Sunday, March 29, 2009


I got to give Nora a bath today for the first time (not her first bath, just my first time bathing her).  She is doing well--no changes, but she can't wait to get to eating again--one more week until the treatment course is over, then no more antibiotics and she can get a full belly again.  She feels so much bigger--she's 3 lbs 14 ounces right now.

Ryan looks good too.  He's back on the CPAP, but doing better on it than he was on the cannula yesterday.  He started breastmilk again--same as before 1 mL per hour.   I pray he tolerates it this time.  He was doing well when we left--no leftover milk in his belly and he was pooping so much that he now has a itty bitty baby sized ostomy bag on his belly.  we should be able to hold him and/or kangaroo with him tomorrow. He's 4 lbs 1 ounce right now.

Ryan may be dealing with something called short bowel syndrome--that's the expectation from the surgeons since he lost half of his intestines due to the infection.  They expect he will need partial IV nutrition to maintain his nutritional needs.   I pray he does much much better than expected and surprises everyone.  Basically, with the amount of small intestine that he has remaining, it's difficult to say how he'll do--some kids do great and their intestines somehow adapt--others don't do as well.  With his extent of loss, he will be slow to transition from the IV nutrition to oral over months and months--but the key is getting him on as much nutrition via his gut as possible (either eating by mouth or via a tube into his stomach) b/c longterm IV nutrition is not good for the liver--and the sooner they start putting food into the gut, the more likely the intestines are to adapt.  John and I have been reading up on this quite a bit--some of it is hard to read and some of it gives us hope.

1 comment:

  1. Today we commented on God's placement of seeds on the strawberries we were eating -- perfectly symetrically on our strawberries and on the the other ones in the rest of FL and CA and GA... and everywhere else. He also knows all about Ryan's nutritional needs and Nora's. The good news is He is God and we aren't. It is all in His perfect plan. Aren't we glad! Blessings upon all five of you. Lots of love and many prayers continue in your direction from the Florida Botts