Thursday, January 1, 2009


Today we arrived to Riley's room, to find him in his crib and fussy. Little Riley doesn't like being alone when he's awake. Who can blame him? 3 month olds like some entertainment. He's popular though and nurses from all over gladly come in to give him some company when we are not around. I of course scoop him up out of his crib and sit down with him. about 5 minutes later, a nurse, filling in for his nurse (and who we really like) came in to do her assessment, which always includes listening for bowel unsnap the sleeper and UGH...his ostomy bag had leaked....ALL.OVER.HIS.BROVIAC. And when I say that, I don't mean the tube part. But then END of it. Where the IV line connects, and bacteria can enter. Insert lots of action here. I put him in the crib. Jay grabs alcohol wipes. The nurse goes to get new tubing, hub, clave, to replace EVERYTHING that connects to his broviac. So clamp it off, and remove the old, clean the end of it very very VERY well, and replace with new. UGH. Needless to say, we nicely asked that his broviac NOT be in his clothes or dangling over his ostomy site, to his regular nurse. Certainly don't want an infection at this point.

He tolerated his continous tube feeds like a champ. Dr. Logan is just as pleased as he can be with how he's doing and is shocked all at the same time. He too, has told us, that after hearing what transpired at Duke this past trip, that he was afraid Riley wasn't ever going to make it home. Tomorrow we transition to more of a bolus type feed with him. he will get a continous feed for 3 hours and then have an hour break. Then the cycle will be repeated. Another great step towards coming home. Which he actually gave us a guesstimate (and not at our asking) of how long he thinks that will be.

Riley's bottle feeding orders right now say "do not wake him to feed". So he pretty much always misses his 2am feed because he sleeps through the night. Today he slept through 2am and 6am. 10am the speech therapist was there and he did TERRIBLE. That was pretty much her words. He was gagging and he vomited and it just went very poorly. I brought in a DR. Brown's bottle to try with him today, as he didn't do great with his feeds yesterday either. The nipples they have there are latex and his paci is silicone so I thought perhaps it's a texture issue. So we started with that at 2pm. He did fairly well with that, but still very frantic at times. At 6pm,I had the thought to squirt some tootsweet in his mouth, then pop that bottle in (still the Dr Brown's) and sluuuuurp went 15cc!! 10 pm tonight, the same trick and the same result. Hmmm....I'm hoping we are on to something. We'll see what happens. I am in a big hurry for him to take more by bottle, not only because that is close to coming home but because there is a LOT of my milk being wasted in his pump system and that makes me ANGRY. The smart ones take the amount of milk he gets per hour x 4 hours and pour ONLY that amount in. The not so smart ones...(which are obviously people who have NEVER had to pump milk) just pour random amounts in and after 4 hours (when they HAVE to get rid of the rest) pour the excess down the drain. A few cc's is one thing but you should have to pour any away. If I have to make a note myself to put on that pump I will but I will NOT have 4 OUNCES of milk wasted at one time again. Period.

Peek a boo big brother style

Hey Travis..what you doing over there?

All eyes on his brother

twinkly eyes


Anonymous said...

I can see it happening baby'll soon be coming home. Keep up the good feeds sweet one! Lindsey, love the pictures, thanks for sharing. Hugs, Pauline

Anonymous said...

Lindsey I am very glad to hear Riley is doing so well have you tried the soothie bottles they are made by the same people who make his pacis and the nipples are identical to the pacis it might help because it is familiar just a suggestion

Anonymous said...

Lindsey, love the pictures! Maybe your trick you discovered will work on the bottle feeding with Riley. He's a stinker, isn't he? But so sweet! Glad to hear such good news, Love, Debbie

Anonymous said...

Look at Riley holding his head up! What a big boy. Sweet pictures!

Anonymous said...

Lindsey, The pictures are so cute. It's so adorable how Riley follows Travis with his big beautiful eyes. He doesn't want to miss anything. I guess if you think about it, Travis is good therapy for Riley also, he learns what he sees. It is just so cute to see them together. Travis certainly is a wonderful big brother, and so loving towards Riley. You are truly blessed. Glad Riley continues to do well with his feeds. Practice makes perfect, and they will find a nipple that he will take to and enjoy.
Have a great weekend with your family!
Love and Hugs to you All, Dale

Anonymous said...

Thanks for the kind words Lindsey, I really appreciate it. It makes my job worth it when I have the confidence of the parents & know they appreciate everything. I peeked in on him today and we had a 10 minute conversation (me talking & him cooing & smiling). He sure does love to have someone to look at & talk with! I am glad things are finally going in the right direction. I love the photos, BTW.

Brad, Kellie, and Carter Myers said...

Join us in the land of feeding frustration... we actually had a meeting with Dr. Goldberg and his team yesterday about G Tube placement. Not our favorite thing to think about, but it's the only thing keeping Carter here. Keep us posted an we'll do the same.

Those pics are awesome, especially the one of Travis's profile with Riley over his shoulder. I see that framed above your fireplace.

Miss you guys

Fer said...

Lovely pictures. I will be praying for Riley so he can be home soon.

Cindy said...

sooooooooooo nice to see the boys together...can't wait until the pics are from home...


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