It’s a long story, how we got from here to here in the span of 24 hours. I’ll try to sum up.
Feeding Charlie has never been easy. And by the time he was 10 weeks old, we’d seen the doctor for it more than a half dozen times, been on two different acid reflux medications and three different formulas. By the time he was 12 weeks old, each feeding was taking upwards of two hours – and he hated every minute of it. Still, no one seemed in any real hurry to solve our problem. After all, he was gaining weight, meeting his development criteria. He was happy.
I quit my job to care for him. No part time, no nothin’. We couldn’t afford the kind of caregiver that would spend two hours out of every three feeding our baby. We finally insisted on seeing a specialist, who ordered a swallow study – he was convinced Charlie didn’t have reflux, he just couldn’t swallow properly.
Within 12 hours of our visit, Charlie stopped eating altogether. The doctor on call at our pediatric gastroenterologist called the hospital emergency room and arranged for a bed. We packed up Charlie and headed to Medical City, knowing we’d come away from there with a feeding tube. The experience was, at times, nothing short of awful.
The nurse in the emergency room took an agonizing amount of time getting the tube in Charlie’s nose. I had to leave the room and go for a walk. When I returned, she was still at it. He cried for nearly four hours straight afterward. So did I. And knowing full well they were not going to let us leave the hospital the next day until I learned to put his tube in, I was miserable with anxiety. Turns out, I was a quick study and had the unpleasant task done in seconds. Seconds! After spending the Dork Lord’s first Father’s Day in the hospital, we were released.
The next day, we had the swallow study that the specialists were convinced would reveal our problem. It did not. Charlie swallows beautifully, and we were back to square one. This week, we have blood work (I’m dying inside at the thought) and a neuro-sonogram, which will rule out (hopefully) and problems with Charlie’s brain. In the meantime, our little non-eater is being fed through a tube… and his new magic, special formula runs a whopping $155 a week. Good thing I quit my job, huh?
And good thing he’s so darn cute. The cause and the cure for my stress.
I check every day to see if you’ve added a new posting and just want you to know that you are in my thoughts. I’m wishing you an answer to Charlie’s feeding issues. And I have to say, again, and you already know, he is just beautiful!
Whoa. Just…whoa. All fingers crossed that things get much better soon.
Those pediatric people are surprisingly good at getting blood out of a baby’s arm. I unfortunately know this first hand…
And that nurse needs to be fired.
Oh! Poor baby, poor mom & Dad! I hope something is figured out soon that will ease the burden.
Oh, Heather! I’m so sorry that little Charlie (and you and the DL) are going through this. I hope you find answers for Charlie soon. He is a beautiful baby.
Oh no, I’m so sorry to see this. What a horrible stressful time for you all. I hope they find and fix the cause of the problems soon, and that things get a bit easier for you. He is one super cute kiddo though. Good work!
oh god, the agony of your new baby being tortured by a ‘medical professional’. Been there, it’s the worst. You’re right, he’s so stinkin’ adorable. He actually looks like he’s smiling with a tube in his nose! You can tell he’s going to be one cool little dude.
Oh Heather, I am so sorry… I am writing this through tears. You do not deserve to have to go through this stressful situation. (No one does, but you have done everything right and have already been through the ringer.)
I really hope you get some good news soon. I will be thinking of you non-stop.
Holy $&@!, Heather. I am so very sorry you, DL, and Charlie are going through this. GREAT job with your persistence and for making the decision to quit your job so you could make Charlie your top priority (not that he wasn’t already but I know the financial ramifications are adding to your stress). I sincerely hope you will look back on this time as the darkness before the dawn and that you will know you and the DL did everything right. Thinking of you all (and adoring your gorgeous boy).
I am so sorry for you, The Dork Lord, and Charlie. Keeping my fingers crossed that the docs will figure out what is wrong very soon and be able to fix it with as little further trauma and stress as possible.
Well, I’m relieved. I’ve been scrolling through your photostream (yeah, I guess I’ve achieved stalker status; fortunately, I’m about 1000 miles from you and hate flying), and the ER & feeding tube pix, combined with a lack of posts had me fearing Something Awful. I know it’s still Awful for you, but for this faraway reader, seeing his smiley face with the “Tube? I don’t care about no stinkin’ tube” expression is making me smile. My medical prediction, by the way, is that all tests will be inconclusive, and in the meantime, the feeding/swallowing issue will resolve itself for no known reason and will never appear again.
Big hugs to all of you!
