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.

What's Up?

I haven't really done an update on Baby C lately that didn't involve Gtubes discussions, so I thought it was about time. He's been giving us many gray hairs lately with 2 recent near-hospitalizations. As much as we hate the feeding tube, it has saved us in that he was dehydrated both times (once to a tummy virus + lots of vomiting and once to a bad reaction to the HepB vaccine + 102F fever). Instead of having to drive to Duke and have him in the hospital for several days to receive IV fluids, we were able to pump lots of Pedialyte into his NG tube (he would NEVER have taken the amounts he needed by mouth) and he bounced back quickly. He even managed to do get through all of this without losing any weight! He's still in the 25% for BMI.

C had his PT re-evaluation today. I can't believe he's already been going to therapy for 6 months. The re-eval is to look back at the goals they had set, what he's accomplished, and set new goals. He's doing very well and is on target for his age with the exception of two things: (1) pulling to a stand from sitting; and (2) cruising. His neck is still a little tight (a result of ECMO) so we have some stretching to do. She said that we will continue with weekly visits until after his surgery so she can help him bounce back more quickly and then we'll transition to once every other week.

Well, wouldn't you know it. Our little stinker came home from PT and while sitting in front of his crib playing, grabbed the railing, pulled right up to a standing position and then took THREE steps to peek around the head of the crib! I guess that means he's on target for his age now :)

He has his OT (feeding) re-eval next week, and I'm really excited to see how far he's come. When the progress is so slow, it's hard to step out of the box and see the whole picture. Being able to look back objectively, with goals and accomplishments, really shows us how much C has done since he's been home.

We have some great news in the feeding and reflux/puking department, but I'm so scared of jinxing it that I can't post it quite yet. Just know that he's a completely different child and it's a whole new world for us! We have made some big changes that resulted in over-night improvement for Baby C. He's also developed the attitude of "I can do it" and wants to help with everything. Even though he makes a big mess when he does it, I don't care. I told him it's ok if we have carrots on our ceilings and milk on the floor, as long as some of it ends up in his mouth. I certainly don't hear Lucy complaining about it. I'll let the pictures below give you a clue, but they certainly don't tell the whole story (and yes, that is a jar of applesauce that's almost empty)!!!! (oh gosh. I'm so scared to even press "Publish Post" for fear that as soon as I do, our nightmare will return)

I was recently discussing the feeding nightmare with another CDH mom and we were agreeing that our moods are directly related to how feeding is going. When our kids have good feeding days, it results in putting us in a great mood. The converse is also true and I am in the worst mood on days that he doesn't do well. I could totally chart my mood swings and Carter's eating habits and they'd fall on the same curve. I'm sure that all good parents feel this no matter what your child is dealing with.

We've also been wondering lately how something so small can get into SO MUCH? He's obsessed with crawling to the TV cabinet and opening/closing the sliding doors; he crawls all over the house from room-to-room like he's on a mission; he likes to play in the kitchen cabinets; he likes to crawl on top of the A/C vents and let the air blow in his face while he laughs. Today, I was peacefully sleeping and I was abruptly awoken by a piercing alarm, followed by a piercing screaming. I jumped up and went out in the hall to find Brad holding a crying Baby C in one arm and our Carbon Monoxide alarm in the other! Carter had discovered the alarm and pulled it right off the wall, making it alarm b/c it was no longer connected to its power source. Ahh....life with a toddler begins.

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!

Little Green Monsters

C's making very quick progress on sitting up and building up strength in his upper body. Last week, at PT, he could only sit unsupported for 18 seconds. Today, at PT, he sat unsupported for more than THREE MINUTES! His PT even remarked how great it is that he has a new skill each time she sees him. He's also improving on transitions ~ for example, transitioning from sitting, to leaning on his hands over to one side, to sliding down onto his belly.

Last week, we accidentally discovered a new skill. My Dad brought me a big ol' sweet tea from McD's (yum). While I was holding it in one hand and C with the other arm, C reached out and grabbed my drink and straw. I assumed he wanted to munch on the straw because he's teething (top canines), but when he put the straw in his mouth, my Dad and I watched in amazement as tea moved up and down in the straw! He was actually trying to suck drink from the straw!!!! I didn't let him drink any of it because I didn't want him to get scared by the large bolus he would have gotten.

