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

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)

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?"

Clinic Visit

We had a follow-up Clinic visit last week at Duke and it went really well. Carter is now in the 10th percentile for weight and the 50th% for height. They were very pleased with his growth (he was in the 5th at the last visit), due in part to the NG tube and addition of rice cereal to his bottles. He had a chest xray and a PFT/bronchodilator (pulmonary function test). The xray showed two healthy, "great" looking lungs!! The PFT was done because pulmonary problems can arise long after discharge from the hospital, so it was just a follow-up test to determine if he needed a nebulizer at home. The PFT showed no signs of pulmonary problems and no need for a nebulizer or any other breathing assistance. During the PFT, they hooked him up to a pulse ox and his O2 sats were 98-99%!!! Yay Carter!! We were a little nervous about having the pulse ox back on because it had been so long since we had to think about that and it brought back a lot of memories of us sitting in the NICU staring at that number. Carter showed us that we had nothing to worry about :) They also let us discontinue his vitamin + iron, which we're thrilled about because it smells horribly--I can't imagine what it tastes like. It was so nice to leave there feeling good about the visit, since the last one didn't go so well. He even got a cute little sticker that says "Today I saw the Doctor."

We also got good news today that Carter was approved for his last/April dose of the RSV shot. This is great since we've been hearing that a lot of kids were not approved for it.

This is how Carter "eats" in the car at 6am on the way to Duke. We run the pump over 45 minutes to help his reflux. The NG tube sure can come in handy sometimes! :)

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.

Paparazzi Strikes Again

Feeding news: nothing much has changed. Dr. from the Special Infant Care Clinic (follow-up clinic at Duke) called this week to check on Carter. They are fantastic about keeping up with him and are probably wishing they had not given us their email addresses. He said since Carter's become a pro at vomiting up his NG tube, to leave it out for now and just see what kind of progress we make. If he continues to gain weight, we can leave it out. He's still only sleep/dream eating, so we're hoping Mrs. Leah will work miracles on him next week to overcome that. Any families that have overcome this--please send us your suggestions! Today is Day 5 without the tube, and so far, he's done very well. Keeping fingers crossed for a tube-free future.

p.s. Carter's teething, which might not help the feeding issues! I'm going to start calling him our drool monster.

Poor Carter. He is being stalked by the mommy paparazzi again!

Thanks to Jodi and Jill for the UNC polo shirt.

We had a nice, quiet Valentine's Day at home, which is just what we wanted. Brad sure knows the way to my heart...cupcakes!!!

Our first full family picture!!

Carter had visits from all of his grandparents and his great-grandma this weekend. Whew! What a busy weekend.

Carter & Granddaddy in their Hawaiian shirts

4 Months Old

Happy 4 months Carter!

We had our first check-up at Duke Thursday at the Clinic, and it went very well. It was so exciting to bring him into Duke and do normal things with him, like try to figure out where to change his diaper in public (no, I am NOT using one of those disgusting changing tables in the bathroom). They seemed pleased with how well Carter's doing and the progress he's made in just a week at home. We got to see some of our favorite Doctors and Therapists. After the visit, we swung by the ICN to say hello to some of Carter's Nurses (and show off his jeans to Erica) and we were able to visit with Dr. Goldberg, who is THE reason we chose Duke. Of course, he smiled and flirted with EVERYONE! We're so fortunate to have a baby with such a happy disposition. Even after hours of check-ups, therapy sessions, poking, prodding, etc. he was still smiling and laughing.

After we left Duke, we took a quick ride to Parker's House to pick up some things we left behind and turn in our keys. We ended up visiting with Michael and Carolyn, Davis's parents, and some of Carolyn's family members, who are the current residents of PH. It's a good thing we went because Carolyn was about to volunteer to become a "baby holder" at Duke just so she could get her hands on a baby :) Michael snapped some pictures while we were there, which are at the bottom of this post. We are so touched that he would take time away from what's so important to send us these. Thanks for making us realize that we need a better camera!

Dr. was ok with us leaving the tube out for now, but only if we are not getting anxious about feeding Carter. He said if we start to see ourselves pushing volume and forcing him to take more than he wants to, then we need to put the tube back in. If we push him too hard, it could completely backfire on us and cause Carter to reject oral feeds altogether. He didn't really gain any weight (just a few grams) so they made some changes to his feeds by increasing volume and kcals (additive to add calories to the milk). For now, we still have to stick to the Duke plan of feeding x amount every 3 hours--which means forcing him to eat throughout the night, when he should be sleeping.

