Tuesday, December 30, 2008

the mystery that is Riley

Travis got to spend a FUN filled day at Mama's house (Pauline for those NOT in the know), playing at the water's edge and doing all sorts of perfect little boy things. He spent the night there and will likely have to be dragged away kicking and screaming tomorrow! Guaranteed Pauline sleeps REALLLLY good tonight though :o)

Little Riley....what should I say about him? How about...he is still baffling his medical team. Not to the degree he did his surgeon a few weeks ago, but he's still very much a mystery. First of all. Yesterday they started his milk feeds back. He gets them at 10-2-6 every day, around the clock. When I got there this morning, his overnight feeds (2 and 6) went great the nurse said. Occupational and speech therapy were coming to work with him at his 10am feed. I was there. They give them a bottle with 25cc for them to have plenty to work with in case he dribbles some. Well he didn't dribble not one drop and after working with it for a few minutes, he fell sound asleep, and turns out, he took 10cc!! At his 2pm feed, we applied the tips they gave us and he took 15 cc! this was completely unexpected, and so they "limited" him to 5cc for now. Well, at 6pm and 10pm tonight, Riley made it known, that he was NOT done after 5cc. Now, don't get me wrong. He makes faces the ENTIRE time he drinks. And if someone in the room is talking or walking around...FORGET IT. He's too nosy to concentrate on that bottle in his mouth. He kind of plays with the bottle nipple and chomps on it a bit and then he sucks really good for a few moments, and then repeat. So here we were expecting to struggle just to get the 5 cc down, and the little piggie says "give me more food"! Hoping tomorrow, that they are feeling a bit more generous in the bottling department. So he took at his largest feed today, 15cc...that is a half ounce. A full feed for him, at his current weight, is a little bit shy of 4oz, or to be more precise, 117.5ml (a ml is the same as a cc). So...a long way to go, but at least he's interested.

So that is a little baffling as no one expected that behavior from him. but MORE baffling is that darn D-tube he has. Or what is SUPPOSED to be a D-tube. This tube is supposed to run from his nose down through his stomach and then out into his intestine, into his duodenum. Well, when they did that fantastic abdominal ultrasound yesterday, it showed that his D-tube may NOT be a d-tube anymore...meaning in his duodenum. It appeared that it MAY be in his stomach. It's hard to tell though as it could be coiled up in his stomach. OR it could be in intestine like its supposed to be and the intestine are just laying around his stomach some so that it makes it APPEAR to be in his stomach. Hmmm. The issue? Regardless of where it is, he's tolerating it's placement and his feeds just fine. BUT if it IS in his stomach...that is FANTASTIC!! that means that for some period of time now, he has been receiving his feeds into his stomach and isn't refluxing it back out. Yes he refluxes, but he could easily be spewing vomit 10 feet across the room kind of refluxing. And if it's in the stomach, they can put a smaller/friendlier type of feeding tube down his nose and take that one out (which will also get rid of the coiled up waste in his stomach). However if it's still where it is supposed to be, and they pull it and put in a tube to his stomach, then he may begin to NOT tolerate his feeds and before we can even get to full feeds, we will be set back. It's just mind boggling the things that can come up with these kids!! so...they are in a "hmmm what should we do with him" kind of mode right now, which is funny and frustrating at the same time. not towards them, just once again, it just shows how there are no perfect answers.

Oh, and tonight, while taking a bath, Riley pulled the drain plug in his little tub and it wasn't noticed until I heard the "dribble dribble" sound of the water draining on the floor. yeah. BIG mess. HUGE. Ugh. That kids trouble I tell ya!

This picture is for Rachael...she just loooooves this outfit!haha (seriously, she hates it. Turns out, yellow outfits are not flattering to yellow babies)

ahhh feel the sun on my toes

Little baby on a big ultrasound bed

Do you get the impression Travis would rather be ANYWHERE else on earth than sitting RIGHT in front of the play therapists face?? This picture makes me laugh till I cry.

Riley says "hooray! My brother is holding me!! He's the BEST"

And I'm not sure who caught who, but Riley had some visitors while he was outside sunning his toes and I just LOVE this picture!


Brad, Kellie, and Carter Myers said...

We are extremely jealous of Riley's newfound love for the bottle, but the pic of him and Travis made everything much better. Glad everything is going well for our little friends!

Brad, Kellie, Lucy and Baby Carter said...

I'm telling you they get on the phone with each other at night and plan what kind of mischief they are going to cause the next day. These boys are going to keep us super busy :)

Rachael said...

lol that picture is hillarious. I will say Riley looks less yellow.

Anonymous said...

Riley, You just keep baffling the doctors, and do it your way! It has always worked before, why not now.
Lindsey, this little guy is going to give you a run for your money when he is totally better. Love the pictures, and the one of Riley and Travis is just adorable of both boys.
Enjoy another great day, and I am wishing for you and your beautiful family, A Very Happy New Year, filled with wonderful moments and good health for all.
Hugs and Blessings, Dale

Anonymous said...

More great news on baby Riley...so wonderful. Yes, Travis and Mama had a great fun play day...same for today!! Love all the pics! Hugs to you baby Riley, Pauline

Anonymous said...

Loved all the pictures! Riley is just so precious. He's such a special baby to us. As I am sure, to a lot of other people as well. :) Keep it up Riley. We are cheering you on. Thinking of all of you, Love, Debbie and Gary

Anonymous said...

Lindsey and Jay , your strength amazes me, you have truely been a family sticking togehter for the benefit of both of your children, even in triedness and sickness you put them first. Tonight as i sit here i pray that God will continue to bless all of you, giving you strength and knowledge you need. We never understand all things in our life, but who knows who you are helping even now by the things you have shared here.Praying for continue health for all. Doris


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