Wednesday, May 20, 2009

This kid is a ROCK STAR!

Yeah yeah, I know that sounds so conceited but seriously...Riley Rocks.

How do I know? Well because the Duke doctors said so of course! Riley and I made our first solo adventure up to Duke yesterday for his monthly checkup. He slept from about 30 minutes into the ride, all the way to parking in the parking deck. Riley's current weight?? 14lbs 14oz!!!! Oh yeah, that's right, you read it correctly!!! The GI doctor at Duke actually FUSSED at the nurse because he assumed Riley must have been weighed with his clothes on. But NOPE, naked baby, no diaper, and emptied bag...that weight is ALL Riley. He is THRIVING on the new Elecare formula. And he is eating every food they say he can and just tolerating it all like a champ. So far he's had:
Rice Cereal (eats 3 tablespoons, 2x a day)
Green Beans
Summer Squash
Butternut Squash
and in a couple days, we can try apples
I am making his food at home, and while it takes some effort, it's all worth it.

The GI doctor was truly just amazed. His words were this (he is retiring next month so I'm sure he was being especially sentimental): babies like Riley...these are the miracles that we hope for. Babies like Riley, who we as doctor's don't expect to survive, and yet survive trial after trial, they are miracles. He shouldn't be here, yet here he is, smiling, holding his feet and gaining weight and eating like a champ. This is the absolute BEST outcome that doctors hope for when dealing with a baby who was sick like he was. All too often, those miracles don't happen. This baby has had a lot of prayers and everyday and everything he does, is a miracle

>insert a speechless mommy here<

Once I regained my composure, I asked him a few questions we had for him, the details of which I'll spare you, but the answers to those were very very encouraging as well. The visit ended with a conversation with the nutritionist who said "lets go for apples!". I asked if his tolerance of these foods so far were really encouraging or if we were still dealing with really "safe" foods. She said with the addition of peaches to his diet last week, that we had left the safe zone behind and were now in the moderately safe foods. Wow. They did say they probably would not add many more foods to his diet for now, but they were very very pleased with his tolerance so far. I then got a quick, stern lecture on how NOT to let my guard keep a very close eye on his output and still remember that everything that passes his lips could potentially cause him a very serious reaction. I laughed and said, that while my guard certainly wasn't down, I am no longer losing sleep over every new food, but that was about as least cautious as I could see myself becoming.

The doctor discontinued one of Riley's meds, with the understanding we have to have a lab draw in 2 weeks to make sure he can stay off that med completely. He had another med d/c'd last visit. It's nice to shorten that list.

While we up at Duke, we had a couple other little tasks to take care of. First (and we actually did this BEFORE his appointment), we dropped off some new toys for the children. These were from our friends Scott and Michelle, who have lost children, and buy gifts for those children every year. I had 3 bags full of new toys to deliver for them. The lady asked me did I have a particular area I wished the toys to go to, and I immediatly said Bone Marrow Transplant program. I didn't realize I would be asked this, and while I didn't know what Scott and Michelle would have wanted, I know the Bone Marrow Transplant program is an area near and dear to their hearts. So thanks to them, some little children are going to be getting some shiny new toys to hopefully help brighten their stay very soon.

After our appointment, Riley and I ventured to the cafeteria first...Mommy needed a drink and I decided to go with a Mountain Dew and Kreme filled Krispy Kreme donut. While I sat at the table and ate my snack, I shared with Riley how EVERY.SINGLE.NIGHT that I was up there by myself, when I would leave the hospital late late at night or the wee hours of the morning even, I would go by the cafeteria and get a MD and donut (always a Kreme filled) and eat it on my way through the tunnel to the parking deck. A lot of days, that was dinner...and it gave me a little boost of energy to drive back to the Ronald McDonald house, pump and blog real quick before bed. I'd say my story was really interesting to him, but I think his interest was more about the donut going to and from my mouth.

After my snack, we headed up to the fifth floor (this is where the nicu, picu and pediatrics are) and went to the Ronald McDonald House family room (easy mac brad? kellie?), to drop off some pop tabs. The lady was overwhelmed by the multiple jugs and bags of pop tabs I left with her. Pop tabs you say?? Yes, soda can pop tabs are recycled by the Ronald McDonald house for money that they then use to help families like ours. You can read about it here. If you would like to begin collecting pop tabs, we would GLADLY deliver them to the RMH of Durham for you. We would be SO honored if people helped out the house in this way. There are TONS of other ways you can help out the RMH, most of which can be found on their website, linked to on the side of my page.

