NEC Update - March 10, 2014

The surgeons looked at Ryan's incision and it's healing well and doesn't need to be packed anymore.  It sounds like he will be going home with his ostomy bag and will go back to the hospital in a few months for the surgery to get his intestines put back together.  Unless the baby is having a problem with his digestion, it's preferable to wait until they're a few months older before putting them through surgery because they'll be better able to handle the surgery.  Right now, his food goes through the digestion process up to the intersection of his small and large intestion and then is diverted out of his body into a bag.  Some babies have a problem with dumping, which means that the food isn't digested very much and is just passed through the small intestine and into the bag.  If a baby has problems dumping, they'll put the intestines back together sooner.  His lip and nose surgery will be between 3 and 6 months, so the surgeons will need to coordinate the timing of the two surgeries.  I asked if they could be done at the same time to minimize the amount of times under anesthesia and they said no.  There would be risk of cross contamination because the surgeries are on the opposite ends of his body.

In other news, he likes being in his open crib and getting to snuggle with his cute blankets and his monkey.

Lots of Good News! March 6, 2014

We've gotten a lot of good news about Ryan in the past few days.  He’s 4 pounds 12 ounces and is rapidly outgrowing preemie clothes.  He’s wearing newborn clothes now!  They're continuing to wean his breathing support and he's on the lowest level of breathing support.  He's been breathing by himself and is just getting a little pressure through a nasal cannula (prongs in his nostrils) to make sure his smaller airways stay open and he's breathing room air and doesn't need any additional oxygen.  He pulls the prongs out of his nose a lot and does fine when they’re out, but he would get tired if he had to do it without any help for a long period of time.  He just needs to grow a little more.

Now that he's feeling better and doesn't have the tube in his mouth, he's been a different baby.  He's more comfortable, alert and interactive.  It's so nice that he doesn't have to deal with the irritation of having a tube down his throat.  Every time they moved him or turned his head, it would irritate his throat.  I know when I've been intubated during surgery, my throat hurt for a few days after surgery.  I can’t imagine having a tube in my throat while I was awake.

He's very curious and watches everything around him. When I was holding him yesterday, instead of going to sleep, he kept his eyes open and looked up at me.  He even leaned his head way back so he could see me better.  So sweet.

His NEC infection seems to be gone. He's off of the antibiotics and they've started feeds again.  For two weeks after the infection, he could only eat via IV.   It’s called TPN and it has all the nutrition babies need.  They’ve been weaning him off of the TPN and gradually adding breast milk by feeding tube.  He’s on almost all breast milk and has been tolerating it well.  The doctors anticipate starting to try feeding by mouth on Wednesday or Thursday.

The physical therapist comes by routinely to observe all of the babies.  She said that Ryan is doing well.  He loves his pacifier and she watched him suck on it.  He can get a good sucking motion and hold it in by himself.  Most babies with clefts and a lot of newborns without clefts can't get the suction required to hold a pacifier by themselves.  Babies with clefts can sometimes get compression but not suction.  Ryan has a strong sucking motion and has a rhythmic sucking pattern, which is a good sign neurologically.  

The physical therapist and doctors all repeatedly comment about how strong he is.  He pushes himself up and can lift his whole torso up.  He’s also good at self positioning, which is very good for his age.  The nurses put him in his bed on either his stomach or back and face his head a certain way, alternating sides so his neck muscles don’t get tighter on one side and so he doesn’t get a flat spot on his head.  When he was intubated, they positioned him so he couldn’t move and disturb the tube.  Now that the tube is out, whenever he doesn’t like the side they put him on, he’ll move and switch sides until he’s comfortable.

The nurses and doctors all love Ryan and talk about how sweet he is.  He loves to be held and talked to and touched.  He’s self soothing and very easily soothed.  His nurse yesterday said that you can turn his whole world upside down and then touch his back or pick him up and he immediately stops crying and is happy again.  She said it’s very endearing.