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!

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.

MaaaaaMaaaaa!!!!!!!

You know those Suave commercials, where they make the mom in the "before" picture look like crap so that the "after" picture looks even better? Yesterday, I was the poster child for the "before" picture! haha. Disheveled, greasy hair; still wearing PJs at noon; wearing a thick bathrobe even though it was 80 degrees outside; no makeup; and baby puke as my perfume of the day....

It all started as a perfectly "normal" day. We've been waiting on the Easter Bunny, so when the doorbell rang, I opened the door thinking it would be the Bunny and that's when the Reflux Monster snuck in. Apparently RM hid in a closet until the noon feed when he decided to pay Carter a visit and turn our "normal" day upside down. Poor Carter started screaming after 60mLs of formula had been pumped in (that's about 2 oz) and was inconsolable. I stopped the feeding pump and picked Carter up, after which I was promptly puked on. Let me tell you that puke in the bra is not the best feeling in the world. Carter was fine as long as he was being held upright--that's our shield against the Reflux Monster. I quickly ran for the Sleepy Wrap, knowing it would help protect us against the Monster. As I laid Carter down on the bed to pu the wrap on, he started screaming again.

And that's when it happened....."MAAAAAAAAAAAAAAMAAAAAAAAAAAAAA!!!!!!" It wasn't quite how I envisioned it happening--you know, the dream of holding Carter while he's smiling and all of a sudden he looks at me and says "mama"--but it happened just as it should because he WANTED HIS MOMMY and he wanted me right NOW! At Physical Therapy last week, his PT remarked that she thought she heard him cry "maaamaa" when he was upset, but I didn't believe it. And do you know what this wonderful mommy did? I ran for the cell phone (it has a voice recorder on it) to record him screaming maamaa because I knew no one would believe me.

Later that afternoon, the Easter Bunnies decided to show up. I almost didn't let her (Grandma BZ) and her (my sister, Tracy) and him (Granddad Z) in because you know what happened the last time I answered the door. My sister has never held Carter because when she visited at Duke, he was still very sick. Aunt T got lots of drool and smiles. Unfortunately, I forgot to take pictures, so I guess she'll just have to come back soon :) Grandma BZ brought an Easter Basket for Carter with lots of cute stuff. We also did Christmas with Aunt T and Carter really racked up on the goodies. I'm going to have to keep an eye on that Aunt T because she's going to SPOIL Carter!

GERD/Reflux

I apologize in advance if this post turns into a rant. I know most of you expect, and enjoy, our light-hearted posts--this isn't one of them. I also do not intend to sound ungrateful--we thank God daily for Carter's life and we thank Carter daily for fighting to live. I would take our current difficulties ANY DAY over what Carter's been through. But, after speaking with several parents, of both CDH children and those with GERD (Gastroesophageal Reflux Disease), we have all become frustrated that the difficulty of feeding these children is not discussed at more length. It seems that support groups abound for CDH families, but once you get home, that support wanes as your issues transition from life-threatening to just frustrating (although in our view, refusal to eat is life-threatening). Perhaps it has much to do with "survivor's guilt," which weighs heavily on us. You feel like you don't have a right to complain; it's very hard to talk about. So in light of the many discussions I've had with other families, I want to bring awareness of some these issues to the friends and families of anyone trying to cope with a child with GERD.


We are not asking for help--there's not really anything you can do to "help." So many people ask what they can do, and we have no answers for them b/c if we knew what would help, we'd be doing it. I'm not writing this for pity either--I just want to get the information out there so other parents know they are not alone. We've had a few recent incidents of people getting upset with us for not having time for them--I hope this helps you to get some idea of what goes on.


What you can do for us and these families is simply try to understand. Understand when we have to leave early or arrive late; understand when we don't answer the phone or forget to return phone calls; understand that we keep the ringers turned off on all the phones because IF we finally get Carter asleep so he will eat, the slightest noise (from a cough/sneeze, a knock on the door, people talking even at a whisper, the list goes on) will wake him up and then he completely refuses the bottle. Understand if we don't have the time for whatever it is you want because we're busy going to therapy (3 times a week), doctor's appointments (once a week), cleaning up projectile vomit (which happens multiple times a day), doing laundry from the vomiting, giving meds, cleaning bottles, cleaning feeding pump supplies, keeping detailed feeding journals, emailing/calling doctors and therapists for help...the list goes on.