One of our biggest feeding hurdles right now is that Carter will only "sleep eat." This means that he will only take the bottle when he's sleeping or very tired and distracted (like in the dancing video). You've never seen a temper tantrum like the one you receive when you take a wide-awake Carter from playing and show him the bottle. He does well sleep eating, usually taking his entire prescribed amount, but if he wakes up, it's over. The slightest thing, from the phone ringing to the doorbell, will cause him to stop eating and refuse to finish. Brad or I spend about 30-45 minutes prior to a feed tiring Carter and trying to get him to sleep. We then pull up all of his meds and give them to him by squirting a teeny bit into his cheek 0.1mL at a time (it's like watching paint dry); otherwise he gags and wakes up. He will take the bottle in anywhere from 15 mins to an hour and then we hold him up for 30 more minutes to help his severe reflux and keep him from choking when he pukes. Take another 10 minutes to wash everything and it's almost time to start on the next feed! (remember, he has to eat a certain amount every 3 hours)

Without the NG tube, Brad and I found ourselves running out of steam quickly in the last 48 hours. We ended up dropping the NG tube back in Friday afternoon because we realized that we were doing exactly what Dr. warned against. We were pushing him too hard and were really upset when he didn't take every drop of every feed. What we should be more concerned with right now is the quality of a feeding session, not the quantity. The specified quantity is necessary, but with the NG tube available, Carter is free to take as much as he desires by mouth and we give the remainder via the tube. We need to get Carter to a place where he will willingly take the bottle when he's awake and aware.

We also are going to have therapists (probably Occupational and Physical) coming to do in-home therapy. That's really going to throw our schedule for a loop! The ones with Developmental Services/EI should be coming out in the next 2 weeks to do their evaluation and set up how often each week they will be visiting. We're hoping to get a private OT in next week though, because we really can't afford to have a lapse of a few weeks in therapy. (We're also looking forward to the Spring, when Carter is allowed to do outpatient therapy with Miss Leah!)

I've been doing the midnight and 3am feeds, while Brad gets some sleep and he takes over at 6am, while I sleep. But, I had to go back to work tonight, after a week off, and I don't know how we're going to find time to fit it all in! Brad goes back to work on Monday and we're going to try to juggle Carter's schedule between the two of us, with me working permanent nights. We barely have time to even shower--to our coworkers: if you smell baby puke, yes, it's us; please kindly remind us that it's time to shower! We spoke with the pediatrician today about the possibility of hiring a night nurse/CNA/nanny to come in a few hours a day to help out and are waiting to hear what she finds. It has to be someone with medical knowledge because he/she will need to draw up meds, use the feeding pump, etc.

I know all parents of infants loose sleep, but most of them have more than just one week after bringing baby home from the hospital to settle in before returning to work. Brad and I don't have maternity/paternity leave, so we're trying to figure it all out in a few days, while working and being severely sleep deprived (I'm talking 2-3 total hours of sleep in over 48 hours). But, would I trade it? Nope, absolutely not. I'd take never eating or sleeping again just to have Carter home.

We had to go to the pediatrician's office today for a weight check and his RSV shot. We saw a different Dr. from our primary ped., but she's also very knowledgeable about CDH/ECMO kids. She said Carter was the best looking (health wise) CDH child she'd ever seen! She was truly amazed at how well he is doing, which gave us the chance to brag about Duke and how FANTASTIC they are. I think we should start charging a referral fee to Duke--haha :)

p.s. there was a lady in the ped's office staring at Carter's NG tube like he's some freak. if you happen to see a child who doesn't fit into your sense of "normal" please don't stare.

It's going to be very important that we keep Carter on a strict schedule so we can fit in everything we have to do, and so he can organize his sensory system. We have a spreadsheet on the fridge to keep track of who did what, when and what's due each hour. I'm going to have to alter it to include his therapy sessions and weekly visits for weigh-ins at the peds office. We just can't afford to throw him off of his schedule and get behind or for a feeding session to be interrupted, so we're going to continue to ask that people not visit.

If any of you, especially families of children with special needs, have any suggestions about how to balance both parents working + taking care of Carter's needs, please send them our way.