UPDATE (2/14/13)
Happy Valentine’s Day! Today Beckett got all spiffed up with a bath, combed hair and a new Valentine outfit for when daddy came! He was just the cutest little thing. I have to brag that his nurse today said he looks like a Gerber baby. What can I say? Beckett didn’t have a lot of changes today. He just had his normal physical therapy. Yesterday however they changed multiple things. They weaned his methadone, and praise the Lord he tolerated it extremely well. They also decreased his Vapotherm by half a liter and decreased how long they feed him. He now gets meals over an hour as opposed to an hour and a half. This allows his belly to actually feel hungry as well as need to digest more food in a smaller amount of time. He has been doing really well with all of these changes.
Yesterday morning he did have a very small amount of what looked like blood in his stool. They sent it to the lab and sure enough it was. This could have meant a number of things. He could have a fissure somewhere in the end of his digestive tract or he could have what is called Necrotizing enterocolitis or NEC for short. The doctor looked at his bottom and couldn’t see anything, but said it is possible a fissure could be a little higher up on the inside. They did an x-ray of his abdomen and it came back negative. Yeah for no NEC! This would have presented a whole new set of “problems”. Praise the Lord! And we haven’t seen any blood in his stools since. They also gave a little strap/splint for his thumbs yesterday because he always holds them in his fist. This is one of the things we are working on in therapy as well as when I do stretches with him. At least the strap doesn’t bother him.
Considering all Beckett has been through he has a very calm demeanor, and for the most part is very cooperative. Maybe it is because all he has been through and these things don’t phase him anymore. So the past two days have been very good for him. Tomorrow they are having an ENT doctor scope his vocal cords to see what they look like and if there is any movement. Beckett has to have working vocal cords to protect his airway from aspiration when eating. This is very important, as they would like to try feeding him orally as soon as they can, but we have been warned that most heart babies take a long time for their vocal cords to start working again, and an even harder time eating by mouth. So we are preparing for Beckett to possibly struggle with this.
Anyway, today we got to spend time celebrating Beckett’s first Valentine’s Day! How precious and exciting for us! His nurse tonight even set up the room with sheets like a photo shoot and took tons of pictures for us. She may have loved it as much as we did. It is so great to have people taking care of our son who truly care about it! So, what a great day for expressing how much love we have for him! Happy First Valentine’s Day Beckett! Mommy and Daddy love you!!
https://heartofbeckett.com/ — with Jonathan Rupp at St. Vincent Women’s Hospital.
Heart of Beckett 