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The Big G

The G word (gastric feeding tube) has been broached with Jon and me by our ped. GI.

We’d just had a session with our nutritionist who is worried but thinks that we haven’t exhausted every route of getting more calories into her. We may not have but I’ll tell you what, I’m exhausted. Our house looks like a damn feeding clinic with all the cut out cups, array of nipples, full body bibs…I just want her to grow. Our ped. GI Dr. Edelstein (who is awesome) is afraid that if she continues to grow this slowly it may affect her brain development. We have an appointment with her on Tuesday to decide a course of action.

Sadie is getting even more difficult to feed. You’d think her bottles contained lighter fluid rather than yummy yummy formula – sometimes with yogurt added for an extra calorie kick! We’ve tried feeding her from a cup (regular, sippy, straw etc.) we’ve tried every food there is and she still takes a certain amount and then is done. And when Sadie’s done, there’s no arguing about it. The look on her face tells you “What part of I don’t want anymore do you not get? Do I need to have a screaming fit to better explain it to you?”

Her nutritionist thinks she is still experiencing reflux (the silent kind) and feels she may need a higher dose of the Prevacid she’s been on (not covered by insurance -thanks Blue Cross – love ya, mean it).

So, basically our understanding is that because Sadie was an IUGR baby and didn’t develop as well in utero, she will probably have these issues for awhile maybe until she adolecent. Doesn’t that sound fabulous? We add butter to everything. If I thought it would help, I’d butter a gumball at this point. We put Benecal in the formula she will take. We wake her up at night to feed her sometimes twice.

Maybe, just maybe, as harsh as it sounds and as much as I’m freaking out, a G-tube wont’ be the worst thing that’s ever happened.

Updated to add:

Thank you all so far for your comments on this matter. I just want to do what’s best for her and not make eating any worse an experience for her than it already is. The most important thing is that this is about her and not about me. Although I do have the special gift of being able to make almost any situation about me, when it comes to our children, it’s just not. Enough sap, let’s drink!!

Posted by Stefanie Wilder Taylor on November 11, 2008 10:39 pmUncategorized47 comments  

47 Comments

  1. Amanda said,

    If the doctor says it’s best for her and it would mean less stress for you…I understand why you don’t think it’s the worst thing ever. It really sucks that you have to make this decision at all. I know it does. But at least this way you would know she was getting enough to eat and you wouldn’t have to worry about developmental problems.

    | November 13, 2008 @ 6:27 pm

  2. Becks said,

    I don’t know very much about IUGR babies, but could it be some kind of food allergy or intolerance?

    My sister and I both have celiac disease and weren’t diagnosed until we were adults. My sister in particular was so small and so sick as a baby, and nobody could figure out what was wrong with her – she started to get such bad ear infections that she went deaf at the age of three. They took her off dairy and her hearing came back, but neither of us found out about the celiac disease until we were 23 and 25 respectively.

    | November 13, 2008 @ 6:28 pm

  3. Jenni said,

    Hi, Stefanie – I love your blog but I think this may be my first comment.

    Anyways, one of my BFF’s son’s had a feeding tube for several years. Of course it is not idea, but is isn’t the worst thing in the world. Her son was skeletal and exhausted all the time before it was put in, and now he’s an elementary schooler that takes gymnastics and karate and is excelling at school. It changed his life.

    The bottom line is, you want her to be healthy. If this is the way, I say go for it. You have exhausted so many options. This may be the solution you are looking for. I hope it is.

    Good luck.

    | November 13, 2008 @ 6:29 pm

  4. Shannon said,

    I can’t imagine how tiring this all must be for you. I have no knowledge or advice on the subject. Just sending good thoughts your way and hoping that whatever the outcome, that it helps!

    | November 13, 2008 @ 6:29 pm

  5. Aunt Becky said,

    I think a G-tube will actually give you some relief as far as trying to get her to eat. I imagine that your stress level will be decreasing each day that she has it, because then you won’t have to keep trying different things. It will just be there and working for you.

    And the vodka will ALSO be there, working for you.

    | November 13, 2008 @ 6:42 pm

  6. KLS said,

    I’m sorry you’re having such a hard time getting Sadie to gain weight. I don’t have any advice, but have you read Psychmamma’s blog? Her toddler has a G tube, and she writes about special needs every week.
    http://psychmamma.wordpress.com

    | November 13, 2008 @ 6:50 pm

  7. Anonymous said,

    Another blogger just went through something similar so her experience might help : http://khebert.blogspot.com/

    Her daughter just got a g-tube inserted last week and, from what I read on Kyla’s blog, they also had a hard time making such a big decision. Wishing all the best for your family, Karen

    | November 13, 2008 @ 7:05 pm

  8. seran said,

    I say go for it. Imagine how much your stress level will go down after the decision is made and after it’s in. I’m wishing you the best.

    | November 13, 2008 @ 7:15 pm

  9. Mrs. Incredible said,

    A g-tube may take the pressure off of ALL of you.. Sadie too. Ultimately, your goal is a healthy, happy baby, and sister, you have worked your BUNS off to fatten that baby up in all the traditional ways. You are a GOOD MAMA. If a g-tube will get her to the end goal, bring it on!

