Praise You In This Storm

Beginning our journey down Hypoplastic Left Heart Syndrome (HLHS)

We deliver this news with heavy hearts, but with much hope on the horizon. On October 19th we went in for our anatomy scan for our little one. It started out great with the tech confirming what she saw was good. When she got to the heart though, she was silent.

“Are you guys wanting to find out the gender?” When we said yes she told us we were having a boy! She finished up and said the doctor was going to come in shortly. In that moment we were thrilled. We had been talking about possible baby names and with all the confidence, Sam said “I think we should name him Cillian.” We loved the name, but the meaning even more which means “little warrior.”

The doctor came in and immediately delivered the news that Cillian has something called hypoplastic left heart syndrome (HLHS) where the left ventricle was severely underdeveloped. As the doctor was delivering the news you could see the seriousness on his face, but wanted more testing with the neonatal specialist to understand just how severe. Despite the lack of information, we gathered it was serious since he said “can you both clear your schedules today for some specialists?”

Sam and I had a few hours in between our appointments so we went to the Dunkin Donuts down the road to collect our thoughts. Sam went to grab some coffee and I decided to investigate the condition while I waited. As soon as I clicked on the first website that popped up, I scanned the page and melted into tears as my heart broke looking at the journey that lies ahead of our little Cillian.

There is no cure for HLHL, but what they can do is reconstruct the heart through several open heart surgeries. Here is a video description of HLHS and here is a detailed description of the open-heart surgery procedures. The first surgery will be performed a few days after birth, the second 2-3 months after birth, and the third at ages 2-3 years old. The recovery is intense in each stage requiring extensive NICU stays.

These past 24 hours have been a spiritual battle between fear of our Cillian’s future and trusting in the Lord. As a first time mom I have had a slew of thoughts. “Am I fit to be a mom? Will Sam and I be able to handle this together? How is this going to affect him? How is this going to affect me? Will Cillian have a good quality of life? Where is the best place to seek treatment? How are we going to afford three open heart surgeries? Can we handle this? What is God’s purpose in all this? How do I grieve for this?” These questions would come and go bringing their waves of emotion that is truly gut-wrenching.

But as we know, and luckily for us, God never fails and is always by our side. In this time, we rest on what we KNOW. We know the Lord is good, even through this fear. We know He has a purpose. We know Cillian was named “little warrior” before we even heard this news for a reason. We know the Lord will not abandon but show us His powerful hand in these dark days and the days to come. We know that through these trials the Lord reveals himself and his glory, and we are excited to see that unfold. We know these things.

Sam and I have never been more of a team then we are now. I already see the blessing; seeing him step up as a future father and seek the care we need for our little one. I already see the sacrifice in the care he has given me the past 24 hours after hours of needle pokes, prodding, and testing. I already see some of the fears I was plagued with melt away with the strength we are getting from the Lord.

Sam and I are putting on our battle gear and coming up with a game plan, figuring out where to move in the US the next few weeks to seek treatment, and will keep everyone updated here on this blog. I thank my and Sam’s family for sitting with us through our grief, reminding us of the hope Jesus brings with salvation that lies beyond the troubles of this world, and sending positive stories of children with this condition living normal lives. Please know that through this shock and adjustment we are hopeful in this journey being successful! We are hopeful and believe in Cillian’s warrior spirit to carry him through this next year. Thank you to all who have prayed, continue to pray, and have expressed they are there for us in this time- we are grateful for you.

I have clung to an old song that popped into my head in between the dark moments. The song is “Praise you in the storm”:

I was sure by now, God you would have reached down

And wiped our tears away, stepped in and saved the day

And once again I say, Amen and its still raining

But as the thunder rolls, I barely hear Your whisper through the rain, “I’m with you”

And as Your mercy falls, I’ll raise my hands and praise the God who gives, and takes away

And I’ll praise You in this storm, and I will lift my hands

For you are who you are, no matter where I am!

And every tear I’ve cried, Lord you hold in your hand

You’ve never left my side, though my heart is torn, I will praise you in this storm.

I lift my eyes up to the hills, where does my help come from?

My help comes from the Lord the maker of heaven and earth!

As I said in my last Instagram post, God is good all the time, in the good seasons and the bad. I posted that in a good season, but the same truth holds in this dark season and road ahead of us.

God bless,

The Bishes