I’ve followed you for years, since Boston, and I don’t think I’ve ever commented. I’m not sure what to say, other than it does get better. I promise. My son had digestive/eating issues and threw up, almost daily, for a year and a half. I would watch other parents feed their babies and marvel at how easy it looked. My son screamed and screamed. It’s a horrible feeling to watch your child go through something like that. But, it did get better. It does get easier. The baby months are like nothing I’ve ever experienced.
Poor Charlie! Poor you! I hope they find answers soon, I’m so so sorry that you’re going through this. It’s the worst kind of heartache watching your baby suffer
Hi Fish, I’m a loooong time reader but first time commenter. I’m so sorry you are going through this. I have some experience. My daughter, now 10 months, is intolerant to cows milk protein, which it took months to diagnose, and a number of other things and also has silent reflux. I’m thankful she didn’t have to have a tube but it was touch and go and none of the meds have worked. I just wanted to recommend an amazing reflux/silent reflux Facebook page. Lots of mums in the same boat who can identify with what you’re going through. I’m in the UK but there are many mums (moms) from the US too. https://www.facebook.com/groups/267076970042881/?fref=nf you have to request to join but it’s been a massive support to me. Best wishes to you all.
I’m so sorry you all are going through this. We had feeding issues with my daughter as well, and it was just miserable for all involved. We avoided the feeding tube but did spend a memorable Sunday in our local pediatric ER after my daughter had not eaten without spitting it all back up for 24+ hours at eight weeks old. It was soooo frustrating the degree to which the medical professionals didn’t recognize that there was a problem – until suddenly they did. We also ran through a couple of reflux meds before finding one that works, and after trying all sorts of elimination diets for me, ended up with special formula rather than breastmilk. BUT the good news is once we finally got all the pieces figured out (through a lot of advocacy and research of our own), it made a world of difference. And I now have a happy, healthy 22-month-old who has finally been off all meds for a few months and can eat anything without a problem. And I know lots of other moms of babies with eating problems (we all seem to find each other) who are in the same position with happy, healthy, totally normal toddlers. You’ll get there, too.
Oh, and also, I’m assuming Charlie is on a formula along the lines of Neocate – if so you may be able to get your insurance to cover it. It may take some digging and some pushing to find out, but in many states they’re required to cover it if it’s medically necessary. (And it looks like Texas, where I believe yo live, is one of them). Good luck – insurance is a whole ‘nother rigamaroll.
Insurance won’t cover Neocate until we’ve met a $4,000 deductible. Stupid insurance companies.
Shoot. Though the good news/bad news is you’re probably going to meet the deductible pretty fast with the issues he’s having – we blew through ours the first year, and will hit it again this year. In fact, with your ER visit you might be closer than you think.
Heather,
I just wanted to de-lurk long enough to say that I hope things get easier soon and that you can look back on this moment in a few years as a short-lived unpleasant blip in an otherwise lovely healthy life.
Oh, sweet and beautiful baby boy! Heather, I’m crying for your pain. I have a 7 month old who spent a little time in the hospital at two weeks old. It’s heartbreaking.
I hate that you’re all going through this. Nothing is as heartbreaking as seeing someone you love – especially a child – in pain or discomfort. I hope that your doctors find the solution as quickly as possible so that Charlie can get back to being a happy baby and you and the DL can get back to being happy parents.
I found you back in the I-Village days, when I began blogging, and then I lost track of you, and then I found you here a while back, all married and with a baby on the way.
I haven’t commented since years ago, but I wanted to tell you that you’re in my thoughts as you go through all this with Charlie. I cannot imagine the stress!
My sons are 24 and 30, so parenting I know, but having a sick newborn is something I’ve never experienced. Here’s hoping they can find the problem and get Charlie back on track.
Big Hugs.
That precious beautiful baby. So much love to the three of you.
Dear Heather,
My thoughts are with you and your lovely family. This sounds utterly agonizing. I hope the tests can at least provide some answers.
Best.
Wowza. I’m so sorry to hear what your family is having to endure. The universe seems intent on throwing stuff your way. However difficult it must be, I hope Charlie’s smile can bring some comfort. Sending thoughts of peace and health your way.
I had the same thought as Kristin, and we too have run into the deductible issue. We found ourselves needing an AA based formula and found that the manufacturer and Amazon sold it for half the price the only local “pharmacy” that carries it. You may have already found this out, but thought I’d mention it just in case. Every little bit helps.
Crossing my fingers for you guys and hoping Charlie does well on his new formula!
So sorry you are going through all of this and thank you for sharing this with all of us. I’m really commenting to say that Charlie really is the cutest little nugget, and the pic of him smiling with his tube in is just way too adorable.