We shared this info with his OT and today, she gave C a squeeze bottle with a flexible straw-type tube and he drank from it! It's easier to control the flow of liquid with this type of bottle, which we must be cautious of because if he chokes or gags on too much liquid, he may reject this like he's done with the bottle. Miss Leah also presented C with an open cup, and he drank a little from that. He didn't take much measurable volume, but this is still a great development. We had a repeat performance at home with watered-down juice tonight. We had a repeat performance at home tonight. WOW! Big step in the right direction! **happy dance**

He's improving on his pureed food skills, too. He definitely likes the home-made foods better than store-bought foods. When we present a food he grabs onto both sides of the tray, lunges forward, mouth wide open like a baby bird, and chomps on the spoon. If it's a food he likes (pears, apples, sweet peas, sweet potatoes) he'll come back for more. If he doesn't like it, he clamps his mouth closed and is D.O.N.E. We have to be careful not to leave the spoon in his mouth too long or he gags on it, but I do think his gag reflex is improving. He's taking in around 2 tablespoons at a sitting, and then I think he gets bored and/or overstimulated. He doesn't gag or cry or fuss when he's had enough, he just completely ignores you. If you continue to try to feed him, he turns his face all the way to the left side and presses his face into the chair as if he's saying, "if I can't see you, you can't see me!" And if Lucy comes in anytime during the feed, you can forget it because he's more interested in her than whatever it is you are doing!

Mmmmm....Sweet Peas (aka: little green monsters)!

We spoke with Dr. Wonderful today and discussed adding Duo-cal, or another calorie additive to his pureed foods, in order to maximize his caloric intake. She's also going to look into what high-calorie liquids we can try with the straw because water and watered-down juice are sort of a waste for C. When every calorie counts, water is an "empty" food that takes up room in his little tummy and doesn't give any nutrition. He's not quite old enough for Pediasure or milk-based products, but we're willing to get creative!

8 Months

I've written a note to Carter on his "monthday" every month since he was born for his blogbook. I haven't made any of them public, but I'm going to post this one so I can update you at the same time. We're becoming increasingly busy, which means less time for blogging! I've added some pics and video at the end.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


C:


You are eight months old now ~ 4 months shy of 1 year! I actually ordered your 1st birthday shirt this week, which is surprising because I am very superstitious. Normally, I would have waited until just before your birthday and then had it overnighted. But, I think excitement beat superstition this time!


The last time we took you in, you weighed 17 pounds and were 27 1/2 inches long. I know you've gained more weight but I can't report it officially because it's not a weight from Duke. You are taking in about 35 ounces of 27 cal./oz Prosobee a day ~ you still take the bottle at 9p, 12a, and 3am and the rest are tube feeds. You do the funniest thing when you have had enough of the bottle~you slap your hand up and down like you're tapping out of a wrestling match. We still feed you every 3 hours and you will only bottle feed when you are fast asleep. You are doing so well with solids and your favorites continue to be sweets (you get that from me). Your intake is increasing so much that Mrs. Leah says we need to start measuring how much food you eat, which is about 2 teaspoons at a setting!! Great job big boy!


You are a true boy (I now think that there are boy traits that are genetic). You laugh at toot/poot noises and you love trucks, trains, cars...anything with wheels. You also get a big kick when we take your stuffies and shake them like crazy so their arms and legs flop all around. If you see water, you almost leap out of our arms to get to it so you can smack it with your hands splashing it everywhere.


You have the cutest laugh now~you wrinkle up your eyes and nose and it's a full-body laugh, showing off those 2 teeth. You have 2 more teeth trying to break through the top, which is probably why you've started sucking on your thumb until it looks like a raisin. If it's not your thumb, it's your toes. I think you must be the happiest baby in the world because it's very rare that you are fussy or even cry. We put you in your crib around 8pm and walk out. You are asleep by 9pm and sleep until 9am! Yes, we are SO lucky to have such a good little boy. One of the nurses at Duke recently asked us if we were ready for another baby and I said, "NO! We got so lucky with Carter that we're scared to have another one because the next one might be a terror!"


