to fortify... or not to fortify... what would you do? - Mothering Forums

View Poll Results: What would you feed a tube fed child after a year?
Breast milk! 100% It's still enough for a 1 year old to grow on. 20 60.61%
Breast milk fortified with formula, after all, breast milk isn't enough after a year. 7 21.21%
Breast milk/blender diet, who cares if she get's a bad taste for something, she's TUBE FED! 6 18.18%
Voters: 33. You may not vote on this poll

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#1 of 23 Old 03-27-2008, 02:10 AM - Thread Starter
 
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My dd2 has a bunch of health issues and is 100% tube fed, I exclusively pump for her, and she's getting all breast milk. She's nearing a year old now and I our GI doctor is hounded me about fortifying the milk with formula, because he says my milk is not enough for her. I'm having a really hard time accepting this because...
A: I've been working my butt off to give her breast milk this whole time and it totally breaks my heart to give her that stuff.
B: Everyone knows breast milk rocks and formula is inferior, so why would I need to add that to make my milk better?
C: She vomits ALL THE TIME and I really really hate the smell of vomited formula, I'm often covered in vomit and this is a big issue for me.

The other option I've heard of is a blenderized diet, but with her vomiting so much, I'm afraid she'll never eat by mouth because she'll remember all the nasty versions of food coming up. (You know how if you get sick off taco bell once and suddenly you can never eat there again..:Puke) It's really important to me that she will eventually eat with her mouth!

Or I could just keep her on 100% breast milk as long as I can and just say to the GI doctor (or lie and say it's formula )

I just can't decide what to do. Is breast milk really not enough anymore? After all this time and hard work am I really going to have to go buy her formula?!! so... what do you think?????
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#2 of 23 Old 03-27-2008, 10:17 PM
 
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Hmmm.... in what way does the GI suggest that formula "fortifies" breastmilk?
I would think that a doc would be encouraging you to give her as much BM for as long as you could make - if weight gain is an issue, do you make enough to skim off the cream from some pumpings to raise the caloric content?

Formula has the same number of calories (roughly) and breastmilk is considerably easier to digest (in addition to the many things that formula lacks). If the issue is iron, wouldn't it be infinitely easier to just give her an iron supplement?

Now, as for a blender diet, perhaps that could be an alternative way to get more calories into her or provide her with the iron that she may need, but I would think you'd need to work pretty carefully with a nutritionist to get that right.

So, my short answer: BM is far superior to formula - if BM isn't enough, then formula is behind by a mile.

Michelle, mama to Isabelle (03/04) and Tom (02/07)
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#3 of 23 Old 03-27-2008, 11:26 PM
 
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I voted I think bm is still enough for a one year old- but to be honest, I might consider doing a little bit of a blender diet in consult with a nutriontist- adding a little meat for instance, as I've read it is really good for physical development (there was an article in the first foods section at kellymom.com) or other high nutrition foods. But no way would I bother with formula- as long as bm makes sense to use.

Laura, Mama to Mya 7/02, Ian 6/07 and Anna 8/09
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#4 of 23 Old 03-28-2008, 12:00 AM
 
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First let me start by saying that it is offensive to all the other SNs mamas out there to say that formula is A) nasty or B) inferior. IN a perfect world, sure, but my SN kid would DIE if I tube fed her breastmilk. So please remember that next time you assert your opinions.

Second, how many ounces is she getting a day? How much does she weigh? Whats her growth like? Why is she vomitting? I know for DD, she needs between 100-110 cals/kg and at nearly 14 months, she is now finally *after tube* 9.2ish kg so she needs around 1000 calories. Of her medical food that means 33-34 ounces. IN breastmilk terms that would mean 45.5 ounces. If she's getting an equal number of calories to what she would need if she was getting formula (calculated using 22/oz. of BM as average) then yes I would say its fine to continue just using BM. If your supply can't keep up or your DD is like mine and has a limited tolerance for fluids, then maybe fortifying has a purpose. Or maybe she won't take to it anyway. I know it took a full month to get DD from 12 cals per ounce on Elecare to 24 cals per ounce and then a bit longer to get to 30/oz. whereas she tolerated 22 cal BM no problem (well, tolerated in that she held it down, it ws just slowly causing longterm damage). And vomitting is not normal or healthy but I assume you are trying to figure that one out and know as much. AS for blenderized food, well, we could eat by mouth....we just can't due to severe food allergies. If I had a choice, I would definitely go with a blenderized diet over a formula, but thats just a personal thought.
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#5 of 23 Old 03-28-2008, 12:03 AM
 
