Rare

Today was another hectic day at the NICU.  They were looking for babies to move out of room 2, I think because they need babies to come into room 2 to make space in rooms 3 and 4.  Matthew likely would not be selected for room 1, but I guess stranger things have happened.  Perhaps some of Matthew's room 4 friends will come join us soon.

I had to change him after I did his diaper today because, once again, Matthew fooled me.  Just as I was putting on his butt cream he again peed all over.  He does this every time I put on his butt cream.  The bright side was that I got to pick out a new outfit for him (but I didn't have another sleep sack for him, so he got a blanket instead).  I put on one of his hats and onesies that he got for Christmas.  The hat was a little big on him, but it just looked so cute I couldn't take it off.

The Good

Matthew had a stable day today.  He took bottles this morning and late afternoon (he is on bottles around every other feed), and we did our first breastfeeding session today for his 2pm feeding.  We did it at 1:30 as a "meet and greet" (as Lynn calls it).  He still got his normal 2pm feed after that.  Matthew did very well.  He latched on almost immediately and did a fair amount of sucking.  We were all very proud of him.

He got measured yesterday and he is almost 18", which is very exciting and a big jump.


The Bad

Matthew continues to need respiratory support.  The rash is slowly getting better.

I met with Matthew (and Christopher's) geneticist today.  Matthew's carnitine levels are still high, so she wants to test him for something called cpt1, which is another metabolic disorder.  She says it would be "extremely rare" for him to have both this and 3mcc, to which I replied that we have been on the rare side for the past two years.  The worse part is that it takes a month to get these results back, as they need to get sent out to Baylor University.  I had asked if the whole exome sequencing we did with Christopher would have picked this up.  It would have.  Unfortunately we apparently didn't do whole exome sequencing, as we had thought.  It was ordered but never done.....

The Ugly

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