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!
This is part 3 in a series about thankfulness.
My Dear Nolan,
This Thanksgiving, and as we approach your 2nd birthday, I can’t help but reflect constantly on how far you’ve come. This year you’ve crawled for the first time, you walked for the first time, climbed for the first time, ate multiple feeds by mouth for the first time. You are an amazing little boy! I remember the fear that gripped me when we found out about your special heart and the even stronger fear when we left you in pre-op for your first heart surgery. I worry about the struggle to get you off your g-tube, it saddens me that you can’t eat the snacks the other kids eat at church daycare, and it used to pain me to hear your screams and cries when we’d practice physical therapy just to get you walking. I wish your life could be toys and games, not appointments and therapies.
I wish I could understand what it feels like to have a single ventricle…does it feel funny/weird? Is it exhausting? There have been many times that I thought – if I could – I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it meant you could have a whole heart.
But you know what? You wake up daily with a smile and joy that dwarfs those of us with complete hearts. You survived two serious heart surgeries and everything involved with them. You went from a kid who couldn’t even sit up to a little ball of energy who walks around the house and throws tupperware around. Every day you wake up you beat the odds and show me what toughness and bravery really mean. You teach me to look on the bright side, to find the important things…and to be joyful. You’ve taught me not to say “Woe is me, this is too hard,” and instead say, “Look how far you’ve come!” You have one heart surgery left, and I have no idea how I’m supposed to explain it to you, how I’m supposed to explain that it will hurt but will help you live a great life. But you know what? We’re gonna get there and get through it together…as a family. There will be lots of questions that I may not be able to answer, but I promise I will work hard to find those answers. You’re not at a disadvantage, rather you’ve been given the chance to be extraordinary! I want you to grow up and just love people, and care just as much for those who are going through tough times. Show them how you’ve kicked CHD’s butt and be an example for never giving up.
So now, instead, I think I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it means you’re going to have the best life possible, in spite of your special heart. I love being your dad…it’s an honor to be your dad. It’s hard work, but your smiles, your laughs, and your gibberish make it all worth it! Your mom and I will continue to fight to get you the best life, the best care, and all the love a little boy – CHD or not – could possibly get.
So this Thanksgiving season, I want to thank you – Nolan – for teaching your old man how to be brave, for teaching me how to fight for you, for teaching me never ever to give up. Thank you for giving me real perspective on life. Thank you for the opportunity to meet and help families just like ours. Thank you for being – pound for pound – the toughest human being on earth. I can’t wait to see the places you’re going to go!
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:
So as you know, Nolan is still on a feeding tube and that has been an immense challenge for us (and him). After Nolan turned 1, he was moved from formula to PediaSure. At first it was pretty convenient: they came pre-mixed in little bottles: just open, pour, and start the feed pump. Otherwise, though, it wasn’t too great. Nolan spit up a ton while getting PediaSure…and the stuff smells disgusting, especially the strawberry one…BLECH. So after awhile doing this, Bekah came up with the idea of seeing if we could give him a blended diet. After all, Grant was eating regular food…why can’t Nolan? Not to mention that PediaSure has a bunch of sugar and other questionable ingredients…we wanted to know just what we were putting into him.
The G.I. team eventually went along with the idea, which required changing out his g-tube to a little larger size. We got a Blendtec blender, which is supposed to be one of the best, and we armed ourselves with some recipes.
His feeds began to look like blends of chicken, spinach, quinoa, and olive oil, for example. It was bright green and weird-smelling, but at least we had control over what went into his body. The biggest challenge is that we can no longer use the feed pump for blends: instead we have to push it through with large syringes…so no more “set it and forget it,” we need to take our time doing it. While we acclimated to the new routine, we still used PediaSure for some feeds, but focused mostly on the blends. The Blendtec worked GREAT, just as advertised. It blends everything completely (and is even featured in some pretty hilarious “Will it Blend?” videos online). Nolan started to put on some weight and it seems like so far, so good.
We know this is a lot more work than the PediaSure, but again we want him to – in some way – experience what it’s like to have the same food we’re eating. It’s a lot of work but we’re hoping it will pay off.
So those heart parents with kids on g-tubes: how many of you have tried a blended diet with them? Is it working well for you? Do you have any good recipes to share?