    Corey
    http://www.watchingthewaters.wordpress.com

    | November 13, 2008 @ 7:17 pm

  10. help4newmoms said,

    Hang in there, Steph. Any decision you make will be the right one, you’re a smart girl.

    | November 13, 2008 @ 7:39 pm

  11. Rockzee said,

    I’m a firm believer in the Whatever Works method of parenting. And I think Jenni’s comment proves that this does.

    | November 13, 2008 @ 7:39 pm

  12. Stefanie said,

    Thank you for your comments. And thank you for being patient with me while I’m not reading your blogs enough. Once this book is in I will be in full blog reading mode. For now, everyday is a struggle and I’m sad about Sadie.

    | November 13, 2008 @ 7:41 pm

  13. Backpacking Dad said,

    A G-tube isn’t a punishment for you or Sadie for doing anything wrong.

    | November 13, 2008 @ 7:49 pm

  14. Rachael said,

    I’m sorry to hear that Sadie’s still not eating. I think that you should go with the doctor though, like Amanda and Aunt Becky said – it might give you some relief to be able to relax and just enjoy your daughter without worrying about her intake so much. Whatever you decide, she is lucky to have a Momma who cares so much. Good luck!

    | November 13, 2008 @ 7:49 pm

  15. Immoral Matriarch said,

    Well first off, I must say that I’m sorry you’re having to deal with any of this – of course.

    I would think that the G-Tube would be a good thing for you both. I know it’s ridiculously stressful.

    Oh, and I second becks – I’m sure they have already taken the route of allergy testing, but if they haven’t, do check for that. My youngest daughter didn’t gain any weight from the time she was 9 months until 18 months and it ended up being a rare form of a milk allergy.

    Good luck and whatever choice you make will be the right one! :)

    | November 13, 2008 @ 8:09 pm

  16. goodfather said,

    Wow, that is so tough. I can’t imagine having to make such a tough decision, my heart goes out to you, her, and your whole family. I guess I would do what you’re doing: try as hard as humanly possible to figure out what’s best for your baby, and do that. G tubes are great at getting nutrition in, assuredly.

    | November 13, 2008 @ 8:20 pm

  17. MereCat said,

    Stef, what a hard year for you guys. Bless every one of you. I don’t know all that goes with the tube thing, but if it helps, it may be just what she needs to get to feeling better sooner. And maybe eating will become something more to look forward to than dread if she’s gets the nourishment she needs through the tube. Feeding toddlers is a pain in the ass anyway as you well know.

    And one more thing, if you haven’t already, try giving them cream cheese. Since they were a year old, my twins have been eating that Pepperidge Farm Very Thin Bread with flavored cream cheese. They love it.

    Good luck with everything. I’ve been cheering you on the whole way, and hoping and praying things get better for you soon.

    | November 13, 2008 @ 8:24 pm

  18. Kyla said,

    Our family just went through this. My daughter had her g-button placed last Tuesday and already, ALREADY, we are experiencing relief beyond our wildest dreams. It was the right decision and I am completely amazed by it. You can stop by my blog and read all my angst-ridden decision making posts and the happy ones post-op. If you want to email me and bounce some thoughts around, my email is the_tars@att.net. Please, don’t hesitate to contact me. I’d be so happy to help.

    | November 13, 2008 @ 8:28 pm

  19. Deezee said,

    All I can say is that I’m sorry you even have to travel this road. What a tough challenge…

    | November 13, 2008 @ 9:12 pm

  20. Denise Thomas said,

    Hi Stef, I have no answers, I just wanted to let you know that I am hoping the best for all of you. I know nothing about any of this, but it does seem like, while not ideal, a tube may get results. Thinking of you, my friend.

    | November 13, 2008 @ 9:39 pm

  21. Michelleybelle said,

    This is my first time commenting here, but I wanted to share my son’s story. We just took him home from the NICU at the end of August, after 149 days there. About a week before discharge, he was given a g-tube because he was still not able to feed orally without aspirating. We were understandably nervous, and I have to say those first few days home were terrifying. Every day when I woke up I was sure that the tube had come loose! But after a couple of weeks, my husband and I were old pros at it. When I finally returned to work, my mother and aunt took over caring for him, and they also learned in no time. After two months of g-tube feeding, our 25 week preemie had gained a healthy 3.5 pounds and grown an inch and a half in length. There is no doubt about it, he THRIVED with the g-tube. I know every story is different, and you have to make the best choice for your own baby, but I just wanted to let you know about our own positive experience.

