I posted a bit of an update in the comments:
Today he had an endoscopy, for which he had to be under anesthesia. Horrible. He has seen a cardiologist, an immunologist and allergist, a gastroenterologist. He’s had a swallow study, a brain scan, an EKG, a cardiac ultrasound and EVERYTHING checks out normal. We are on the waiting list for feeding therapy. It’s a four-week inpatient stay. I’m sort of falling apart.
Here’s a bit more on all that.
We go to lots of doctors appointments. Sometimes three or four in a single week. And every doctor, every procedure – they’ve all lead to one dead end after another. Immunologist, Cardiologist, Gastroenterologist, Oh my. Charlie’s endoscopy revealed that while he may have a bit of reflux, that’s not the source of his refusing to eat. His innards look lovely. His cardiac ultrasound revealed a beautiful ticker, ticking away just as it should. The gastroenterologist believes his problem to be wholly unconnected to his digestive system and is ready to release us. To a neurologist. For more tests.
The ‘ologists in general have been a parade of frustrating and sometimes infuriating interactions. One didn’t listen to my voicemail about a lab error because he’s “not a fan of parents looking stuff up on the internet.” No, I’m not kidding. Another helpfully suggested that perhaps “god and time” might heal my son.
God. And time. I looked around the room to be certain I was in a doctor’s office and not a chapel.
Through all of this, I have tried to drag myself out of the fog of stress and worry to crack a few jokes and take comfort in the fact that our son is healthy and happy. He just eats through a tube in his nose. But one non-answer after another and I’m at a place where I want to scream, MY SON EATS THROUGH A TUBE IN HIS NOSE! And although inpatient feeding therapy sounds extreme, Charlie hasn’t eaten in nearly two months and we believe that this is the best way to undo old habits and form new ones – and hopefully, a positive association with eating.
Some days, I feel that all I am is my son’s disorder. Which, from talking to another mom of a kid with special needs, is a pretty common feeling. Some days you’re just drowning in it. The worry – over his long term well being, over your shorter term financial struggles, over your own inability to help your child with such a basic need. I feel so powerless. I can’t plan or make real decisions, only react to the ever changing demands of my tiny overlord. Whom I love so much.
I owe some of you some thank you’s for the kind donations – I cannot tell you how deeply I appreciate it. I swear I’ll get caught up on my mail this week. I think we have a break from ‘ologists until next Monday.
I know this comment has nothing to do with your post but it must be said…
He really is the most adorable child.
I’ve been having fun re-reading your archives from the very beginning and, as always, have loved the glimpses into your life. Even though life is VERY different for you now, I always appreciate your candor, your focus on the positive even in the darkest depths, and your unabashed cat-ladyness (and its obvious translation into some super-duper person-mothering skills!).
I’m rooting for you and your little guy, and hoping you and the Dork Lord get some support too. Even though it’s overwhelming, I know you’ll take your sticktoitiveness and creativity and find whatever solutions there are to be found in order to continue providing Charlie with the best life possible. He’s lucky to have you guys!
Warm wishes (I don’t pray but I’m sending tons of positive healing vibes your direction!)from Cali…
I am so sorry to hear of this struggle. You are in my thoughts. Best of luck with the next approach.
I’ve checked in a few times hoping for good news and I’m sorry to read you’re still looking for an answer. I know I don’t need to tell you this, but Charlie is gorgeous. He’s lucky to have you in his corner. I hope you find an answer soon. In the meantime, hang in there and enjoy your handsome little man.
So sorry that Charlie’s mystery hasn’t been solved, but oh is he so cute!!! That smile of his is amazing!
Poor little guy (and poor Mom and Dad)!!!! So sorry you are all going through this. Hope a solution is found soon.
He really is a beautiful baby
I am so so sorry to hear that they can’t figure it out. I am sending positive thoughts your way for the feeding therapy to have a successful outcome.
Heather, he is just adorable. How happy does he look in those pictures. I hope the fog lifts soon and you are able to truely enjoy every minute with your adorable overlord.
Dr. God & Time is probably due for a complaint to the state licensing board, because I’m pretty sure those aren’t clinical terms. Isn’t Dallas known for some world class children’s hospital? I’m quite disgusted to hear what some of these ‘ologists are saying to you. So sorry you’re going through all this, and Charlie is crazy adorable. I’ve been looking at lots of royal baby pictures this past week (he’s 1!, and they’re full of gushing comments about his royal cheeks. Let me tell you, if Prince George could see the cheeks on your Charles I, he’d probably retire.
Yes, Dr. God & Time should look into a career change and enter seminary. You are too busy right now, but when Charlie is on his merry little eating way, I hope you report that quack.
People think they are doing you a favor by “praying for you” or advising you to “leave it to god,” but they are just offending me and dismissing my very real problem to the realm of voodoo crazy land.
I don’t mind the “I’m praying for yous” from friends and acquaintances or even strangers when there’s a health or other crisis in my life, because I appreciate the intention. But NOT from a medical professional — especially of the ‘ologist field! — nor any other professional. They’re supposed to have hard info. Just the facts, Jack.And an “I just don’t know the cause” is perfectly acceptable imo, even along with something like “conditions like this can resolve as the baby gets older,” which may be the same as “trusting in time,” but sounds a whole damn lot more professional!
I am so sorry you are going through this. However, while it is frustrating, the good news is thus far all tests are normal. Have you tried letting him have/play with solids? I know that isn’t a solution, but it might be worth a shot?
At not quite 3 months, his little system can’t handle solids yet.
He’s almost 5 months! So crazy.
