Sunday, October 13, 2013

We Are Home

Our miracle girl continues to amaze us all and on Thursday, we were discharged from the hospital! We are thrilled to be home and doing life with all four of our sweet girls.

I will admit, there were days early in this journey that I dreaded coming home. The day the NICU nurses broke both of her arms within 6 hours, I vowed to never leave the confines of the hospital.  If they broke her twice in the safest part of one of the best children's hospitals in the world within a day, how could I ever take her home and live a normal life?  I decided though my tears and heartbreak that day that we would just live in our little cubical of the NICU forever. We would have to change the curtains, obviously, but I would love her with my whole heart and take care of her from there during the day and let the night nurses take a shift while I slept a few hours each night.

We juggled our family between home and Levine Children's Hospital for 24 days, which seemed like a long time to us, but it is truly a miracle that it was only that long. Many, many families, spend much longer, with much worse outcomes there. Nate and I took turns between the hospital and home so we were each spending time with the big girls and our new tiny. We had incredible help from family and friends.  Averie, Austin Kate and Atalie were amazingly resilient and understanding.

Eventually, it became overwhelmingly exhausting and I realized I was ready to move out of our NICU cubical and bring her home right around the same time the doctors were wrapping up all they needed to do with her in the hospital. All of her therapies can be done in home and her follow-ups can be done in office. God was preparing my heart for the transition of bringing her home.

Amelia is a very healthy baby except for her arthrogryposis and she did remarkably well recovering from her G-tube surgery. She is taking her day feeds about half by bottle and what she doesn't finish, we tube and then she is on continuous G-tube drip overnight.  So once she had been cleared by the surgeon, and neonatologists, we scheduled all of her in-home therapies and her absurd amount of follow-up appointments with all of her specialists, we were discharged!

Honestly, it was very bittersweet when we pulled away from the hospital. I basically lived there for a month.  In a way, I felt like I was on a mission trip there for almost 4 weeks since we were telling our story and sharing the Gospel with anyone that would listen. They gave my baby a future, they gave us hope. We made amazing friends there, that we will stay in touch with forever. I learned so much from the nurses, that I feel like I am halfway to my nursing degree! We were so excited to be bringing our Amelia home that we were giggling as we were walking in that morning, but I also cried as I hugged all of my nurse and doctor friends goodbye.

The hardest part of leaving was actually getting her in the car.  Sweet Amelia Jane is so unique that she had to have a very special car bed made for her called the Hope Car Bed. The hospital staff worked tirelessly to have the cost of it covered completely by grants, praise the Lord! Even though it is the most custom made car bed on the market for special needs children, Amelia is so special that it still almost didn't work for her. It took 6 adults about an hour and lots of tears on her part and mine to figure out how to get her safely and comfortably in the car bed. Please pray that the car bed situation grows easier each time we travel.

Now we have started settling into life at home and it is wonderful. She has several in home therapies each week as well as many doctors appointments this week and in the coming weeks.  Her sisters are totally in love with her and we are showering her with an abundance of love and snuggles which is the best medicine.

We are simply taking one day at a time, loving Amelia with our whole hearts, trusting God for her future, and thanking Him for trusting us with her.

1 comment:

Beth (A Mom's Life) said...

Praise the Lord that you are all home together! Will continue to pray for your sweet baby and the rest of the family.