What to Tell

As I’m writing these stories down, I’m finding it very hard to tell the whole story in such a short amount of time. Every day in the NICU could be a chapter in a book. Do I tell about the tall doctor that walked in and without saying a word to me ordered some strange sounding medicine and cured Justice of her low calcium levels. How do I express how in awe I was of him and how over the next 11 years he would become one of my most trusted advocates? However, the first time we met, he didn’t even see me sitting there.

Do I tell you how they thought Justice was born with Leukemia? I didn’t even know babies could be born with Leukemia. I even asked if that would mean I also had it. How could she have it and not me? We decided not to do a bone marrow test because we felt it was to invasive and she had other problems to deal with at the time. Two years later, while I was co-instructing a course at the university, we had a guest speaker who talked about babies born with Leukemia only have a 2% survival rate. At least that was what it was at the time. This was incredibly hard to stomach. No one told me this before. Here I was in front of a classroom full of students, cameras feeding it to other cities and it’s suddenly clear to me, if we decide to test Justice and it comes back positive, there’s really nothing they could do to save her. I know the doctors were trying to save me the heartache when they couldn’t get an accurate test result but hearing later in this way didn’t help me. Again, it was one of those times; you hold your chin up, keep it together until you can be alone and then cry until you run out of tears. So far, Justice has not developed Leukemia but to this day, I hold my breath when she has blood drawn.

Do you want to hear about the Genetics’ intern that instead to taking a skin sample from a spot that would never be seen decided to take a short cut and scared the top of her thigh. I’ve never seen him again but I ended up speaking to the doctor who assured me he spoke to the intern and it would never happen to another child. I know he probably didn’t mean any malice but he didn’t think about what his actions were doing either. Every time I see this scare, I hear the doctors telling me my child isn’t normal. The little devil on my shoulder tells me they had to run this test because she’s "deformed," "mal-formed," "had an abnormal development". (All medical terms used to describe her to me.) I know she’s better than normal. I know she’s perfect but this test meant something else. As much as I accept who she is today, they didn't test her DNA because things were going so perfect and they wanted to see why. As a doctor, he needed to be aware of the long-term effects of his decisions. It was more to us then a random DNA test, it was personal.

Maybe you want to hear about the happier moments, like how when Justice would come out of her drugged up stupor we would immediately bombard her with camera flashes. She slept so much of the time; her waking moments were just precious to us. The poor little girl probably felt she was born into a Vogue photo shoot. Or when Cy came to visit and we took him to see Pooh Bear. He was so excited. It was so wonderful to see him and hold my other baby. Just seeing his smile would brighten my day and mend my heart.

I could tell you about scary things, like how after visiting hours you had to enter and exit the hospital through the emergency room. This was fine except as soon as the sun went down the police started bringing in all the gang violence victims. This in turn brought the rest of the gang and their families to check on the victim. Then you had your rival gang, drunks who got in fights and think you’re hot, over dramatic teenagers who wrecked their parent’s car and the homeless guy who was probably just there for a show and a warm place to hang out. After visiting hours I myself wasn’t an innocent 25 year old from a small town. I was suddenly, “The Mom,” even the toughest gang members knew to step back when I walked to my car. It didn’t take much to sense my stress. None of them dared to find out how unstable and crazy a NICU mom might be.

However, one thing I will never forget about the NICU is the day I tried to fill out Justice’s baby book. My original thought was this would give me something to do. I could fill in bits and pieces of it but for the most part, it didn’t fit. Where was the part about tube feeding? Where could I list her 18 or so doctors? What about the day she started breathing on her own? I had to tell about that. I ended up calling the March of Dimes and asking them if they knew of any baby books for the NICU. I thought they could easily tell me where to look but they didn’t know of any either. They said they had never thought about it before but I had a very good idea and they were in the process of putting out a welcome packet for NICUs around the United States and wondered if I would write a baby book for them to add to it. Therefore, when Justice was a few months old I wrote the March of Dimes’ NICU baby book. This will always be something I am very proud of. I have always prayed for it to bring a little bit of normal into the NICU, yet, still fit our special babies.

There is so much more to write about the NICU but from this point on, we should be about ready to go home. If for some reason, I remember something from our days in the NICU I may come back to this time but for now, I think I will start moving forward.