Sending you good thoughts for resolution on this issue. I love his wrinkly head – ADORABLE!!!
I’ve unfortunately watched several people I know deal with this. Make them look at his heart. All 3 babies who had swallow/eating/and later gaining issues(they do great at first then all but fall off the chart) had heart issues of one kind or another. Be a pain, demand answers, you are his best advocate.
I’m sorry you had to sit through that. Sometimes the most inept people seem to work with the tiny humans and it’s awful for everyone involved.
Hi Heather, I hope things get better for you from now on! I am praying for you and your family. Little Charlie is indeed extremely cute and you and the DL are obviously doing everything you can to look after him.
My heart goes out to you. I am thinking of you and your beautiful family, and hoping that things quickly get figured out and Charlie is soon healthy.
My heart goes out to you, Fish. There’s absolutely nothing a mother wants more than a healthy child. I can’t believe that incompetent nurse and the pain you all must have been in as he cried for hours! I’ve been stalking your photos, and it looks like Charlie isn’t missing a beat and is handling his new feeding friend like a champ. Did the nuero come back okay? Any other test results yet to explain this? I’m glad another poster chimed in about having his heart looked at. Leave no stone unturned. Big hugs to your whole family that this is figured out soon, and I’m sorry that your first year of being a mom has been so hard.
Our son, now 15, had a terrible time eating for the first two or three months. We fed him with a tube taped to our little finger. It took about an hour or two to get each meal in. Turns out he had weak facial muscles and could not suck or chew. Maybe check this out with the doctors. Now he eats everything from tacos to pizza (OK, still a limited diet) with no trouble. Normal height, underweight for his age. No worries about obesity. Good luck to you and the cute baby.
devastated to read this. my heart goes out to you. hope everything will turn out fine for the little one. and you of course. will keep you in my thoughts and prayers.
Oh no! I’m sending good vibes your way! I’m a 4th yr med student and I had a WTF moment when you said the nurse couldn’t get the feeding tube in! I’m sorry that Charlie had to endure that agony, but I’m also glad that you figured out what should be a very simple procedure. I hope they figure out what’s wrong soon. These babies and their…need to eat and stuff…
Fish, do you have time for a quick update? Even if it’s just in the comment section? I really hope things are going better. Is there anything we can do to help?
I will try to do a real update tomorrow. 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.
On the one hand, thank heavens. On the other hand, WTF – why can’t they figure out what’s wrong when something clearly is?! I’m so sorry, Fish. I can only imagine how hard this is. I hope he doesn’t need the inpatient stay, but if he does I hope it is the answer you are all looking for. Big hugs!
I am sending you and your lovely family all my best from one mama (of a boy) to another. I hope they have some answers soon and I hope you take some comfort in all they have ruled out so far. I hope you get off the waiting list very soon for the feeding therapy. I hope you get some sleep and time to breathe (and your husband too).
That was update enough… I am so, so sorry. How can you be on a waiting list when there is a baby not eating?!?
Is there anything we can do for you? Even something as silly as ordering you and your husband a meal and having it delivered?
I’d join in that…if someone in Dallas area knows a vendor for this…something like 2 weeks worth of dinners or similar and can set up payment deal with vendor or via dependable Paypal acct.
Yes, I agree with Melanie. Update enough. You poor things. Charlie is lucky to have you fighting for him. Please let us know re: ordering a meal, or maybe some of that Neocate stuff?
A friend of mine who has been following your blog for a long time posted this link on her facebook wall. I have eleven month twins and one of them had silent reflux for more than six months. Basically, he would arch his back and choke silently on his reflux. It was terribly scary. We had to keep him up for a good hour after every feeding. We went to see specialists, nothing was solving the problem. My husband and I being scientists, we tried so many things trying to get any small improvement. In the end, we realized something in particular that helped tremendously his condition. It was by all means not recommended by our pediatrician but it made such a difference. We let him sleep on his belly. We had (and still have) BabySense which has been monitoring his breathing, in case of SIDS. I will tell you that our pediatrician said that he could not recommend such thing but a lot of pediatrician’s children sleep on their belly and in general, babies sleep more deeply if they are on their bellies (which is why the American Association of Pediatrics) says it may increase the risks of SIDS. We still had to keep him up for an hour or so but at least, he (and we) could sleep the rest of the time. I cannot guarantee this will work for your baby but it may be something you may want to look into… By the way, now our baby is healthy and only has reflux very rarely. I hope that helps. Best wishes to you and your family!
Sending healing thoughts to you, your hubby and little man. Thinking of you and hoping for the answers you need.