Sloan

On April 9th, 2019, Sloan LouElla was born! After 9 years of marriage + fur-baby-parenting, we were adulting to our max capacity (joking, haha, does anybody actually do that?)...and we were excited for our little human-baby. We had prepared, prepared, and prepared. We started a ‘baby box’ in 2016 - just collecting little things for our future human while we were out traveling, shopping, etc - and we were ready for what we thought was going to be a very typical birth/baby experience. After an extremely intense, traumatic, beautiful, life-altering year - we’ve learned that while preparation is wonderful, some of the most amazing, life-altering experiences come from the moments you least expect.

At our 20-week ultrasound, we found out Sloan had a cleft lip and club feet - two of the most common abnormalities spotted on ultrasounds. After weeks of MFM appointments and closely monitoring me and Sloan, we had an emergency c-section due to non-reassuring fetal heart tones at 37-weeks. My body, and Sloan’s body, were slowly giving up. I delivered at our local hospital and upon delivery it became clear there were more challenges than what we knew from the ultrasound. Sloan didn’t make a sound, cry, or breathe upon delivery - and dad held her hand as the Neonatal team attempted to intubate her four times. The fifth time was successful and Sloan let out a cry - along with dad. At that time it was determined Sloan needed to be life-flighted to Primary Children’s Hospital, and she was immediately whisked away. We were thrown into a journey we never expected - but wouldn’t swap for anything now.

Sloan was intubated for three weeks, which meant I (mom) held her for a total of 30 minutes in those three weeks, but otherwise it was just too risky to move her. She was covered from head-to-toe in medical equipment - and all our family could do was hold her hand or rub her forehead. But the news didn’t end there - we found out Sloan’s diagnosis - and the list was long. The reality is that these few weeks were terrifying, dark, and horrible. We were told to stay hopeful - but there was a realistic chance Sloan may not grow or make it out of the NICU. Of the all diagnoses we received - the most devastating finding was that Sloan was DeafBlind with little-to-no treatment available for her. At the time, we received some wise advice from a social worker to spend a few weeks grieving (because we were already in planning mode again, trying to figure out how to help Sloan and begin our new life) - and with that advice, we stopped and took time to be present with Sloan and relish every moment we had with her. We didn’t know what tomorrow would bring.

Fast forward to today and Sloan has defied way too many odds to count. This crazy girl is amazing. During her 51 days in the NICU we had life-changing experiences, met amazing people, and joined a family of other medically complex babies and parents. This experience, while completely terrifying and challenging at times, has totally changed us. Sloan has brought so much clarity and strength to our lives and our family. We count our lucky stars for her everyday. Sloan currently has a tracheostomy and G-tube to ensure her comfort and stability - both were super scary at the time, but now they’re just part of our daily routine and have given her so much comfort. It was totally worth it. In the time between her extubation and trach surgery - she would DSAT multiple times a day, needing medical intervention. Our ENT surgeon witnessed Sloan DSAT in my arms, and point-blank said, “This is bad. She will code if we don’t fix this soon.” After her surgeries, she has been so much more comfortable, healthy, and full of life.

Sloan is doing so well now. We’re still unsure about what the future holds - and face a lot of scary things - but she’s proving all of us wrong every day, and her strength is a beacon of light for us. We have a slew of therapists and experts that visit our house weekly - PT, OT, the local DeafBlind team, ST, her nurse, etc. And we love them, they give us great hope for Sloan’s future and fill our house with warmth and love every day. We recently had a therapist tell us she was worried about meeting Sloan after reading her diagnosis - and after seeing Sloan in-person, she couldn’t believe it was the same human on paper. We currently just use her G-tube to burp (ha!) because she’s taking a full bottle, she graduated OT for the time being, and she’s showing subtle visual cues we never expected.

While being a parent to a special needs + medically complex child isn’t something we ever planned for or intended, and don’t get us wrong - it’s extremely tough at times and the grieving doesn’t just end in a day - when you strip all of that away, we get our queen Sloan. We just love her and are so thankful for everything we’ve learned from her already. Truly, extremely, intensely thankful. She’s our everything. …(Can you tell we could talk about this forever?) This entire experience has changed our lives for good. We’re stronger as a couple and new parents, have more clarity about our purpose in life, aim to find beauty in the smallest moments, and have learned how to recognize and appreciate unconditional love of all sorts.

If we could pass anything on to brand-new parents in similar circumstances, it’s that each day gets better. It’s pure hell at first, no doubt. We have had the lowest lows, and the highest highs. But as you get to know your baby and witness their strength (plus yours) - the fear will turn into joy, and love will become the only answer to anything. ...And we’re only five months into this thing! Most importantly - Sloan is living a life full of smiles, love, and crazy playtime. Today she woke us up at 5 AM and decided to sit in our bed grabbing our faces, snuggling in her blanket, and smiling the cheesiest smiles. There were days four months ago we thought she wouldn’t make it home, so to have her laying next to us at 5 AM is a beautiful thing.