The MRI

Well everyone, the MRI didn't go as we had hoped...

It showed that Ella had a stroke of some sort within the last six days. The infarction (the obstruction of the blood supply to an organ or region of tissue, causing local death of the tissue) happened on the left side of her brain which will affect her right side. The neurologist showed us the images of her brain (which, by the way, the medical field is insane, the advances we have now-a-days blows my mind on a daily basis) and even we could notice that the left side of her brain looked a lot more blurry than her right. As you can imagine, we have now been analyzing every move Ella makes. We have noticed a little bit of a difference in her right side's ability to do certain things like move her arms, fingers, legs, mouth, and tongue, but it all seems minor in most areas other than her right arm/hand. The neurologist came last night and told us that we will have to wait as it heals in the next 3 months to really see the damage done. He tested her reflexes in each knee and the right one took a couple of tries but it still reacted. Her hand on the right side seems to be impacted the most, at least that we've seen so far, but with therapy, I hope to one day get that baby working like it used to. The neurologist was also checking to see if Ella's eyes tracked with him. Now this was a part that I was really nervous about. Tracking hasn't always been her strong suit even before the stroke hahaha! She's often found looking a bit past you or checking out your forehead, but she did a great job with the doctor. I think God knew we needed a "win" in this area. We were told that Ella's speech and mobility (sitting up and walking) will be delayed as well. Matt and I have known that she'd be delayed anyway because she's been in a bed most of her life, so this news didn't come as too much of a shocker to us. He also noted that Eli is going to be the best therapy for her. He said that as good as we are at working with her, she is going to be much more intrigued by him and will learn more from him playing with her. So... no pressure Eli 😉.

I am still amazed at the fact that our PICU doctor, Dr. Mittal, thought of getting an MRI done. God has such an amazing way of orchestrating everything. When she received the call from the radiologist she couldn't believe it because it was ordered as more of a protocol. Babies that come off of ECMO alive will get an MRI done once they've gotten stable enough and we definitely hadn't noticed any change in her. Even right before Ella was going into the MRI, my mom and I were laughing at how much she was moving and how smiley she was. 

This news hit us pretty hard. It's sometimes difficult to believe all that she has had to endure. It just seems so unfair sometimes. And yet, she's still here and still smiling, so we will be here and smile alongside her!

Pre-MRI smiley, little, crazy haired girl

Post-MRI sleepy and snuggly

Cute little bow on a cute little sleepy girl!

Now for the GOOD NEWS!!! We were told today that we are looking at going home in a...

wait for it...

WEEK! YIPPEE!!! It may not happen, because you know... it's Ella, but hey! We have an estimated time of departure! How exciting is that?! We are going home on a ventilator unfortunately, but in hopes of weaning her off of it. She did her first sprint off of the vent today for 30 minutes and totally aced it, so I am hopeful.

A little while ago I was given a CD from a good friend, Yulianna, who's daughter, Brooke, also has HLHS. This CD has been in my car and playing non-stop. It has been such an encouragement to me. There's a song that I LOVE. It is such an encouragement to me. The chorus says:

And even when our hearts are breaking
Even when our souls are shaken
Ohhh, we've got this hope
Even when the tears are falling
Even when the night is calling
Ohhh, we've got this hope

The whole song is here:
https://www.youtube.com/watch?v=OnuC_zEugo0

The other song that has kept my spirits high and reminds me that God has us in His hands is found here:

https://www.youtube.com/watch?v=YeLnMegXeLc

God has blessed me so much with her friendship. Although our stories have been soooo different, we have been able to be strong for each other in times of weakness. We have been able to relate on a totally different level than we can with other mamas because our daughters are heart warriors.

God has been so good to us. Even though we are continually having things thrown at us, we press into Him to keep going. Sometimes I feel like Ella is like Job, having so many things thrown at her and yet God uses her suffering for other beautiful things. 

Love,
Jillian