griffin has been eating well today but still not sleeping much. he likes the formula we brought from home much more then the stuff they have here. not much more to say here are the pictures and i am going to take a quick nap.

something i was moved by here at the hospital

2009-06-19T09:15:00.000-05:00

when we first came up to the PICU (pediatric ICU) after surgery we had to wait in the family waiting room. it is a small little room with a couple couches and some chairs. there was an orthodox jewish family that was in there as well. the first thing we saw was a man dressed like this standing against the wall praying.

immediately i was fascinated. fascinated by the tradition, the rich heritage that dates back thousands of years, the commitment to prayer, i couldn't stop watching . these are God's chosen people. the people he led out of egypt, the ones with whom he entrusted scriptures to and ultimately from which came Jesus the Messiah. paul talks in Romans 11 how we, as christians, are now grafted into this lineage by the work of Christ on the cross. he mentions that it is only the result of the jews rejecting Jesus that we have hope and the opportunity to be saved.

there was another young man who was in there and reading prayers from what they call a siddur. the siddur actually begins from deuteronomy 6:4-9 which starts by saying "hear o israel the Lord our God the Lord is one. love the Lord your God with all your heart, soul and might." i was convicted by there constancy in prayer and dedication to reading the scriptures, even in public, not caring what others thought or said.

that was my first observation; that they were passionate about praying and reading the siddur. the second was the unbelievable sense of community and family and grieving with others. other then the mother and father there have been at least a dozen if not more friends and family that have been here around the clock. friends of the family that have been sleeping on love seat couches curled up in a ball, people bringing boxes of food non-stop. most of them can't even go in to see the child so they hang out and wait. they are warm and friendly and have offered us some food of their entire table full of bagels and coffee and other items that someone brought in for them. (update: as i have been writing this over the past couple days i have come to find out that the little boy will not be surviving and now they are just waiting, and supporting the parents however they can. it breaks my heart for them and brings me to tears. as much as it is hard to see griffin go through this, i know he will come home with us soon and we will go back into normal routine. for that family life is now no longer the same).

one last observation; i was also saddened to know that although they are so regimented at what they do, they don't realize that salvation is not through works or checking things off your holy to do list. the bible is abundantly clear that in order to be saved you must confess with you mouth that Jesus is Lord and believe in your heart that God raised him from the dead Romans 10:9. they have such a deep understanding of God and his ways, but they do not believe that Jesus is Lord and that he died on a cross to forgive us of our sins. that is the pathway to heaven. nothing else. Jesus said it himself "I am the Way, the Truth, and the Life, no one comes to the Father except through me" John 14:6. it is by His grace that we are saved, we cannot earn it.

if you have made it this far in reading i am impressed. i went on some rambling tangents and preached a little at the end, but i haven't been able to stop thinking about this family and wanted to share some of the things that i have observed. no joke, as i just wrote the previous sentence another friend of theirs walked through the door carrying a bag of items.

love you guys

john

chest tube out

2009-06-19T07:31:00.003-05:00

well today they came by and took out his chest tube. which is a big deal because it will be much easier to hold him and comfort him if he gets upset. griffin has been the talk of the doctors and nurses with his excessive smiling and kicking. i am so thankful that he is a happy baby, it makes things a lot easier.

they also said that he will probably be able to go home tomorrow as long as he eats well today. so please pray that he eats well and does everything he needs so that he can come home where we will be able take care of him better.

below you'll see the picture of one our surgeons about to take out his chest tube. nobody knows how to really pronounce his name, even the nurses, so we call him dr chowy. he is incredibly nice and answers any questions you might have.

sleep, who needs it?

2009-06-18T22:17:00.004-05:00

well this afternoon griffin was finally free from his sedation meds. he was acting and responding like he normally does, charming all the nurses. amber was able to get him to smile and hold him which made us so happy, because it felt like normal. now we just want to take him home so we can take care of him, and hold him, and put him to bed in his crib. he has been awake most of the day which has caused him to be terribly irritable at times. trying to get him to sleep is really hard, he starts crying and clawing at everything within reach. he also gets very agitated which doesn't help either.

My parents came to visit but were unable to stay long because he ended up kicking the iv out of his foot and blood was all over and he wasn't happy. they will back in the morning to hopefully have some better time with us and him. this evening we had our great friends dan and grace stop by as well. they brought some much needed 'outside food.' you can only eat in the hospital cafeteria so many times.

finally griffin is asleep, so i guess i should rest while he is resting.

comments on our blog

2009-06-18T16:57:00.002-05:00

hey everyone i guess people haven't been able to post comments on our blog. and i was not aware of that until just now. i think i have fixed it so go ahead and comment away.

all you have to do is click on 'comments' below the post and it will say 'post a comment' click that and then write to your hearts content.

thanks.

a few pictures from this morning

2009-06-18T10:22:00.003-05:00

griffin was able to eat for the first time in 2 days! hooray! he downed 2 ounces in no time. the nurse said he did great because sometimes they have to really work with kids to eat again. griffin did not struggle with that. one thing i am looking forward to is to see him smile. i am still waiting for him to smile. he is normally a really happy baby and we can get him to smile almost all the time. however, since the surgery i haven't seen one smile. i will be sure to capture it on video or a picture when it happens.

quick update

2009-06-18T08:42:00.003-05:00

griffin is doing well this morning. he had a pretty quiet night. amber was able to go home and get some rest and i stuck around to be available in case anything happened. i was by his bed until 12AM and then the nursed convinced me i'd get better rest in the sleeping room down the hall. she was right. the surgeon came back and looked at griffin this morning and said he is looking great. the chest tube will stay in for another day but they will start weening him off the pain meds and the sedation meds and then start feeding him. we are just waiting to get word on how much fluids he is allowed to have before we start giving him some sugar water.

today my parents will be able to come and see griffin as well as maybe eli and eden, depending on how he is doing. that's all for now. just wanted to let you know what was happening.

psalm 118:13-14 says 'I was pushed hard, so that I was falling, but the Lord helped me. The Lord is my strength and my song; he has become my salvation.'

before and after

2009-06-17T21:29:00.003-05:00

this is the difference in griffin from before the surgery to after. sad.

