Taking a stand against tube-feeding crimes and negligence

Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health “care” system.

If you don’t believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children’s Hospital by weaning expert Markus Wilken, during his visit from Germany. This video is an invaluable resource, which I highly endorse, as you’ll see at the closing of this overdue rant.

Our tube feeding days are far behind us, yet memories haunt us. Like the time I inserted Stella’s nasogatric (NG) tube into her nose, only to have it come out her mouth, instead of going down to the base of her esophagus as planned. Of waking up every two hours to feed her at night, fumbling in the dark with a stethoscope and large plastic syringe in order to confirm correct placement of the tube before setting up the pump to run for 45 minutes–desperately trying to stay awake while it ran, so as to be able to respond in the event of a pump malfunction or choking incident. The blood that, after the first month of tube feeding, consistently encrusted the tube in her tiny nostril. And, in soul-crushing fashion, the bottles of outrageously expensive Elecare, not covered by insurance, that Stella triumphantly downed on occasion, only to re-emerge in projectile fashion thanks to tube-triggered gagging.

Crazily enough, none of these incidents were the turning point for me. None of them woke me up to the immediate need for the tube’s removal. Though I did often wonder how long this would go on, as there was no plan for weaning. I was doing what I was told because it was supposedly medically and therapeutically necessary. I have another mother to thank for my awakening–a mother who didn’t see such a need and whose child paid a huge price.

Back when Stella’s little baby face was accessorized by medical tape securing a thin but lengthy yellow NG tube, we made one of many trips to Seattle Children’s Hospital. This time for an abdominal ultrasound. In the waiting room, two women struck up conversations with me about, what else, Stella’s tube. “She looks so healthy,” said one, whose child also had feeding issues and was headed toward a tube. Then she asked the inevitable question: “Why does she have a tube?” I explained, and we commiserated about the misery of trying to feed a child who simply does not want to eat. The other, with empty eyes and a tired smile for Stella, commented along the lines of, “My son had an NG tube until he was five. Good luck. She looks great. I hope you get her off of it.” Suddenly, my stomach felt as though it were full of rocks. In that moment, I sank to a very dark place. But while down there, I resolved to never, ever let that happen to Stella. I decided to fight.

So, just to make this astounding fact clear, I’ll repeat it: I met a woman whose son lived with a nasogastric feeding tube until he was five years old. Five years of a thick tube through his nose (no doubt causing nasal ulceration), his esophagus irritated, the sphincters held open (encouraging reflux), food administered on some dietian’s strict schedule and chart regardless of what he thought or felt. It’s a perfect illustration of why I’m so angry. Really, really angry. I have been for a while.

I’m outraged at the treatment that many tube-fed children and babies are receiving from doctors and therapists. G tubes, the next step after NG tubes (if eating does not progress) and a much kinder solution in cases of long-term feeding, are not without problems. They require surgery, which when not done properly can cause extreme suffering and even when correctly inserted can contribute to excessive vomiting. I believe that there are many children with G tubes that do not actually need them, and that if physically able but still unwilling to eat, they should be given a chance to wean before surgery is considered. At the very least,  thoughtful, individualized approach should be taken by an interdisciplinary team of doctors, as opposed to the reckless, disorganized decision-making that is now widespread.

Based on my experience with Stella, I’m particularly concerned about those with long-term NG tubes, tubes meant only for short-term use. It’s not okay. Scientific evidence (which I will present in a later post) and common sense tell us that NG tubes cause extreme discomfort and difficulty (slowing of) swallowing. The frequent removal and reinsertion of this tube is traumatic and damaging for child and parent. No matter what kind of tube is used, a complete disconnect with hunger and extinguishing of the desire to eat is practically inevitable. The tube itself fuels eating refusal and aversion, long after the initial issues prompting the tube’s insertion have been addressed. (This is very different from children for whom tube weaning is not an option at all and long-term tube feeding a clear life-saver.) Families are plunged into despair, their lives shrunk down by the oppression of tube feeding (though, sadly, this comes to feel normal for many families), the incessant vomiting, the stunted growth that the tube was supposed to prevent, and the hopelessness that arises due an absence of a weaning plan. Or any plan for that matter. For most of these children, there is no way out. This is, with no exaggeration, a crime.

