As you know by this point, on top of having a CHD, Nolan has also struggled with feeding issues his whole life. Aside from slowly taking a couple bottles from me when he was a couple days old in the NICU, he’s never really eaten by mouth. He had a feeding tube placed before we brought him home for the first time and it’s been a life of tube feeds and feeding therapy for the little man. Progress on eating has really been up and down: we successfully moved him from Pediasure to using blended feeds and eventually managed to get Real Food Blends covered by our insurance, which took quite a bit of work. All the while he wasn’t really eating at all. His morning routine, in fact, involved some meds, some fluids, vitamins, and some Benecalorie, which is a high-calorie product that we mix with water or juice:
During Nolan’s stint on the rehab unit this summer, one of his speech therapists – Grace – gave us a few “local” recommendations for feeding programs. All of them were hours away, which made for a tough choice. In the end, we decided to try the feeding program at the University of North Carolina Medical Center because they had some experience working with heart kids. Once all the referrals were made we had our first appointment for early in the morning in October. Until this point, all of Nolan’s appointments are around 30 minutes away. Now we were facing this:
And not only did we face a nearly 3-hour drive, I had to take the day off work and we had to find people to drop off our other kids at school and pick them up. This was quite an undertaking. We left super early and made the drive…and barely made it there because of traffic. UNC Medical Center is on a really big campus, right next to the University. They have a massive parking deck with a $10 daily maximum and no validation in the hospital…BOO. It’s kinda weird having to go to a different facility after being so used to Levine Children’s Hospital and we didn’t know what to expect. We found the check-in relatively easily and went through all the initial paperwork and whatnot. Then we were sent to a different waiting room and were barely there before Nolan was called back. They got the usual weight/height/sats that everyone measures and then we were taken back to a room.
What’s unique about this program is that it’s run by a team approach. We had a NP from GI come in along with a nutritionist and the feeding specialist. All at the same time. Yes, you read that correctly. Working across disciplines: what a concept! The initial appointment was really, really long: they had a ton of questions, naturally, and wanted a good feel for Nolan’s needs. While they did give us some dry spoon exercises to do with Nolan at home, their first major concern was Nolan’s vomiting. Nolan has always had issues with throwing up ever since he came home from the Norwood. We talked to everyone we could about it and either no one seemed too concerned or no one could do anything about it. And absolutely no one would communicate across disciplines about it. God forbid. So this was different. They said the dose of meds he was on for his tummy was so low it wasn’t going to do anything so they prescribed him a different med – Nexium – that he would take once a day before feeding. Then they also recommended starting him on a different food blend called Nourish:
It’s a plant-based formula that they felt better met his nutrient needs (Real Food Blends apparently was short on some things, hence our need to add vitamins). Plus they said the addition of turmeric in the blend has shown to help kids with their reflux issues. I was skeptical: I just wanted to jump to the feeding and get it done as quickly as possible so we can stop driving so much. But hey, I don’t get to make that choice, right? For now, though, hey held off on the Nourish and just had us work with the dry spoon and new meds on Nolan and meanwhile they would communicate with Nolan’s current speech therapist to see if she was on-board with UNC’s recommended plan (she was, thank God).
We went back one month later and Nolan was showing a little bit of improvement with the vomiting and he did a good job taking the dry spoon. So the next step was to start him on Nourish. They made sure our DME provider carried it (great job on their part!) and told us they’d email the recommendations for switching over. What they didn’t tell us was…dun dun dun…we’d be bringing back to bleeping feeding pump. And when I say bleeping I mean literally bleeping.
This really made me pissed off because we had gone away from the previous Kangaroo pump and were giving his feed bolus by hand. Now we were back to this nonsense and we they wanted us to put him on continuous overnight feeds for 10 hours. TEN HOURS! Did they know how much this kid rolls around in his sleep?
We did try, though: we hooked him up and immediately this godforsaken machine would beep and beep and beep with some kind of error: No Flow In, No Flow Out, blah blah blah. And I hated it. Do you remember the movie Demolition Man? Where Sylvester Stallone kept cursing at that citation machine?
That was pretty much me.
So we fired off an email to the team and pleaded our case for not having the overnight feeds, at least. They responded that it was meant to help create a hunger sensation that would help with feeding and to trust them for awhile.
So there it was…trust. It’s hard to do, and especially hard when the team is hours away and doing something that inconveniences you. But that’s just what it is, an inconvenience for me…ultimately it’s meant to help Nolan, so we sucked it up and went with it.
