Duke SICC Appointment

I can aaaaaaalmost reach it.....
What?!? I didn't do it. It was Lucy!

C had a follow-up appointment with the Clinic at Duke this week. These appointments are with the Neonatologists who cared for him in the NICU and TCN. We've been going every 1-3 months because of the serious feeding issues and reflux that C has been experiencing. They are a wonderful team who like to stay on top of things, so we didn't mind visiting them that often. Our last appointment with the Clinic was just a few months ago, when he was still tube-fed, and it was "the" appointment where they gave us 2 months to get him off the NG feeding tube, or we'd be definitely scheduling surgery for G-tube placement.

Boy, were they surprised to see him this week! No tube, getting bigger, eating tons....it was a GREAT appointment and they were so happy with how well he's doing. Dr. M even mentioned that C just barely avoided the G-tube. We were sure to thank them for hanging in there with us while we tried everything under the sun to get him eating and avoid that surgery. He's still riding the 25% curve for his weight, but his height went up to the 65%! Tall and skinny, just like his Uncle Brian. It went so well that we don't have to go back for SIX months! (We'll still have to follow-up with Nephrology every 2 months until we can get C's kidney and blood pressure issues under control.) We also have to decide when to schedule surgery to have his abdominal side-wall hernia repaired ~ not something I like to think about AT ALL.

Here's a picture of his scar (aka: the shark bite!) and hernia.

They also reminded us of how important it is for C to have his hearing checked every 6 months for the next several years. I mention this here just for the benefit of other families. Because C was on the high frequency ventilator, he's at an increased risk for hearing loss. It's something that may not be present now, but that can occur over the next several years. So it's very important for these kids to be followed long-term by audiology.

Because of his low muscle tone, we will continue to see PT and OT often. His Physical Therapist just put him in shoe inserts to help stabilize him for walking. After the Duke appointment, we got to go shoe shopping for shoes that are soft enough for pre-walking and wide enough for his chunky foot plus socks plus the inserts (they go up to his ankle like a high-top shoe). That was fun (insert sarcasm here). Luckily, we found a very patient lady at the Stride Right store who pulled all types of shoes until we found one, in an Extra Wide! I never thought anything about C would be "extra wide" ~ teehee!

We are so proud of our little monkey and look forward to showing off his continued progress in 6 months! Hopefully, by then, he'll be walking and running up and down the halls :)

kidneys, tummies and shots, oh my!

Brad had to take C to get his RSV shots this morning. I wasn't able to go, so here's the picture he sent me via his phone right after C got them. Poor baby has to get 2 shots now, one in each thigh, because of his weight. Speaking of weight....he has finally broken the 10 kilo mark! A whopping 22 lbs, 2 oz. WOO HOO!!!

C had a follow-up with his Nephrologist (kidneys) last week. The Dr. said he was thrilled with how great C looks. He sent C for a follow-up kidney ultrasound and said that we wouldn't have to come back for a whole year (we've been going every 3 months), unless something came up on the ultrasound.

C was a perfect angel during the ultrasound, as always. I sat on the examining table and held him while they poked, pushed, and prodded around at his kidneys and bladder. About 10 minutes into it, he fell into a deep sleep. I can't say that I blame him because it's dark in there and the only noise is the quiet humming of the ultrasound machine.

A few days later, we received a phone call from Nephorology and the NP told us that we will need to return in 2 months for a follow-up ultrasound. C's always had some issues with his kidneys thanks to ECMO (the heart-lung bypass machine he was on), so this wasn't too much of a surprise, just a let-down. He has some scarring in one of his kidneys, likely from the clots he's had, but the Radiologist noted something in the Left kidney and he was uncertain as to what it is. So, they want us to return in 2 months so we can keep an eye on this "uncertain something." They told us that it's probably nothing to worry about and it will probably disappear as he grows. We are certainly terrified bummed about this, but we're not going to dwell on it because we know all to well that it could be so much worse. We really could appreciate your thoughts and prayers that this turns out to be nothing of concern.

If any CDH/ECMO parents have any experience with this and don't mind emailing me, I'd appreciate it. I don't want to go into the details on the blog, but I'd love to hear your experience.

Doesn't look like C is very worried about it!

Waiting for Santa...

