Plateau

Hi everyone!

Not much has been going on so I took a break from blogging.

Ella has been doing well overall. She has been doing well with her sprints of being off the ventilator. She even did a 30 hour one! Isn't that amazing?? They tried to put her on the vent to give her a rest after 24 hours but she didnt respond well at all. We found out later this was due to some build up of gunk in her trach and it was making it difficult with the vent connected. So they let her keep going with it off until we noticed her body getting too tired. She is pretty worn out from it today though and did around 30 mins then showed us she needed to rest again. Dr. Falco (the PICU doctor) and I talked and wanted to give her a break for a little while and try again later this evening.

One of the big concerns right now is that wound on the back of her head. It seems as though the tissue surrounding the wound are showing that it may be larger than we think under the skin. Poor little thing, seriously can't catch a break. They are now bringing in a plastic surgeon to see what he thinks we can do. I know my job is to ask the nurses to make sure she is not lying on her back AT ALL at this point. Please pray that this will heal quickly or that the doctor will help us find a way to speed up the healing.

Yesterday Ella's A-line started to fall out and so there was quite a bit of blood all over her and her bedding. My mom got to the hospital earlier than we did and walked into room where the nurses were trying to take care of it. She said it was quite the scene. I'm sure it looked like something off of a hospital show or something. But she recovered well. Something I've learned after being in the hospital for this long is that I need to start giving blood on a regular occasion. I won't be able to until Ella is not nursing anymore (which due to the cylothorax she is still not getting breast milk, but hopefully she will soon! Our freezer and my parents' deep freezer are getting full!) but she had had at least 8 half bags of blood (4 adult sized donation bags) and that's just one little girl! It is pretty amazing the difference we see in her after receiving it as well... Her coloring looks better, she's less lethargic... so I am hoping to donate blood as soon as I'm done pumping for this little one! It really does save lives!

Up until a couple days ago, Ella's been getting feeds through her NG tube (nose tube) constantly. They are now giving her the same amount but in chunks so she gets to feel what it's like to be hungry and to get on a feeding schedule. This will help us get to the point where we feed her through a bottle eventually. We also had a consult with the speech therapist and she said there is a (small) chance I will be able to nurse her at some point, even if it's just once a day. We have to fortify (add calories to) my milk for her because she will burn calories much faster than a normal-hearted baby, so that's one of the reasons nursing is difficult with heart defected babies.

So all in all, I think we have been at a steady uphill since the trach but are at a plateau for now. Once this wound heals and she starts to do more time off the vent we will be sitting pretty 😁. Ha!  But as always, God is so good and loves Ella so much.

Love,
Jillian