Not Busy
…at all. I’ve been working like a mad fiend hound on finishing our bonus room so we can get the house on the market. I’ve pretty much been working on it for the last 2 weeks, every day, every spare moment. Hopefully it’ll be done by this Friday and we can get the house on the market and get moved to Columbus before the baby comes. Hopefully.
We did have another doctor’s visit this past week to check on the baby. The news wasn’t great, but we’re still hopeful. Basically put, when babies are in the mothers womb, there’s a hole in the septum between the upper chambers of the heart that allows blood to mix between the chambers. The hole is there naturally and closes after birth. A baby with Hypoplasic Left Heart Syndrome (HLHS), which is what our baby has been diagnosed with, needs this hole after birth to allow blood to mix and to find its way to the lungs.
Well on Wednesday we found out that this hole is much smaller than it needs to be and there’s no blood mixing back and forth. That’s not good. It means that there will probably have to be an emergency procedure done on the baby immediately after birth. They will have to go in and put in a heart catheter to open that hole to allow blood to flow back and forth until they can go in and do the first of the three heart surgeries to repair the HLHS.
We’re defying odds here. Out of 100 babies born, 1 might have congenital heart defects, which might be a heart murmur or it might be HLHS. HLHS is probably one of the rarest of the congenital heart defects, and probably the most dangerous, from what I can tell. Out of 100 HLHS babies born, maybe 10 have this obstructed atrial septum, which is what we found out on Wednesday. So if it is rare and dangerous, we’ve got great odds for it. In fact I’m thinking our odds are pretty good at birthing some kind of rare rattlesnake, that seems to be the way the odds are going.
Look, I’ve never been overly outspoken on my Christian faith on this site, but we’re really having a hard time with all of this. Where is God? We’ve prayed for 4 years for a healthy baby. We’ve prayed every day for this baby we currently have. What’s going on? It feels as if he’s absent, just standing by. I know for you non-believers out there you’re probably saying, "see…told ya." However, I’ve seen too many acts of divine intervention to write God off. My dad was miraculously healed of terminal cancer overnight, after praying for healing. So…I kinda can’t just disregard that.
But I’m not seeing God in this. I’m not seeing purpose in this, and I’m having a hard time. If this baby doesn’t make it, I’ll have a very hard time defending God to those that don’t believe. This is our trial, our struggle, our Lazarus, and if something doesn’t happen….it just wouldn’t be good. So, that’s me being honest, saying the things you’re not supposed to say as a Christian.
As a Christian, you’re supposed to say, "it’s dark, but I know God’s light is gonna shine","I know God has a purpose for all of this", "I’ll have faith in His sovereignty". I’m not saying that and I don’t really need to hear that from other people.
So God, here’s your chance to do something huge, something that’s unexplainable. There are tons of people praying for this baby and tons more awaiting the outcome. What’s it gonna be?
great honesty, bro. i believe God would much rather hear brutal honesty than some sort of fake positive Christian speak. be real. i’m standing with you all the way through this adventure.
Hi, my name is Jessica. My husband and I are expecting our first child in September. She has also been diagnosed with HLHS. My first reaction was, “WHY? Why us? We don’t deserve this. We deserve a healthy baby!” I’ve cried a lot of tears and I’m sure there will be many more to come. My thoughts are still “Why us? We don’t to deserve this,” however, these words have a different meaning now. This little baby, whom no one has ever met is now known to so many people who pray for her every single day. Why don’t I deserve this? I don’t deserve a baby so special that she’s held up before God by so many people each day. I don’t deserve the confidence God must have in my husband and I to care for this baby. I know that there is a possible outcome from all of this that will break my heart. But I have to believe that we were specially chosen for the baby that we are expecting and whether she remains here on earth with us or not, she’s already added so much to our lives that I will be forever thankful that we were chosen to be her parents.
Wow. I’m humbled and challenged by that comment Jessica. I’m not there yet, but maybe I can be.
When I read your comments, I related even though I am probably in a little different place than you. I can understand how a parent..and a grandparent might ask those questions of God – I’m sure many have….I’m asking many myself. I was going to post that no matter what happens God entrusted this child to you and Sunette and I saw Jessica’s posting saying much the same thing. I wish I had answers for you…I don’t. My biggest fear in all of this is that a root of doubt and bitterness would take hold and steal what God has done in you. Not preaching here…I know you don’t need that…you’ve always been a thinker so it’s reasonable to have questions. Love you!
I’m the mom of a fantastic 15 month old HLHS boy. He is walking, talking, doing everything a typical 15 month old should be. (Hell, this morning he managed to climb up on the coffee table, for crying out loud!) Am I angry and bitter than my child has to go through heart surgeries, that WE have to go through them and the uncertainty and the fear and still manage to be strong for him? Angry doesn’t describe it some days. I don’t know what my faith is, so I’m not sure who to be angry at, which makes it even harder sometimes. You have every right to be angry and sad.
BUT, none of us know what tomorrow holds for any of us. My son truly is the most fantastic little creature. He brings sunshine to everyone he meets – strangers in the store, friends, family, neighbors. He has boundless energy. And while I said I don’t know what my faith is, I thank someone, something, every day for blessing me with this perfect little human being. And that’s what it is – a blessing. I am so lucky it is him – all of him, even with his heart – in my life. I would not want to change him one bit.
I hope you find some peace along the way. This is a difficult journey, but certainly not one empty of love, wonder and joy. You were meant to be this baby’s parents, for whatever reason.
Sorry for the long ramble. Email anytime – you’ll be in my thoughts.