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.