Will It Ever Stop??

So another long day at the NICU. I don't really mind actually because I do enjoy spending my time with Emma. Today we spent a lot of time relaxing together. I reclined in our 'kangaroo' chair and read while she slept on my stomach. She slept soundly for quite a long time, head on my chest, listening to my heart beat. What a comforting feeling for a mother. Knowing that your child is so content right there so close to your heart. It was really quite a special time for me and, I hope, for Emma.

Before I arrived this morning, Emma took a little ride in an ambulance. No emergency! It's really quite silly actually. She needed to have a test done at Children's Hospital of Boston, so they had to take her by ambulance even though Children's Hospital is literally across the street. Anyway, her nurse, Danette went with her and said she was looking all around at the new scenery. The test she was having is called a VCUG. I think it stands for 'voiding cystourethragram'. Basically, they insert a catheter into her bladder, fill it with some kind of solution that shows up on an x-ray and then they take pictures to see how the fluid flows. I guess, ideally, it shouldn't flow anywhere since the bladder is the final resting place for her liquids before they exit into her diaper. In her, the liquid 'sloshed' back up her ureters into her kidneys. This is called reflux which I mentioned in an early post and is probably what gave her the UTI and consequently, the meningitis. We suspected she had it so she has been treated for a few weeks now with prophilactic amoxicillin. Of course, because nothing can really be easy, they stopped giving it for a few days because she was developing a rash on her face and neck, which we thought may have been from the amoxicillin. It started getting better in the last few days, leading us to believe that, in fact, she did have a sensitivity to it. Today, however, she had a new patch of it so now we think maybe it's not the medicine. I think they will start her back on it tonight. Oy vey!

Her reflux is a grade 3 on a scale of 1 to 5. She will hopefully outgrow it, but she will need to stay on the amoxicillin until she does or until it becomes apparent that they need to fix it surgically. She also has to have another study done to see if there is any damage to her kidneys. Just what I wanted ... more tests! I really can't imagine how we ended up with this sweet little thing with so many problems. All of which are not outwardly detectable. I guess that is a good thing, but it really makes it hard to believe anything is wrong. The real kicker with all of this is that since I had high blood pressure throughout my pregnancy, it's highly likely that the reflux is resultant of that. I know, I know ... I shouldn't blame myself, but it's hard not to take it that way. I think this stuff all sounds worse than it is, but it certainly adds to my lists of worries, rather than taking away from it. I guess it's a mother's job to worry though, so I'll have no shortage of 'work'.

Emma may have an MRI tomorrow to get more information about her ventricles and hydrocephalus. I'm still hoping they find something good that would save her from having a shunt. In case, you aren't sure what a shunt is, it is a catheter that is surgically inserted into one of the ventricles in the brain. It is then threaded down the side of her neck, down her chest and into her belly. When pressure builds up because too much spinal fluid remains in the ventricles, the shunt drains the extra fluid to the belly so it can be reabsorbed there since her ventricles don't seem to be able to do it. It's all internal ,although, I guess, sometimes you can see the tube if you know what you're looking for. It sounds very scary, but we've been assured that it is actually a very simple procedure that takes only about 45 minutes. Then the hospital stay is only a day or two. There is risk of malfunction and or infection which might require more surgery, but many people don't have any problems with their shunts. The shunt shouldn't keep her from being able to do anything in life. We probably have all met someone with one and never knew it. Still ... we'd like to avoid it if possible.

So leaving Emma tonight with all this new information has me wondering ... Will it ever stop? Will we ever have a time without tests, procedures or doctors appointments?? I doubt it. The good thing is that despite all these 'things' she will be able to live a normal life in between all those tests, procedures and doctors appointments. I guess our favorite phrase would be fitting in this situation, too .... 'Oh, Emma!'