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Oh, and for the PPs...Formula for a tube fed toddler is 30 cals per ounce as a standard making it 8 cals/ounce higher than breastmilk and 10 cals/oz higher than infant formula, hence the issues at 1 year. BM delivered by mouth and BM delivered by a tube are very dfferent. DD drank 64 oz. a day of BM, but struggles to get anything in by tube because its soo much more direct than BFing directly.
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#6 of 23 Old 03-28-2008, 12:06 AM
 
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It really depends upon her health issues what the right choice is. You might try posting in the Special Needs forum.

For a healthy 1 year old, breastmilk (with tastes of other foods or not) is plenty. But for a child with medical issues a lot of things change.
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#7 of 23 Old 03-28-2008, 01:39 AM
 
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I voted bm. Formula, no way jose.

Danielle*

Danielle, wife to John, mama to Valley9.24.07
expecting our miracle babies around 5.12.10- praying that baby B grows healthy and strong!
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#8 of 23 Old 03-28-2008, 02:04 AM - Thread Starter
 
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Thank you everyone who responded.

I'm not exactly sure how the formula would be fortifying it... he said that breast milk is just no longer enough. I think he wants extra calories also, because he always makes a big deal about her being on the small side. I say, "let's find out why she's vomiting and fix it so she'll keep her food down and gain weight." He says "lets add formula and up the calories and she'll gain weight." I say "she'll vomit larger volumes if we add formula because then it will take longer to digest." He says, "but at least what she keeps down will be more calorie dense..." I say "but if we don't add formula she'll vomit less volume and then have more calories..." We go on and on like this every time. But aside from the calorie issue, he said the breast milk is just not nutritionally enough for her anymore. I guess he may be referring to the iron? but I'd say just give her a vitamin.

Why is she vomiting? I don't know. We have run so many tests and no one knows! It's really awful. On good days, she'll vomit 5 or so times. On bad days, it's easily 15-20 vomiting or retching spells, (even on an empty stomach) Anyone want to throw some ideas at me what it could be or what I can try, I'm open!

Kierdan'sMom: I'm sorry I offended you. I understand sometimes there are medical reasons why breast milk is not an option for a baby. When breastmilk would do more harm than good, of course formula is not inferior in that case, but that is NOT the case here. We have trial ran elacare and neocate formulas and she actually vomits slightly more with them. (I'm thinking just because it takes longer to digest.) When breastmilk and formula are both an option, yes I think that formula is inferior and in comparison, pretty nasty. I'm sure if you had the option you would choose breast milk also. I'm so very sorry you lost your breastfeeding relationship with your dd, and I'm sure you are very hurt by it. Even though I get to give my dd2 breast milk through her tube, I still mourn the direct breastfeeding relationship I wish I could have had with her. I in no way intended to upset anyone with those remarks. I intentionally didn't post in the special needs forum because I didn't want to hurt any ff tube kids' moms feelings. I'm sorry you took it the wrong way.
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#9 of 23 Old 03-28-2008, 02:11 AM - Thread Starter
 
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Oh I wanted to add that we are now seriously considering a GJ tube where the food would totally bypass her stomach to hopefully stop all vomiting. The downfall to this is she would always be hooked up to the feeding tube and pump continuously because you can't have large volumes at once then, and with her starting to crawl and soon walk, it's such a PITA!!! But it looks like that's what we're going to end up doing, so if/when that happens, I think I've decided to do the breastmilk/blender diet. Thanks for all your input!
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#10 of 23 Old 03-28-2008, 02:54 AM
 
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Would you have enough BM (to be able to get donated BM) to use only the higher fat portion and supplement with iron 9if that's the problem)?

