Anxiously approaching Tuesday

On Thursday, we had the pre-op appointment for Eli’s surgery. We met with the surgeon who explained what would happen during surgery as well as the risks. I chose to try and not listen much to the risks. He kept giving us the odds (1 in 600,000, etc.) of something happening. I finally stopped him and told him we don’t really pay much attention to odds considering we were the 1 in the 1 in 1000 parents who are blessed with a baby with Down syndrome. He took interest in our story and asked about how we found out about Eli, etc. It was nice that he actually seemed to care. He is a highly skilled surgeon and seems quite compassionate.

He told us Eli’s surgery is an “easy” one. That was comforting, considering. We will be away from him for 6-7 hours start to finish. I thought about writing about the details of his surgery but it may stress some of you out. The synopsis is that it’s open heart surgery to repair a large hole in his heart. His heart will be stopped and a machine will function as his heart and lungs. This is what terrifies me the most. That’s where most of the risk lies. But I have faith that the Good Lord will keep watch over our sweet baby. He will guide the surgeons and nurses in their care for him.

I am anxious about seeing him after surgery. I’ve been warned that he could be puffy and will be hooked up to multiple tubes, IV’s, drains, and machines. I obviously will not be able to hold him. Luckily, as long as he’s intubated, he’ll be sedated. Once they are confident he can breathe on his own they will remove the breathing tube. After that is out they will decrease his sedation. I am so hopeful that he will not feel much pain. Seattle Children’s Hospital has a great reputation for pain management so I trust they will take care of his needs. He will most likely be in the CICU (Cardiac Intensive Care Unit) for 2-4 days then moved to the surgery recovery floor. His stay on that floor will last until he is ready to go home. Our total hospital time could be anywhere from 4 days to 3 weeks. We pray that Eli is a good healer and strong enough to go home sooner than later.

I have been sick to my stomach since we left that appointment. Although I was assured that he will be in highly capable hands, I am made anxious by thoughts of what poor Eli will have to endure. Thankfully, most children were born resilient and our son was born a fighter. This will be his biggest battle but he’ll have an even stronger heart to do it with. I have no doubt he will be victorious. He will one day wear his scar as a badge of honor. As Eli’s parents, we could not be any more confident of his strength.

We ask that you continue to keep our precious son in your prayers. We ask for prayers for us as his parents. We pray for strength. We need the support and love of friends and family more now than ever. It is not easy for us to ask for help. But we also know that our superpowers may fade. Super Mom and Super Dad may need Super Friends to swoop in and rescue us. We have been blessed to not go through this alone. Thank you for your continued prayers and good thoughts for our family.

I will update this site as time permits. I’m guessing there will be a lot of downtime. I may need an emotional outlet (which is what this blog has become to me). Please forgive me in advance for any rambling I may do.

Love and blessings always. xoxo

11 comments on “Anxiously approaching Tuesday

  1. I know the waiting is horrendous for you guys but also know I will be with you every step of the way. I love you all so much! So very soon our little punkin will not have to work so hard at everything he does. God is in control…do not fear!

  2. Melanie,

    Little Eli will be fine! I guess Anne never told you I’m highly telepathic, but I am. He will thrive and bring you and your family countless hours of joy!

  3. Hi Melanie: I just read your post on BabyCenter and am prayer for you and your family. We are so fortunate to have babies who are so much stronger than we are. We are on the most fantastic journey with our little one’s, so just focus on this being one more step in the journey.

    It might help though to see pics. Other moms have told me that lessens the shock for when they come out of surgery. There is another mom with a daughter named Kennedy that I have been following (just the namesake aspect gives me hope), but she has posted about their journey and has some great pics. My Kennedy had to have a g-button placed at 4 weeks to help her gain weight, so I’ve at least been down the surgical road before, but the pics for the OHS, really helped me get a sense of what to expect for her surgery.

    Blessings to you and I can’t wait to see little Eli’s recovery story/pics!

    • Hi Chandra,
      Thank you for your prayers. I just hopped over to your blog and feel like I could’ve easily written any one of your posts. Funny how so many of us have been through similar journeys yet at one time felt so alone. I know how it is to look forward to heart surgery. Then when it becomes more of a reality it starts to be terrifying. I will pray for your precious Kennedy.

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