recovery

2009-06-17T21:26:00.000-05:00

there has been a rush of emotions this afternoon. relief that it is over, sorrow watching him whimper in pain, anxiety knowing he is not completely out of the woods yet. griffin has had a tough time in recovery today. the surgery went so smoothly and it was done so fast. however he has had a tough time coming off of the anesthetics and adjusting to the pain medications. he will periodically wake up and cry because he is in pain. so we help move him around to a new position which is all we can do because we can't hold or feed him right now. the doctor said that he will have extremely bad headaches over the next 24 to 48 hours since all the blood vessels in his head have to readjust to flowing into an artery now. older kids who have been through this procedure have said that it feels like you have just been hit by a train. so griffin is trying to deal with what feels like being hit by a train.

the doctors and nurses here at Lutheran have been absolutely amazing at caring for us and for griffin and taking care of any need we may have. we are so thankful that God led us here. you can see some of our nurses below natalie and sylvia.

it has been a long day. please pray that griffin gets some sleep tonight so that i can get some sleep.

we are so thankful for all of you who were praying today for us and especially for griffin. we know that God moved through those prayers to get griffin to where he is now. thank you so much.

some pre-op pictures

2009-06-17T07:32:00.002-05:00

we had the opportunity to hold him and have some moments before they took him away. he did great. keep praying over the next hours for him, thank you. love all of you.

it's here

2009-06-17T00:30:00.003-05:00

i can't believe that it is finally here. it feels like we just left the hospital last week from when he was only two weeks old. it is such a weird feeling going back to the hospital to have him cut open again. there are a few positives, however, that we found out on monday, as we met with the surgeon's nurse. the big one is that even though he'll be on the heart lung machine they don't have to completely stop his heart. this is a plus because that can have any number of side effects or complications. the other positive was that we were told that the recovery was going to be shorter then what we were originally told. now it's hard ot get our hopes up that this will be the case, but they said he could be out of the hospital in 3-4 days. we were expecting anywhere between 5 days to 2 weeks.

it has been such blessing to us to have so many people supporting us and praying for griffin during this time. i am also so thankful for my parents who flew out from canada to help watch eli and eden. i can't say how much it means to me and i am blessed to have parents that are willing to drop everything and come. thanks mom and dad. And for amber's mom who has helped us so much to get ready for all of this. we are amazed at how much are parents love us. i guess once you become a parent you are always a parent!!!

now we will wait to watch how God works in and through this surgery and griffin's recovery. we are so thank that we get to live in the hope and love of our Lord and Savoir Jesus Christ. we often wonder how people without Christ would make it through a time like this. so much stress and pressure on them to think they are the only ones taking care of their child. we know that God has intrusted us with our children on this earth, but they are truely our Heavenly Father's. i don't know how you survive without that kind of hope. we will do our best to be vigilent parents, but we know that God is ultimately in control. Thank the Lord for that!!!

thank you all so much. we love you all.

rough day aka 'what is good vs what is best'

2009-06-15T19:51:00.004-05:00

this shot of griffin getting his chest x ray is when things were at there best. afterwards, is when he had to get his blood drawn. that is when things went down hill. they stuck the needle in the first time and he actually did pretty well but they couldn't find the vein and they began moving the needle around in his arm but couldn't get it. so they removed the first needle and then moved over to the other arm. this is when griffin thought 'hey what a minute i don't like this at all' (we were actually thinking the same thing). the screaming began and didn't stop for a while because they had four viles to fill and on the fourth the blood stopped flowing. they checked to see if it would be enough, it wasn't. so they came back and did a finger prick and filled a vile from his finger, drop by drop filling it up. needless to say griffin wasn't too thrilled this entire time. and meanwhile he left the biggest sweat stain on the flimsy paper they have on the doctors tables. hard to watch.

leaving today i said to amber that this was the closest analogy to how God deals with us i could think of. i think of it as 'What is Good vs What is Best.' as a parent i find it very hard to pin griffin down to a table and have him scream in my face with tears running down his cheeks. the worst part of it is that he doesn't understand at all why this is happening. only amber and i can see the bigger picture that he needs to endure this pain so that ultimately he can live. to griffin, what would be 'good' would be that he didn't have to get stuck with a needle three different times today, however i know it's not what's 'best'. good vs best. sure we could have opted out of taking him today and said we don't want him to have surgery because of the pain and it just wouldn't be 'good' for him. however it would not be what is 'best' for him. what is best, is that he has surgery and it provides him with the opportunity to develop and grow up to be a boy who runs around and plays instead of the other option. I feel like griffin a lot. screaming in the face of God with tears streaming down and i cannot understand why. it is because i don't see the big picture. that is why i am so thankful to trust in a sovereign God, who is in control, has a purpose and knows the big picture and what is not just good for me but what is best. thank you Lord.

griffin's surgery update

2009-06-13T09:52:00.001-05:00

i have decided to give a detailed description of griffin's upcoming surgery. which, by the way, i cannot believe is already next wednesday (that's June 17 for those of you keeping record at home). it seems as though it has snuck up on us. there are a lot of emotions and feelings that are rising as we look ahead to what the next few weeks will hold.

so here we go, in the plainest english possible. this surgery, first of all, is called a glenn shunt and is the second of three surgeries that griffin needs in order to have proper blood oxygenation. the doctors have said he will never have a 'normal' heart, but rather an adapted heart that will allow him to function as close to any other normal child would. let me take you back, here is a diagram of what a normal heart looks like and then the heart defect that griffin has which is a single ventricle with pulmonary atresia.

where you see the vessel connecting the aorta and the pulmonary artery is the tube (BT Shunt) they put in when he was a week old. for this next surgery they will clamp that off and then take the superior vena cava from the right atrium and connect it directly to the pulmonary artery. you can see it in this next picture even though the heart defect in the picture is slightly different from what griffin has.