Michelle, mama to Isabelle (03/04) and Tom (02/07)
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#11 of 23 Old 03-28-2008, 08:01 AM - Thread Starter
 
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Originally Posted by miche28 View Post
Would you have enough BM (to be able to get donated BM) to use only the higher fat portion and supplement with iron 9if that's the problem)?
I don't think so. I'm just barely keeping up right now! And I'm really not too concerned about her weight myself. She's in the 10th percentile, which is actually pretty good for her I think. She also has a very complex heart condition and from what I hear, the kids tend to all be very small anyway. I'm sure if all the heart kids had their own growth chart she'd be soaring above them all. The cardiologist has always been thrilled with her weight. Silly GI doctor...
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#12 of 23 Old 03-28-2008, 12:40 PM
 
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I still think it hurts the cause of breastfeeding to call formula "nasty" even on MDC. Its not necessary. Not as great, sure but it feeds a kid - Maybe less than is = to inferior, but even when it comes down to semantics, the connotation of "inferior" is much less pleasant that "not as good". And starving your kid to death for ideals? Now thats nasty. Breastfeeding forum or not, we tube feeding formula moms might be around to be offended because most of us have some experience in this area...Heck, I've got 3 years under my belt (39 months since she's still dry nursing once in a while, but who's counting?!) - After all, this is MDC.

Once again Now I'll say - Elecare and Neocate come up more often probably because they are thinner than BM. Not what I thought to be the case, but DD pukes up Elecare far more often for just that reason. Any slight little thing that causes her to slightly gag, and the formula comes back up. As for growth charts, tell your GI to kiss off. DD was far below 5% with no reason for it and a steady decline in growth before they considered formula superior to BM, and that was with known food allergy issues from the get-go so I'd ignore them for now, but know that it may become necessary to add some source of calories. Have you tried tubing solids to help with the vomiting? As for GJ and 24 hrs on pump, we have to do near continuous feeds here 9On g, but maybe looking at J if puke doesn't stop), and DD was small and walking before she got her tube placed, so we got the Infinity and we're working on getting her super-mini bag, and she can carry the thing like no tomorrow. Have to look out as it may require a little PT to counter the issues that carrying the weight at that age raises, but it gets them fed. I know what you mean about wearing puke- i've got to go assemble a car seat that was covered in puke 2 times yesterday (and thats just what the car seat got...Not to mention puking inside!)... Our spare CS had been covered the day before. I get so tired of wearing vomit, and frankly, BM or formula - The smell makes me want to puke as well. Good luck! Doesn't the body change the composition of breastmilk the longer you "nurse"?? Even with pumping I think your body would notice its been a long time and we need to make a fattier, more calorically dense BM. I know by the end of pumping when we "weaned" I could tell how much fattier and more dense my milk was with DD than with DS, probably because she required so much extra nutrition just to maintain.

And I have a tough skin, so while it may be offensive, it doesn't offend me per se. We made a year (and counting) and did what was best, so I'm cool. I just hate to see lactivism hurt by semantics...
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#13 of 23 Old 03-28-2008, 01:32 PM
 
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Has your dd been allergy tested or had an upper endoscopy? I would say sure, keep her on just bm if she's still growing well and can get enough calories that way. If she/you can't do that, then she needs formula. They fortify bm by adding scoops of formula to it to make it higher calories per oz. Evan was 18 mos old (when he started sleeping at night) before he needed to move to 30cal/oz, Ilana was 15 mos old though so every child is different about when they need to make that switch, but for my kids it was roughly about 21#. You know that puking all the time like that is not normal, your GI is just trying to help IMO and unfortunately they deal w/ ff babies more often than not. When we were bfing Evan and using some Nutramigen, our first GI didn't even reccomend trying formula, even though in the end bm was a problem for him. It took another GI to reccomend it and Evan ended up on it till he was 2, as will Ilana. So no GI is perfect and they can only deal w/ what they know, but it's good you have an open enough relationship to talk about it, but I hope you can be open enough to think about trying it just to see what happens. It doesn't make you a failure to use some formula, it just means you have a unique situation and this is how you have to deal w/ it. Maybe read up on Eosinophilic disorders and see if that fits your dd. http://www.apfed.org/

ETA: My ds added that angry face at the top and I can't get it to go away, sorry!

