One Day at a Time

Hi everyone,

Today was a family-filled day! We had our brothers and sister-in-law in town as well as both sets of parents. Ella is one LOVED girl! We are so fortunate to have our family so close (or willing to drive!). Eli had so much fun playing with everyone. He is such a trooper. I am so glad that God made him so flexible with a go-with-the-flow kind of personality. It has made it much easier to have him down here with us.

Ella's swelling in her head has gone down a ton and it's nice to see her little face again. 😍  Once they took out the pic line (IV) in her scalp, the swelling has really gone down! We got to see her eyes quite a bit today too. I think they may be brown. Eli told us that his sister would be a redhead with brown eyes and so far he's right! She has more hair than Eli did at this point in his life! The night nurse said that the lipids that they put through her IVs make kids have luscious hair and even though she's far from luscious, I am impressed with how much it's grown!

Ella is progressing kind of... Haha! Her lungs have been an issue. They are continuing to not be able to inflate as much as they need to in the upper lobes. They have been doing a lot of respiratory therapy to help open up these lobes of her lungs and that seems to be helping.  She is still on the ventilator and they are hoping to wean her off more tomorrow. They took it down a notch today but not a ton. Her CO2 and O2 levels are still not where they need to be which is a little concerning.

We were told today that the function of her heart is good. So that's positive! The pacing is not so good so it looks like Ella is probably getting a pace maker put in. They are waiting until Thursday to make this final decision, but she's been relying heavily on the external pace maker, so we are guessing it's a go. We are praying that God gives us a peace about this because it means another surgery will take place so her chest will be opened again and she'll be on the ventilator again... 😞 It feels like a pretty big step backward, but we know that it's what she needs to help keep her alive.

The nurse today was talking to me about the life of these kinds of kids and it made me so sad for Ella. He explained how this is not an ultimate fix for her. There are usually other issues that arise later on in life.  Lots of questions flood my mind... Will she live a long life? Will she pass away as a child? Will I be able to handle that if that does happen? Will she ever get married? Will the other kids tease her? Will Eli be an only child and not experience the joy of having a sibling?... And so many more... The reality of her condition scares me but I have to remind myself that ultimately God is in control and has a plan for her. I just pray that He will prepare me and sustain me for whatever may come. It's easy to say that I trust God with her life but living that out can be a challenge. I am thankful that I have Matt and the support of others to help reel me in when my mind starts to doubt.

Please pray for Ella to get stronger. Her body is so little and has been taking a ton of hits. I wonder how much more it can take...

I miss home a lot too... The Ronald McDonald House has been great, but it's nothing like home. When you're here you're constantly around other people that are hurting too. There's been a lot of turn over of people already and I find myself jealous of the people that get to leave. I am ready to take our baby girl home or even just get to hold her or even just to see Matt hold her. I cannot wait for that day...

Thank you all for your continued encouragement and support. It has already been a wild ride and it feels like it's just the beginning.

Love,
Jillian