i am guessing this more confusing then helpful, so don't worry about it to much. this is mostly for the curious ones out there that want to know exactly what is going to be happening. more importantly here is what i need you to pray for. he will go in early wednesday morning where they will prep him and sedate him and then cut open his chest. after they have done that they will put him on a heart lung bypass machine. this essentially stops his heart and lung function and runs his blood through a machine. the biggest scare in this surgery is that your natural pacemaker or the nerve endings which spur your heart to pump on it's own are in the right atrium. so pray that nothing gets damaged in this process because the last thing we need is his heart to not pump properly after this surgery. it is going to be much more intense then the first surgery and he is also much more aware then when he was a week old which makes it harder when he is coming out of surgery. pray that the surgeons would do everything properly and there would be no complications and also that he recovers well. he is probably going to be in some significant pain and not sure what jsut happened to him. pray that the presence of God surrounds him when we can't hold him ourselves.

we covet your prayers over the next few weeks. we recognize that he is God's child and we are stewards of him taking care of him and raising him in the best way possible. it is comforting knowing that God has him in his arms and we can trust that He is the one who is in complete control and that He works all things out for good.

if you have questions feel free to write them in the comments and i'll get back to them as soon as i can. we will keep everyone updated throughout the whole process.

thanks

John and Amber

prayer request

2009-06-09T13:58:00.003-05:00

so here is the situation, we are beginning to outgrow our ford explorer. with three car seats in a row in the back it is time to get a larger vehicle. here's the catch, we actually need two vehicles; one so that amber can drive eli to and from school, run errands, and quite frankly just be able to get out of the house and the second for me so that i can go to work.

here is where we need you to pray with/for us. we need to sell the explorer for how much we owe on it and then find two vehicles that are cheap and get financed for them. this is where it gets sticky (you may have seen this on facebook recently as well) i applied for two auto loans from the credit union and got rejected. so i am trying to get all this figured out before griffin's surgery but having trouble seeing how that is going to happen.

thanks for praying

ps. if you have a spare car laying around that you feel you'd like to give us we just might accept. ha ha (i'm kidding.....but if you do, we're open to the idea....just sayin)

words from our blog

2009-06-01T10:05:00.002-05:00

i saw this website called wordle.net and they compile words from anything. this is a compilation of all the words from our updates on griffin over the past four months. it is aesthetically pleasing to my eyes.

surgery update

2009-05-30T08:25:00.006-05:00

we had originally told everyone that griffin's surgery was scheduled for June 10th, which in part was true because that's what we were told. However, when we spoke with the surgeon's nurse yesterday we found out that the surgeon doesn't do surgeries at Lutheran General on the 10th only the 3rd or the 17th.

so here is the situation we are presented with, there is a girl who is scheduled for surgery on the 3rd however she is sick and possibly won't have it done. if she doesn't, then we can be scheduled for the 3rd but we won't know for sure until monday. if it doesn't work out to do it next wednesday then we will be slotted for the 17th which is two and half weeks away. the tough part is that my parents planned their trip from canada around the original scheduled date so they're going to have to change their flight in order to be around to help.

either way we need your prayers as we go into this next couple of weeks. the cardiac catheterization from thursday showed that everything was developed and as it needed to be in order to proceed with surgery, which we are very thankful for. the outlook is good from the doctors as far as griffin being ready and also his ability to recover quickly. yesterday you would have never known he had been in the hospital the whole day before.

this is getting be a lengthy post so i'll wrap it up. there is ONE LAST THING we need prayer for, it turns out girffin has an ingrown toenail that is infected. we had to take him in yesterday and the pediatrician gave him some antibiotics so that it would clear up before surgery. if it's not one thing it's another.

we are so thankful to trust in a God who is in control and has griffin in his hands especially when we can't hold him. i think we could write a book from all the things God has taught us through this.

we'll keep you posted on what's happening.

the hingers

Our ideal dog

2009-05-29T18:43:00.000-05:00

We ran into this guy on our walk tonight. He escaped from his owner who we ran into a few minutes later.

If we could have a dog, it would one of these or a bulldog.
Sent from my Verizon Wireless BlackBerry

Griffin today

2009-05-28T19:07:00.000-05:00

Sent from my Verizon Wireless BlackBerry

trusting God in all things

2009-05-27T17:04:00.005-05:00

well it's been a bit of an emotional week here in our house. it is largely due to griffin's upcoming surgery. the surgery isn't until june 10th, however we have had to get a bunch of things done beforehand. things like labs and his cardiac catheter. on tuesday we took him in for his labs and had to pin him to the table as they stuck him with the needle to draw a couple viles of blood. i'm not sure what was harder, having to watch him in pain or being the one holding him there and putting him through it. nevertheless his pleading eyes were difficult to watch as he turned multiple shades of purple all while crying to make it stop.

right now amber is feeding him the last food he will get until after the cardiac catheter. if you're wondering what the cardiac catheter is, you can read more about it here. we'll be leaving at six in the morning to drive him up to Lutheran General where they will give him an IV and put him under to do the procedure. it takes about 2-3 hours for the procedure and then a while after that for griffin to come off the drugs. the biggest things they are looking for tomorrow is that his pulmonary arteries are big enought to perform the next surgery and also that the pressures in his heart are low enough to proceed. they can also make the call and decide if surgery needs to be done immediately or if it can wait until the scheduled june 10th date.

as you think of us please pray for griffin to be ok as he has to undergo pain as well as for amber and i to remain strong and to rest in the peace and comfort that only God provides Phil 4:7. also pray that all things will be well in order to proceed as planned for the surgery in two weeks.

i think the toughest part is that this is just the beginning, the road continues on in the upcoming weeks. thank you for all your prayers and encouragement and support. God has been more faithful and evident at this time in our life then ever before.

the hingers

my wonderful litle girl

2009-05-23T14:27:00.004-05:00

i wanted to share this video with you. Eden thought she would get out of bed and get into some stuff. the result made me both angry and giggle.

eli at fine arts day

2009-05-22T00:47:00.008-05:00

eli was rocking it out today at fine arts day. here is a little mash up of everything they did, take close note of his sweet clapping and waving near the end.

Eden's preferred choice of sleeping arrangements

2009-05-18T10:25:00.001-05:00

Went in to check on the kids before we went to bed, and Eden decided the floor would be more comfortable.

before and after shot of the kitchen

2009-05-15T21:15:00.004-05:00

the kitchen is about 98% done. getting a pantry made by a friend and also putting some crown on the top of the cabinets above the sink. other than that it is pretty close to being done. here are two shots one of the first day we walked through and one from this evening right after i put the cabinet doors on.