C learned a new skill this week. On second thought, I should have taught him "where's your diaphragm?" haha (just a little CDH humor)

Make an on-line slide show at www.OneTrueMedia.com

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

Duke Docs & UNC Basketball

We just returned home from a two-day Duke bonanza. Carter had several appointments and test over a two-day period so we chose to spend the night in a hotel and make it a mini-vacation. The highlights from the Duke appointments:

• We saw Dr. Barker, Carter's wonderful Cardiologist, who has followed him since our very first fetal echocardiogram almost a year ago. We got the fantastic news from Dr. Barker that all of Carter's heart issues have cleared up! There were no more signs of aortic thrombus (medical speak for "blood clots"), which were the result of ECMO. His heart is still shifted mid-line and not on the right like most of our hearts, but it's functioning well, which is all that matters.
  
• We were so proud of Carter because Dr. Barker ordered a sedation echocardiogram because babies typically need sedation to be able to sit completely still for the test. But, our big boy kicked back on the exam table, watched "Baby Einstein" and didn't require any sedation.


• The visit went so well, in fact, that we are CLEARED from Cardiology! This means that Carter will no longer be followed by Cardiology. It's a teeny bit sad because we really like Dr. Barker, but we can always visit him when we're at Duke.


• Our Clinic visit (check up with Neonatology) went well, too. They are pleased with how healthy he is and how he's chunking up.


• Carter now weighs 18 pounds and is 28 1/2 inches long, which puts him around 20% for weight and 50% for length.


• We re-visited the Gtube issue because some of the Neonatologists don't want him to have an NG beyond a year of age, which only gives us 3 months to make A LOT of feeding progress


• The big news....drumroll....Carter has gained so much weight that we were given the ok to drop an NG feed! WOO HOO! We were feeding him 8 times a day (every 3 hours) but now we can drop to 7 feeds a day (we'll drop from 5 to 4 NG feeds and keep the other 3 PO/by mouth feeds at night). We are slowly, but surely, weaning from the NG tube!


• Carter was started on Duocal, which is a tasteless calorie supplement, that we can begin to add to the baby food he eats. This will help boost his calories and possibly enable us to drop anothe NG feed.
  

We spent last weekend at Duke and then 2 days this week, which was getting to be a bit too much Duke for this Carolina girl, so we took Carter to the campus of UNC-Chapel Hill (where I went to Undergrad and finished law school). The first thing I had to show him was the Dean Dome, which is the legendary Basketball Arena for the UNC Tarheels. The University has recently built a Basketball Museum (which is free if you are interested in visiting) adjacent to the Dean Dome. We had a great time introducing Carter to the legend that is UNC Basketball. The best part was when Carter saw a video of Roy Williams ~ he started smiling and clapping!

Going down the hill to the Dean Dome

Carter's first time Rushing The Court!

I love this! So sorry, Duke :)2009 Tournament Trophies! Those shoes are as big as CarterHey Brad, they call it Chapel HILL for a reason. (notice that I got to push the stroller down the hill, but Brad had to push it back up)

Carter's first hotel stay
And to top off a great visit, we were able to see Christopher (another CDH and ECMO survivor)

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!!!

To G-tube or not to G-tube?

We weren't supposed to go back to the Duke Clinic for a check-up until the end of May, but Carter was missing Dr.B so much that we went yesterday. Actually, feeds have gotten really frustrating and we made a frantic call out of desperation (and sleep deprivation) to Dr. B that something needs to change and it needs to happen soon. She jumped right into action like a Super Hero and arranged for us to be in the Clinic within a few days. We also wanted to have a meeting with the surgeon about the G-tube. The visit went well and everyone gushed over how well Carter is doing. He had a great time flirting with EVERYONE and showing off his 2 teeth. I thought Dr. B and the surgeon were going to fight over who got to take Carter home :)

He now weighs 7.34 kilos (16 lbs, 3 oz.) and is still riding the 10% curve, while his length is in the 25%. He's gained a pound in just over 2 weeks, which is great considering he was sick during that time.

We have a lot to think about concerning Carter's refusal to eat by mouth and whether or not to venture into G-tube territory, feeding clinics, maintain status quo, etc.. We were given a lot of great information and now we have to decide what we think is best for Carter. And I thought parenting was just about fun stuff! (haha)

It's nice to hear that they think he's doing so well because sometimes we get so wrapped up in the feeding and reflux issues that we lose sight of just how lucky we are. We know that eventually he will eat and we have to be patient until then. As usual, Carter does everything on his own terms, on his own time. I know one day we'll be at Chick-Fil-A and he'll just ask for some nuggets. Then we'll never be able to get him to stop eating!

"Hmmm...I wonder what they're going to say at Duke?"