    | November 13, 2008 @ 11:07 pm

  22. MC said,

    I am a NICU nurse, and we send kids for g-tubes every so often, and they make a huge difference for them. The nice thing about them, as well, is that if Sadie starts eating more on her own, you can use the g-tube less. You can still work with her eating, and eventually she might not need the g-tube at all. While I would never give you medical advice in a blog comment, reflux is some nasty business, and it seems to be even more so in precious little preemies and IUGR kids. Sadie would get some relief from difficult eating, and you would get some relief from the worrying you have to do about her!

    | November 13, 2008 @ 11:48 pm

  23. Anita Doberman said,

    Sending you some positive thoughts and support as you make this decision
    …:)

    | November 14, 2008 @ 1:08 am

  24. Lisa said,

    I’m sure the g-tube is a scary idea but wouldn’t it be great to see Sadie really take off and grow?

    Best of luck to you and Sadie.

    | November 14, 2008 @ 4:16 am

  25. anymommy said,

    It’s about you too, it’s your difficult decision to make. It must be so scary, I’m sorry you’re facing this, I know you just want to see her healthy and growing like crazy.

    If you have any time (aha), I second the recommendation to read psychmamma’s posts on this subject. Her little girl has had a g-tube for all of her 2 1/2 years and she writes really eloquently about it.

    Anyway, blah, blah, I don’t know anything. Just wanted to add my support and say you will absolutely make the right decision for your beautiful baby.

    | November 14, 2008 @ 6:12 am

  26. CharmingDriver said,

    In my son’s very brief life we had to make some difficult decisions and I am not, at all, trying to minimize the seriousness of your concerns or diminish your worries. But if Sadie had diabetes you wouldn’t hesitate to give her insulin and I think this is much the same: It’s treatment, not punishment, not an admission of failure or somehow conceding defeat.

    Hugs. Best wishes to you and your family.

    | November 14, 2008 @ 7:55 am

  27. Anna Marie said,

    Steph – you won’t believe the relief you will feel once you are able to feed your child without the struggle. My son has a g-tube and while I still have family members who are frantic for him to start eating (his issues are far different from Sadie’s) I am happy just knowing he gets the nutrition he needs.

    | November 14, 2008 @ 2:24 pm

  28. Kyddryn said,

    I DO hope that it doesn’t last until teen years – teens are already a pain – and that somehow the gastric fairies will come along and make it right before you are driven to distraction.

    Shade and Sweetwater,
    K

    | November 14, 2008 @ 3:03 pm

  29. Carolyn...Online said,

    Yeah, I want to do a hit and run on Blue Cross. You with me?

    | November 14, 2008 @ 4:01 pm

  30. Cat said,

    Hang in there!

    | November 14, 2008 @ 5:46 pm

  31. sarah said,

    Do it!! One of my friends back home had a little girl whose issues were sensory integration based and she could NOT put things in her mouth, which meant that she could not eat anything.

    She was on a feeding tube for 3-4 months, which gave her the energy and strength to do the OT and speech therapy she needed to overcome the sensory stuff and now she eats like it’s her job.

    Last time I checked, she outweighed my Ethan by 4-5 pounds.

    If it’s good for Sadie and will give you a break from the stress, it’s a good thing!

    | November 14, 2008 @ 7:36 pm

  32. Sally HP said,

    No advice to offer, just a word of support. You’re amazing, and your sense of humor will go miles to get you through these rough decisions.

    | November 15, 2008 @ 3:09 am

  33. Threeundertwo said,

    Oh dear. I really think you should go for it – it’s not as bad as you may think. I worked with lots of patients with feeding tubes and it’s a very effecient way to get a lot of nutrition in.

    Best wishes and hugs.

    | November 15, 2008 @ 7:38 pm

  34. Gwendolyn Peregrine said,

    I know we’ve talked before. My baby has eating and growth issues similar to Sadie’s. Anyway, the g-tube was recommended to us too but we got a second opinion. The right decision for us. I suspected allergies and we finally got her formula changed to Elecare and started adding foods back only one at a time. She now gets rice, carrots, bananas, turkey, sweet potatoes, and canola oil in addition to her formula. It’s HARD, but she’s gained 2 pounds in 2 months on this diet … more than she EVER has before. Now I’m convinced she has serious non-ige allergies. I hope you find an answer for Sadie soon.

