au revoir, adios, ciao and good-bye

I'm happy, thrilled, beyond excited...you get the picture...to report that as of today, Baby C is officially UNPLUGGED!!!!! Although he's been eating ALL of his food and Pediasure by mouth since he pulled out his NG tube 56 days ago on September 24th, his Doctor signed the order for us to return the equipment today. That means that his Duke team is confident that we are now TUBE-FREE and he no longer needs that old stinkin' tube. I can't tell you (unless you've been through it) how wonderful this feels.

It's so crazy for us to think that we had surgery scheduled to have a more permanent feeding tube (a G-tube) placed into his stomach on September 9 and just 2 months later, here we are -- kicking the pump, the IV pole, the tubes, the feeding bags, the tegaderm tape, and the syringes to the curb. I'm so proud of Baby C for accomplishing this and so thankful to his team of therapists and Doctors who hung in there while we kept pushing back the surgery date b/c we "just knew" he could do it.

And speaking of 2 months. Do you remember this post? For a quick refresher--we had a very nice stranger tell us on Sept. 10 that Baby C would be eating in 2 months. At the time, I was skeptical because we'd been battling with his feeding issues for almost a year, but we didn't give up. And she was right! We will be paying her a visit very soon.

In true fashion, we threw a going away party for the feeding pump. Here are some pictures from our party! As you can see in the last photo, Baby C is THRILLED to be D.O.N.E. with that ol' tube and pump.

psgetti

Mommy and Daddy have been too busy to update the blog, so it's my turn again. I went to see my Doctor today for my first set of RSV shots (this was after I had to go last week for the Flu and H1N1 shots) and I gained over a pound in two weeks. I now weigh 21 lbs, 14 ounces! It must be all that food I've been shoveling in and all the Pediasure I gulp down (20+ ounces per day). I've been without my NG tube for a month and a half now and it's been great (Super Sofie, your mom is awesome)! I had 3 molars pop through this week ~ OUCH! I feel much better when Mommy & Daddy give me that grape-flavored yummy stuff though. They call it "candy" but I know better! Candy doesn't come in syringes.

Here's what I've been up to:

Discovering and LOVING psgetti (aka: spaghetti)...

...dressing up like a Doctor, with trusty Nurse Daddy at my side...

...cheering for the Phillies and wearing the same shirt for every game of the World Series (I'm just preparing Mommy for my teenage years)...
...meeting my new Cousin Daniel..
...swinging at Uncle Mike & Aunt Tessa's House...

...keeping the neighborhood safe...

...reading with Mommy & Lucy...

...and celebrating Riley's First Birthday!

Thanks for stopping by. Please continue to think about my buddy, Andrew, who Mommy & Daddy say is an Angel now.

Love, Carter

Surgery was Postponed!

It's finally time to share our top secret news. Grab a drink and settle in for a long post. I wasn't going to go into much detail, but we realized that some of this information may help some of those families going through the same feeding problems. If you want the short version, scroll to the bottom of the post.

Does the number 24 mean anything to you? Well, to us it represents the number of days since Baby C has puked. Wait?!?? Did you read that correctly? Yes, you did ~ over 3 weeks! (That would be the clues of Carter eating w/o a bib on and the photo of the bib in the trash can) We met with Dr. H, Carter's Surgeon on August 14 and after listening to him describe the surgery, apparently Baby C thought it might be easier to make some changes. So, he puked at the 9am feed on Saturday, August 15 and that was it. The last puke, gag, sign of reflux. We've been withholding this information until now for fear of jinxing it until we met with his Doctors again at Duke today.

Your next question (at least for those of you dealing with reflux) is probably, "How did you do it?" Well, a higher power intervened 3-4 weeks ago when Baby C caught a stomach bug and was puking TONS. He became very dehydrated and we ended up putting him on just Pedialyte for 24 hours via the NG tube. And he stopped puking. We slowly started working up to 1/2 Pedialyte and 1/2 Prosobee (formula) and he still wasn't puking. We realized that all this time we've been thinking that it was high volumes that were bothering him, so we had reduced volumes and increased calories (he was up to 29 kcal/oz). But, for Baby C it seems that the high caloric concentration was THE thing that was aggravating his gut and thus, causing the projectile vomiting. (something called osmolarity, I believe) After a long process, we're back to 100% Prosobee formula in his feeds, but at a much lower calorie concentration (22 kcal/oz) and he is tolerating it!!!! I honestly never believed that I'd type those words.

