We are a day away from surgery. Today is a very lazy day of lots of snuggles and just hanging out at the Ronald McDonald house. Here's Colston this morning being a bed hog.
Surgery is at 9 am tomorrow morning.
We met with his surgeon, Dr. Ciccolo, on Monday to go over the surgery in great detail. I had my notepad with me to write everything down but it was so much information that it was impossible for me to keep up and I know how valuable his time is so I didn't want to keep him longer than needed. Here is the Mayo Clinic's definition of what will be happening tomorrow.
Bi-directional Glenn procedure. This procedure is generally performed when your child is between 3 and 6 months of age, after the first procedure. In this procedure, doctors remove the first shunt attached to the pulmonary arteries, and then connect one of the large veins that normally returns blood to the heart (the superior vena cava) to the pulmonary artery instead. If surgeons previously performed a hybrid procedure, they'll conduct additional steps during this procedure.
This procedure reduces the work of the right ventricle by allowing it to pump blood mainly to the aorta. It also allows most of the oxygen-poor blood returning from the body to flow directly into the lungs without a pump.
After this procedure, all the blood returning from the upper body is sent to the lungs, so blood with more oxygen is pumped to the aorta to supply organs and tissues throughout the body.
Dr. Ciccolo informed us that it will take approximately 6 hours and requires Colston to be put on the bypass machine.
That of course is not easy for any parent to hear but we know that we don't have a choice and all of this is going to give Colston a chance at a better quality of life.
That being said, the mortality rate is approximately 15%. We are so thankful that technology is so advanced with this heart defect and that there is an 85% chance our baby will make it through but it is never easy to hear the probabilities of your child surviving an operation.
Colston is expected to be in the hospital for about 2-3 weeks but then again, it all depends on him. If he is able to get off the ventilator quickly and eat how he was before surgery then we can go home. They have had babies go home in a week and they have had babies not go home for months.
It's times like this that truly test your faith. I will be the first person to admit that my faith wavered during Colston's first operation and his two cardiac arrests that followed. It wasn't fair for my sweet innocent newborn baby to have to go through all of this.
The best words of wisdom I received were, "It is not God that is letting these bad things happen. He simply knows that bad things happen and He gives you the strength to get through it." Ever since I heard that, I have given this whole journey to God. It is in His hands and only He can help us through it.
This morning Justin and I were looking back on the pictures we took in the first two days of Colston's life before he went in for the Hybrid at two days old. It was hard to imagine past that moment. We didn't know if he would make it this far. Now here we are going in for stage two and having the exact same fears and worries, but it is also different in many ways.
We actually know Colston now.
I know that might sound weird to hear and I don't know any other way to put it but we didn't really know Colston then. Of course, he was our son and we loved him with all of our hearts but we didn't have the bond that we do now.
I missed out on crucial bonding time the first day of Colston's life because I was sick in my room and they wouldn't let me go to the NICU. I didn't get to see him until he was about 12 hours old and even then I had to make it quick because it was about 10 at night. I didn't get to hold him until he was a week old.
Things like this are gut-wrenching for a new mother and father and it's even more so now that we know what makes him smile, we know what makes him laugh, and we know his personality.
We are truly a family and have been able to actually be a family once Colston was able to come home at 4 1/2 weeks old.
We know Colston is one tough kiddo. He is way stronger than I will ever be and I draw strength to get through this from him, Justin, and God.
Please keep Colston in your prayers during surgery tomorrow and his recovery in the following weeks.
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