A week ago from right now I was hugging Ellie’s surgeon and crying with relief and joy. I can’t believe it’s only been a week for so many reasons. We are still in Toronto, staying at my dad’s house, so we can be close to the hospital while Ellie still has her drainage tubes in, but we are no longer calling the hospital home. Ellie is laughing and smiling, she is breathing without her normal amount of exhausting effort, she is finishing bottles and letting me know when she’s hungry for another. The days of waking Ellie up in the middle of the night, trying to meet daily food quotas, making sure she got everything out of every bottle are over. The nights of hovering over Ellie’s bed and counting her breaths, trying to determine if her exhaustion constituted a trip to the emergency room seem like nightmares, and it’s only been a week. The drainage in Ellie’s tubes is continueing to go down so we are hoping the formula is working and that is all we will need to do. She has a newfound energy . . . for crying and waking up every two hours at night to eat. Before I was scared to let her cry, her body drenched in sweat after a 10 minute tantrum, when today she had enough energy to cry for 20 minutes when I tried to reposition her in her bouncy chair. I’m battling with the pain of seeing her so upset and the excitement that such a spell is normal for babies. I was thinking today how the past week hasn’t really been that horrible. I am reading a book called “David and Goliath” and the author talks about the strength that is gained from the fear of something empowering you once you actually experience what you’ve been afraid of. For 5 months I have been terrified of heart surgery. I’ve pictured Ellie on the operating table and how I would feel when I saw her in the ICU in my dreams. When I handed her over the the surgical nurse I felt my heart break and waiting for her surgery to be done was the longest 6 hours of my life, but I can’t believe that it really wasn’t as horrible as I thought it would be. Walking into the ICU, seeing Ellie for the first time after surgery, Travis and I held each other’s hand and repeated, “Ellie will not look like Ellie, don’t be afraid, this will be hard to see Ellie like this.” But when I saw her lying on her hospital table, she didn’t look like what I had been so afraid of. She did look like Ellie. She looked pretty good actually. The following days which I had expected to be so hard were filled with moments of pride for our brave little girl. Every day I was in awe of her strength and not crying by her bedside like I had thought I would be. Now we are home, and it’s still hard, Ellie is not quite herself, but the fact that she is almost like herself amazes me. I almost feel invincible. Although different, I could compare it to the idea that training for a marathon is way worse than the actual marathon. The nurse that we skype each day says that Ellie is looking really good. We are watching her incision and making sure it is healing properly. I nervously gave Ellie a sponge bath today, washing her incision as they instructed me to do, and she didn’t even jump when I washed it with a washcloth. We get the dressing changed for her tubes on Thursday as well as a chest xray and a fluid function echo cardigraham. Once Ellie’s drainage amount reaches the amount her body can natrually absorb the tubes will be removed. The nurses have been told by the older children that the drainage tubes do hurt. They can rub against body parts within her chest and I’ve been told the pain of that cannot be helped by pain medication. Ellie is on Tylenol and Advi right now and once her tubes are out she will be able to have pain medication only as needed. This afternoon Ellie was possibly feeling the pain of her incision or her ribs still working to heal and I could see the frustration in her eyes. It was 50 degrees and sunny here in Toronto so for the first time since she’s been born I took her outside to enjoy the fresh air. Once she realized she was outside and felt the sun against her face she stopped crying and took a wonderfully deep breath. As I held her and watched her enjoy her surroundings, I felt very hopefull. Winter is almost done, spring is so close I can feel it in the weather today, and we are moving on, and it’s only been a week.
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