“Uh, I forgot.” What?!!

So yesterday was one of those days I hope to never experience again. It began early in the morning. Too early. I didn’t get much sleep and to hear my alarm ring at 6:00 am, I thought I was gonna cry. After getting all the kids ready for school and then dropping them off at various homes through the neighborhood, Seth, Ellie and I headed up to Primary Children’s Hospital to begin our day of poking and prodding.

As we drove up to Salt Lake I kept telling Seth that I didn’t think Ellie could possibly have cystic fibrosis. He said he preferred not to make a decision this early so it wouldn’t hurt later. The night before I was up a late surfing the internet and quickly becoming an expert on cystic fibrosis. It was late and I wasn’t paying much attention but something I came across did give me a little hope. I read that the PKU, a newborn screening test they do in most states, often checks for this disease at birth. If that was the case, then Ellie would have already been tested twice and we would have known if she had cystic fibrosis. The blog I read it on wasn’t a medical site so I just logged the information and went to bed. The next day I had so much on my mind that I didn’t really think about it again.

We finally arrived at the hospital around 9:00 am to get Ellie registered for all the lab work that was ahead. We started with the sweat test. Electrodes were put on her legs to stimulate the sweat glands. They remained on for five minutes. Then she they wrapped her legs in gauze, plastic, more wax like paper and then some tape. I was told to bundle her in as many blankets a possible for thirty minutes and then come back. Seth and I walked the halls keeping her bundled tightly. She had the rosiest cheeks. After 30 minutes we returned to the lab where they undid all her layers and took out the gauze. The nurse commented that they didn’t appear very wet. There is a chance that if not enough sweat was collected then the test would be invalid and have to be redone later. The sweaty gauze was sent to upstairs for testing and we were told to come back in 5 minutes to see if the test collected enough sweat.

Next, we had the draw a vial of blood. They stuck a big needle in her tiny vein and drew as much blood as they could from a 9 lb. baby. That was sad. She screamed. Seth didn’t dare watch. I held her and tried to comfort her. Next, we went to radiology to get her chest x-ray. The wait was near an hour. During the wait we found out that one of the two gauze pads from the sweat test didn’t get enough sweat and so the test wasn’t valid. I called the doctor and explained to him what happened. I asked if we needed to do it again. As I asked, the thought popped into my head from the night before. I thought I should ask him about the newborn screening to see if she had been checked at that time. He paused. He then said, “Uh, yeah, I forgot about that.” He went on to ask me if Ellie was born in Utah in the last year (which of course she had been) and said that he had forgotten because they recently added cystic fibrosis to the list of diseases they check for in Utah. What?! How do you forget something like that? Doesn’t he know that he put me, my friends and my family in a total state of panic? I was sure he felt bad but I didn’t care much. I was upset. He said it was still a good idea to do the sweat test again just to be sure, but what could be more certain than a blood test? We decided against redoing the sweat test.

He did want me to go through the rest of the tests with Ellie to check for other things. The x-rays weren’t too bad on poor Ellie, compared to the other things she’d already been through. They did an x-ray of her on her back and one of her turned on the side. They did have to hold her in an odd position for the side shot. She of course didn’t like it at all and screamed the whole time, but it went fairly quickly.

Finally we went to what they call the “Suction Shack”. The nurse inserted tubes so far up her nose that it appeared as though it touched her brain. They wrapped her up tightly beforehand so she couldn’t move. She screamed loudly. I can’t help but to think it was painful. For me it was the hardest test of all to watch. I guess it tested more extensively for RSV, H1N1, etc. I knew she didn’t have those either so I am not sure what the purpose was, but it was doctor’s orders.

We were all very tired; it was emotionally draining. I also was frustrated. I kind of felt like it was all for nothing. Now I remember why I rarely take my kids to the doctor. I think sometimes they get overly paranoid, especially the younger ones. I am going to find a pediatrician like the one I had before Dr. Clayton retired. I think many years of experience is vital. This doctor had only been in practice for a couple years. We did get a call about the results later in the evening. Her chest x-rays were perfect and showed nothing wrong. Her blood panels showed no signs of any issues. They did test the one sweat pad and it was negative for cystic fibrosis. We’re still waiting to receive some of the other results, but we’re not too worried about them.

So it boils down to Ellie having a little cold. Yes, she is small and I am going to increase the amount of formula that I give her per ounce to help give her more calories but I am pretty sure I was right about her weight. She is small, just like all of my babies have been. I wish yesterday didn’t have to happen. It was sad to see her having to go through all the tests. The one thing good that came out of this whole ordeal was it reminded me how blessed I am to have 6 healthy children. I spent a lot of time yesterday evening and today holding and talking to sweet Ellie. I am so grateful to have her in my life.