Enjoy

cute little video of eden

2009-05-15T21:11:00.003-05:00

eden is a proponent of good enunciation

john maxwell is full of wisdom

2009-05-13T09:57:00.003-05:00

very thought provoking interview with John Maxwell

Eli doing the pledge

2009-05-12T14:35:00.002-05:00

eli was student of the day today and when i asked what he did he said he 'got to do the flag.' so i asked what do you do with the flag and here was his response.

upcoming surgery for griffin

2009-05-12T11:14:00.003-05:00

hey everyone just wanted to let you know how griffin's appointment went yesterday. well his blood saturation numbers came back a little lower this time. which, combined with his recent color, prompted the doctor to push his next surgery up a month or so. he was originally scheduled to have his 2nd surgery at the end of July but now they are talking about June 10th being the potential surgery date.

the toughest part is watching him every minute trying not to stress about his color or thinking 'do we need to take him in.' please pray for Griffin to stay strong through this month and also keep amber and i in your prayers for strength through this time. the stress level at times feels like it's through the roof.

expectations are a funny thing. when you think things are going to be a certain way and they turn out differently it can really throw you off and mess with your mind. it's because of that we need to rely on God's wisdom and not our own. not the easiest of tasks but the most important.

it almost feels like we're jumping back into the pool to tread water for a few hours after having just gotten out. love you guys and thanks again for all your support and love.

2009-05-06T13:36:00.001-05:00

Testing, I just found out that I can update the Blog from my phone just by texting it in. So this is a trial to see what it looks like. Here's to more updates

photo op

2009-05-06T12:28:00.002-05:00

A shot of our two youngest watching a little Swiss Family Robinson. Two things, look at how much Eden and Griffin look alike and look how big Griffin is getting.

Still working...

2009-04-14T08:56:00.003-05:00

Well I just thought I would add some pictures of Griffin and of the house. Griffin is doing great. My sister came to help me get things for the house and to meet Griffin. Things with the house are going well. We are pretty over painting. The carpet is in and so is the hard wood floors. Now we just have to work on the bathrooms, paint the door, paint the cabinet doors, move stuff in, and well lots of other little things. uhh...the list is endless. But we are so thankful for everyone's help along the way. Can't wait to show you finished pictures!!!

2009-04-08T20:09:00.004-05:00

hey everyone, just wanted to give a brief update on griffin. he has been doing great; gaining weight sleeping well, doing all that babies do. the only thing i'd ask you to pray for is his pulmonary arteries. at this point they aren't as big as they should be. they need to be a certain size in order to go ahead with the next surgery which Lord willing will be sometime this summer. your prayers are coveted.

in his grace

operation 20 in 30: day 1

2009-03-30T11:04:00.004-05:00

with summer quickly approaching there are a lot of things to be excited about: warm weather, shorts, walking outside, grilling etc. there is a small drawback though, with warm weather comes the need to do away with zip-up jackets and sweaters that hide my bulging love handles. This brings me to operation 20 in 30, my goal to drop 20 pounds in the next 30 days.

in a sad reality i stepped on the scale this morning and the numbers screamed back a glaring 250. this wouldn't be so bad if i was the starting tight end for the bears or in the heavyweight division for mixed martial arts. however with none of those being the case and my pants and shirts which are no longer comfortable (or wearable) i am forced to take serious action.

i have yet to decide the course of action to accomplish this. i may take advice from this dad and how he stays in shape or i might try this option. if you have any ideas feel free to pass them on.

actually i am hoping to grow in discipline and self control over the next thirty days and have it touch more aspects of my life then just food. i am thankful to the grace of God which will give me the strength to do this.

so if you see me eating some sort of crap that will only make me fatter and not thinner feel free to approach me and hit me in the face close fisted. i won't get upset with you, trust me. i need the accountability.

i will keep you posted. day 1 - 250 lbs.

working on our first house

2009-03-26T20:26:00.006-05:00

Home Renovations

something humorous

2009-03-23T14:23:00.004-05:00

for everything in life, there is someone who is the better at it that anyone else.

painting party

2009-03-23T14:18:00.002-05:00

we will be needing help to paint our house over the next couple of days. if you are available, by all means byopb (bring your own paint brush). it will be a time full of good food, good tunes and good times. be there.

twitter

2009-03-22T11:59:00.001-05:00

i am quite new to twitter and it's social networking ways. mostly i am trying to stay on the up and up of what's cool, however after watching this video i am having second thoughts.

my hero

2009-03-22T11:45:00.001-05:00

my son, born on the 20th of january 2009. one heart surgery down, two more to go.

learning satisfaction

2009-03-22T11:32:00.001-05:00

it never seems like we can be satisfied. we can have everything yet remain unhappy. why is that? when will i be truly content? i like what louis ck has to say about it.

2009-03-05T20:42:00.002-06:00

Wow so it has been about a month since we brought Griffin home from the hospital. There have been good days and there have been bad days. Most of the bad days came in the beginning when he did a lot of crying which was hard to handle. But little by little he adjusted to life at home and we have gotten to know him better.

Oh little Griffin is such a sweet blessing. Right now he is doing really well. We have taken him to the doctor quite a few times and each time they are pleasantly surprised with how well he is doing. He is gaining weight like a champion which is awesome. They keep telling us that "heart babies" normally don't gain weight easily, but he has already gained more than 3 pounds in this last month!!! We are so proud of him. We are so thankful that God has counted us worthy to be his mommy and daddy.

Now we are just at the point of waiting for his next surgery, sometime this summer. I was just thinking about it today and it was hard. I know that with this next surgery and the one to follow he will be able to understand things more and more. The thing I dread the most is after surgery when he will look at me with those hurting eyes, saying mommy why are you letting them hurt me!! It brings tears to my eyes just thinking about it. But then I remember that in my helplessness God will be right there holding my sweet Griffin when I can't. God has been so good to us and I know that he loves my baby more than I could ever.

