On April 29th, 2015 we got the news we’d been dreaming about since we arrived nine days earlier in the NICU. We could go home!!! The pediatrician on Adalene’s case came up to me while I was walking in for Adalene’s 8am feeding and asked if we wanted to go home that day. I said, “Yes, we are ready” with the biggest smile on my face. I couldn’t wait to tell Ryan! I don’t remember if it was that conversation or a conversation the day before, but on one of the last days in the NICU the doctor told us that the results came back and that Adalene tested positive for Down Syndrome. The doctor told Ryan and I separately which I wish he hadn’t. But I wasn’t surprised by the results because I knew in my heart that my little girl had Down Syndrome. It was nice to get the official diagnosis though.

Before we left the NICU a woman who had a daughter with Down Syndrome met with Ryan and I. We sat on the couches in the waiting room of the NICU and talked to her for probably 45 minutes about all kinds of things. She told us that her daughter was in her 20’s and living independently in Chicago where she had a full time job. I was completely taken aback by this. I thought people with Down Syndrome were unable to have jobs and live independently! She told us how hard it was at first because of the shock and society’s perception of people with Down Syndrome. But then she said after you get past that, it’s really not much different from raising a typical person without Down Syndrome. Adalene would have her own struggles and strengths, dreams and gifts, just like anyone else. She’ll learn and grow and have her own personality just like her peers. She just may take a little longer in some areas. She’ll take the scenic route, I like to say. My weary heart found so much comfort in what this woman said. She talked as if it wasn’t a big deal at all that Adalene had Down Syndrome. My life was shattered just a few days before with the news that our baby had Down Syndrome and I thought my life would never look the same. I thought my life was over. I thought that all my hopes and dreams were forever lost because I was given a baby with special needs. I didn’t think it’d be possible to have a normal life ever again. But here’s this lady sitting across from us who, just twenty something years earlier, was in my same position. But look at her now, working and living her life and dreams all while her daughter with Down Syndrome lived her own successful life and dreams. It really was a shock, but a good shock to hear how well people with Down Syndrome can do in life. She said it was up to us. We would be Adalene’s greatest encouragers, her greatest advocates, her greatest teachers. Decades ago, parents would just put their kids in facilities because they just figured they couldn’t learn much. They had no idea what their kids were capable of.  It’s not until recently in the last few decades that kids are getting the help and therapies they need early on so they can have the best future. So she told us to fight for Adalene and to never underestimate her. She said to dream big for Adalene and never allow her or us to think she couldn’t do something.  I’ve remembered that and try to follow her advice every day.

We left that conversation with a new sense of hope for the future. Things were starting to look up for our little family.

We had conditions to be able to leave the hospital.  Ryan and I both had to be taught how to insert Adalene’s NG (Nasogastric Intubation) tube. Adalene was still breast feeding but didn’t get enough since she was weak so the NG tube was how she received the majority of her milk. There’s no way we could go home with her needing the NG tube and not know how to insert it . Ryan and I don’t have the strongest stomachs when it comes to blood and medical procedures. There’s no way either one of us could ever be a doctor or nurse (hats off to those people!). But we had to suck it up and learn how to insert the tiny tube up Adalene’s nose and into her stomach for us to go home so that’s what we did. Having to hold your infant down while you insert something into her nose that makes her scream and gag is probably one of the worst things. Then we were given a stethoscope to listen to her lungs and stomach to make sure the tube was going to the right place. If it went down the wrong tube and into her lungs then she could basically drown. So we had to make sure it went to the right place which was obviously into her stomach. After some practice, we both were able to successfully insert the NG tube for Adalene. There was something else that we needed to keep an eye on- jaundice. She had been under the blue light for most of her stay in the NICU and while her jaundice was getting better, it still wasn’t gone. So we understood that we could potentially have to have a home treatment.

There were other details and legal procedures we had to go through before we left but it’s all a blur. We just couldn’t wait to get home! So on the evening of April 29th, we busted out of that NICU in South Bend, IN with a spring in our step. We just couldn’t wait to experience life with our baby girl outside of the hospital walls!