Round 2

Hi all!

I went home Thursday to get a bit of relief from the hospital. It was weird though, as much as I am OVER being in the hospital, I was more anxious while not there with Ella. Once I came back to the hospital and settled in again I felt this sense of relief. It's a hard balance because I get antsy while in the hospital room, but I also get antsy when I'm not with her.

There is a lot that has been happening...

Ella is scheduled to get another open heart surgery on Monday (tomorrow) at 7:30am. The doctors will be repairing the arch in her aortic valve and putting in a larger shunt to allow there to be more time between now and the next surgery. They said it may take all day because of the complexity. I asked Dr. Nasirof if Ella was his daughter, would he do this surgery or just enjoy her while she is here, and he said that she has been such a fighter that she definitely deserves another chance. I completely agree with him. I knew he would tell me the truth too. I am thankful that I am able to have such honest conversations with all of the doctors and nurses here. Dr. Watanabe and Dr. Nasirof a will be working together alongside another doctor from Stanford, Dr. Reinhartz, and will be supported by Ashley. This surgery seems to be as complex and risky as the Norwood procedure she's already had, but she will be in good hands! They said that they may leave her chest open for a day or two post op, but hope not to. She has a high risk of getting chylothorax, the fat leak in her chest, and may have to go on the non-fat formula again... I've decided to stop pumping because it's an added stressor, but we have a ton of milk stored up from when I was a pumping machine. 😊

If all goes well, Dr. Watanabe said there's a chance that we could go home after a week. I started laughing when he said that because Ella takes longer than most to get it all together. My hope is two weeks, but realistically it's a month, possibly more.

We know the reality of this surgery is really risky and there's a 5-10% chance that Ella may not make it. If she does leave us, I keep praying that it is in a calm and non-traumatic way. I know God has an amazing plan for her and she has already impacted a ton of people in her short life. I am praying that this surgery is just what Ella needs to get strong and that we can work on getting the trach out shortly afterward. Funny story, we saw some friends recently and one of the daughters asked Eli how Ella was doing and he replied, "Everybody wants to get the trach out," and nodded his head shrugging. HA! He knows us so well 😀. It's amazing how much of this situation he really does understand. He has been such a trooper through it all.

I started to look through photos of life since Ella was born so I could get some printed out for our house. I have been putting this task off as long as possible because it meant that I'd have to relive it all again. It was really hard looking at the photos of her while intubated, with her chest open, and hooked up to a million lines, but the hardest was looking at the photos of her before surgery. She looked so normal and sweet that you'd have no idea that she was so sick. There was a pang in my heart when I saw her little chest with no incision on it and I knew she's had to endure a lot since those photos, but once I saw them all over again, I was reminded of just how much. She is truly a laying miracle (because she doesn't walk yet 😁, otherwise she'd be a walking miracle).

Staying the night in the hospital has been really interesting. We got into the Ronald McDonald House again last night, but the previous nights I was staying with Ella. The PICU is a really intense place. These nurses and doctors have to deal with so many things that many people don't realize... One night, I was woken up by a nurse telling me there was an emergency and asked if I could watch Ella for a bit. I, of course, responded with a yes, and instantly my mind went back to the night that we received the call when Ella's "status had changed". It's something that I wish no parent would have to experience. I started tearing up and prayed for the parents of the child who's life was at risk. I hope that I won't have to receive another one of those calls ever again.

Big day tomorrow. I'll keep you all posted.

Love,
Jillian