After dropping off the pop tabs, we went to the ICN to visit with nurse Rachael again before heading back home. I fed Riley his solids while we waited for her arrival and when we left, he literally was asleep in van before we got out of the parking deck and once again slept till we pulled in the garage at home. What a good boy he was for his mommy! (of course then he wanted to stay up all night, but that's a different story, haha).

We also saw one of the doctors from infectious disease while we were up there and she was just so thrilled to see Riley. She said that it is so rare they ever find out what happens to patients they consult with. Considering she last saw Riley in December, when he was in the 9 pound range and had a ruptured open incision that was pouring out stool....she thought he had come a LONG way to say the least. was a good visit. One which just made me feel so proud of Riley and how far he's come and what a fighter he is. So proud to be his mommy and proud to be walking around with a living, breathing miracle. Riley and I had one more moment together, the details of which I prefer to keep private, but the short story of it, is he and I sat side by side and watched his old friend lift off the roof of the building and fly away.

So if your not tired of reading by now, I'll share a little more about little Riley....
*He's 7.5 months old.
*He weighs 14lbs 14oz
*He is 25 and 3/4 inches long
*He is a jumping fool in the doorway bouncer or the stationary bouncer. FOOL I say. It's hilarious. The little videos I posted do NOT do it justice.
*He is rolling from belly to back at will now (he's been rolling this way for a while, but they were more like accidents).
*He has figured out how to roll from his back to his belly (roll bag to contend with)
*He is sitting up better and better and is really beginning to use those stomach muscles now(which is AMAZING)
*He has 2 teeth about to cut through (you can feel their sharpness with your finger)
*He loves his solid food, but does NOT like puffs. He likes to play with them, NOT eat them. He makes a bad face and tries to spit them out and he will continue to play with them after eating one, but won't try and put them to his mouth anymore. I think it's an aversion to the texture. and that's ok.
*He can say Mama and dada, but I would gladly trade that if he could only say Travis or something close to it because Travis SO desperately wants Riley to call him. I try and tell him that he's just making sounds and some of those sounds that sound like nothing probably ARE calling him. He also seems to say "hey".
*His favorite thing to "say" is "Aye yi yi"
*he's still a mommy's boy and i LOVE it! :o)

How about some pictures?!

See...I am looking chubby now!

oops, I flopped over a little

I'll grab my toe and pull myself back up (he can only do this if he's just flopped a little to the side)

See how slobbery my shirt is?

That is because of THESE

Yes...I'm really THIS happy

apparently, my kids look crazy (seriously!! look at them both!) a small word for such a big feeling

in the jumper!

the jumping bean


Anonymous said...

Oh Lindsey, This post sure brought tears to my eyes...every day that I get to hold baby Riley and care for him, I'm reminded of just what a living miracle Riley is...Praise God. Love the pics of Travis and Riley precious. I enjoyed every moment of being with Travis and Riley today. Love to you all, Pauline

brad.kellie.carter.lucy said...

I am so happy to hear this wonderful news! One day, Riley will be calling cheering Travis on at the ball field :)

Anonymous said...

I couldn't sleep so I decided to get on the computer and it was such joy to your post. I agree with Pauline, they are sooo precious!!!! My heart is overflown with thankfulness that God has given you these two little miracles. Travis is one as well, what a big brother he is and so devoted to Riley.
Sincerely Barbara

Anonymous said...

Lindsey..He is such a cutie.Every picture makes me want to hold him and give him alot of kisses.Your boys are great and you have a very nice family.Cherish every minute. They grow up fast.My baby just graduated college.Hope to see you soon... God Bless...Emily

Anonymous said...

Lindsey, I don't know of anyone that could look at that precious face, with the award winning smile, and not fall instantly in love! God bless Riley, and all of the strides he has made in his short life. He truly is a miracle! He and sweet Carter have traveled a journey together, and it is so good to see both boys doing so wonderful.
Before you know it, Riley will be calling for Travis all the time!
Love and Hugs, Dale

Anonymous said...

Lindsey, I am so tickled to hear the happy news about Riley. I have witnessed miracles of other people, but have never been so touched with the miracle of Riley. He is such a precious boy and you and Jay are blessed to have him and Travis too. They are both so dear to our hearts. The pictures are darling. Keep sharing the good news, Love, Debbie and Gary


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