And then there is the so-called “therapy” provided to these children. When I hear stories of children being force fed, and there are a lot of them, I literally become sick to my stomach. It’s wrong. It’s a disgrace. Yet it’s happening at leading clinics and children’s hospitals across the country. One of the barbaric techniques used: Puree is shoved aggressively into toddlers’ unwilling mouths, which are then held shut for as long as it takes. As long as it takes for them to swallow–and it can take a very long time to swallow when you are terrified of food. What horror! Stella’s occupational therapist noted that some “graduates” of such programs later have to be desensitized after enduring such trauma, the process of learning to enjoy rather than fear food begins again but on even shakier ground. How can a brute-force approach possibly help a scared child discover the joy of eating? It can’t. If the child does eat, it’s not because they want to. It’s because they have no choice and no other way to make the torment stop. The children are sometimes called “obstinate” by therapists and parents who buy into the crazy, unbelievably misguided belief that kids are refusing to eat because they are, essentially, being manipulative little jerks. The children are blamed, their trauma and autonomy completely disregarded. Parents are pitted against children, forced to play coercive games. This is absolute insanity.

There are far better ways to wean children from tubes, to awaken their appetites, hearts, and minds. These methods are infinitely more effective and humane. They are based on respect and compassion, which every child needs and deserves! Beyond that, every child for whom it is safe (mainly, the many tube-fed kids whose initial issues are resolved) deserves to be given a chance to eat. For many families, weaning is never even discussed! Because the child is not eating orally. But why would they? Why would they suddenly enjoy eating when every three hours, formula is pumped directly into their stomach, sometimes only to come back up again due to nausea and rampant overfeeding? When Stella had her tube, our pediatrician said she’d just “turn it around.” As if by magic. That was never, ever going to happen.

I’ve been perusing blogs and boards of parents with tube-fed children and my goal has been to offer support whenever I think my experience with Stella could be relevant. It feels good to provide support and resources, to help bring about positive change based on such a negative experience. But I’m not sure I can do it anymore. There are too many heartbreaking stories of renowned hospitals directing parents to disregard their instincts and squash the dignity of their child. It’s overwhelming. I’ll start to type a reply to certain posts, ones that reveal that a child is being forced to eat in some fashion, only to delete it, because my thoughts are all over the place. My words too angry.  I wonder where to begin. How can I convince someone that the entire medical establishment is harming their child on a root level, rather than helping? There is too much ground to cover, too much fundamental education and changing of minds to do–more than can be conveyed in a comment box. I’m at a loss.

I have such compassion for the parents, yet feel such angst when I see the failure to question the clearly ineffective and detrimental status quo. You have to stand up for your child. No one else will. You have to call bullshit on doctors’ cavalier attitudes toward tube feeding, not to mention their lack of actual knowledge on the subject. You have to challenge therapists whose tactics perpetuate the feeding battle, rather than bringing it to a peaceful end.

But I know. I know these parents are ground down by the stress, loneliness, and sorrow that comes with not being able to nourish your own child—the nightmare that is tube feeding. I know from my own experience that some parents become so desperate that they no longer trust themselves and find themselves willing to follow whatever directions they’re given, perpetuating their own hell, despite the nagging voice inside that tells them it’s all wrong. Or who are tossed back and forth from one expert “opinion” to another, with no one ever offering a real plan for moving towards normalcy and health. Parents are victims of unnecessarily extended tube feeding as well, and the failure to recognize the deep trauma of both parent and child, and how it contributes to disordered feeding, is another gaping hole in the “care” received.