    | November 15, 2008 @ 10:13 pm

  35. Jenn said,

    I have twin girls and they are 2-1/2. One of them, Mackenzie has had the same issues with weight gain. She is still not 20lbs. My 1 year old outweighs her! Docs are calling it “failure to thrive”. We have done Pediasure and been threatened with the feeding tube a gazillion times. They did all the bloodwork and nothing else appears wrong. She just does not gain weight. We are doing Carnation Instant breakfast now. She seems to like it and she has experienced the most weight gain on it of all the things so far. We have opted to wait 30 days and see where she is then. It is all tricky….and the answers are different for every family. Good luck to you! Just finished your “Naptime” book…love, love, loved it! Flippin’ hilarious. One day, our girls will be teenagers trying to figure out how to lose weight…this will all seem very ironic then!

    | November 16, 2008 @ 4:59 am

  36. Jenn said,

    wanted to add….perhaps a gastro doctor should also check the sphincter (sp?). My daughter was on Prevacid and still had “silent reflux”. She required Reglan in addition to the Prevacid tell her food to digest. Check your insurance for any foundations. Our did not cover the meds or the amino-acid based formula (Elecare) but we got a grant from their “foundation” that helped us thru. My child had milk protein and soy protein allergies…even breastmilk caused the kid to not want to eat. She would eat, feel bad, and refuse any further. The allergies have resolved…good luck to you! I trust that you will make the decision that is best for your family.

    | November 16, 2008 @ 5:07 am

  37. gmcountrymama said,

    Thinking about you and your little ones. Happy Birthday to them all.
    I don’t think a feeding tube is too horrible. Sadie can get what she needs, food and a rested mom and dad. By your comments it seems like there are lots of other moms dealing with similar situations. Of course you probably don’t have any time to read them.

    | November 16, 2008 @ 7:21 pm

  38. Other Mother said,

    My littlest guy is a g tube feeder, and it has been wonderful. We’re working at getting him off, but might never be able to give it up entirely. His medical problems are different, so there’s no comparison — I just want to say at least you will know she’s getting what she needs, and your time can be spent spending time with her in more enjoyable ways. Tube feeding is still just that – FOOD – not medicine, not a procedure. Just food. Don’t worry about it.

    | November 16, 2008 @ 11:13 pm

  39. Noelle said,

    Benecal has a lot of fat in it which can slow gastric (stomach) emptying, leading to more reflux. May be worth putting that on hold for a short while. Something to bring up with the GI doc.

    | November 17, 2008 @ 1:46 am

  40. Jenny said,

    I will pray for you and your family. “This too shall pass.” You are a great mom, keep plodding through. : )

    | November 17, 2008 @ 3:03 am

  41. Cheryl Lage said,

    Hey Stef…
    Such great comments from people with first-hand experience.

    Wishing you ALL relief, reassurance and real weight gain (well, maybe just Sadie on the weight gain, but I’m betting you’ve worn yourself too thin) in the coming days.

    Thinking of and rooting for you all!

    | November 17, 2008 @ 5:09 pm

  42. Kelsey said,

    It is so unbelievably frustrating when something is preventing you from feeding your child – whatever form that frustration takes. I’m wishing you the strength you need to make the right decision for your family – I so hope this is resolved quickly and positively for you and for Sadie. It is a shame that there are insurance issues on top of everything else. I’ll be thinking of you and sending positive vibes toward the west coast.

    | November 18, 2008 @ 3:02 am

  43. Piccinigirl said,

    I think you should just trust that “mommy instinct” and do what’s best.
    We’ll all be here, with glasses of wine ready when you’re done. :)

    | November 18, 2008 @ 4:45 pm

  44. courtney said,

    That’s pretty scary, but yeah, go with the doctors. Good luck to you and to Sadie! Eat, Sadie, eat!

    | November 19, 2008 @ 7:53 pm

  45. Kim/2 Kids said,

    My daughter was an IUGR baby and weighed 5 lbs at 38 weeks. She weighed 16 lbs at a year. We never had to go the G tube route but we did have many, many struggles getting her to eat. I am sorry you have to deal with this but maybe it will be a relief. I’ll just add that my daughter just turned 12yo, weighs 101 lbs and is developing nomrally. I never thought she would be so “normal”. Thinking of you.

    | November 19, 2008 @ 10:14 pm

  46. Bec said,

    I know I’m late to the party (always am) but I wanted to say that I could have written that post. Erin is also an IUGR baby who doesn’t seem to be “growing out of it” she often doesn’t grow at all.

    We’re lucky that she keeps getting taller and her development is good, these are two things that are currently keeping the G-tube away. For how much longer? I don’t know.

    We’ve been through intensive feeding programs and, while things have improved she still doesn’t eat enough. To top it all off, she’s just decided to give up bottles altogether.

    I don’t know if I’m making the right choice by not allowing the g-tube. Sometimes I think it would be kinder, but the thing that keeps me from doing it is knowing how hard it is to get kids off tube feeding. That said, there may come a time when I wont have a choice.

    I just don’t know.

    | December 13, 2008 @ 3:42 am

  47. alperen said,

    thnks

    | December 22, 2008 @ 7:52 am

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