To say it's stressful doesn't even begin to cover the emotions. Every parent should have the wonderful bonding experience of sitting down, with their child in their arms, and feeding that child. To the parent of a child with GERD, mainly those who have an aversion due to the reflux, this experience is heartbreaking. To know that you can't provide your child with the most basic of necessities is indescribable. You are robbed of an experience that many others take for granted. To know that your otherwise happy, giggling child can turn into the child from The Exorcist at the mere SIGHT of a bottle is unnerving. For example, you have all seen how happy Carter is. What you don't see is as soon as we begin to swaddle him, he stars screaming, tears streaming down his face; that as soon as we sit in the chair in his room that we feed him in, he immediately begins to gag; that he begins to kick, arch, cry, scream, and turn his head from side-to-side the moment food begins to pump into his belly from the feeding tube and it doesn't stop until he wears himself out and falls asleep. It takes 45 minutes to feed him this way; 45 minutes after the feed to hold him upright in a futile effort to prevent vomiting; 10 minutes to clean him up/change his clothes/change our clothes after he vomits--and all this happens every 3 hours....8 times a day! You do the math. Even after this whole process is over, you live in constant fear that he'll vomit, choke, and stop breathing or that he'll aspirate on the refluxing food and get pneumonia.

Parents of a child with GERD wish they can just pick up and go, but they are literally prisoners in their own home; their lives completely dictated by the feeding schedule. I would love to pack a bottle, put Carter in the car and just feed him on the go. But I can't. He will not eat awake and when he's asleep, there can be no distractions or noise. Even if we try to go out between feeds, we worry about if he's going to vomit while we're out and know that we have to get home before the next feed. We can't let others feed him b/c he's picky (imagine that) about who feeds him and it's such a delicate line between getting him to eat and making the aversion worse. We can't just "let him get hungry and he'll take the bottle." He doesn't eat because it hurts to eat and he knows he's going to vomit. To make him starving and then present a bottle, knowing that he desperately wants and needs to eat, but can't, is pure torture.

Again, I will say that we will take Carter's feeding difficulties any day over what we could be dealing with. We remind ourselves all the time that it could be much worse. We know how lucky we are.

If you don't believe me or want to read more about it, please browse the following thread: http://www.healthcentral.com/acid-reflux/c/71776/33595/comments

To all the parents out there who are reading this and saying "that's MY child!!!!"---you are not alone! Please feel free to contact us if you need to vent or if you have any secret suggestions. It's my hope that getting this very personal information out there will help just one family, and that will make it worth it.

Beautiful Day

After spending the morning cleaning up Carter AND Lucy puke, I decided we all needed some fresh air and sunshine. It was a beautiful, warm day so into the back yard we went. Since Carter spent his first 4 months of life inside the hospital, he's very sensitive to bright lights and wind. He didn't really like the sun in his face and tolerated it long enough for me to snap the pictures. He did like being on the screened in porch, and laughed at Lucy as she ran around in the yard. He gets a big kick out of watching her toys fly by and her right behind them!

Carter told me that he wanted to wear his United States Marine Corps shirt today in honor of Bodee's (our CDH pals from Duke) dad, Mark, who is currently overseas protecting us. He just left for 7 months, and Kristen is home alone with Bodee and their 3-year old daughter, Dakota. We have so much respect for their family and will continue to say many prayers for Mark's safe return.

Good Day

We had a great day today. Carter only puked ONE TIME and had 2 small spit ups. He took in 825 mLs total for the day, which breaks his record. He weighs in at 13 pounds, 15 ounces (6.32 kilos). That's an 8 oz gain from 7 days ago.

He's also started to suck on his thumb. He is getting much better sitting up and controlling his weeble-wabble head.

Just a quick update & some pictures

Carter is still a very happy baby. He has recently discovered that his feet are very cool things to play with. He's "talking" a lot more and laughs with his whole body. He's rolling all over the place, and is tolerating a little more time on his tummy. He moves his hands with much more purpose, meaning he reaches for toys, grasps them and brings them in to his body (mostly they go straight into his mouth); it also means he reaches for and pulls my hair when I'm close to him!



We continue to struggle with Carter's feeds and vomiting. Dr. M and Leah (OT) are working very hard with us to get it resolved. He's on a new medicine that we think is working very well--it's cut the vomiting from 6x a day to 3x a day and he's more comfortable when he eats. We see Leah 2x a week and Carter also gets Craniosacral Therapy (CST) 1x a week. After 4 looooooooooooong weeks, we had the NG tube put back in as you will see in the pictures. We'll go back to Duke for a check-up with the Clinic soon, so I'm anxious to see what they have to say. On a good note, we have FINALLY been able to transition him from the stupid Nuk nipple to the Dr. Brown's.



I couldn't decide which pictures to post, so I put quite a few into a video. You might notice that he doesn't have any ECU stuff (hint, hint).