Well I gotta tell you: between the meds and the feed blend, Nolan rarely vomits now. And even when it seems like he’s going to (usually when he’s upset), I’ve noticed he’s able to control himself and not do it. It’s amazing! We’ve also graduated from dry spoon practice to dipping the spoon in juice and Nolan has been doing a great job. Yesterday he sat down to feed at least 3 times and took at least 20 bites each time. Soon we’ll graduate to dipping the spoon in a little bit of puree. Baby steps. This is going to be a long process but I’m seeing some progress in our little man…and I’m starting to trust his feeding team more and more. It’s amazing what can happen when disciplines work together! So until now we’ll keep up the work and won’t head back to UNC until February, but it’s promising! As long as he keeps eating, we’ll keep driving. Whatever it takes. Go, Nolan, Go!
As you may know from this blog, the other struggle we have with Nolan has to do with his feeding. He drank very little from a bottle at birth, and by the end of his 2 month recovery from the Norwood, he came home with a feeding tube. Two years later here we are, and Nolan still isn’t eating. Sigh. While it’s easy to hold off tube feeds and encourage him to eat, the other side of the story pops up too: weight gain. The truth is, he needs to be about 30 pound for his Fontan procedure, but if he can’t gain weight, it puts everyone in a challenging position. So we’ve been stepping up his tube feeds in an effort to help this little man grow. Still, though, we want to kiss that G-Tube goodbye.
While Nolan does attend feeding therapy once a week, it seems as though he hasn’t really made a ton of progress with eating (and that’s not their fault). I mean he can eat some things…IF he feels like it. But we needed to know more, and his feeding therapist wanted to know more too. In 2014 we send him for a swallow study in the hopes we’d find out something. It was NOT a good experience: they were not helpful and basically forced him to drink the solution and said he doesn’t aspirate. Well duh. I could’ve saved us all the stress.
Enter a specialized clinic called Carolina Pediatric Dysphagia:
They seemed to specialize in what Nolan was struggling with…so we got a referral, then an appointment for an assessment and modified barium swallow study. Exciting! So the catch? They’re in Raleigh, NC…which is nearly a 3 hour drive for us….EACH…WAY. But…we’ll do what needs to be done, right? So I took the day off work, we got people to watch the other kiddos, and my wife and I hit the road with Nolan.
We got to the clinic and they had a train set and play kitchen to entertain Nolan while we waited. We finally got to have Nolan’s feeding assessment, where the we met the very nice feeding therapist. She went over Nolan’s previous assessments and talked with us about his eating. Then we sat him down and she watched him eat…or try to eat. She immediately came up with a few thoughts about his swallow strength (or lack thereof) and the rhythm of his chewing, among other things. She took lots of notes and suggested a few things like getting him weaned off his pacifier (God help us), stop the sippy cup and move to a straw cup, and use a more rigid spoon. Those changes didn’t seem to painful…well except maybe the pacifier, but we’ll get to that. Once the assessment was complete it was time for the swallow study. The therapist actually went to that too, which really surprised me…I mean I didn’t expect that: they did, after all, send us a set of directions to the radiology location. But she offered to lead the way and let us follow, which was really awesome, because I’m totally not familiar with Raleigh.
So we got to the swallow study and they were expecting us and were very nice. Unfortunately when we took Nolan back, it looked enough like a Dr’s office and he freaked out. Sigh. My poor son (that’s another blog entry for another day). Anyhow we went back to the room where the test would be done: they took some yogurt, cheeze-its, and water from us so they could add the barium to it. As they worked on that, I put on some good ol’ Yo Gabba Gabba music on my phone to calm Nolan down and then Bekah and I put on our lead gowns. Mine was pink and I totally rocked it. Once the test was ready to begin we had to basically lift Nolan into a little chair that was placed in the middle of this machine. The only thing I could think of was “Oh no, he’s gonna FREAK.” But lo and behold, Nolan sat there like a champ…I’m sure he was amused by all the attention in the room, there must’ve been like 5 people in there at least.
