One of Jerry's Kids

If you're just joining our story, you may feel like you're trying to jump on to a runaway train. For that, I apologize. This blog is becoming quite cathartic. I will beg for your indulgence as you travel this journey with me and and I hope that along the way you come to appreciate the everyday blessings that you might have otherwise taken for granted before hearing our story.

In just these few weeks, you've probably guessed that our whole family gained a lot of medical knowledge pretty quickly in order to understand and care for our sweet baby girl. Within five days of birth, Chelsea had undergone so many tests just trying to figure out what in the world was going on! You see, she looked perfectly healthy. She was delivered full term, no physical defects, great birth weight and length. She simply could not breath or move on her own. All of this was totally unexpected to all of us; physicians included. This simply wasn't in the plan.

Since all tests were coming back negative here at our local hospital, it was arranged for Chelsea to be airlifted to Oschners Hospital in New Orleans where she would have access to more specialists and further testing. We simply had to find out what was going on in order to know how to help her. It felt like we were racing against the clock with each passing day. It was on day five that I finally got to hold by baby girl for the very first time! Yes, there were numerous wires, tubes and a ventilator circuit to contend with, but none of that mattered when I got to hold that precious little one in my arms. I just melted. I was afraid to break her as I held her but also didn't want to put her back in her bassinet. Wouldn't you feel the same if you didn't know if you'd ever hold your baby again?

We spent three more weeks at Oschners. We never left her side. Our parents were so supportive and were there with us as much as possible. Family and friends offered us a place to sleep and brought us meals to eat at the hospital. The nurses were kind enough to allow us to spend extra time with her after visiting hours once they saw immediate, measurable improvements in her vital signs each time we would interact and read to her. We even made a recording of our voices reading "Cinderella" to her for them to play for her during the night whenever they felt it would help. You see, we read "Cinderella" to her in utero and I can't help but believe that this made her feel safe even though she was in the middle of a NICU unit.

During her time at Oschners, we did get final diagnosis, confirmed by a muscle biopsy. It wasn't the kind of news that parents ever hope to hear. Although, at least we got an answer. Some parents never get a diagnosis. I can remember actually praying to God... "Please just give us an answer." With this answer, we had a direction. We also had a prognosis and it wasn't good.

I'll never forget the day we were pulled into the neonatologists office to receive the news. We sat across his desk as his nurse practitioner stood behind him. He pulled a book from his shelf, and in our opinion, so callously said to us these words that I will never forget, "Well, looks like you have one of Jerry's Kids." My heart sank into the pit of my stomach. Tears filled my eyes. I didn't know whether I wanted to vomit or punch him. I wasn't quite sure if I heard him correctly because I didn't think a doctor would say such a thing. I looked up and the nurse practitioner had tears in her eyes. To be quite honest, the rest of the conversation is still a blur except for the parts about her life expectancy being about six months and that we had the options of putting her in a home or trying to be accepted into a ventilator training program for parents if we wanted to take her home.

Obviously, we told him that we wanted to proceed with whatever it took to take our baby home immediately. God took over from there in a BIG way! The next day she got her trach and feeding tube. There were only three places in the country that had training programs for parents and you had to be interviewed, accepted and wait for an opening. Children's Hospital in New Orleans, literally 5 minutes from Oschners, had a training program! Within three days we were not only interviewed, but accepted and Chelsea was transferred there so we could all begin our training! ONLY GOD!

Three weeks at Oschners was only the beginning of our adventure. We were told to expect 12 weeks of training at Children's. As we'd soon learn, just like with everything in her life... Chelsea did everything in her own time! We were home for Halloween; training completed in under 8! That's our girl! She always said she wanted to go back and stick her tongue out at that doctor one day. Let's just say this blog will have to suffice.

Wendy