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

Duke SICC 3/5/09

Too many Chiefs and not enough Indians!

We had a check-up at the Clinic today and saw Dr. Benjamin. According to her, Dr. Malcolm, Dr. Goldstein and Dr. Ashley all have very different opinions about what to do with Carter. In the past 2 weeks, he has begun to vomit with every feed, except the 9pm, 12am, and 3am feeds. In the past few days, his reflux has come back with a vengeance. He gags A LOT and it's so pitiful to see him suffer. He's also started waking up around 5am, sounding like he's choking/gagging. Dr. Malcolm seems to think that he's silently refluxing during the night and it peaks in his esophagus around 5am, causing him to choke on it. Dr. Goldstein thinks we should have the G-tube put in, and she thought we should have seen surgery today about it. Dr. Malcolm was in-service in the TCN, but came all the way to the Clinic to talk to us because he feels so strongly against the G-tube. Additionally, the OT he sees at Duke has her own opinions and the OT he sees in outpatient has hers. We have so many opinions our heads are spinning right now! Additionally, it's uncomfortable to be in the middle of their battle over Carter. If things don't improve, we may seek a 2nd opinion from another hospital.

Dr. Malcolm recommended that we try Baclofen (it's not federally approved for reflux) because in SOME children it's been shown to greatly reduce reflux. We'll try just about anything right now to get Carter some relief. He said if it's going to work, we should see some improvement quickly. We have made it almost 4 weeks without the NG tube and on Monday, we'll be placing it back in. Carter's oral feeding skills have completely tanked because of his reflux issues. Leah thinks that we should continue PO feeds at night because they go well, but during the day we should only tube feed and work on making eating a positive experience. She thinks he'll do well eating from a spoon, but we have to get to that point first. Dr. Benjamin also wants us to go back to tube feeds (although she wants a G tube) because of the effect it's having on us. She knows that we are reaching a point where we dread to feed Carter, which is not fair. Feeding your child should be an enjoyable experience. We were in tears today when talking to her because it's just so hard and we want to make it all better for Carter. To see him happy and comfortable when he eats is a dream that I wish would come true.

His weight today was 5935 grams (just over 13 pounds); head circumference was 41 cm; length was 25 inches. He's in the 5th% for growth, BUT he only gained 25 grams in the last week. He should be gaining 25-30 grams per day.

Another change Dr. Malcolm wants to make is to increase the volumes Carter intakes per day. He's currently averaging 750mL per day; they want him to intake 950mL per day to grow. We are currently mixing the Prosobee forumla at 24 kcal/ounce. I'm worried he's not going to be able to handle that much increase in volume, but we have to do something to grow and not just "maintain."

Duke visit

Hurry Mom, before I fall over!

We spent the day at Duke yesterday for follow-ups with Carter's surgeon, Dr. H and nephrology, Dr. F. Dr. H thinks he's doing well, but it's likely he's looking at another surgery to repair an abdominal hernia (not related to his diaphragm hernia) if the abdominal wall doesn't strengthen and pull the protuding bowel back in. Dr. H doesn't want to even discuss the surgical repair for at least 6 months until Carter is much stronger. We found out that Dr. H has NEVER had a CDH repair reherniate!!! We certainly hope Carter doesn't buck that trend! Carter wore his "Chicks Dig Scars" shirt for Dr. H and we think he got a kick out of it.

Dr. F ordered a lot of tests and Carter was such a good boy during all of them. I am so proud of how well he handles being poked and prodded. During one test, he had to be stripped and taped to a board with his hands above his head. They said normally babies scream and cry, but not our little monkey. He laughed at the tech as if to say, "That's all you have for me?? I've been through so much worse than this, lady!" It was very pitiful to see though. You can see his little hand poking out above his head.


Carter now weighs 5910 grams (13.02 pounds)! We made a visit to the ICN and his nurses were very impressed with his fat rolls and chubby cheeks. He was such a flirt with all of his nurses. He even nibbled on Susannah and Shanda :)

We continue to do loads of laundry as Carter continues to "share" his food with us. I hope he outgrows it before his high school prom, because it's not very cool to puke on your date.

In other news:

• As if we had any doubts about Carter and Riley calling each other at night to plan their antics, they both spent yesterday in the same exact position. See: http://lindseysouza.blogspot.com/2009/02/riley-riley-riley-what-are-we-going-to.html
• Christopher (R-CDH who spent 3 weeks on ECMO at Duke) went HOME this week!!! So far, every CDH baby we've seen at Duke has gone home or is on their way home. Yay!