I have by now heard about, and even helped in some small way through this blog to bring about, dozens of successful tube weans. I know some children require tubes for survival. But many others are simply trapped with no visible exit. In particular, I am intimately familiar with three tube weaning success stories: that of my daughter Stella, and those of Zander and Heath, the children of women who have become dear friends. These amazing triumphs were achieved thanks to parental intuition, constant and fearless questioning, and plain old ignoring of bad medical advice, plus exhaustive research and the shaken but intact inner belief that if given a chance, “my child can eat.” These weans required a lot of belief and trust in the child, not the doctors. They required a process of “letting go.” This is hard to do, not only for parents, but for a broken health care system that insists on monitoring and controlling every milliliter pumped through the tube, in order to cover its ass, all while ignoring the impact on quality of life.

Thankfully, there is an alternative, explored in the video below. Upon viewing it, I cried. They weren’t happy tears in response to the wonderful, validating, rare, evidence-based wisdom on tube weaning that the video unveils. I bawled because the speaker, a child psychologist and tube weaning expert from Germany, describes a higher, enlightened quality of care given to children in his country—a standard and mentality that simply does not exist here. Unexpectedly, I was overwhelmed with grief. By and large, Stella did not receive the respectful, mindful, effective and individual care that she deserved. And thousands of children are needlessly suffering right now.

If you’re angry too, looking for a way out of tube feeding, or want to follow your desire to treat your child with more compassion during their feeding journey, please grab a cup of coffee and watch this eye-opening, heartening lecture given by child psychologist Markus Wilken. He has past, direct experience with the Graz method, which he’s incorporated into ongoing weaning and tube management work in hospitals and clinics in Germany. Astoundingly, Markus has successfully weaned a diverse set of over 400 children. Perhaps, within his presentation, you’ll find the encouragement you need to believe in yourself and your child. To live a tube-free life! You can do it. Your child can do it. It’s time to fight.

********************

Here’s the link (some find that removing the “mms” prefix is necessary for successful viewing):

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

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About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Frustration Station, NG tube, occupational therapy, Research and resources, The tube, Tube weaning and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

33 Responses to Taking a stand against tube-feeding crimes and negligence

  1. Phyllis says:

    Droppin’ science! I know relatively little about this issue–well, I shouldn’t say that, because everything I know of it, I’ve learned here, and you’ve been very educational. Your description of tube feeding/weaning, and of the American pediatric approach being based on CYA, rings true to me. I’ll continue this message in an email. Keep on!

  2. Rachael says:

    Hi Amber,
    I’ve been reading your blog since October last year just after we brought our 4 week old son home from the hospital with an ng tube (after heart surgery). The tube was necessary at first of course, but we had no weaning plan, and when oral feeding started to decrease and I had to give up breastfeeding (no demand=no supply and pumping became impossible between trying to juggle 3 hourly tube feeds and a 3 year old sibling) I was desperate for help – very hard to find here in Melbourne, Australia unfortunately. It was then that we came across Stella’s story…
    I want to thank you for sharing your story – it made such a difference to me at the time. To know that someone else had been through what we were going through and had come out the other side was inspirational. Knowing that it could be done made me trust my own instincts and fight harder for William. We removed his tube 2 days before Christmas 2009 – he was almost 4 months old – and he is now a thriving 11 1/2 month old.
    Just wanted to let you know that you helped us in a BIG way and I am so grateful that I found your site when I did.
    Cheers,
    Rachael

    • amberhj says:

      Wow, Rachael. Comments like yours mean THE WORLD to me. I’m so happy for you and William. You deserve so much credit for helping him thrive, tube-free! You did it! Ever think back and feel amazed at all you went through? I know I do. And you had the added challenges and scare of a heart condition! You must be a very strong person.

      So glad you found our blog and thank you so very much for taking the time to leave a comment about your inspiring success.

