1/23 - Reality Check

Today Leo had 2 appointments. First I'm going to talk about our trip to Peoria to see the special pediatric eye doctor. Terry took a half day off from work and we left at 12:20 for our 1:40 appointment. Leo's neck is not strong enough for a normal car seat so we rent a "car bed". Leo lays flat in it horizontally across the seat.  Most of the time he does pretty well and just sleeps in it. With about 20 minutes left of our 1 hour and 15 minute trip he started getting pretty agitated and with about 5 minutes left his oxygen started desaturating and setting off the alarm.  I started to get really worried and took him out of the seat while we were still moving (a no no, I know).  I was doing our normal head tilt and back pats to try and bring his oxygen up. It wasn't working and as Terry was pulling into the eye doctor parking lot I was telling him to get the oxygen out. The oxygen quickly brought Leo back up to 100% from him bouncing around between the 60 to 80 percentile. However, whenever we would remove the oxygen he would quickly dip back down. One time he got as low as 58 and was literally turning blue.  I yelled for Ter to get the oxygen back out quickly! We did this yo yo routine for 20 minutes and by that point we were 10 minutes late for our appointment.  We decided to oxygenate him back up to 100 and make a run for the office in the sub-zero temperatures. We figured if this kept up we needed help and there were doctors inside even if they were eye doctors.

We made it in the office but by the time we got there he was setting off alarms again and we had to immediately sit down and get him back on the oxygen. Terry sat with him while I went to check in. The stupid lady at the desk had the nerve to point out that we were late. I informed her that the loud beeping coming from the corner was my baby and he was not doing well so I would appreciate if she could get us a room ASAP. We then got a room pretty quickly and Ter and I just kept snuggling him and giving him oxygen.  He eventually climbed back up and was able to maintain on his own.

We think the desaturation was caused by him getting upset and producing extra mucus that pooled in the back of his throat and caused him to choke. The whole incident was a rude awakening about how fragile our little guy really is.  I think Ter and I were both getting a little too comfortable.  For instance, we left the house today without the oxygen or the suction machine. Thank God I remembered the O2 when we were half way down the street and Terry went back and got it. Otherwise we would have been doing CPR in the parking lot :(. We helped the nurses give him oxygen and bring him back like this countless times in the hospital, but this was the first time we opened the oxygen since being home. I am very grateful we pushed the NICU doctors to let us have it and it worked! I'm also grateful we were both there to help each other. It would have been extra scary on our own.

So now onto the appointment.....this was just a two month check up for Leo's eyes. The good news is they still do not find anything that would prevent him from seeing. For instance, all the nerves appear to be in the back of the eye, his pupils respond to light and his eye pressure looked good. We can't really tell what he can actually see until he is old enough to tell us. It feels like he looks at us and responds to our faces, but it is hard to know for sure. We do think he has issues moving his eyes from side to side. This could be attributable to the same cranial nerve issues causing paralysis on the left side of his face.  We basically just have to wait and see, but for now the doctor thinks he looks good. They dilated his eyes and we didn't leave the office from out 1:40 appointment until after 5:00. We put artificial tears in his left eye every 6 hours since it doesn't shut and she was pleased with our care and just said keep it up.  His left eye appears to be much larger than his right, but this is just because of the nerve issues making his left eyeball more visible.  The doctor measured his eyes and they are the exact same size.

We recently had Amy Coon take pictures of Leo and the asymmetry in his face is really evident in this picture. Ter and I both feel he doesn't seem this unbalanced in real life, but maybe we do not focus on both eyes at the same time. I think he is a cutie.  This is turning into a super long post so I'm going to save more pictures from our session with Amy and an update about our 1st appointment of the day until tomorrow. I'm hoping tomorrow will go back to boring so I will have nothing new to write!