For some reason, I thought he was born in May. Whoops, sorry!
I wish I had some words of wisdom to make you feel better, make this all go away. Best I can offer is a ‘hang in there!’ He’s a truly adorable child and I hope you are looking back on this episode in the very near future as a small hurdle you had to get over! I’m sending all the good vibes I can your way.
A friend of mine had a baby that wouldn’t eat and it turned out he had a problem with his jaw that made eating uncomfortable. Has that been explored yet?
He sucks on a pacifier constantly. There’s nothing wrong with his mechanics.
This is all just too much to take. I agree with DJ that he is simply adorable, even with a feeding tube up his nose.
I am keeping you in my constant thoughts and wishing that this gets figured out soon.
Also, I agree with others that God has no place in a conversation with a board-certified physician.
I hope the inpatient feeding thing works. It’s hard enough to have a child let alone one who struggles to do something so basic. I’ve been thinking of you.
I’m sorry your ‘ologists are…….well I was looking for a kind word for asshole and coming up short.
If he takes a paci, then hopefully the feeding reboot will handle things. In the meantime than goodness for modern medicine so he can get fed while refusing to do it himself.
I wish you the very best.
I am so sorry to see that little Charlie is still struggling with this. I have had two reflux babies myself and I know the horrible feelings when your baby won’t eat; it’s devastating. I for one have spent so many hours just bawling over it. But neither of mine ever held out more than a couple of days (at a time) without eating at all – Charlie must have incredible stamina! I hope you find answers and resolution soon and I wish you, all three of you, the resiliency to get through it all.
Continuing to send you best wishes. I wonder if these ologists consult with each other about your son? And if not perhaps that should be happening? (I’m sure they receive each other’s reports, I mean an old fashioned meeting or at least conference call). I am so sorry about the insensitive comments. And I add to the chorus of voices here -wow he is so adorable!! Love the mirror photo especially!
Have you heard of SOS feeding therapy? it’s a very gradual and interactive approach to getting toddlers to not be afraid of food. Some speech therapists and occupational therapists are trained in this approach, and the STAR center runs a workshop applying it to infants. You could contact them to find out if there are SOS trained therapists/centers in your area http://spdstar.org/sos-feeding-solutions/
Awww Fish, I am so sorry you are going through this. Poor little Charlie too, although from your reports he seems happy in other respects and assuming an eventual happy ending he will not remember any of the prodding and invasive traumas. But you must be at your wits end dealing with all the -ologists, and simply not knowing what is wrong or what to do. Hang in there. You are an amazing women and many people are out her who care about you. Most importantly, if he is checking out “normal”, even if something is wrong (after all he is eating through his nose)they must have eliminated the most serious potential issues on their check list. That gives me hope that this ordeal will end soon and you can return to the normal joys (and normal frustrations) of being a mom.
Charlie is a-dorable! And he must be a real trooper to go through all that he has.
I’m hoping you find an answer to this soon, the stress must be enormous.
Positive thoughts and prayers headed your way.
I’m so sorry to hear about this!
I had this issue as a baby (11 million years ago) minus the feeding tube but plus and oxygen tent because I had a respiratory reaction, because somehow the doctor (not an ‘ologist) figured out I was allergic to dairy. I hope they get you easily fixable answers fast! (and not to sound dumb, but have they checked him for tongue tie? Likely they have, probably one of the first things, but I don’t want to assume.)
Maybe try Barnes or a hospital like that? Where all the ‘ologists sit down together and try to hash out his problem?
I just had my little Fleur 14 weeks ago, and reading all of your troubles just breaks my heart. But what a gorgeous little fella he is.
When reading about it, I keep thinking of an Australian ‘Woman’s Day’ article that I read, many moons ago, on something similar. I wonder if there is some way to access it?
…I sent an email to the magazine…let’s see if we can find anything out!
Dear Heather,
Sending you love, as always. I hope this passes and quickly.
Man, it’s been a rough few weeks, huh? Don’t ever doubt that you are handling it like a rockstar, because you totally are. Hang I’m there. You have lots of internet mom stalkers rooting for you!
So sorry to hear you are going through this hell. As the mother of an 18-month-old, I know how problems with your child just tear your heart out.
But what great news that the important tests are normal. Most likely this will be one of those stories that you tell people one day, hardly believing that you and your husband went through all that, since it’s something you don’t even think about because everything now is TOTALLY FINE…but I know firsthand that until things are totally fine, it is very difficult to believe that day will come, and impossible to think of anything else in the meantime.
So I’m just sending you all my best wishes. And another completely objective observation that your son is one of the most beautiful babies I’ve ever seen.
Lots of love.
Look at that kid! Such a cutie! I am definitely not a medical doctor so I can offer no suggestions. But I do want to let you know I am still sending thoughts of health and peace to your beautiful family.
I would like to make a small donation. I know first-hand how it is to be trooped from doctor-to-doctor and how the costs mount.
Is there an an address you use?
Best,
John Corcoran
I would like to make a small donation to help. I know first-hand how difficult it is to go from doctor to doctor and how costs mount up.
sincerely,
John Corcoran
Thank you – that’s so kind. It PayPal ok? There’s a link up on the right.
Heather:
I have only one credit card and PayPal won’t accept it. I don’t know why because it’s AMEX. If possible I’d like to send a check. I could send it to a work address or some 3rd party address. I’d make it out to Heather Hunter.
I understand how busy you are. There’s no hurry to this. My donation won’t expire. When you get a chance let me know.
John Corcoran
OK. PayPal works with my card. Chalk it up to inexperience