  3. Rachael says:

    Amber, We started out with the tube as a micro preemie with severe reflux we ended up with a G-tube the best move we could have made. Getting the tube out of his nose made a world of difference. We are now not using the tube. I read your site and the Tube fed kids site. It gave me so much strength I could have never have done it all on my own. We only used the tube for about 10 months. Thank you for the blog. I agree with every thing. I quit our children’s hospital because they were so against any kind of weaning. So thank you and keep up the good work.
    Rachael

    • amberhj says:

      Yay! Another success story! So happy to hear from you. Wow, ten months is a long time to struggle with this kind of stress. I’m truly on cloud nine thinking about how you were able to persevere and demand better care! That’s what I’m talking about! Glad you found me, and thank you so much for sharing your triumph here. Another source of tube-weaning inspiration–and we need to gather as much as we can find! Thanks again.

  4. Darcy says:

    Thanks, Amber. I heartily agree. Even the kids who require a tube for survival deserve better care and better options. I don’t know if my 3 1/2 year old who has Cystic Fibrosis can be weaned completely from the tube yet; she has a very high calorie requirement. But my child is developing normally. She wants more autonomy. She just isn’t motivated to eat without hunger. She’s eating less than she was last year. Even gentle choices and rewards haven’t helped. I am FED UP with the US system. The Graz studies are so compelling. In one study, even very ill kids who couldn’t completely wean greatly increased their oral intake. Self-regulation just makes sense, especially if you understand child development. I am drawn to Markus’ work because he creates a gradual weaning protocol tailored to the specific child. There has got to be a better, more respectful solution for ALL tube-fed kids, regardless of caloric need. Keep up the fight!

  5. olga says:

    re. the horrors of the NG tube, this from a study published by the american academy of pediatrics, investigating whether nebulizing kids (ages 1-5) with lidocaine helped with the pain:
    ” Nasogastric tube insertion is a common procedure in children that is very painful and distressing. ”
    “The study was terminated early because of the distress and treatment delay associated with nebulization.

    CONCLUSIONS. Nasogastric tube insertion results in very high FLACC scores irrespective of lidocaine use.” [FLACC is a pain and distress assesment tool].

    here’s the link: http://pediatrics.aappublications.org/cgi/content/abstract/123/6/1548

    YES, parents are not crazy to think NG tube insertion, which is often done very frequently as the kid pulls it out, is HORRIFIC for the child. the nurses and other medical folks, bless their hearts, are used to screaming kids, for them this is everyday, even if they are compassionate (which most of them are). so yes, fight for your kid. find ways to make the tube-feeding experience *better* and insist on a way OUT that is also respectful and kind and done as soon as medically safe to do so.

    • Darcy says:

      Well said, Olga. We were spared the trauma of an NG tube. We went straight for the Mic-key button, as recommended by the doctor. He advised against the NG tube because of the pain, trauma, throwing up, etc. associated with it. In this case, the doctor gave us good, well-informed advice! Here’s to hoping that others will read Amber’s blog and dodge that bullet!

  6. Gail says:

    When I stumbled across Stella’s blog, I had no idea how many months of tube-feeding stress lay ahead. You, Olga, and Jenny have been a great source of support. I tell people you three were the ghosts of tube-weaning past (Stella’s face was blissfully unadorned when we met), present (Olga was just steeling herself to yank Zander’s tube), and future (Jenny and Heath eagerly awaited Markus’s arrival). All of you provided perspective and lessons that benefited me and Viv.

    I’m glad you’re voicing the anger that’s threatened to consume all of us at one point or another. I’m combing through our experience, trying to think of constructive suggestions in addition to “listen to the flipping Europeans.” For starters, why on earth do they have parents putting ng tubes down?!?! Right now a parent has to choose between (1) the costs and risks of the ER and (2) pinning her screaming child down while causing her pain. I know some parents prefer the convenience, but shouldn’t there at least be an option to bring the kid into a clinic setting for reinsertion? Why should trust issues between parent and child be heaped onto everything else with which the ng tube-feeding family must grapple?

