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.