You are becoming mobile and we call you the Disappearing Baby. Just last week, I put you on your play mat, walked into the kitchen for something and when I returned, you were gone! You were almost to the door. You combat crawl and scoot around because your arms aren't quite strong enough for real crawling yet, but I don't think it will be long before you're really on the move. You're also sitting up on your own for longer periods of time and will catch yourself when you start to teeter over to the side.


You have started waving and say hey, mama, and booboo (which I think is Lulu because you say it when she's around). We're now working on dada before he gets a complex.


You are a joy to be around and every new phase we think, "this is our favorite age" and then you do something the next month and it becomes our new favorite. I can't wait to see what this month brings us!


Love you bunches,
Mommy & Daddy

The Disappearing Baby:

He started on the blanket & did the "spiderman" across the floor

He started in the middle of the mat...

...and within seconds was on his way to the door!

Movin On Up

Carter has gained so much weight that we're now up to SIZE 3 diapers! Woo Hoo!!! He's gotten so long/tall that we're close to ditching the infant car seat in exchange for a big boy seat (still rear facing). He's also up to 1,025 mls of formula per day (for all of you not in the Metric world, that's about 35 ounces). He's taking 140-ish mls PO (by bottle/mouth) at night and the rest is via NG tube feeds during the day. We're still feeding every 3 hours and probably will for a long time because kids with reflux do better with smaller, more frequent meals.

Playing "peek a boo" with Daddy

ADVENTURES IN BABY FOOD...

I decided to start making Carter's food because (1) he's had so many unnatural things happen to him, that this is way I know exactly what I'm feeding him, and (2) it's MUCH cheaper than buying baby food (for example: 1/2 bag of frozen peas is 50 cents and makes 16 one ounce servings!). It's so easy ~ I just cut up and steam fresh veggies (Organic ones from Scott Farm Organics when available); then puree them using the water from the pot to thin; put in ice cube trays and freeze. I store them in Zip-loc bags in the freezer. It takes about 30 seconds to heat one up and we're ready to roll.

This weekend I tried Avocado ~ I'm not sure Carter likes it and I can't stand the smell, so this is one food we'll leave to Brad.

Thanks to Lindsey and Laura for all your pointers.

And this is proof that we actually DO have a life outside of Carter! Brad and I went to a friend's wedding this weekend. Congrats Andrea & Scott!!!

Weekend Fun...and it's only Saturday!

I'll start off with a short bit of feeding updates:

• Carter's daily volume intake is now averaging 930mLs (31 ounces) at 26 cal/oz (regular formula is 20 cal/oz); we'll probably begin to increase the calories to 27 cal/oz next week
• We changed the NG tube yesterday and today, during a puke session, it launched out of his body like a missile~that's why some of these pics are tube-free
• His OT started him on Biter Biscuits/Teething Biscuits this past week and he's doing well with them; he certainly doesn't have an aversion to putting them in his mouth, but I don't think he really knows what to do with them (yes, Alison, Chris & Davis, he's waiting for those sweets you keep telling him about)
• The reflux seems to be bothering him more in the past few days, so it's likely he's gained weight and it's time for another weight adjustment; we'll find out later this week

Now for lots and lots of pictures:

"Hey Lucy...why don't you eat this Biter Biscuit and we'll pretend that I actually ate it."

Lucy makes a perfect 30 degree incline for reducing reflux

Carter's PJs from his California Girlfriend

"La, la, la...I'm just sitting here. I promise I'm not about to do anything..."
"...HA! GOTCHA!!!!"

"mmmm...love that camera strap"

Goofing around with Daddy!
We didn't want to be left out

This week, I found Carter doing this (in the video below) just after a face-licking from Lucy. I don't know if he just coincidentally started sucking his upper lip or is mimicking Lucy, but it's pretty funny to watch.

And here's more giggles for those giggle-lovers out there (sorry it's sideways--I keep forgetting that I can't rotate the videos)