But, of course, he couldn’t just sit there…he actually had to eat. And this is the hardest part…usually when we try to feed Nolan he turns his head with a loud “NOOOOOO!” and refuses. I was worried it would happen here and we’d waste the whole trip. At first he wasn’t having it, but I made funny faces and tried to play a game with him…and he opened up and ate a bite of the barium yogurt…and then another. And while this was happening, they were running the x-ray to see, in real time, how he swallows (I couldn’t see this part because it was on the screen behind me and I was totally focused on feeding Nolan). Then we had to get him to drink some water, which he did. Then came the oh-so-delicious barium cheese-it. As I was holding it up to him I was thinking “There is NO way he eats this thing.” But you know what? They told us to hold feeds before he got there…and I guess lil’ man was hungry…and he ate it! I was SO proud of my little man!
So the gist of what I got was that Nolan’s swallow isn’t completely strong enough to get things back…his food and drink kinda hang out in a sorta green room, if you will, before he has to swallow again to get it back down. But the therapist said she would review the video and get us a report.
We got the report the following week and it was chock full o’ jargon I didn’t understand. But what I did understand was the section that said “Prognosis: Good, with consistent feeding therapy.” Say what? Heck yeah! I think this is the first time someone was really like “Yeah, he can eat” as opposed to the “We’ll try.” The good news is we shared this info with Nolan’s current feeding therapist and it seems like she found some really good stuff in the report, so I’m really hopeful we can get him on the right path and really turn things around! You can do it, Nolan!!!
Since the visit, we worked to wean him off his pacifier, which went WAY better than I thought. A minimum of meltdowns, it was pretty awesome. We’ve got him on a straw cup and he’s doing well with that. So now we’re on our way to developing a plan to get this little boy to eat!
Ok so am I the only heart dad out there whose kid (feeding tube or not) is kinda like the Borg from Star Trek? Yes…I went there. Growing up I LOVED Star Trek the Next Generation…loved it. I watched it every night before bed and watched all the movies. For those of you who are all like “Oh Lord here he goes talking about space ships and lasers and chew-tabacca,” hear me out for a moment. So in Star Trek the Borg was this alien hive mind, so to speak, who would pretty much obliterate other alien peoples and assimilate them into their hive, implanting robot parts into their body. Sorta like Pimp My Ride but with aliens…and body parts.
So where am I going with this? In Star Trek the Borg were by far the most fearsome enemy because they had powerful weapons AND they would acclimate to any weapons you threw at them. Shoot em with a phaser? Yeah it will kill 3 or 4, but then they would all acclimate and it wouldn’t work anymore. So you had to keep changing things.
Yeah, that is SO Nolan when it comes to eating. He’s like a little 20-pound Borg without the robot parts. I remember when we started this tube wean journey, he was tearing up some Banana-Mixed Berry baby food. That purple gloppity goop was his favorite, and I could get him to relatively eat the mess out of it. It became my go-to food whenever he wasn’t cooperating with something new. But then Nolan went full Borg and was like “Pfft…that don’t work on me, pops!” Then it got to the point where he flat-out refused to eat anything we gave him, even if it was like chocolate pudding or cheesecake. I mean C’MON SON, you gotta want that stuff right? Nope.
So there was a time there where we fought with him and he shook his head for everything we tried to give him. It was kinda like Star Trek First Contact (great movie, BTW). It was a struggle and sometimes you just wanted to jump out of your chair and be like:
But then…THEN something shook loose, and I honestly can’t tell you what it was. Now he’s back to eating a little better and even trying new things like crackers, mashed potatoes, peanut butter cheesecake, etc. And he’s not taking in any PediaSure at all, which is a major win. So why the change? No idea. Am I afraid he’s gonna go full Borg again…absolutely.
So tell me, Heart Parents: do you struggle with this? If so, how do you hold back the Borg invasion?
Hey friends: as promised, I would keep you posted on Nolan’s progress with the g-tube wean. First thing’s first, I have to admit that this is a major challenge, so if you’re thinking about weaning your child off a g-tube, prepare for a marathon…an uphill marathon…an uphill marathon where you’re carrying a boulder….you get the picture.
Nolan started off his feeding journey like a boss: he ate two containers of baby food each day while being supplemented by PediaSure. Then he continued to do better: he’d slowly get up to 3 containers and we sensed victory on the horizon. Then Nolan did what Nolan does best: he got stubborn. Some days he’d fight us tooth and nail when it came time to eat…then other days he’d eat like he’s never seen food in his life. So there were days he’d eat 2 containers, and one day where he ate over 4 containers. A lot of times when we sat him down to eat, he’d clamp his mouth shut like a jerk and just shake his head. Ugh.