It was starting to look more and more like Nolan was getting ready to be sent home. This long portion of our journey would soon be over! But hold up, not yet. We had to complete…THE CHECKLIST. We were presented with a discharge checklist of things that we needed to learn, perform, and complete prior to Nolan being allowed to go home. This included things like learning how to draw and administer his meds via the G-Tube, sitting him in his car seat attached to a sat reader for 30-45 minutes (the equivalent of a drive home), learning the CHAMP program, setting up his feeds via G-Tube, learning infant CPR, and spending one night at the hospital completing all his care. Some of the tasks were pretty easy: the CPR lesson came in a packet from the American Heart Association that had a little practice dummy and a DVD to watch, then a nurse reviewed it with us (the good thing is we got to keep this kit so we can share it with people who would dare to watch Nolan).
Some of it we completed separately due to our schedules. The one thing that got me nervous a little was drawing meds. I was really wanting to pay good attention so I didn’t mess things up. I checked, re-checked, and checked again before administering the meds. Nowadays I’m a beast at drawing meds. Once we got comfortable doing everything else, including feeds, it was time to schedule a day to stay over at the hospital. I arranged everything with work, but honestly we weren’t looking forward to it as much. Not because Nolan was on continuous feeds and we’d need to prep his formula, or that we’d have to remember when to give his meds. It’s because his room at Progressive Care was TINY. It had one little couch along the wall that was no more than about 6 feet long. There were 2 of us. I’m over 6 feet tall by myself. So I let my wife sleep on the couch and I had the pleasure of sleeping in a rocking chair…yeah, that sucked. Big time. But aside from some chiropractic issues, the night went well and it was good to see everything on THE CHECKLIST signed off. The next step was to wait for doctors’ approval to send Nolan home…oh the suspense.
Nolan was doing well in progressive care, but due to him being intubated for so long, he had pretty much lost his sucking reflex and bottle-feeding was out of the question. Speech therapists would come in from time to time to work on it, but he was getting all of his feeds via an NG Tube, which went into his nose and down to his stomach. Nolan hated that thing: he would always try to pull it out, and when he would pull it out even an inch, he’d barf everywhere. Nasty. And he was a major league ninja about it too, you’d unswaddle him to change his diaper and BAM, that little hand would whip up and grab it.
According to the staff, they wanted him to take 75% of his feeds by mouth before not considering a feeding tube any longer. Unfortunately that wasn’t going to happen. I happened to be in the room one afternoon with Nolan, on a weekend, when a GI doctor came in to chat with me about what would happen with Nolan’s feeds. He talked about something called a Gastronomy Tube, or G-Tube, which would have to be surgically placed. Oh great, another surgery. He assured me that this would be a safe procedure. I know the surgeons said that losing the suck reflex is common after the Norwood Procedure, but I really didn’t think it would go this far. Basically they’d have to go down his throat and then put a tube through his skin directly to his stomach. A tube would be sticking out, which we would use for feeds and medications. It was pretty sad to see Nolan go for another procedure…but I was hoping that he’d get this done the first shot.
When Nolan came back, he was asleep and had the tube sticking out. It was held in place with this round disc, and it looked huge on him. I felt bad for my little guy…he’d been through so much. I was told that he would be in a little pain once the pain meds wore off but that he was scheduled for some tylenol for pain. And you could tell once the pain meds wore off because he was CRANKY. I tried my best to console him: talking to him, singing to him, consoling him, playing him music. Nothing worked. Then it was time for the physician on duty to do their rounds. And just WHOOOO was on duty this day? Doctor freakin’ Doom. If you remember from an post early on in this blog, “Dr. Doom” is the doctor who confirmed that Nolan had HLHS and she did it in a completely cold, soul-less manner. I REALLY didn’t like this doctor and there the doctor was on duty while my son writhed in misery. GREAT. The doc got an update from the nurse before walking to give him a look-over. I had my guard up, like I was ready to go to war. She turned to me and asked if I had any questions and I said, “I just feel like he’s miserable and in a lot of pain and he’s been like that for awhile.” She looked at Nolan again, then turned to his nurse and asked about meds. The nurse said he was scheduled for Tylenol a little later and Dr. Doom replied, in utterly mind-blowing fashion, “Well I can’t see why he can’t have some now. He’s obviously in pain.” Then she touched Nolan’s foot and said “Feel better, Nolan, you look great.” And then walked out. And Nolan got his meds.
What the what? I was stunned. This person who I so reviled for being terrible to us just did something nice for my son. Don’t get me wrong, it wasn’t super warm or friendly, but it was the right thing to do and she did it without thinking twice. I was shocked. So did she redeem herself? Not sure. Sometimes I acted stank about her around other people, but sometimes I didn’t say anything at all. It was an interesting introduction to the subject of forgiving someone…it planted the seed in my mind.