As soon as the puking stopped, Baby C picked right up on eating by mouth. Brad & I have long suspected that the vomiting was contributing to his refusal to eat. He started out 2 weeks ago, taking about 2 ounces of whole milk (from a sippy) + 1-2 oz. of pureed foods a day. Each day, he took more and more. This past week, we've been able to skip several NG feeds because Baby C drank MORE than we would have fed him via the tube. His best 2 days this week, he drank 16 ounces of milk/pediasure mixture and ate 4 ounces of pureed fruit + 4 ounces of yogurt. He's also eating organic puffs like a champ! He LOVES them.

One of the biggest achievements is that he is now getting hungry and becomes excited when he sees the food. Especially puffs. He sits in his high chair and jumps up & down, waving his arms when he sees the container. This is the same kid who just a few weeks ago would begin gagging as soon as you placed him in his high chair.

We had a long day at Duke today for his Special Infant Care Clinic appointment, Developmental Testing, a meeting for the CDH/Genetics study at Duke, and Pre-Op. They were very pleased with his growth; his weight is in the 22%. Baby C's surgery was scheduled for tomorrow (9/9/09), so we were very anxious to share this news with his Doctors. We packed our bags last night, prepared to be gone for 1-2 weeks. Little did we know, when we shared this latest news today, his Doctor replied "I can't justify putting him through the G-tube surgery at this point." WOOOO HOOOO!!!!! There's nothing like waiting until the last minute...in true Baby C fashion.

We had to come up with a new plan in light of Baby C changing the game on us. They are giving him 2 months to wean off the NG tube. We'll start by removing all day-time NG feeds (he gets 2 over night while he's sleeping) and see what progress he makes over a few weeks. If he takes in enough by mouth, then we'll pull the NG tube all together and see what he does. If he can't do this, then we will be, with 100% certainty, getting a G-tube. No ifs, ands, or buts. Because he's doing so well, they also want us introducing all kinds of foods to him. He doesn't seem to have an aversion to any type of textures, as he's been eating chunky veggies, pasta, meat, etc. Today, he even ate pizza (what else do you expect -- Riley ate pizza not long ago).

Baby C was also scheduled for Developmental Testing with a Child Psychologist. He is
age appropriate in cognitive skills; expressive & receptive language; and fine motor skills. He is moderately impaired in gross motor (crawling; standing; transfers). This was fantastic news because it means that he's caught up from all the lost time he was on ECMO and in the hospital. The gross motor skills impairment is to be expected because of the abdominal surgery, but he's quickly catching up.

He will still need to have the abdominal hernia repaired, but it's something that can wait. The repair will have to be done using a patch, so the older Baby C when we have it done, the better it will be for him.

Thank you so much for all of your support, happy thoughts, finger crossing (especially from Jack), and prayers. They are powerful and are working. Keep them coming, PLEASE. We'd love to be able to pull that old tube and ride off into the proverbial sunset.

For those of you keeping count, this makes the 3rd hospitalization that Baby C has avoided. What a super baby.

In Short:

• Baby C has not puked in over 3 weeks!
• Baby C is eating and drinking a TON of food and making progress every day
• The Doctors cancelled the G-tube surgery because of this progress & his weight gain
• Baby C has 2 months to prove what he can do ~ if he can't lose the NG tube by then, we will be absolutely, positively getting a G-tube
• His Developmental Testing went very well ~ he's age appropriate
• Your prayers, positive thoughts and crossing of fingers worked, so please, please keep them coming

We also want to remind all of you that we are now in "winter lockdown" (or hibernation, if you prefer). At the advice of Duke, Baby C will not be getting the H1N1 vaccination (too risky b/c it's not been sufficiently tested), so he'll be highly susceptible to catching it. He also has not yet been approved for the RSV shots this winter. This all makes for a very dangerous cold/flu/RSV season for him. If you have been sick, have been around anyone sick, or even think you might be coming down with something, please DO NOT VISIT us or Baby C. We can't take the risk. Now, without the use of the feeding tube, if he gets sick again, we won't be able to pump Pedialyte in and he WILL be admitted to Duke. We know he looks very healthy, but keep in mind that his lungs are not normal. The remain underdeveloped and can't handle things like a simple cold or the flu like most people can. Your sniffles can land him back in the Intensive Care Unit.

Carter Unplugged ~ C.U.

GOT MILK??

Or as Jen (Sofie's mom) says, C.U. or "See you" later NG tube :)

We've started C on an intensive weaning program thanks to Jen and her "Peetie Unplugged" plan that successfully weaned Sofie from her NG tube. We'll forever be grateful to her for taking the time to post her plan in so much detail. We have, of course, made adjustments to personalize the plan for C, but the basic premise remains the same.

I should begin by saying that ALL of this is under the complete observation of his Docs at Duke. We would never make changes to his nutrition without their blessing and input. Please do not read Jen's plan or this plan and immediately begin your own without consulting with your child's physician.

