I know that people don't set out to screw things up. It is just that "bleep" happens and unfortunately, oftentimes there is a very worried parent/patient on the other end of these screwups. Ivy's MRI was scheduled for 5 pm on the Tuesday following her birthday on Friday March 6. We were pleased that we could get in so soon. That's an understatement by the way. Imagine that you have just birthed your child who appears to be healthy, yet you are being told that she could have potential cancer lurking in her brain. I have a hard time expressing clearly how this feels. I felt so happy to have my baby girl, and yet I felt scared beyond my wildest imagination. It was almost a paralyzing fear.
We had made arrangements with our neighbor to watch our older boys, and she had actually changed her plans to watch them. We drove to the hospital with our four day old little baby girl and Jadey in rush hour traffic. Both Chris and I were a nervous wreck. What would the results yield? How would we get through this? I had spent only a few days at home with my new little one, and here I was getting ready to allow her to be placed in a giant machine all by herself, away from the protection of her daddy and me. This giant machine made all kinds of loud noises and clicking sounds and was going to take pictures in order to get views of her brain that would tell us if she had melanocytes present. Would she be scared in the big machine? This was not at all how I thought my first few days would be spent with my newborn. In the past, it was always about adjusting, receiving visits, recording poops and pees, trying to get a nap in here and there. Was this really my life?
Once there, we were checked in. The technician asked all kinds of questions and I thought we were ready to go. I was getting ready to nurse her so she would have the best chance to sleep during the process. I can remember looking up and a different technician was coming into our little room. I could tell by the look on her face that she was not bearing good news. My heart sank. She told us that they had "missed" in the orders that Ivy was a newborn, and that because of what we were looking for, the neuroradiologist needed to be present, and that person had left for the day. She also said something about not being sure whether we were doing a dye contrast. This definitely made me cock my eye. She was apologetic and seemed a little embarrassed at the befuddled mess her office had made. As if I had not cried enough?? And I remember Chris and I locking eyes as if to share our mutual feeling of defeat. What good would it do to complain or vent to this person? We went home, stomach in knots, rescheduled for the next morning.
Well, a new sunrise brings a new perspective. The entire team was new this morning and we were blessed to have a technician that we liked right away. She told us that she saw that there was a newborn coming in this morning and she said adamantly that SHE would be working with the baby! How sweet is that? I cannot recall her name - but she had curly brown hair, and she was tall and slender, and I would guess her to be in her 50's. She said she had worked there over 20 years. There still was a bit of a mix-up as to whether we were doing a dye contrast which completely upset me. I didn't want my baby stuck with a needle. I was adamant and because I am so super anal, I had already emailed my doctor the night before about the confusion and my fear there could be more confusion. He had given me his work cell number in case there were any problems this time around. He had ordered a brain MRI - no contrast. That was the point, after all, of doing it before two weeks old - no intubation/no sedation - and no needle sticks or trauma. Good grief, I felt here we were getting ready to go again, but fortunately, this wonderful technician took our doctor's phone number and the neuroradiologist called him. Let's just say our doctor "won". We love our doctor. I don't know if he would appreciate me sharing his name in this public blog, so I will not but Chris and I have been his patients since about 2006. He sees our entire family. Chris and I often joke that we feel like we've been to therapy when we leave his office. Yes, he's that good.
The pediatric nurse came in to get Ivy all wrapped up and ready for the procedure. The goal is that she had to be completely still. Have you ever seen the infomercial of the storage "gadget" that sucks air out for compact storage of bedding, clothing, etc.? That is what Ivy went into in my opinion. I nursed her a final time, insuring her little tummy was full, and then the nurse ever so gently "assembled" her in this little apparatus. Once she was in it, she turned on a suction that sucked all the air out of it and made it feel hard to the touch. My little Ivy was forced as still as can be! She looked like a little burrito. I am glad I only have this memory in my mind. I don't need a still shot of it to refer back to. It's not a memory I really want to "look" at again. The pediatric nurse took her and off she went.
Now we waited. About 45 minutes to an hour passed. We tried to distract ourselves by watching videos with Jadey. I tried to keep myself occupied as best I could but it wasn't working well. All I could think about was what the results of this test would mean for us. I was scared, sick, angry....but I also knew I had to be strong for her, and for my boys. After all, I am the mama. The family goes down when the mama goes down.
When the curly haired technician came in, she was smiling. I stood up from my rocking chair and came face to face with her. She said "you're baby is perfect." What did she mean?? I pressed. She said basically that we would get an official reading later once the MRI had been reviewed by the neuroradiologist, but that the radiologist had looked at it and it was normal and there were no "acute findings" in their medical speak. There was nothing there but a normal brain. I could feel my knees weaken. I know that the technicians are not supposed to give results. I've had an MRI before, but this woman was so down to earth, heck, she could have read the results herself with her experience. She knew mother to mother how worried and scared I was and she knew what I needed. She and the radiologist had been instructed by the neuroradiologist for exactly what they were looking for. The neuroradiologist had something else pressing so he had stepped away. It was the news I had been waiting for. I remember hugging her and kissing her cheek as she held my baby girl. When she left the room, Chris and I hugged and we cried.
Once home, I kept waiting for the phone to ring all day to get our "official" results. I didn't want to share our news. Could I jinx it? Of course, no phone call came in that day. I kept in touch with our doctor's assistant all day and we both just waited. Nothing....
My anxiety crept back up that night. I thought to myself, "oh no, the neuroradiologist has looked at it now and he did see something. Oh GOD, please no." It was a particularly rough night of sleep for me. The next morning, I saw I had a missed call from my doctor's office around 10am. I felt sick, and then I heard Chris upstairs talking to someone. He came down and the look on his face said it all. He had just gotten off the phone with doctor's assistant. They had just received the official results. Ivy was fine. I think at that moment Chris and I felt like we were back from the dead just a little. We felt like now our life with Ivy could get underway.
I wanted to put this experience to rest and move on. I hugged my baby girl so tightly and thanked GOD for her health. I knew I would still worry, because remember, that's what I do! This was such new territory for me to have a newborn that wasn't born just "perfectly". It made me so much more aware of what other new parents go through when they too are dealing with something scary and unforeseen. It's hard for me to say this because I'd be lying if I didn't say that yes, I do wish that she was born without CMN. But when Chris and I look at all the other terrible things that she could have, we feel like we are the lucky ones. What else lies down the road for us? What next bridge will we cross? Most everyone has something going on. We all have our burdens. I hope that I can be more compassionate and patient with people when I'm frustrated. What burden might they have on their shoulders?