To add to it was the struggle to maintain his calorie count so he doesn’t lose a ton of weight during this process. Weight loss is expected, but you don’t want it to get out of hand so we wanted to get him as close to 1000 calories a day as possible. This is where things got tricky, especially with the PediaSure: we started off by feeding by mouth while pumping in his formula through the tube. Problem with that is we didn’t quite know when his belly was full so he would throw up. Sometimes the PediaSure would fill him up – and he’d know it – and he would stop eating. We wanted him, then, to associate eating by mouth with being full, not necessarily the g-tube. So we’d only do tube feeds when he’s asleep for naps and at night. Otherwise it’s through the mouth.
In the midst of this hard work, it’s cool to see Nolan’s tastes coming to light. He loves the banana-mixed berry baby food and anything with mango. One of his favs, though, is this Happy Squeeze Greek Yogurt stuff:
He tears it up, which was great….until we ran out. Then we couldn’t remember where we bought it. We took to the interwebz and found out it’s in lots of places: Target, Food Lion, Harris Teeter, Wal-Mart, etc…we went to SEVERAL of those stores and struck out each time. We were freaking out: I mean he was eating other stuff, but this was his fav! We almost had to order some off amazon, but my wife finally found some at Target…and bought 2 boxes of it!
We’re going to keep pushing: we’ve been getting creative with ways to add calories to his diet. Olive oil, whipping cream, looking into Duocal…whatever it takes. The goal is to still get him off that stupid g-tube, but admittedly it’s been a frustrating process
As of writing this entry, Nolan is 19 months old and very soon to be 20 months old. If you recall from waaaaay back in this blog, he had a G-Tube placed for feeds just before he went home from the Norwood Procedure. So at the time, Nolan had been in the hospital for almost 2 months…he was SO close to being home, we were exhausted, and we just wanted our family to be whole for the first time since the twins were born. Speech therapy came into his room and did a half-hearted attempt to get him to drink from a bottle, but no luck (and no duh, he had been intubated for over a month!). So they went the G-Tube Route and we quickly agreed…whatever it took to get him home.
Fast-forward 17 months and he’s still on the G-Tube…and it sucks. IT. SUCKS. I can’t stand that thing, more for his sake than mine. I hate that sometimes he steps on it when he tries to stand and it pulls and hurts him. I hate that sometimes the tube pops open during a feed and covers his bed completely in smelly Pediasure. And I hate that idea that he just doesn’t eat like his twin brother can, which he wants SO badly to do. I’ve noticed that lately if I give something to either of his brothers, Nolan will FLIP if I don’t give it to him too. He goes to speech therapy twice a week and the results are so up-and-down, it’s ridiculous. Sometimes I can get him to eat 5 bites of baby food…then he’ll eat nothing for 3 weeks. Then it’ll take him 3 days to eat a pouch of baby food…then he’ll spit up daily for a week. Ugh, so frustrating! To make things worse, Nolan’s GI team put in the G-Tube but never once put a plan in place to get him off the G-Tube. Say what now?
In my last post, I mentioned an internet radio show about CHDs called Heart to Heart with Anna. During the episode where I was a guest, Anna mentioned a previous show she did about heart kids and G-Tubes. A few days ago, we had a listen to this episode and our eyes were opened. It talked about a parent who used a program in Austria called No Tube, and her child was weaned completely off tube feeding in a matter of weeks. WHAT?! So we did the research: this program is very in-depth (and expensive) and have a success rate of over 90%. WOW. And why don’t we have this in the US? My wife and I did a ton of research (she did more than I did) into the subject and found parents who used the system or one like it to successfully wean their kids off the tube. Obviously we can’t afford to fly to Austria and we couldn’t afford the web-based program, so we’re off to try it ourselves. The key is understanding that tube-feeding keeps kids full…and if you’re full, why eat by mouth, right? Right.
So last Saturday we started by waking Nolan up and giving him a VERY small tube feed while trying to feed him by mouth. He had like 2 bites and then refused. So we turned off the pump and let him play. Some time went by before we decided to try again. This time, Nolan TORE up that baby food! A few hours later, we tried it again and he ate some more. Then we kept repeating. While he was eating, we would run the feeding pump, so he wasn’t dehydrated or under-nourished. By the end of Saturday, Nolan had eaten two entire containers of baby food by mouth!
Look at that happy, messy face! He went to bed with a full tube feed that night and we repeated on Sunday.
On Sunday he did an even better job of eating: he finished 3 whole containers of baby food and even drank some water from a cup! YES!
