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In It For the Long “Hall”

on August 13, 2013

It has been one week since our beautiful babies joined this world. That’s a little hard for me to believe. Seven days of no sleep all run together as one long, challenging day. When we first transferred our care to U of M it was due to an expected esophageal atresia with Audrey. The staff has been wonderful with answering our questions, connecting us with resources and making things a little easier.

One big part of things being easier was a tour of the NICU where Audrey would be staying. I recall being pushed in a wheelchair through the 8th floor rooms and resources. Things were getting a little too real for me. I was beginning to grieve my plan for a perfect and healthy birth. You know… the kind where the babies are handed to you in the delivery room with all ten fingers, toes and an esophagus. We would no longer be discharged a day or two after delivery and taking our healthy babies home to Mommy’s dream nursery that everyone worked so hard to put together while I was on bed rest. No, that nursery now collects dust instead of baby smiles, spit up and streams of pee during diaper changes. One… Two dreams slipping away.

Pictures of babies as patients were hung through the main hall leading into the NICU. Next to each baby was a portrait of that child older (toddler to teen) and sometimes a framed story with the child’s diagnosis. I glanced at them in passing. We were wheeled by the milk bank and pump room. I had planned to breastfeed both babies, but would have to improvise the plan for Audrey. One more dream no longer the same.

The first two days were extremely hard both physically and emotionally for me. I don’t think I have to get into detail about the physical challenges associated with a surgery so I’ll get straight to the emotional aspect. Daddy spent the first few days with Audrey in her private NICU room while Asher and I were stuck one floor above them. Asher was not permitted to visit his sister. In order for Mommy to visit there either needed to be someone in the respite care nursery (which often was not the case) or Daddy had to come upstairs and sit with Asher in our room. There were less than a handful of visits until I was discharged (that’s another story for a different day). I found myself looking closer at the portraits of previous patients hung on the hall wall. Did any of them have the same diagnosis as Audrey? There! That boy did! The one with spikey hair and a gigantic grin holding the wedge of watermelon. He looked happy.

Doctors continued checking Audrey over and news continued to come. Audrey has a couple of heart issues that will require surgery to fix. They are not currently life threatening but the pediatric cardiology team checks in with Audrey and us each day. There were several portraits of kids born with heart defects on the wall. I felt a little hope when I found them.

Audrey did not have a stool in the first 24hours and needed a biopsy to rule out another possible issue.

Getting bloodwork done is no small chore for our little Audrey. Her heel was severely bruised and purple from the heel sticks. And several times they would have to take more blood because they didn’t get enough for the test they needed. I walked in to see the nurse drawing blood from her head and nearly passed out. But it didn’t even bother our tough girl.

This pretty much brings us to yesterday. It was a day of victories and more trials. The doctors decided it was time to begin feeding Mommies pumped milk into Audrey’s feeding tube. Yay! What a huge milestone for her! And the doctors lifted the no hold rule for Mommy, Daddy and Bailey! After five long days we were able to hold her again! Doctors and nurses said that we just beamed with excitement to be holding our girl. The victories feel so good!

The day was winding down and I had hit a wall from not sleeping when the nurse came in and asked when we could speak with the genetics doctor. A lot of the bloodwork that had been taken was to run genetic testing since the doctors suspected Down Syndrome. We had been waiting for these results to come. Neither of us discussing the possible outcome just that everything so far could be “fixed” except this. We asked to see the doctor right then and it was confirmed. Audrey Ann has Down Syndrome.

Take a deep breath…
Blink back the tears…
What does this even mean?
Oh screw it!
The tears came and I couldn’t stop them. Another dream gone. A dream that my baby girl would have an easy normal life. A dream of her in “perfect” pig tails spinning her dress in a field of flowers…. Gone. So many dreams faded…. slipping….. gone.

I assured the doctor that I was ok, my love for her hasn’t and will not change, and that we just need to become educated on what this means for her and how we will care for her. After he left Josh and I just hugged. We needed that. I was grieving the loss of my dreams. Emphasis on MY.

The boys decided to go get dinner and I walked down the hall with the portraits of previous NICU patients. I was on my way to a private consult room so I could call my parents and give them the news when a portrait of a little girl caught my eye. This precious girl was born with a congenital heart defect and Down Syndrome. She looked so frail in her NICU picture. I looked back to her portrait that was taken at age five. Her hair was styled so cute. She stood in a field of flowers with biggest smile. In the description it said Abby loves dancing. She is beautiful.

And that is when I fully realized something I’ve been saying all along. Dreams do not just die or go away unless you let them. But sometimes God offers us a bigger dream than we ever could have planned for.

Audrey Ann was born on August 6, 2013 at 9:49 AM just one minute after her brother Asher Louis. She was born perfect. Perfectly beautiful. Perfectly loved. Perfectly ready to take on every obstacle handed to her with the love and help from her family. A perfect fighter. A perfect sister. A perfect daughter. She is perfectly ours! And with all of this perfection we still have a long road ahead of us for surgeries and healing. But we are in it for the long “hall.” You see the hall of portraits mean so much more to me now. It is filled with children who have parents that thought they lost dream until you focus on the after pictures that are filled with hope. Filled with kids being kids, skateboarding playing basketball, smiling, playing guitar, dancing, happy, playing with other kids, LOVED.

I no longer restrict my dreams for her with parameter of how they will be achieved. Instead I dream that she feels loved, accepted, happy and confident. I dream this for all of my kids.

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9 responses to “In It For the Long “Hall”

  1. grammy says:

    She is absolutely beautiful and so loved already it can only get better. Love you guys

  2. Sara Kirby says:

    You have your babies… life will be good. Keep the faith and the love.

  3. Jen Woodcock says:

    She is perfect. “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14 Praying for your family always! ❤

  4. Sandra McQuay says:

    She is my prefect Grand daughter I love her with all my heart.

  5. Karla says:

    Thank you for sharing your angels story with everyone! Regardless of the disabilities our children face, there is one thing that they can give MORE of than most children~~~LOVE!!! So proud of the momma you are!!!

  6. Richard & Anita Kall says:

    You have been given a beautiful gift. They could not have been born to more loving and caring parents. Dick & Anita

  7. I cannont begin to tell you how much this post means to me! You see…I’m Abby’s mom…the actual Abby who’s picture is in that hallway. I got a message this afternoon from one of Abby’s nurses (whom we’ve kept in contact with) and she told me to check this out. I’ve always known that Abby’s impact is far and wide, how moving to know that she continues to spread her joy and comfort.

    You have a lot on your plate right now, but if there is ever a time when you would like to contact me, please know that I’m available. I remember how very alone we felt and how scary things seemed.

    You are all in our prayers. Blessings to you!

    Signed,
    Abby’s Mom

    • wewiggins says:

      Thank you for reaching out. I have been reading your blog when days are long and tough here in the NICU. Your recent post brought me to tears. Some day I would love the opportunity to meet and thank Abby. She most likely has no idea that she helped me to accept my daughter, Audrey for everything that she is and will be.

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