My daughter. My hero.
“There’s something wrong with your babies heart.”
I still remember this moment and how fast my heart sank. At my 20 week ultrasound we found out our baby had congenital heart disease: tricuspid atresia, transposition of the great arteries, large VSD and coarctation of the aorta. The short version is that she has half a funky heart.
This set in motion lots of tests, doctor appointments, the unknown. We transferred all our care to the University of Michigan since they were the ones that were going to be able to fix our babies heart.. We found out she would need three open heart surgeries to live and while this will correct the blood flow of her heart, she will never have a normal heart. We were so scared and had to idea what the future would hold. We spent the next 20 weeks learning everything we could about her condition and working through all the emotions you have when you find out you’re not going to have a healthy baby.
I don't think I have the words fully yet to describe the emotional roller coaster we’ve been on for the last year nor did I intend share any of this. But the more and more we get to know her the more I feel her story needs to be shared. Our journey so far is full of tears, unknowns, lots of love and real life. This is us.
October 20, 2017 // She's here!!!
She came into this world at 2:40am, weighing 7lbs, 9oz. She was perfect and our lives changed forever.
October 21-23, 2017
Simone was immediately taken to the Cardiac ICU, she needed life-saving medicine to keep parts of her heart open until surgery. This made her swollen and very irritable. They basically told us it was the opposite of pain medicine. This period of time was really hard because they were just trying to keep her comfortable and she didn't want to be touched. I was not prepared for how difficult the presurgery stage was going to be. Her heart rate was so high and she was breathing super hard for days. We couldn't do anything for her but just trust her nurses and doctors and wait for her surgery.
October 24, 2017 // Surgery day
You're broken down and tired
Of living life on a merry go round
And you can't find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
This day was the hardest day of my life. Holding my four day old baby, knowing this was the last time I was going to hold her for a while, knowing they were coming to take her soon, knowing they were going to stop her heart and hope it will start again. It was so much and I cried and cried until they took her. I just kept telling myself she needed this surgery and we needed to be strong for her.
The time she was in surgery felt like a lifetime. I think it was almost 10 hours until we got to see her. That day is a blur. We sat in a dark, quiet waiting room. We had moments where we were totally silent and moments where laughter was exactly what we needed. Our hearts raced every time we heard the door open and our breath got a little easier with each update until the nurse came in and said she was back in recovery.
While we were waiting this song played: "Rise up" by Andre Day and we know that it played in that moment for a reason.
October 25-November 2, 2017
Simone came back from surgery with her chest still open. They tried closing her chest on the 26th only to have her stats drop too much throughout the day and they needed to open her back up. Her chest remained open for another five days. During this time she was still intubated and sedated. There was nothing we could do to care for her and we couldn't hold her. I then realized that this was the hardest part. My arms ached to hold her, to hear her cry, to see her eyes. I had a baby but was not yet able to be a mom. I sat by her beside, cried and held her little hand for hours. I was not mentally prepared for this time in the hospital, I never thought past her surgery and what the recovery for her, for us.
November 4-7, 2017
The 4th was the day she was extubated, we were able to hold her for the first time in 12 days, and also the day her lung collapsed. We spent the whole night up worried about her making it through night without having to be re-intubated as the doctors and nurses did everything they could. And she fought through it all.
November 11, 2017
Another day in the hospital, she was so cute I had to pull out my camera. We also got to put clothes on her for the first time.
November 16, 2017
The day we left the ICU! She spent 30 days there and was finally well enough to move to moderate care.
November 20, 2017 // One month old
November 23, 2017 // Thanksgiving
We were finally able to take Simone home! When they told us she was ready I couldn't believe it! We spent 35 days with nurses and monitors. The time went so fast but the days were so long I never thought we were going to get to leave. We started the journey of not only taking care of a newborn but to also taking care of her medical needs.
December 23, 2017 // Two months old
We've been home a month (we did it!) and Simone is 2 months old! She is growing stronger every day and we are getting a routine down. We are loving having her home and enjoying all the snuggles.
We are forever grateful for the nurses, doctors and surgeons at the Mott's that saved our daughters life. If any of her nurses read this, thank you for taking care of Simone. You were there for her 12 hours a day and did such an amazing job looking out for her. I am so so so thankful for each and every one of you.
She is meant to be here, she is beautifully broken and she is going to do amazing things.
2018 will be all about living life to the fullest, more intentionally and a little slower so I can enjoy more precious moments with my family. Or as my mentor, Mishelle Lamarand would say: More Love Less Hustle.
January 2017 // Three months old // and an UPDATE
Just an update from this original post: Simone was admitted back to Mott on December 29th and will remain while we work on getting her bigger for her second heart surgery that's been moved up. We're anticipating being here until the end of March.
She is just the strongest, sweetest, happiest warrior, taking everything she's thrown like a champ.
I am so thankful for everyone here at Mott that is taking such good care of her and all the support we have received.