The SHORT version...A long day, but an excellent day. No changes in Eden's brain or eyes. She weighed in at 8lbs. 1oz. (with her clothes on). Growing like a weed...God is sooooo good!!
The LONG version...
Today was a long day but a really good long day! It started about 7:20am when we left for Iowa City. It's about a two and a half hour drive so we had to get going. First thing on the agenda was an MRI @ 10:45. Our paperwork said the MRI would take about an hour and knowing how still you have to lay for an MRI I was feeling so concerned that Eden would have to be sedated. When we got there I made sure to nurse her ahead of time so she was good to go for a while. When they called us back I asked if she was going to have to be sedated and if it would help for her to be swaddled. The lady responded naunchalauntly by saying, 'oh no, this will just take a couple of minutes.' I was so thankful (and a little irritated that we weren't told this ahead of time). After they got her situated in the machine they took all the pictures they wanted and then realized they didn't turn out because she was screaming the whole time. I went out to the waiting room and grabbed her paci and that worked like a charm. One of the workers laid on the bed with her and held her head still with some head phones over her ears to protect them from the sound of the machine. It was super loud! Even I had to wear ear plugs! When we were all done there we headed to our apt. with Dr. Lonnie Bilyeu (a PA) to discuss the MRI. She didn't feel there were any changes in her brain since birth but she did mention a cist that we hadn't heard anybody talk about since before she was born. When we were in Mason City for an ultrasound later in my pregnancy, Dr Hwang had mentioned a small cist but when we asked him about it he said it was the least of his worries. We never thought another thing about it and actually even forgot about it. When the doc. mentioned it she just said she wanted to ask the surgeon about it because the color of the fluid in it appeared to be different then the color in the ventricles and it shouldn't be that way because they both contain the spinal fluid so they should be the same color. The surgeon had just gone back into surgery so she said she would have to call us later in the afternoon (when she called us back she said the fluid looks like a different color because the fluid isn't moving around in the cist like it is in the ventricles). They are just going to watch the cist and make sure it doesn't grow. It hasn't grown since our stay in the NICU so they aren't really concerned about it. The doc measured her head and it is growing steadily so a very good appointment there for sure!! We had about an hour and a half to kill and needed to eat some lunch so we left and got some Arby's! When we got back to the hospital we had an apt. with Ohpthalmology (eye pediatrics). At first we saw a few residents before seeing Dr. Arlene Drack. The residents did a bunch of shining lights on her eyes, etc. to see how she reacted. It was obvious she is seeing out of both of her eyes. Then came the big test...they put some metal things on her eyelids to hold them open so they could scan her eyes and take some pictures of the back of her eyes. It was incredibly interesting to see the pictures. We hadn't seen her original scans from in the hospital either so it was all new. The whole thing only took about 10-15 minutes but Eden cried the whole time. I didn't want her to be in there alone so I went in with her and it was hard to watch! They just kept reminding me that she couldn't feel it because of the numbing drops. My poor baby! We called Brian into the room so Dr. Drack could explain it all to us. Her left eye is still completely healthy. The doctor doesn't feel like that will ever change, however on her right eye she still has the same lesions that were there when she was born. They also talked about some patches that are all over her retina. These were also there when she was born. They have never seen anything like it and really don't know what they are. They told us they could be lesions that were starting to form that never did, or that may still form...whatever they are they said they are really far off in the peripheral vision
so they shouldn't ever effect her vision anyway. As for the lesions that are there...they are right next to the optic nerve. There are two or three (I can't remember). They don't even think these should effect her vision except by small chance. It is possible that one of the lesions will block some of the nerves that are trying to get from the macula (the central part of our vision) to the optic nerve. This would cause a blindspot and maybe cause her right eye to become lazy. They said then she would just wear a patch on her left eye to try to strengthen her right eye. Dr. Drack offered us some other possibilities of what might be going on with her. She thought maybe she just has a mild case of the Aicardi Syndrome (she has only seen a couple cases in her 20 years of service and any she has heard of all have lesions on BOTH eyes), she also thought that there might be a couple other possibilities that have a much better outcome (I am not very capable of explaining these :)). Only time will tell as we watch her develope!
After all this we headed for home. We had to make a quick pit stop to feed Eden but we were home in time to put the kids in bed by 8! What an amazing and good day! It couldn't have gone any smoother! God is soooo good! We will be going back for a day just like to day (all the same apts. at the same time) on April 19th.
UPDATE on CMA test: When Eden was in the NICU they did a test called Chromosomal Microarray Analysis (CMA). We just got the results back recently. They said it didn't determine anything as far as a syndrome, etc. There was however a duplicated DNA on chromosome 1 and 3. This doesn't necessarily mean anything. It is very possible that if Brian or I were tested it may show we have this same thing. If one of us did have this, and since we are 'normal', that would rule out that it is even a factor in what is going on with Eden. We would have to be tested to determine this obviously and it isn't covered by insurance. I doubt we will do it since it isn't going to diagnos Eden with anything specific anyway.
