Since I confessed that I have been bad about taking pictures the past few days, I decided I would share some shots from Parke's newborn photo shoot a few weeks ago. These are just precious, and I am so thankful that Stephanie was able to capture these memories for us.
There were a bazillion to choose from, so I just picked a few of my favorites to share.
I think this is my all-time favorite. Fuzzy hair, open eyes, and overall just precious. :)
I honestly have the sweetest baby ever! The other two are okay (ha!), but he is just the coolest. :)
I am having the best day today hanging out and snuggling with all 3 wiggle worms. I HAVE taken some pictures this morning, so tomorrow you will get to see my pj clad family at our best! I've already warned Micah that when he gets home from work, he better plan on getting cozy and snuggling because I have promised the kids we would not do another thing today!
So, moving on to answer a few questions I have been getting a lot the past few days.
#1: How are you guys holding up?
To be honest, we are great. It might sound weird, but we are so thankful to be home and be on this path with Parke that things are just peaceful. Before birth, we had pretty much decided that surgery wouldn't be a route for our baby. We had prayed about it, had several conversations with people that we respect greatly, and had come to be okay with the fact that we would have Parke as long as we had him. Obviously, we didn't dream that it would be this long!
I am completely at peace with this route, and I love that God is being given the glory for each day Parke has. He is receiving no support (oxygen, feeding tubes, etc) and is functioning as a normal baby. Each day that Parke blesses us with his presence is completely a gift from the Lord. There are no machines or surgeons to receive any glory for his life...only God. I love that...and God is so, so good at what he does.
#2: So, what happened anyway? Why is surgery not an option?
I'm sorry that I have kind of left everyone hanging on this question. I told you there might be an option, then I told you there wasn't...nothing in between. I'll try to explain as simply as I can because honestly the knitty- gritty details don't matter that much.
Last week when we thought there might be a promising surgical option, we were excited and anxious. We thought it was clear before that surgery was not the route for us to take, but we saw God opening doors for a new path. When we got to Little Rock, some things showed up on the echo-cardiogram that were not there (or possibly not seen) before birth. In additon, the ductus that closes in most babies between 48-72 hours was believed to still be open in Parke's heart...that is what we all thought was keeping him going and allowing his right side to pump for his left. In reality, the ductus had closed already. We all know Parke's heart is special, but it is actually EXTRA special because there is a small hole that is open in Parke's heart that is allowing his heart to continue functioning.
Because the right side of his heart is working overtime to make up for the left side, the right side is becoming weak. The pump function on the right side was lower than it needed to be in order for a surgery to be successful. That pretty much sums it up. Low pump function and a few leaks that we didn't know were present made the option of surgery a clear "no."
#3 Do you feel like you wasted time going to ACH?
I have actually been asked this question A LOT! The answer from Micah and I both is absolutely not. We had a wonderful trip to Arkansas Children's Hospital. The staff was wonderful, the answers were clear, and the care and compassion for Parke was overwhelming.
Micah and I got to spend time with Parke....just the 3 of us...that we hadn't done before. We always had visitors or the other kids around, so these were a special few days.
I had two different nurses cry and tell us that Parke's story changed their lives.
We were able to witness and stand firm in our faith and belief in heaven and share that with many people. We were able to meet several families with children in the CVICU, hear their stories, and know how to pray for them.
We had confirmation of Parke's diagnosis. We feel like we explored every option we could, and we feel even better about where we are today.
We built friendships with people that will last a lifetime.
It was a wonderful, wonderful trip!
"Before I formed you in the womb I knew you, before you were born, I set you apart..."
We know Parke is here for a reason. We know that each day he is here, there is a purpose. God determined his first day and his last, just like he has for each of us. We are going to continue on one day at a time knowing that Parke is meant to meet someone, touch someone, or be present in a situation each day he is here. We will continue to be thankful, to sing praises for our blessing, and share his journey with you.
Happy Day 27!