A Lot.

Hi everyone,

Where to start... I went home for the fair on Friday and it was so weird being there. Matt and I agreed that it felt like our family wasn't complete and like we were missing something, rather someone. It was fun to walk around and be with Eli but we couldn't shake the feeling of missing Ella. I have been home one other time since we were admitted back into the hospital three weeks ago and it has felt weird being there without Ella too. I just want her to be back home with us. We now call our house her vacation home since she's only been there 18 days and has been at the hospital 111 days.

In the past twenty days, Ella has undergone 2 heart cath procedures, 2 open heart surgeries, 8-10 blood transfusions, countless blood draws, hundreds of hours of sedation and paralysis, and 10 days without food. As I type this, tears stream from my eyes thinking about all that she has endured. If I could take this all away from her I would. I am finding it hard to stay positive now... There is so little progress (if any) that I am very discouraged. I can also feel like the staff members aren't so sure Ella is going to pull of this one... Matt reminded me that it felt like that last week before her surgery on Monday too, but she made it through that.

Ella's chest tubes were taken out (which means we are closer to holding her but...) then the doctors decided that she needed another one put in on Thursday to allow more fluid around her lungs to subside.

Speaking of lungs... Ella didn't have to get bronched the other day! YAY! But she has been very dependent on the ventilator again... I have been nervous about this from the beginning and I was right to be. The original plan was to use the trach during her surgery as the airway connected to the ventilator, but because of the proximity to the incision on her chest and risk of infection, the surgeons preferred that she was intubated through her mouth. I'm not sure if I said that in an earlier post, but this was extremely frustrating to me because the whole point of not weaning her off the trach earlier was because they were going to use it in the future surgery. But here we are, intubated again and now looking at placing the trach in again. Last week our goal was to extubate and see how she does without the trach, but since she has shown such a dependence on the vent, that plan (and dream of mine) was squashed. I was so disappointed when I was told this morning that they weren't even going to try, but at this point, I know she wouldn't be able to do it anyway. I don't think people really realize how much time and mental awareness we have to have with the trach. We are constantly on and a lot of the care that comes with the trach is really awful and she hates it as much as we do. So that's why we were hoping that she wouldn't need it, but if it will start her healing process, I want it back in, then we can talk about taking it out when she's more stable.

Ella looked sicker today than I have seen her in a long time. It was so painful to see. Her eyes have become sunken in and her skin more of a bluish tint. She rarely opens her eyes and if she starts to move too much, the nurses have to sedate her so she doesn't put too much stress on her healing heart. The lack of nutrition seems to be hitting hard. It has been killing me watching her fight for her life since this last surgery. I just want to see some progress, but know it takes time.

The bacteria culture that the surgeons took from in her chest came back positive for an infection (which we knew could happen since she was left open for so long) and she has been on antibiotics for almost a week now. I was told this morning that they may need to reopen her chest and use a sort of sponge to absorb the infection, then use a wound vacuum to close her. I guess it takes a long time to close with one of those... I haven't really asked because I'm in denial of having to open her up again. This just, once again, postpones me holding my daughter. If I'm honest, after seeing her condition this weekend, I am worried I will never get the chance to do so again. 😢

I am really trying not to lose hope, but today has been a rough one. It's hard for me not to wish that God would just take her when she is suffering like she is right now, but I can't imagine life without her. I just want to make something better for her and I can't. Matt and I have even been told to leave her so that she doesn't get too upset. Just the sounds of our voices got her upset last night. It's hard enough not being able to hold our Ella girl, and now not being able to talk or touch her because of the risk it puts on her heart has been so hard. We have been able to touch her a bit today, but the worry of making her agitated is constantly there so I am scared to touch or talk to her much. I just want to hold her and make it all go away, but I know God is using this painful time for our family for some sort of good.

I have been told by many of you that you are thankful for my honesty in the blog posts, so here's my heart tonight. This has been so hard. I just want to see the light in Ella's eyes again and to see some progress. I'm sure tomorrow will be better! Remember, Ella is our every other day kind of girl!

Love,
Jillian

P.S. one good thing is that Ella's heart has been pacing itself for 3 days now! Pacing wires are out! 😊