A Week at Home

Thursday, June 16, 2011

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

Sunday, June 12, 2011

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...

Saturday, June 11, 2011

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

Wednesday, June 8, 2011

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

Tuesday, June 7, 2011

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...

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

Monday, June 6, 2011

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

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

Sunday, June 5, 2011

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

Friday, June 3, 2011

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

Thursday, June 2, 2011

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

Wednesday, June 1, 2011

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...

Tuesday, May 31, 2011

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

Monday, May 30, 2011

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

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

Sunday, May 29, 2011

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

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!

Wednesday, April 13, 2011

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

Tuesday, April 12, 2011

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

Monday, April 11, 2011

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

Sunday, April 10, 2011

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

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

Saturday, April 9, 2011

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

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

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

Pray that everything moves along quickly.

Thank you.

Video Update

Friday, April 8, 2011

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

Reflections

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

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

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

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

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

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

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

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

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

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

Griffin Update

amber giving him his first sips of water.

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

holding him for the first time

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

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

surgery recap

Wednesday, April 6, 2011

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

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

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

Getting Ready...

Monday, April 4, 2011

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

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

The plan...

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

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

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

Our sweet Griffin.

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

Round 3 of Surgery

Thursday, February 24, 2011

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

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

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