Make-a-Wish and Disney World

One week from today we have the awesome privilege of heading down to Disney World for a week with our family. It has been provided by the wonderful people at Make-a-Wish who granted a wish for our son Griffin. It blows my mind that it has been almost five years since Griffin was born with a life threatening heart defect. Here we are now four heart surgeries later having enjoyed the great times and endured the horrific times. It has been a wild journey for our son Griffin and our family so it is thrilling to be able to enjoy this wonderful gift from Make-A-Wish. Some of you may be unaware of what happened to our son Griffin so to bring you up to speed with what he has gone through and how he is doing now I will update this week with a timeline of his short little life. We documented a lot of what occurred on another blog at the time so I will pull some snippets of posts and put them up here.

It all began on January 20th, 2009 when Griffin was born. Everything seemed fine and normal but 24 hours everything changed. Here was a post I had written not long after he was born and it was written as a letter to Griffin with a few thoughts afterward. It's strange looking back at it all now. It is such a reminder of God's faithfulness.

"...when you were born there were 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 we held you in our arms and reflected on the gift we had just received.

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 the 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 heart works. 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 we 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.

Here are a couple pics of Griffin before and after his first surgery in January of 2009.
Griffin baby
Griffin after first surgery