    PS – BREAKING NEWS: VIV’S G-TUBE IS HISTORY!!!

    • amberhj says:

      Gail, WOW! Huge congratulations to you and Viv! I know how long and winding your road was. But you got there! You did it! You were very determined, and that is something I admired about you from the moment we met.

      Holy cow. Great idea to provide a clinic or specialized, easily accessible office in the hospital for help with tube re-insertion. I had never thought of that–it’s brilliant! I’ll include that idea in a future post as I plan to continue this discussion in a more detailed fashion. As you sort through what you went through, let’s stay in touch and discuss. You ask a lot of great questions, ones that many are asking. We can help make the process better with our feedback, suggestions and questions!

      Again, huge happy congrats to you and sweet Viv!!!

  7. Eva says:

    Thank you so much for your blog and honesty. Why do all these doctors insist that the NG tube does not bother my child and why is it a foregone conclusion that my son will end up with a G tube? It’s true, you have to stand up for your child, do your research and get the doctors on board with YOUR plan. I have just started reading all the tube weaning docs out there and I hope to be educating our doctors very shortly. Thanks for your words of encouragement.

  8. Darcy says:

    OKAY, now I’m really appalled. On the hospital website our CF clinic suggests that NG tubes may be an option for CFers, even though research suggests that a CFer with poor nutritional status would need a tube for at least two years in order to bring up their nutritional status. Two years with an NG tube?! What are they thinking?

    Amber, would you like to write a petition? If you do, I’m sure we can get many signatures.

    Here’s a website for free petitions: http://www.petition2congress.com/

    • amberhj says:

      Darcy, I would love to draft a petition. Great idea! I have a couple questions for you to ask your clinic first if you are up for it… Though regardless of what that individual institution says there is a need for this and we can figure out how best to deliver this and to which Gov and medical orgs and media outlets. I will be in touch via email when we get back from vacation next week. I think this is a powerful step and thank you for posting it!

  9. Daria says:

    Amber,
    Thanks for this post. It is EXACTLY how I am feeling right now. We just returned from Seattle where we met with Markus and I am so excited that he agrees that my daughter is ready to eat. But a bit furious that we had to go through all this other stuff kinda on our own.
    We were not allowed to leave the NICU with an NG tube, I distinctly remember the doctors there telling me it was too “dangerous” for parents to deal with. That’s the plus. The negative is that she had a gtube at 1.5 months and since that is more “permanent” there was NO effort whatsoever to try and rid of it.
    I’m so sad that we don’t have the support that a dr like Markus provides from day 1.

  10. Cindy Rodier says:

    Thank you! I completely agree and we are one of those unfortunate families whose healthy but small for age daughter was coerced into getting a G Tube for fear that her failure to gain weight was going to eventually mean it was going to affect her brain growth. Mind you, it was only her weight that was affected. Her height and head circumference always remained on the curve and continues to follow her own curve. After researching the internet and finding your blog, I realized what my gut had always told me, she doesn’t need this tube! Thanks to Heath’s mama’s site too we have weaned our daughter off her G Tube. She has not used it for a month and continues to eat and drink and gain weight on her own! Thank you for your blog!

  11. andrea says:

    The part of your post that strikes me is where you say “different for kids where tube feeding is a life saver, not an option”. If its an “option”, its the option that YOU as the PARENT chose. Doctors do not make the final decision or have the final say. If you chose it, and chose it without a plan to get it out, you can not vilify the medical profession and blame them for it. Feeding tubes are not and should not be generally “optional”. This is what has caused upheaval at IRD as well.

    • amberhj says:

      Andrea, I’ve emailed you about your comment before replying here but I’m going to reiterate. On your site, my comments were edited or strings shut down. It was hard to clarify as a result.

