Memories

So last night was our big Polar Express ride.  About 20 minutes in Christopher decided to declare that "this is boring!"  He even told that to our cart guide - Spruce Evergreen.  He changed his tune once they handed out the hot cocoa, which was his first time having it.  He also was a big fan of the sugar cookies that came after.  Then he asked, "What else do they have?"  He's a tough kid to please.  I think he enjoyed it though - but Christopher plays it pretty close to the vest.  Hopefully next year we are able to take Matthew - of course that will depend on how cold/flu season is going.

Today Sean and I were out in the hallway between rooms 3 and 4 while Matthew was getting his eye exam (more on that below).  We saw parents leave Room 3 and go to the Caroline's Room (where we were with Alexander in his last moment) with a brown paper bag (the same one we were given after Alexander passed).  Earlier in the morning I had seen the priest leaving the room and last night Sean saw a lot of family there.  Sean and I both commented how we wanted to say something to the parents, but of course what can you even say?  And would we have cared if someone said something to us in that moment?  It unfortunately was a haunting reminder of what we had been through.


The Good

Today was a stable day for Matthew.  Orly went down by 1 on his pressure, and by 1 more on his breaths.  He has been tolerating the new feeding schedule, and has gained a good amount of weight in the past few days.  He was able to be on fairly low oxygen for a good amount of the day, with some periods of needing more.  The biggest news of the day was his first eye exam.  This is something that is a big deal for preemies as the eyes don't start developing until weeks 14-16 of pregnancy and continue until weeks 38-40.  When babies are born before that, there is a high risk of issues with their eyes.  Before his exam Matthew needed to get eye drops that dilate his eyes.  I helped Lynn with the drops (she held his eye open and I put the drops in).  So I have done diapers, temperature, and now the drops.  I'm pretty much a doctor by this point.

The eye doctor explained what she was going to do - which involved prying his eyes open and moving the actual eye around.  She said she asks parents to leave for the procedure - you don't have to ask me twice.  I still have bad memories from Clockwork Orange.  The good news is that Matthew's optic nerves, while premature (as expected) are fairly well developed.  This means that Matthew is not going to have severe eye problems (such as blindness).  Lynn was really happy with the news, as was Orly.  We, of course, are relieved.  Lynn said Matthew gets an A+ for eyes today.  In terms of breathing he's about at a C!


The Bad

Matthew's NIPV settings are still higher than we would like and continues to suffer from WWB (wimpy white boy).  He is very particular about his respiratory things.  He will sat high and then if you go down 1 % on his oxygen he gets upset.  Hopefully he is able to wean these settings down.  When his pressure was taken down the past two times he seemed to have more difficulty breathing (again, very particular).  Matthew also looked a little puffy today, but Orly wants to see how Matthew "evens out" in terms of his weight, as the diuretics were causing them to have to add sodium to his diet and put him into the vicious sodium cycle.


The Ugly

No Ugly for Matthew today - fingers crossed it stays that way.