Each day I am working on handing control over to the Lord. It is easy to get consumed with worry and fear over the littlest things, which is exactly what God is working with me on. I want to get to the point where I can find true rest in God, not in what others reassuring me with or the opinions of doctors but my faith and hope in my lord and saviour Jesus Christ. He is in control and I want to keep it that way. My how much my little Griffin has already taught me and he has only been a live for a month and a half.

Oh and another note, we just bought a house!!! God is so good to us. We have some fixing up to do so we won't move in until probably the end of the month, but we are so excited. Please pray that we can have wisdom on what needs to be done and then finding the balance in time. It is hard to get a lot done when we don't get a ton of sleep at night--the joys of the newborn!!

We will put up pictures soon- well whenever I can figure out how to do it!! Sorry it had been so long since an update, thanks for all the prayers.

We love you all!!

Sleepless nights...

2009-02-08T11:05:00.002-06:00

Sorry it has taken us so long to update on things. Since bringing Griffin home this has honestly been my only free moment.

Last Wed. I was so excited to bring him home, but I am not going to lie I was filled with some fear and nervousness thinking that we were going to be by ourselves. You go from having him hooked up to monitors and nurses watching him constantly to putting him in a car seat and taking him home. By the time we got him home the stress level was pretty high. In the NICU he was eating every four hours and then sleeping almost all of those four hours in between. But like any baby when you take them home somehow they never sleep like they do at the hospital. Even though he was two weeks old it was like he was a true newborn because he had only been eating for a few days.

The first night was tough. He would eat and then just cry and we would have no idea why. The crying is hard enough with a new baby, but when you have the added looking to see if he is turning blue it can set you over the edge!!! And to be honest there were a few times where it did.

Each day though it has been easier to look at him just as a normal baby and not always looking to see if he is breathing or turning blue. The days and nights have still been long and he can still get pretty fussy at times. But I guess I would be fussy if every other time someone touched me it meant pain was coming. So I think bit by bit he is getting use to the fact that when we mess with him it is just to change his diaper or his clothes. Things are still intense at times and I have to be careful not to let my stress levels get to high, but hopefully each day it will be less and less.

Please pray that we can get some sleep at some point. And John goes back to work tomorrow, so please pray for me, there might be some tears. We are so thankful for how God has worked in these past few weeks, but know that we have a long road ahead. But right now I am just trying to take it day by day and there are times I am just trying to make it hour by hour!!!

Thank you to all of you have been praying I can't tell you how much it has meant and how much we have needed it!!! We will try to get some pictures up of him at home sometime soon.

love you all.

A wonderful day!

2009-02-04T22:55:00.005-06:00

Well today was a day we never thought would come. Especially as we sat in the NICU just two weeks ago awaiting the diagnosis of what was wrong with Griffin. It's hard to believe that it has only been two weeks; it feels more like two months. Although it has felt long my heart is burdened for the other children that are still there and were there before Griffin ever arrived on the scene.

If one thing can be said about this whole experience it's that you gain perspective and you gain it fast. You suddenly realize that all the things you thought mattered, don't, and all the things you're stressing about really don't need to be stressed over. The most important things are my relationship with Jesus Christ and the hope I have in him, and my family. Everything else fades away. I am not sure if we mentioned this earlier but we were right in the middle of purchasing our first house when Amber was induced to have Griffin. Leading up to the birth we were looking into all the things we could do to try and fix up the house and make it our own. We really spent too much time on the internet researching, but we were excited. Since everything has happened, the house has become the furthest thing from our minds. It just doesn't seem as important. Like I said before, suddenly I gained perspective. Material things do not matter, they will fade, and fall apart, and rust, and rot. Psalm 20: 6-8 has been an encouragement to us through this time, it says "Now I know that the Lord saves his anointed; he will answer him from his holy heaven with the saving might of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God. They collapse and fall, but we rise and stand upright." Our trust is in the Lord.

Today we were able to bring Griffin home and what a blessing that has been. Just to see him without wires and monitors hooked up is unbelievable. I want to say thank you to all who have been praying with us and supporting us. There have been so many who have brought meals and offered to watch the kids, and even offered to sit with Griffin when Amber and I were sick (unfortunately the NICU is really strict on who can sit in there so they wouldn't have let that last one slide). Our hearts have been overwhelmed with the amazing amount of love and support given to us in the midst of this trial. So, from the bottom of our hearts thank you to all of you. I have put up some pictures of the past couple days and also him coming home, I hope you enjoy.

We are through the first hoop, but the journey is far from over. Stay tuned as we progress to the next surgery sometime this summer.

Some Exciting Things

2009-01-31T21:38:00.009-06:00

Hey Everybody

Sorry we haven't posted for a while there has been a lot happening. Since Griffin had his surgery on Wednesday, Amber let you know about his difficulty after the surgery and how he kept both us and the nurses on our toes. Well since those initial moments of stabilizing after surgery he has leveled out significantly and steadily improved.

Yesterday, which would have been Friday, they removed the tube that went down his throat and the ventilator that went along with it, which for us was so exciting because it was the first time since he was taken to the NICU that we have seen him without it. Here is a picture of what he looks like without it. He has what are called cannuals in his nose still helping him at this point.

It was also exciting because we were able to hear his little noises and grunts for the first time since he was he born. The doctors and nurses have been so encouraging in telling us that he is doing really well.

Now today they removed even more things and he is progressing very well. They were able to

remove the tubes from his nose and his chest tube, also they are continually weening him off of his medications and fluids. Also a huge excitement was that he was able to eat some real food, not just IV fluids and nutrients. Here are some more pictures of him from today. (you can see the incision on his chest)

It has been just a huge relief to keep hearing that he is doing so well and that he is strong. We are looking forward to hopefully bringing him home this week. We are just praying that there are no major setbacks from here on out.

The tough part is knowing what the future holds. This isn't the end, we have made it over the first big hurdle and now face two more surgeries over the next couple of years. I think we aren't too afraid of what the future holds right now for two reasons. First, we are just relishing in the fact that he is doing well and we will have him home soon, so there is no point in worrying about what tomorrow will bring for today has enough troubles of it's own. Second, we have come to trust God so much throughout this experience that we can truly do what James 1:2 says and "count it pure joy when (not if) trials come." Because we know that God is in control of it all and also that the trials themselves bring endurance and strengthen our faith.