      Weaning (removing the tube and seeing if the child will eat) is an option for some. It’s not an option for others. And, like I said in my email, you made realize I didn’t explain myself clearly and I thank you for that. Who would choose the tube if it were only an “option”? I don’t think anyone would. I certainly would not have chosen it if it were an option. It wasn’t presented as an option to me, and I’m glad she had it. I just think it overstayed its welcome and started causing rather than solving problems. I did have to fight to get support for her wean and I’m glad I did.

      Also, as I emailed to you, I don’t like your vilifying parents who rely on their doctor’s expertise when “deciding” to put in a tube. What parent truly “chooses” it? We are not medical experts (at least at first!)… It is advised or prescribed and we go with it because our child needs calories and help, be it short- or long-term. It’s tough, and not easy for anyone.

  12. Elinda Hagan says:

    As a medical professional, I found this quite touching in one way and it caused me to think in another. I must first say, I am not a peds nurse, the elderly is where I usually care for patients but they too have tubes. The first thing I must say is as a parent, questions should always be asked of the health care professional. Doctors and nurses work in this every day and become so accustomed to this, a question from a family member may be what is needed to change things. After reading this blog, I can see change is needed. Healthcare has been evolving since its beginning and will continue to do so. Through communication, more change will occur so blogs are a good thing. As information is shared, improvement can occur. I enjoyed your blog and reading all of the comments. Education is so important in all things we do!

  13. Deb says:

    Hi there,
    I have just stumbled across your website (after visiting http://www.notube.at) and I would so dearly love to get into email contact with you. The above post is exactly how I am feeling at the moment. I have a lively 11 month old daughter who can eat and can drink, however has a NG Tube (placed without a plan to remove it) and so has never ‘had’ to eat or drink. I am desperate to tube wean her with no support from my drs and no opportunity for conversation about weaning. Just a constant ongoing saga about weight gain. Am almost ready to just go it on my own….
    Would love to chat with you about what you went through. Lovely to read your blog too.

    Deb x

    • amberhj says:

      Hi Deb, I would love to talk with you, too! I will be in touch. I’m sorry you don’t have the weaning support you need, but you can get there! Thanks for stopping by!

  14. Eva says:

    I just had to chime in again (after 4 months!) I am also VERY angry. We changed doctors and hospitals and found a completely different approach. Our new doctor immediately took my son off Prevacid and his vomiting has almost stopped!!! We now have conversations about weaning and appetites not about calories and growth charts. I wish I had done it sooner, but if anyone out there is unhappy about the care (or lack thereof) they’re receiving, get a second opinion and find a doctor who believes that a child has to be hungry in order to want to eat!

    • Ina says:

      Hi Eva,
      could I ask why your doc took him off Prevacid? Our 8-month old son is on a pretty heavy dose right now and I’m not that happy about it. I’d love to get him off of it. He also has a G-tube we’re hoping to get rid off soon. Thanks so much

      • Olga says:

        Ina – if you decide to come off of Prevacid, remember that is has to be a gradual *wean* from the drug. Otherwise, the natural acid production that has been suppressed by the Prevacid restarts with a vengeance, resulting in pain and classic symptoms of reflux. So go slow and steady when the time comes!

      • Eva says:

        Hi Ina, Sorry I didn’t see this message sooner. It’s been over a year now for us since we weaned our son off his NG tube and 1 1/2 years since we gave him prevacid, but I remember that back when we saw the new doctor he had recently seen another child with the same symptoms – i.e. vomiting and pain seemingly still there even on the meds. That’s why he suggested to remove the prevacid and see what happened. What happened was a lot less vomiting and therefore a happier child. I would second Olga’s comment to go slow and keep good records of what happens. Maybe he would be fine with a smaller dose? Again, every child and every situation is different so you have to go with your own gut and what you know – you know your child best. Good luck!

