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.

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!

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)

Who Says I Have An Aversion?

"I'm telling Mommy you're on the couch, Lucy!"

Carter is starting to sit up on his own and weight bare on his arms. He's very weak in his upper body and abdomen, so this is a great sign. All those exercises are paying off!

Almost there...

"I did it!"

We have a local restaurant that gives Dum-Dum suckers with your meal. We had take-out from there last night and Carter seemed interested in the Dum-Dum, so just to see what he'd do with it, we gave him one. I think we created a monster! (don't worry-we didn't leave him unattended with it and he only took a few licks before we took it away from him)

The Reflux Monster is still here. He hides under the couch at night and comes out during the day. To those of you who have been there and have given us advice and hope--THANK YOU! This is just a sampling of our day to show you what I'm talking about. The orange highlites NG feeds and the blue highlites puke sessions after each feed. This does not even show the number of times he pukes a day--just when he does so in connection with a feed.

Laughing, eating, and trying to crawl

I can't keep up with Carter--I think he does something new every day! He's almost 7 months old and we are finding that he gets bored VERY easily now. Keeping him entertained all day is getting very interesting, but also so much fun! Oh, and he's developing quite a little attitude, especially when you take something away from him that he wants. He must still think he's in the NICU and has those Nurses wrapped around his little finger!

This is what he does when you say "Cheese!"

We still go to see Mrs. Leah (OT) twice a week. One day she works on PO feeding with the bottle and formula and the other day we work on PO feeding with pureed solids. She also sprinkles in lots of work on rolling, sitting, strength, etc. Today, Carter showed off for her and took 10 bites of sweet potato! She seems very encouraged with this new development and we're hoping this will continue to improve and will also be the bridge we need to teach Carter what to do when he gets liquids in his mouth so he can move on to a sippy cup. He's also improving on his trunk strength and we're hoping he'll be able to sit on his own soon. He's started standing a lot, especially when we try to sit him down. He'll lock his legs and stand up. Leah and Carter's PT said this is a big No-No for Carter, as are Jumpers and Bouncers. Essentially he's standing b/c it's easy and sitting is hard work--standing up and locking his body allows him to avoid "working." Little stinker is outsmarting us at each step!

After working with Mrs. Leah, Carter came home and tried out crawling. Of course, he won't do this when he's in therapy! He's funny because he can't quite coordinate himself and his arms aren't strong enough to support him for very long, so he gets mad. Here are some pictures of his attempt to crawl.

My failed attempt to capture the tooth on camera!

This is what happened when I was trying to take pictures...someone grabbed the camera strap!

I could listen to this laugh all day long!

Fun Stuff!

Carter loves the nebulizer treatments and it's about the only time during the day that he actually sits still. He'll sit on one of our laps and watch TV while the machine runs. I think he likes the cool mist on his face.
I've been afraid to post this for fear of jinxing it. Carter's making GREAT progress eating solids (pureed baby food). We started with bananas for a week, which he thought were ok (he took 8-10 bites at a sitting). This week, the food of choice has been sweet potatoes and he loves them! He's been taking about 20 + small "bites" at a sitting plus he takes the spoon and tries to feed himself. This is a HUGE step in the right direction for Carter since he's still completely refusing the bottle. We're keeping many fingers crossed that he keeps this up.

One tooth is in and the one beside it is about to pop through. Last night, after we put him to bed, Carter was WILD. We went in to check on him and found him chewing on the crib--as you can see from the picture below. I guess he needed some relief on those sore gums!
I've posted a lot over the last few days, so make sure you scroll way down on the page to catch up. Carter's kept us busy this week! :)