My prayers have centered only on a couple things over this past couple of weeks. One that Griffin would be healed and the other that God would look beautiful, and wonderful, and compassionate, and glorious through this situation. Many people ask "why does God let the innocent suffer?" or "how could God let this happen?" I hope to show that God is infinitely loving, and infinitely wise and that nothing slips past Him, and even though I don't fully understand why this happened to us and to Griffin I can say the words of the great hymn "It is Well With My Soul."

One last thing and then I need to go to sleep. Please pray for Amber, she is now starting to feel sick. Pray she feels better because soon we will able to hold Griffin and I want her to be able to hold him and feed him. Pray she doesn't get sick, thank you.

On the road of recovery...

2009-01-29T23:18:00.003-06:00

Last night we called the hospital quite a bit just to make sure he was stable. They told us that his numbers had dropped twice, but each time because either he was come out of being sedated or because he had some secretions in his ventilation tube. I never want to hear that his numbers went down, but at least when they did there was a reason behind it.

I feel like last night was one of those nights where I had to regroup. I think I just started to break because of the stress and all the emotions from the day. John and I had a really good time of praying and giving everything back to God. It is hard because I feel like I can get lost in the emotions and the lies satan tries to feed me. There were just so many feelings of guilt for not always being at the hospital with him or not being with my kids at home or going to lunch and feeling normal for a few minutes while my son was laying in the hospital alone. John helped me to realize those are not feelings from God, but all lies that satan wants me to believe. So just having a time of prayer really helped to bring me back to the truths that God has for me. I am thankful that God is so patient with me. Now I am able to rest in the peace of who God is and the love He has for me.

Speaking of God's love, we are so thankful that today was not filled with any down's. Griffin was stable all day and they continue to ween him off his breathing machine and some of the other drips he is on. He is still a bit on the puffy side from all the fluids they filled him with, but little by little he is looking more normal. Grandma and Grandpa Hinger were able to come see him and hang out with us for a little while. They have been amazing at helping us with our other kids and watching them all the time (thank you guys!). As for Griffin, the nurses said that tomorrow they hope to take his chest tube out and possibly even take his ventilator out. Wow!!! It would be amazing if they could do all those things. I try not to get my hopes up too much because you just never know what the doctors are going to want. Another one of those times I have to trust that it is not my timing but Gods. We just look at him all the time and are so proud that he is our son and we just love him so much even though we don't get to hold him or be with him all the time.

Right now we are just praying that he would continue to recovery and that there would be no set backs. We are also praying for boldness. John and I were talking about it today, we don't want to leave the hospital without our nurses knowing our love for Jesus. It is so hard because a lot of the time I am at the hospital I am always asking questions or just asking if they think he is going to be ok. Not that, that isn't normal, but I want to be able to walk in a confidence that it doesn't rest in what they or the doctors tell me, but in God alone. Not going to lie, not always easy when I am sitting next to my son with all these machines and tubes that I have no idea what they are doing. But none the less, we just want to share with them where our hope lies.

Thank you all for praying and the encouragement. We love you all.

Wow...

2009-01-28T18:23:00.002-06:00

I can't even to begin to express the ups and downs of emotion that I felt today. When we got to the hospital I was filled with excitement and then on the other hand I was trying to fight the fear that wanted to take over. After seeing him for a while and having one of our Pastor's from church (Mike) come and pray for him, they came to take him away. It was horrible to think it would be the last time I would ever see my little baby with no scars on his body. But I could only live in the emotion for a few seconds because I knew that this scar brings us one step closer to him living a normal life. I am not going to lie, there were some tears as they wheeled him out of his room and only an empty space where his bed used to be.

We moved down to the waiting room to wait for news from the surgeons nurse. About an hour later she came down and told us that they had started the surgery and that things were going well. Again we waited for about another hour and she came back and told us that they were just closing him up and that things went really well. We were so happy. Then we headed up to the NICU waiting room until he was stable.

We waited with my mom and our friends Dan and Grace. There was a joy that was felt in the room. After a while John and I wanted to go and check and see how things were going. Little did I know that the scariest moments of my life laid ahead. When we entered the room the doctor was there along with a bunch of other nurses around him. Griffin looked really puffy (which we were expecting) and then we looked at his numbers on the monitors. The whole time he has been in the hospital I have tried to avoid obsessing over the numbers, even to the point where John would position my chair so that I couldn't see the numbers!!! Anyways, we looked at the monitors and the numbers were horrible. The main number that was bad was his blood oxygen level. Normally they want him between 75 and 85 his numbers were going between 50 and 60. There were times it would even dip bellow into the 40's. The problem was that they just weren't going up. They would go up for a min. and then go right back down. This was happening for about a half an hour. We just sat and watched as the doctors tried to figure out what to do. You know it is bad when no one is saying anything and they just keep trying different things.

I can't tell you how hard John and I were praying. I just kept my hand over my face and prayed like never before, pleading with God to save my son. Finally after they added a new machine to the mix his numbers started to go up!!! It was the scariest half hour of my life. The whole time I really felt a peace that Griffin was going to be ok, but I also knew that there were going to be some ups and downs in his recovery. I am hoping this is the only down of his recovery. I don't know if I can make it through another one. Through this whole thing I have never felt the hand of God so close to me in my life. At that moment I felt so helpless, but in that helplessness it showed me that God is the only one who is in control. As a mom the thought of not being able to help my child has been one of my biggest fears of my life. There was nothing I could do!!! But God did something, this is exactly why I cannot hold my children so tight. No matter how much I think I am in control of taking care of my children it is God who is really in control.

Well I feel like I have just unloaded a lot of thoughts and emotions. Sorry if it doesn't make much sense, as I said before, not much is making sense. The only thing that is making sense is that God is in control not me, I can't believe that it has taken my son's life hanging in the balance for me to truly realize that.

Thank you so much for your prayers all day. We would still really appreciate your prayers during this recovery time. He is doing well right now and we pray that it would continue. Also pray for John, he is doing better (thank the Lord, I don't know if I could have handled it alone today), but he is still not full speed.

love you all.

