A Little Break

Hi everyone!

The last days have been good! Ella has been able to be weaned to ROOM AIR no more extra oxygen!!! This is HUGE! She has needed oxygen support since June! So we are SUPER excited about that. One weird thing that's been happening is that Ella's breathing has randomly stopped while sleeping. We aren't sure why she has all of a sudden had this sleep apnea, but this may prevent us from either going home or getting her off the vent... Which leads me to another big decision we've encountered this week. The doctors have kind of left it up to us to decide whether or not we'd like to try to get her off the ventilator while here or go home with a ventilator and try to wean her off there. We have decided to stay a little longer and try to wean her off while in the hospital. So we switched her back to the NAVA ventilator which has a catheter that goes through her nose and touches her diaphragm and can detect when her body takes a breath so it supports her own natural breathing. The other ventilator would just force air into her lungs at a rate that it was programmed to do rather than going with her own breathing. BUT since we've switched to this NAVA setting, that's when she's developed the apnea. It's a bit confusing but we will continue to try the NAVA setting with hopes to wean her off the ventilator for about a week, then if she isn't making any progress, we will stop and switch her to a ventilator similar to the one we'd have at home. Ella tends to pull through at the last minute, so it doesn't surprise me that she is taking a while to adjust to breathing more on her own.

Ella getting time in her space-saver chair. It's fun to see her get in different positions!

Tomorrow Ella will be going in for an MRI just to double check on her brain and to make sure there's no neurological issues or brain bleeds. That will happen tomorrow at 11 so please pray that all goes well.

Recently I've had a hard time not being home with Matt and Eli. Yesterday I was really missing them and decided to just go up to Grass Valley. I left around 8:30 last night and surprised Eli. It was really fun to see him so excited to see me. We have stopped telling him when I am coming home or if we're going to go somewhere just in case Ella has other plans and changes ours. We've really learned how to live in the moment since we've had Ella. We've embraced every minute we've had with her and have stopped making plans for the future, in hopes that we will be content in the present. I remember my professor from Biola talking about "living parenthetically", or living for something else in the future. If I could just get to this... Or I can't wait until the weekend... Or I if I can survive this, then I get to do this... When in reality, none of us are guaranteed the next minute. We've seen this countless times with car accidents or shootings where lives are taken instantly and unexpectedly. We need to make sure that what we are doing now matters and that we aren't counting on something in the future. We need to live in the now.

Ok back to going home... So I was able to take Eli to preschool today and then have some time to myself at home. I have been using this time to get stuff done at home that I've meant to do but haven't because I'd rather be with Matt and/or Eli. Things like switching out my summer clothes to my fall clothes (ambitious, I know. It's supposed to be over 90 here this weekend). Or going through Ella's clothes and putting away the countless items that she never got to wear because she was in the hospital and has outgrown them. Around noon, I picked up Eli and we were able to go out to lunch with our friends. This was something that we used to do a lot and it was so great getting to feel a little more "normal". I always put this into parentheses because my life will never be back at that "normal" because most of the time my brain is still thinking of our Ella girl and wondering if she's ok.

I had planned on leaving after lunch and dropping Eli off with his grandparents, but I honestly didn't want to leave. I felt like I didn't get enough time with my boy. I asked him if he wanted to go home and take a nap with me and he got so excited and said yes. As he fell asleep I just started crying... I miss those days where I would watch Eli drift off to sleep. I miss the days that I would be there when he'd wake up with sleepy eyes and a big grin on his face. It all hit me at once and I was really sad. I felt like I was letting Eli down. I felt like I was choosing Ella over Eli, even though I know that I am not. I know it's just a tough season for our family, but it doesn't make me miss my guys any less. I cried out to the Lord and asked him to give me the comfort and peace that he has continued to sustain us with over these last few months. I am so thankful that God included Jacob wrestling with Him. It makes me feel like I can go to God with questions and wrestle over things with Him. It creates a closeness between us that I am so thankful for. I was able to be real.

After his nap, Eli and I danced around, sent funny pictures to our friends, sang songs, played with chalk, practiced counting our numbers, and pretended we were in the Cars movies, just like we used to. As simple as it sounds, it was just what this mama's heart needed.

Matt got home a little later and then I got ready to head back down the hill. The hospital room that was making me stir crazy last night, was a warm welcome tonight. I walked in to see Ella in a cute little outfit (Yes! A shirt AND pants! Not just pants!) and she opened her eyes as soon as she heard my voice and smiled. I got a good fix of both of my babies. 

Today was a good day. As hard as it was processing through all of my feelings that have been overwhelming me the last few days, it was good. And God is good. All the time.

Thank you for your continued prayers.

Love,
Jillian