  15. Veronica says:

    My three month old was intubated at birth, extubated at 7 weeks, and has been on an NG tube since then. Without going into details, we have had to fight her doctors since she first began feeds, through the NG tube about two months ago. When we finally went home after eleven weeks and two days in the NICU, we were given no plan for weaning her off the tube, and no follow up plan. Rowan’s surgeon wants to do a fundiplication surgery to control her reflux, along with a g-tube. We refused consent until more conventional methods had been tried (smaller, more frequent feeds), and the smaller feeds worked – her reflux is under control and she’s gaining weight. But the surgeon still wants our consent for the surgeries because (this is a quote) – “q 2 feeds are unnatural and inconvenient for the parents.” Ugh…makes me so angry. Anyway, we’re looking for a speech therapist in our area, and a nutritionist, but I’d like to learn more about the Graz method, particularly I’d like to watch that video of the lecture with Dr. Wilken. But the link doesn’t work! I get an error in Windows Media Player! Any idea what happened to the video or where else I could find it?

    • amberhj says:

      Veronica, let me look into this and get back to you! Three cheers to you for following your gut and not consenting to that surgery!!!

    • Olga says:

      here’s a great piece by a good friend re. the pros/cons of a nissen: http://tubefedkids.ning.com/profiles/blogs/to-nissen-or-not-to-nissen
      and yes, in some hospitals it’s still the “g-tube and nissen combo happy meal package”. but it depends on the hospital/surgeon unless there’s a clear indication. for example, my son was aspirating his reflux, and NO ONE suggested a fundo. we did J tube to avoid the stomach, so there was little chance he’d reflux anything and aspirate (the real danger). the patronizing crap drives me mad: we had a med that needed to be administered every 6 hours or else he’d start choking on his own saliva. docs wrote rx for twice a day, saying q6 was… too inconvenient for the parents! i blew my top and told them what was really inconvenient was having a child whose o2 level was plummeting and who i had to suction (with great distress) because his med had run through its active time. good grief, i think i’m still bitter. 😉
      hang in there! another great resource for checking out weaning via caloric reduction is http://www.thecrunchyandthesmooth.com (and both amber and jenny are awesome women and great friends) – scroll down to the links on the right-hand side.

    • amberhj says:

      Veronica, try other media players/other browsers and be sure to try cutting the mms off if you haven’t… any luck? Let me know.

  16. Helen Schubert says:

    We had a mix of professional neglect in our family. My daughter was born with DS, and a number of holes in her heart, two of which were large enough to require eventual surgery. We did fine at home for a couple of weeks after she was born, and then one night she didn’t wake up to feed. The next morning it was like she couldn’t wake up to feed. We were admitted to the first hospital, and they placed an NG tube after about a day of not being able to get her to eat. They did some tests, and her pediatric cardiologist came in on day three to tell me he was sending us home–without the tube. “How is she going to eat!” I asked. He just walked out of the room, but the next thing I knew we were being transferred to another hospital across state. There she was reevaluated by peds cardiologists, who determined that we were seeing the beginnings of heart failure. An OT came in to help me with feeding, and we determined that since my daughter couldn’t latch on, I would continue pumping and we would add formula to up the calories. We were to use the NG tube for the time being, since she was burning more calories trying to eat than she was getting in, and the OT suggested I try different nipple types on her bottles until I found a shape and speed that my daughter was comfortable with. My Punkin had her NG tube in for three months. We could only get it down thru the left side of her nose, so it couldn’t be switched. She started yanking it out, so we had to put mitts on her hands. By the time we reached four months, and the goal weight for her heart surgery, she had developed a yeast infection on her cheek from the tapes that held down the tube. After her heart surgery, they switched the NG tube to the right side of her face and sent her home. We had no ‘plan’ for weaning, but were told we should get her on bottles as soon as she was ready. This was our first child, and I had never cared for an infant before in my life, what did I know about ready! Thankfully, once she had recovered from surgery we started regular OT therapy thru her intervention services. My daughter’s OT was my lifesaver! She helped me figure out when my Punkin was ready to bottle feed, and about a month after her surgery we were done with that evil tube!

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