Surgery is Finished

2009-01-28T10:24:00.002-06:00

I am excited to announce that Griffin has made it through surgery with no complications. We are waiting for them to get him settled back in the NICU before we can go se him. But it's really exciting that everything went well. Thank you so much for all of you who were praying.

I will post some pre-op and post-op pictures soon.

In surgery right now

2009-01-28T08:22:00.002-06:00

Hey everyone,

Just wanted to let you know that Griffin is in surgery right now as I write this. The nurse has come out to tell us that he is doing well and they have already made the incision on his chest. Next they will attach his subclavian artery to his pulmonary artery with a gore-tex tube which will help him oxygenate his blood without a dependancy on medications. The surgery should be completed within the next hour to hour and a half.

Please pray there are no complications and that he recovers quickly. Thank you.

Surgery...

2009-01-27T12:53:00.004-06:00

We just wanted to let everyone know that Griffin's surgery has been scheduled for 7 o'clock tomorrow morning. The surgery comes with such mixed emotions. In one sense we are excited to have so that we can start on the road to recovery, but then on the other hand the thought of my baby having to be cut open devastates me. It is hard to even rap my mind around all the emotions that flood my head constantly. The only thing that I can stand firm on is knowing that God is truly in control and that he loves my baby more than I do and that even through all the pain and tears God has a perfect plan. I think that has been the only way I have been able to make it through is to know that God was the one who knitted his tiny heart together and He knew what was in store for him. And that God knew this was the best possible plan for his life and ours. God is faithful no matter what, that is the only thing that holds me up.

We are so thankful that Griffin has been stable these past few days. It is just so hard to see him with all the tubes. He also scowls and shakes a lot from the medicine that is saving his life. The nurses keep saying that he isn't in pain he is just miserable, wow to a mom miserable seems like pain. uhh... all the emotions set me over the edge at times.

Please pray as John is still not feeling much better. It has been hard on the both of us. John is so frustrated not being able to take care of us and not being able to see Griffin. And then for me it is just hard feeling all the weight of it myself. Today I have not being feeling the greatest either. My mom is going to go sit with Griffin for a few hours in my place. I can't tell you how hard that decision was for me. The thought of not being there as a mom pretty much shatters my heart. But I know that if I were to actually get sick I wouldn't be able to be there for tomorrow or the recovery afterwards. Uhhh...I feel like my head is spinning with emotions so it is hard to keep or express a clear thought. I apologize if this is scattered or doesn't make much sense, not a lot is making sense these days.

Thanks again for your prayers and encouragement. We will let you know after the surgery is all over. Please pray that John will be well enough to go see him before hand.

Love you all.

thanks Emily for setting this blog up for us!!!!

My Frustrations His Faithfulness

2009-01-26T14:29:00.001-06:00

Not sure if everyone has heard but Griffin's right lung has totally expanded and the atalectisis (partially collapsed lung) is completely cleared up. This is a huge praise report and a testimony of God's faithfulness. Now he is ready for surgery and we are still waiting to find out when the surgery is going to be. Please pray that we will get that scheduled soon so that we can continue down this road.

As most of you have heard i got really sick Saturday night. Fever, sore throat, chills, aching all over, etc. all your typical cold/flu symptoms. I am still under the weather and unable to go to the hospital to visit Griffin. This has been the most difficult part of this whole process, not being able to be by his side. As any parent would, my desire is to be by his side and never leave. Having the nurse tell me to "stay away" brought an instant flood of tears and a feeling of complete helplessness. It has caused me to look to the Lord even more so and trust in him. I have had a realization that ultimately Christ is the centerpiece of our family and not me. I am completely dependent on Him. It has also been very difficult for Amber being the lone support for him and not having me there. Please lift her up in your prayers that she may have strength and peace while I am recovering.

It has been a huge blessing to see how many people have written and said that they have been praying. Even though I can't write back to each of you individually please know that with every note comes great encouragement for both Amber and I.

Isaiah 41:10,13 says "fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand....For I, the Lord your God, hold your right hand; it is I who say to you, 'Fear not, I am the one who helps you.'"

I am so thankful that I can have hope in a God who is bigger then any situation we face.

thank you all

John is Sick

2009-01-25T12:50:00.001-06:00

Well I got some good news this morning and some bad. I woke up to a sick husband this morning. We are calling the doctor to see if we can get some antibiotics because we think John has strep throat. Uhhh...I am not going to lie the thought of John not being at the hospital with me is hard to swallow. I know that I need to God's strength because I can't bare this weight alone. I just keep praying that John can start to see an improvement in the next day before we have surgery. Please pray that John will make a quick recovery as him being sick is really hard for both of us. And that God would give me strength to take on the day. I will be going with my mom to the hospital today and I just pray that there would be nothing major today. Also please pray that I can stay healthy.

With Griffin there was so great news. His chest x-ray came back totally clear. Thank you Jesus. I think God knew how much I could handle. So right now he is really stable. We should find out tomorrow morning when they are thinking of scheduling his surgery. We thought it might be Mon or Tues. but our nurses keep telling us they think it will be more like Wed. Now we just need to keep him healthy until then. It is hard because my first thought is I just want to rush the surgery as soon as possible, but then I have to bring myself back and know that God has the perfect day for him already mapped out. I have to rest in God's will and timing. I know that He loves Griffin so much more than I do. So please continue to pray that he would stay healthy and that surgery will come soon.

Thanks for all the encouragement and all the prayers. I can't tell you how much it means to us to know that people are praying for our sweet little baby.

Love you all.

Please Pray...

2009-01-25T03:03:00.002-06:00

Things have been stable for Griffin this past day so we have been very thankful for that. He is getting an x-ray on his lung tomorrow morning and we need it to come back clear. All the nurses seem to think that it sounds really good and should come back clear, but we just don't know. We need it to be clear so that it doesn't keep us from getting his surgery.

Also please pray for John he is feeling as though he is starting to get sick. His throat is really soar and he is starting to get stuffed up. Uhhh.... I don't know if I can handle the thought of John not being able to come to the hospital and he would be heartbroken if he couldn't come see Griffin. We have given him tons of things to take tonight before he went to bed and we just pray that God would heal his body by the morning.