• Davis continues to do well and is up to full feeds now. We got a peek at him yesterday and he's adorable. I'm not going to jinx them by talking about the "H" word right now :)


• Thank you to John Michael and Nayeli for the wonderful gifts you both sent Carter--we'll try to get some pics up here soon

The Children's Hospital at Duke

Waiting to see Dr. H
This is what Carter thinks of leaving the house at 7am to drive to Duke

Duke Follow-Up 2/25/09

We had a follow-up day at Duke with Dr. H, Carter's surgeon and Nephrology (to check his kidneys). Dr. H thinks he is doing very well. His new conclusion is that the "pouch" on his left side is an abdominal hernia because he can feel bowels poking through. He does not want to discuss the option of a surgical repair for at least 6 months, until Carter is bigger and stronger. I hate the thought of another surgery. Riley will be returning to Duke in 6 months to see Dr. H for another surgery, so maybe we can plan for them to be roomies again!

Carter's blood pressure is still running high, so we're staying on the Clonidine for now. We'll see them again for a follow-up in 3 months in the hopes that he outgrows the blood pressure issues. He had a kidney u/s which showed left hydronephrosis (enlarged left kidney). He also had a cystogram/voiding to check for reflux from his bladder back into his kidneys. We were so proud of him during this test b/c he had to be stripped naked, taped to a board with his arms over his head and they inserted a catheter to drain the urine from his bladder. Then, contrast was used to fill his bladder and they took repeated xrays to look for reflux. Thankfully, none was found and his kidneys and bladder look to be working well! Whew! When discharged, he had a grade 1-2 reflux, so we're so happy he's outgrown it. He looked so pitiful strapped to the table, but he didn't even cry. I can't believe how much he puts up with and just goes right along with it.

He's still vomiting a lot and the past few days, it's been with almost every feed. Dr. H said that the culprit could actually be the Reglan he's on for reflux b/c it increases the rate food moves through the stomach, but it doesn't actually make the stomach empty the correct way. We have an email in to Dr. Malcolm to discuss a trial of no Reglan.

OT is going well. Leah is fantastic and she's been able to get him to take about 30 mLs while awake. She has lots of great ideas for getting him to eat and we'll soon be trying rice cereal, with the hope that he'll take solids from a spoon better than liquids from a bottle.

PT says he's right on track developmentally. He's sitting up with support, holding his head up, rolling over, grasping things, bringing things mid-line and to his mouth, laughs and recognizes familiar faces, and has very good head control. He's also "talking" up a storm with baby babbles.

When Daddy's Away, Mommy Will Play

Brad's been home for work the past few days, so I've had Carter all to myself! We have had fun just hanging out and talking. Brad has a lot of diaper changes when he gets back to catch up with me though.

At one of the Super Nurse's suggestions, the docs stopped adding formula to mommy's milk for Carter and guess what...no puking since! They've increased the volume he gets to 92cc every 3 hours and he's taking it like a champ. He's improving each day with learning to eat by mouth. He's not taking a bottle yet, but he's very good at working on his fingers, the paci, and mommy. He swallowed some milk today with no problems--no choking, aspiration, desats, etc. and he didn't spit it up later. He has to get this eating thing down before the docs at Duke will let him go home, so we need lots of prayers for Carter to be a little piggy with the bottle.

I asked one of his Doctors today about the "plan" and she said it's (1) to continue weaning the Morphine, which should be finished in the next 1-2 days (then he gets his last PICC line taken out) and (2) to get him to eat from a bottle. That's it!!!

Here's Carter in his bouncy seat. He likes to have his arms swaddled, but not his legs and feet. He even kicks off socks if the nurses try to put them on.

Sweet Boy

I don't have much to report. Carter loves to laugh and smile, even in his sleep or when there's a paci in his mouth (see the picture below). He has a dimple just like Mommy's, on the right cheek. He's so sweet and quite the snuggler. Occupational, Speech and Physical Therapy have started visiting him, working on things like muscle tone, getting rid of "ECMO neck," coordinating eating & breathing, and taking a paci and bottle. He discovered his hands can reach his mouth and now loves to suck on his fist or fingers and much prefers them over the pacifier. He's in a big boy crib now and spends time in a bouncy seat during the day. He hates getting a bath and pokes that bottom lip out and cries through the whole thing.

He didn't feel well today and even puked on his TiTi (Godmommy Kristie)--they added formula to his milk and I don't think it's settling very well. It could be CDH related reflux, but since he's been getting full feeds for a while now, we're more inclined to believe it's either the new formula or a new med they give orally with his feeds. I hope they get that resolved soon or I'm going to be doing a lot of laundry!!

It's hard to suck on a paci when you smile all the time!

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