Back to Ella's 1st Home

Hi all!

We had eight great days at home! I feel like Ella's development has just sky rocketed! She is so much more alert and looks healthier overall. We have had a night nurse almost every night but Monday and Monday made us appreciate her even more! She watches Ella while we sleep and has changed her diaper so often that Ella's diaper rash has completely gone away! One less irritant for her is a success in my book!

We had a great time starting to get to know Ella on a deeper level this past week and we were able to bond with her like we had always wanted to but couldn't really because we were stuck in the hospital room. Ella loves to look at our ceiling and at the tall trees. Eli loves to snuggle her and kiss her. It was so sweet when he got to hold her for the first time. He just had a HUGE smile on his face and she was not happy. It was great. Haha! We've been spending a lot of time on the back deck so Eli can play in his pool as we watch.

Unfortunately, we are currently back at the hospital... On Tuesday evening I noticed that Ella started to turn more blue than normal. We immediately put on her pulse ox and watched as her oxygen saturation (sats) numbers dipped to 59 then stayed in the 60s for a while then they went back up to the 70s. I called the cardiologist office and the doctor told us to watch her and if she dips below 70 again to call. She didn't so we didn't end up calling, but the doctor called again in the morning to check on her. I told him she was floating around 71-72 and he wanted us to come in just to be safe. We went in and were told that we should be readmitted to the hospital to be watched. It was going to be a while before Ella would have a room, so I took her home and called our parents and told them to come over... just in case. The cardiologist talked about her needing another surgery and how his patients with a trach and a single ventricle heart didn't make it very long, so I worried this may be the last time that we had Ella at our house. It is pretty surreal having that feeling... Not knowing if your child will be coming home again. It sucks (for lack of a better word) not knowing what Ella's future is going to look like or knowing what we need to prepare ourselves for.

After a while, we checked into the hospital on Wednesday night. We were greeted with "Hi!...oh no... you're back... but we missed you!" It was like a little reunion. The eight days that we were home were awesome. Being back here has made me so thankful for our home and I look forward to the day where we get to go home again.

Since being here on Wednesday, Ella's sats have been all over the place still. She has been on a little bit of oxygen support (around 25%, room air is 21%). We are hoping to get her off completely soon.

We decided to have Ella's G-tube put in since we are already here. This is a tube that feeds her and is located in her tummy instead of her nose. Before we left the hospital last time, the doctors told us that it was pretty inevitable that she would need one, but we just didn't want to stay another week. So here we are! She will be having the surgery on Tuesday or Thursday, but we were told they're pretty sure it will be Tuesday. Please pray that that will go smoothly. We will have to stay here to monitor her for about a week after the surgery. So we are making ourselves at home here once again 😊 The room we are in is a bit smaller than our old room so it's a bit difficult containing Eli in here, but overall he's been a trooper.

As if Ella didn't have enough going on... She has also contracted an infection somewhere in her trachea. They are saying that the culture is showing it to be e-coli but we aren't totally sold. Our nurse, Emily (who we always request when she's on) thinks that the sample may have been contaminated and she isn't showing any signs of it, but to be careful, we have her on antibiotics.

I will write again after her surgery to update you all! 💜

Love,
Jillian