So we’re going to spend the next couple weeks working very hard to keep up the feeds by mouth. It’s hard work and fairly time-consuming…but it’s worth it! The results don’t lie! I know he has quite some time to go before we get that G-Tube out, but this is a great step in the right direction. I will continue periodically documenting his progress here on the blog and I know it’s going to be a HUGE celebration once that G-Tube is out…and that is definitely a reality, as he’s made more progress in a couple days than he has in almost a year.
The truth is that many G.I teams here in the states will put in the G-Tube but don’t have a plan for it to come out. That’s a shame: it’s left up to families to work hard with the child and therapy teams in order for this to happen. Nolan’s speech therapist is AWESOME and she has worked very hard to get him to this stage. Now’s where the real work begins! I’m so thankful for Nolan’s progress and thankful for the folks in Austria who developed such an amazing program. In their honor, here’s another Austrian that EVERYONE loves:
I’m going to write this blog post as a “Positivity Sandwich”…so here’s some good stuff. I think being around such a massive family during Christmas in Florida helped Nolan tremendously. Why? Because people eat…and a lot of people eat a lot. There must’ve been like 32 people sitting at the table in the dining room whenever we’d eat together…and I really think Nolan felt left out after seeing everyone eating while he’s on a feeding tube. So once we got home, he’d pitch an ever loving fit whenever he’d see one of us eating something. That, and he’d try to reach for it. So we obliged him with whatever we thought was soft enough for him to handle: cheesecake, baby food, yogurt melts…you name it. And he ate it! Granted, it wasn’t a huge amount, he’d eat pea-sized amounts each time, but this was a HUUUUUUGE turn in the right direction. Prior to this, he’d been doing tons of swallow therapy but showing no interest in eating. We determined his favorite thing to eat was veggie straws, because he can hold them in his hand and they dissolve easily in his mouth. Win!
Good news, right? Now for the URRGH stuff. Sometime back when Nolan was having some ear troubles, my wife took him to our Pediatrician’s office. Unfortunately our normal doc wasn’t available so Nolan saw another one. He said something to my wife along the lines of, “Did you know he’s got a submucosal cleft palate?” WHAT? What the heck is a submucosal cleft palate? We’d look in his mouth and wouldn’t see anything. Even my father in law looked his mouth and didn’t notice anything. Heck, his cardiologist made a confused face when we mentioned it to him. So we made an appointment with a cranio-facial surgeon to take a look at him. That appointment, due to Nolan’s flu issue, didn’t happen for awhile. It happened in January 2014. My wife took Nolan and it was confirmed. He had a fissure in his submucosal cleft…but the doc wanted him to keep doing speech therapy and come back in several months. I’d be lying if I said I had ANY kind of positive/hopeful outlook about this. I was extremely frustrated and deflated. Nolan was doing so well…his heart was functioning great and he was making some strides with eating. Now this. Would he require surgery? We didn’t know. How would this affect him long-term? We didn’t know. All we could do was wait. I remember being in my office when my wife called me with the news and I was just overwhelmingly sad.
Now back to the positive…after all, I’m an optimist by nature. The good thing about taking some time to think on things is that it lets you look more “big picture.” I did some research on the interwebz, and even chatted with a physical therapy manager about Nolan’s condition. I learned that there were techniques to feeding kids with this condition that could be very successful, and that this could’ve been the cause of his difficulties feeding in the first place. Interesting. While I’m still amazed it hasn’t been caught for like a year, I’m glad they found out. If Nolan does have to get surgery, that’s gonna be horrible and I’ll be sad…but long-term it should help him with speech and eating. There are also lots of people, I learned, who get nothing done. They learn feeding techniques and learn to speak just fine. So we’ll see…and we’ll hope…and we’ll pray. Without that, the negativity will eat you alive. So here’s to hoping our little fighter continues to beast his way through all this!
Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU. This will always be an awesome moment for me and I’ll tell you why. Nolan wasn’t the best at bottle-feeding after birth. The nurses would give him about 15-20 minutes to complete a feed. If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds. As you can see in the photos, he had an NG tube in by the time these were taken. They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed. One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout. That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.
It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses. None of them. Sometimes, though, he would eat pretty well for me. And just me. I was definitely feeling the Dad love there! So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy. The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin. At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me! I tried to feed him as much as I possibly could because I absolutely loved that bonding time. I held him and he’d drink quietly and it seemed like all the problems would go away. It was a sweet time to be with my boy. And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…
My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down. So he knew me…we bonded…and it was awesome.