I know that God is bigger than this both these situations and that is pretty much the only way I am handling them. To leave the hospital is almost unbearable but I know that Griffin is resting in God's arms. We just love him so much and can't wait for the day that we can hold him and bring him home. I just keep praying that i will remain faithful and put my trust and hope in him.

thank you to all that have been praying for our sweet baby boy. We will trying to keep updating as much as possible.

We love you all.

Update on Griffin

2009-01-23T18:54:00.003-06:00

I wanted to say thank you to all who expressed your love and prayers for us and for Griffin. I was journaling in Griffin's baby book and documenting everything up to date and thought I would type it out so that everyone could have some some insight on how he is doing and what exactly is wrong. It is pretty meaty with medical terms but it helps explain what he is going through and keep in mind I was writing it as though he will read it some day.

"...when you were born there no problems or complications, you came out quickly and began screaming as any other child would. You had a nice head of hair and, according to the nurses, looked a lot like me (i hope that's a good thing). Mom and I were excited and in awe of God's grace as he gave you to us. Over the next 24 hours things took a turn for the worse, you began looking very blueish and purpley (not really words but who cares). They (the nurses and doctors) said it was a result of bruising from coming out so fast, and also circulation, which in infants it is sometimes common for their limbs to be slightly discolored as the blood stays closer to the vital organs. They gave us the all clear to go home after you were 24 hours old, but thankfully mommy didn't want to leave and kept asking about your coloring. The nurse said she would check you blood oxygen levels so we could all be at ease and just go home. When she checked it, however, it was very low, less than 50, when it's supposed to be around 95-100. Immediately they took you to the NICU and put you on 100% oxygen to raise your numbers up, but it didn't work right away. This made the doctor think it was either a lung or heart problem. After some tests they felt it wasn't the lungs but the heart. The doctor quickly diagnosed that your heart wasn't working properly to get de-oxygenated blood to the lungs. This meant your body was circulating dirty or 'blue' blood which is why your color was so blue. Thankfully he knew of a way to get blood to your lungs so they could do their job of oxygenating. It was through a little duct or tube called the Patent Ductus Arteriosus (PDA) it's a natural tube that joins your aorta and pulmonary artery and is utilized in utero when you don't use your lungs to receive oxygenated blood. When you're born that duct is still wide open and it naturally begins to close as the lungs take over, which explains why it was a gradual process of you getting worse after you were born. What the doctor did was give you some medicine (it's called prostaglandin for all you medical buffs) which helped to keep the PDA open allowing some of your dirty blood to get to the lungs and become oxygenated. This was great because it helped stabilized your numbers and you were pink again. However this medicine has a known side effect of causing you to stop breathing. So what they did was put a tube down your throat and hooked you up to a respiratory machine which helped maintain minimum amount of breathes per minute. So far you have been able to breath over the machine and have not needed it to make you breathe but it has been a huge help. After being stabilized we had to transfer to another hospital where there was a well known cardiologist that would be able to look at an ultrasound of the heart (echocardiogram) to determine what exactly was wrong with your heart. What he explained to us was that you had a frog heart where you only have three chambers instead of four. Your right and left atriums (the top two chambers) were perfectly fine but the right and left ventricles were combined into one which is called a ventricular septal defect. On top of that you have a pulmonary atresia which means your pulmonary artery is not connected or is blocked form the right ventricle....'

we now take a short break for Anatomy class.

Just as a little lesson as to how the heartworks. Blue, or de-oxygenated, blood first comes to the right atrium via the superior (top) vena cava and the inferior (bottom) vena cava. Once it's in the right atrium it moves to the right ventricle, when your heart beats it pumps the blue blood from your right ventricle to your pulmonary artery sending it directly to the lungs. Once the lungs oxygenate the blood it is sent back to the left atrium. From there it is sent to the left ventricle which when your heart beats pumps clean or 'red' blood through the aorta to the body.

'...since your ventricles are combined and your pulmonary artery was blocked your blood would mix in the ventricles and nothing would go to the lungs and all would go to the body via the aorta. This is a problem because all your doing is circulating dirty blood which causes every organ to suffer and eventually die unless this problem is fixed.So how do we fix it? Well you can't just go into the heart and create a division between the ventricles because that division called the septum is actually muscle which contracts and pushes every time your heart beats and there is no material that can mimic that. So what will happen is you will go through three heart surgeries; the first, called a BT Shunt, will be in the next few days, the second called a Glenn Shunt will be when you are 3-6 months old and the last called a Fontan will be when you are 2-4 years old. The first will be a surgery that will go through your armpit and copy the PDA and allow a mixture of blood to get into the pulmonary artery and sending it to the lungs. This will only last for a short time because they are going to use a gore-tex tube (yes, like a really expensive ski jacket) to attach the subclavian (the main artery to the head and arms) to the pulmonary artery (the one that goes to the lungs) and it will not grow as you grow which is why you'll have additional surgeries. The second two will be open heart surgeries that will first attach the superior vena cava to your pulmonary artery and the inferior vena cava to your pulmonary artery. This will completely separate the blue blood and red blood so that it won't have to mix to try and get to the lungs. Once the third surgery is done you should be able to live a normal life only needing a few long term medications. What i really need is a diagram to show you what this all means but i don't have that right now and maybe i can show you later...."

As I said before, thank you for all of you who have been praying. It means the world to us. God has been very faithful to us in the midst of this emotional time. I will leave you with the verses that have brought us comfort in this time

Psalm 139:13-14 For you formed my inward parts;you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.Wonderful are your works;my soul knows it very well.

Colossians 1:16-17 For by him (Jesus Christ) all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.

What is so encouraging is that God was the one knitting Griffin together in Amber's womb. This isn't a surprise to him, he is not saying 'oh shoot!' or 'oops!' he is saying 'I have created Griffin out of love and I have a purpose and a plan for him.' That is the only way we can have hope in this time as we watch his face grimace in pain and see him hooked up to so many IVs and machines. My prayer is that God looks beautiful in the midst of this, and that i can be alight and encouragement to those around us in the NICU who are going through equally if not more traumatic situations.Please continue to pray for safety for his upcoming surgeries. I will find out today when exactly they will be.

God Bless,