As we near the end of Ellie's birthday month, I reflected on so many emotions, memories, moments from this year. I will share an update about Ellie, but I will also share about our ending to a full first year with little miss Elle, what that means for me, and what God has been teaching me. So just a heads up... heavy emotions and reflections coming!

I will start by saying Jelly Bean has been healthy for a full month and I almost can't believe it. In some ways, I've been waiting for the shoe to drop, because it felt more normal for Ellie to be sick at home than for her to be healthy. But if I put that thought on a shelf, I can focus on being overwhelmed with gratitude for what is right now - healthy, smiley, wiggly Ellie. She is back to doing her trials off the vent, she started messy play with some purees (getting very minuscule amounts of food by mouth, but it's still something... green beans are not her favorite), her go to game is peek-a-boo which to me feels like one of the highest cognitive functions i've seen her do because it's SO purposeful it's impossible to ignore, and she is just beginning the early stages of prop sitting alone... what?! And she did her first roll from back to belly all by herself yesterday - who is this girl! 

The days leading up to January 12th (Ellie's birthday) were confusing and the anticipation of the day felt maybe harder than the actual day... well not really, but close. As I worked through my feelings, I tried to explain that it felt like the biggest celebration and also the darkest day of my life. How does someone hold both of those things at the same time? I'll tell you now, that it's difficult but not impossible. Ellie was born at 8:11am and so I woke up on Ellie's 1st birthday feeling heavy. 8:11 was the start of a traumatic, scary, and shattering day. When I began her feed at 6am, I cried off and on until about noon. 

On Ellie's birthday, and the days since, there is one moment out of the million memories I have, that keeps replaying in my head like a movie clip from the day she was born. I am in this itchy hospital gown, laying in a stretcher because I had just given birth an hour prior and couldn't yet walk from my epidural. I was wheeled from the birth room to the NICU by two nurses who talked to me about the weather, obviously trying to avoid a conversation about my daughter, and I thought to myself this can't be good. After sitting outside of the glass double doors of the NICU that was shut down because of Ellie's crisis and just having witnessed the 30+ staff caring for Ellie and doing compressions on her itty bitty chest while she coded, I was parked next to her. The whole room is pure chaos, it feels like a fog, with people rushing around me but all I can see is Ellie. She lays there, her body and face lifeless and a cold blue color but her eyes open, gray and looking like they're losing life by the second. These same eyes communicating one simple request - Help me, mom. I'm yanked out of this moment with her when one of the staff at the end of my bed begins talking to me... she's saying something but I can't make out any words. She begins to walk away and I was in a panic. I'm not typically someone who yells, but in this moment I screamed for her to come back. I said, are you telling me I need to to say goodbye to my daughter forever? Her response? "We are going to do everything we can, mom, but tell her you love her." And so I did, I said it over and over, I love you Elliana. 

I told my counselor this story and at the end she asked, do you want that memory to go away? I thought about it a second and then said a confident, no. This moment is overwhelming and tragic and whew... intense. But it also proved something to me. We stared death in the face that day, and yet here I still am, here Ellie still is. Out of all of the feelings I had on Elle Bell's birthday, two trumped all of the others, gratitude and pride. I looked at her the rest of that 1st birthday, her very pink and life-filled body, banging on toys and playing peek-a-boo, and was filled to the brim with gratitude (no more could have fit even if it had tried). The other feeling, pride. I was proud of Ellie - for all that she has overcome, for the joy she shows daily, for simply who she is becoming. Proud of Caden - for being a resilient toddler throughout this entire year, for being a gentle and sensitive big brother, for the compassion he has for others because of what he's witnessed this year. Proud of Christian - for leading our family through 12 months of what felt like chaos while remaining steadfast and sure. Proud of myself - for being brave, showing up, and loving deeper more than what ever felt possible. And this pride doesn't come with a... look at us, were so awesome. It comes from a... look at what God has done in each of us, all by His ability and willingness, and nothing that we are able to do without Him. But I think most of all, I am proud to be a follower of Christ.

I questioned whether to share this story, because maybe it's too vulnerable or too emotional or too much? I have those thoughts often in my life. But then again, maybe this story shows the gravity of what God has done and continues to do. The miracle (s) that he provides for our family. The countless answered prayers from the countless people who are praying them on Jelly Bean's behalf. Some would ask, do you think you would feel the same even if Ellie hadn't made it that day? I can't say for sure, but I can say that God is faithful in the good and bad, the unknown and certain, yesterday, today, and forever. I don't know the answer to why some moms i've been connected with through this journey, heartbreakingly lose their babies and some don't. I don't know why some kids have "normal" lives and some kids are special and need extra help (how I explain it to Caden when he asks about Ellie's tubes or why she goes to the doctor so often). What I do know is that life is a gift, my own and my loved ones, for however long we've been given, and that God is the giver of that gift. And that somehow, through tragedy and suffering, can come out joy (I don't mean happiness), an inner strength that wasn't there before, hope for the future, and a reliance and relationship with God that can get you through anything. 

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast. To him be the power for ever and ever. Amen." 1 Peter 5:10

I write this the week exactly one year from Ellie's open heart surgery where she was in the OR for 17 hours. Another story, another miracle, another act of His faithfulness. And I promise never to forget what Elliana means "My God has answered" and all the ways that is true in Ellie's life. All the glory be to God for Jelly Bean's first year. 

Prayer Requests:

-Ellie has had a few follow up appointments with her specialists.

Hematology - Ellie's clot near her liver is still there and they want to still keep a close eye on it.

Cardiology - Ellie's last ECHO showed a consistent narrowing of her left pulmonary artery which may, down the road, need to be ballooned open but for now we'll just monitor it closely.

Neurosurgery - Ellie's ventricles seem to be larger and so does her head circumference. They want to continue watching it closely to determine whether or not she would eventually need a shunt placed.

So as we “monitor Ellie closely” (I’ve heard that a lot lately), I am reminded that this medical journey with Jelly Bean is no where near being over, and maybe never will, but we will continue to pray that God will heal each part of her body fully. 

"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you." 1 Peter 5:6

This scripture reminds me 1. He will do it in due time (the phrase that God spoke to Christian very early on in this journey). and 2. That He cares for us, so I don't have to carry the worry about what the future may or may not hold for my little girl. 

-Praises - Ellie has remained healthy (and we pray will continue to during this sick season), she is making lots of progress in her therapies and with her vent (praise Jesus!), and she had an incredible first birthday party with family, a cupcake with frosting that she loved playing in, and a dance party!

Thank you all who wished Ellie a happy birthday and who have devoted so much of your time, love, and prayers to her over this last year.