We're now on Day 15 of Phase I and Carter has made HUGE progress. So much so that we've gone from 8 formula feeds a day to 6! And he's gained weight while doing it. These formula feeds are either bottle (sleep eating) or NG feeds. Basically, we began by decreasing the volumes he was getting so he'd be more interested in taking in more by mouth. He does not eat based on your normal hunger cues, because he's never learned to make that distinction. But, I liken to drinking several large, thick milkshakes, and then someone asking you to follow them with a Thanksgiving feast. You wouldn't be motivated to feast, either. So, we are lessening the milkshakes.

In place of the lost calories from the dropped formula feeds is...REAL FOOD! wooooo hoooo!!! He's slowly, but steadily, increasing his daily intake of pureed foods and milk. Milk? Yep, we got the all clear for whole milk and yogurt. Even though he's not quite 1 year old yet, it's more important to find something that he enjoys to eat and drink. C LOVES ice cold milk and is drinking it from a straw like a champ. It makes sense because (1) he teething, and the ice cold probably soothes his gums, and (2) milk is basic and it counteracts the acidity of the reflux, so it's likely very soothing to his throat and tummy. As he takes in more by mouth, we slightly reduce what he gets via NG, which has allowed us to drop 2 formula feeds.

Another change is that we started thickening his NG feeds. We've been thickening the night-time bottles with rice cereal, but the rice was too tacky to put through the NG tube without clogging it. We are now using Thick-It, which has the added benefit of additional calories. This, in combination with restarting the Reglan, has GREATLY reduced the emesis (vomiting). He's now down to 2-3 episodes a day and half of those are just spit ups; the other half are very small. SPIT UP??? I never thought I'd be able to use those normal baby words with C. This is a huge change from the voluminous, projectile vomits he was having 6-7 times a day, during which he'd "return" to us more than half of what he just pumped into him.

We continue to work with him on learning to use a sippy cup, but he definitely prefers a cup and straw. The only thing he does with a sippy right now is shake is vigorously, laughing at the sound of the liquid sloshing around inside. And every once in a while, he'll toss it to the ground and laugh when it hits the floor. Silly Monkey!

We had a conference call with Dr. M and Dr. B today and they seem pleased with his progress. We're still discussing the G-tube issue, but we have resolved that even if he gets a G-tube, he will NOT get the Nissen. It's not really necessary since we've been able to control the emesis with other means. The G-tube, though, has its advantages over the NG. (1) the NG is causing overproduction of mucous, which gags C, (2) C is becoming increasingly aware of the NG, which means he's going to begin yanking it out more often (is that possible to do it more often?), and (3) the presence of the NG in the back of the throat can lead to delays in oral eating skills and language skills. Brad and I strongly believe that the presence of the NG in the back of his throat is partially a reason he won't eat much. We go back to Clinic in 2 months, during which C will have developmental testing, so we'll make the decision about the G-tube at that point. If C makes a TON of progress and he's almost there, then we'll probably just hang on to the NG, but if the progress is still slow, we'll likely schedule the G-tube surgery.

Another piece to the puzzle is keeping the food moving through him. The Reglan speeds the movement of food from the stomach to the intestines, but we have to help the intestines move the food OUT or it completely zaps his desire to eat, so we're giving him Miralax to help things along. I'll save the details for the sake of C's dignity. He might marry one of your daughters one day and I don't want this to be the detail you remember as you walk your daughter down the aisle! haha :)

We've been keeping a detailed log and it's pretty amazing to look back and see that 2 weeks ago, he wasn't really taking in much liquids and now, when he sees a cup and straw, he grabs it with both hands, sticks the straw in his mouth and drinks away. Of course, this still has to occur on his own terms and if we try to make him drink, he won't; if we let HIM control the cup or spoon he does much better. I guess he inherited my control-freakness!

Finally, C has three full-time teeth, and four part-time teeth (these are the ones just breaking through). The full-time teeth are the two lower central incisors and the left lower lateral incisor. The part-time teeth are the right lower lateral incisor, the two upper central incisors, and the right upper lateral incisor. Poor baby! He's been a bit fussy this week, so we're hoping the teething doesn't set him back too much with the feeding.

This is certainly taking up much of our time, as we are devoting all of our free time to working on making eating a fun experience for C. If we've been MIA from your lives and haven't returned emails, phone calls, texts, etc. now you know why.

Please keep your fingers crossed, say prayers, send positive vibes, or whatever you do to make good things happen. We're feeling very optimistic about "Carter Unplugged" and maybe he'll be tube-free by his birthday!