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AJ (5/03), Evan (12/04), Ilana (11/06), Olivia (2/09), and Unity (8/2012)

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#14 of 23 Old 03-28-2008, 01:51 PM
 
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Another tube feeding mom here! I think she likely needs more calories at this age/volume is what your GI Dr. is thinking. If she can handle some blenderized foods and you are willing to continue to pump and keep your sanity, that's how I would go. I also wanted to chime in on the J-tube. My son has a j-tube for much the same reasons. It was insane the way he would wretch. He has gastroperesis. Anyway, he also wears the infinity pump with the super mini backpack. WHile you can't bolus on a j-tube sometimes you can work up to a decent volume. We have him at 100cc's/hr. So, your dd may be able to get most her feed in overnight and not loose it. WOuldn't that be great? Is she allowed to eat at all by mouth? Just wondering. THe blenderized foods can't go in the J-tube though so you would havve to be sure to ask them to place one with both a g and a j PORT. SOmetimes they do a GJ tube with only the J-port. I hated them. I wanted to have access to his stomach. He now has 2 permanent tubes, one G and on J. He'll be 4 next month. I only gave him breastmilk for 6months and that whole time we were fortifying with elecare. We then had to switch him to elecare. I couldn't keep up with the pumping and all his other needs, dealing with my other 2 kids and keep my sanity, so I give you much props. I totally understand why it is so important for you. Its so much hard work to undermine. ((HUGS)) Great job. REALLY don't feel like a failure for adding something other than breastmilk into her diet after this point though. You did awesome. Waay better than most. I wish I could've stuck it out. I am now breastfeeding his little sister but I can't pump enough to even think about giving him breastmilk now but I'd love to.
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#15 of 23 Old 03-28-2008, 04:19 PM
 
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Sorry, I have to jump in and clarify that while the term "nasty" is not one I would use, I disagree that "not as good" is analogous to "inferior". Infant formula is inferior to breastmilk, but a better option than not feeding a child.

It does an enormous disservice to mothers and babies when we are not accurate about the fact that formula feeding is inferior and carries significant risks to most babies. Now, I can see in your case that there are exceptional medical needs that precludes the use of breastmilk - these are considerably more exceptional than many doctors would have you believe.

For example, in this case, there are options other than higher calorie formula - I'm not saying they are the right choice, but clearly this doc doesn't have maintaing breastmilk intake as his goal. Mum is entitled to get a full accounting of why a change is being suggested, what the options are and the risks/benefits of each. But if formula is good enough, why bother with the considerale hassle of pumping, skimming, donor milk, etc....

I'm sorry if this feels as though it's intended as an attack on your choices, but it's not - it's an accurate statement in these circumstances.

Michelle, mama to Isabelle (03/04) and Tom (02/07)
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#16 of 23 Old 03-28-2008, 04:59 PM
 
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A friend's little girl gets BM through a tube, but because she vomits easily they've added some sort of thickener to it. It's just slightly thicker, but it helps her keep it down better. It may add calories too, I'm not sure. But it's still BM.

Heather married to my highschool sweetheart 6/7/02 :cop: Mother to Dani age 14 and Timmy age 10 Nadia 1/29 :
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#17 of 23 Old 03-28-2008, 05:33 PM
 
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Hi there - I just wanted to jump in because I do/did fortify. My DS came home a little past a month old after his first heart surgery - he had started feeding during his last week at the hospital. I was driving myself crazy with a breast, bottle then tube every three hours trying to get him to gain weight and he hated the tube so much. AFter a couple weeks I just let him keep the tube out and he finally got to a stable weight gain at the breast and with some bottle (fortified breastmilk) but then he decided he liked the bottle better, and I eventually just let him have it since it helped him finally manage to put weight on (since I could fortify the breastmilk) The way we were doing it was just adding 1 tsp of normal formula to every 3.5 oz of milk which the nutritionist said would boost the calories to 24/oz. It worked well and got him to grow until recently (after his 2nd surgery now around 6 months; he has to have formula for 6 weeks because he can't absorb fat).

I know its a little bit different with the toddlers because there are more options of what can be added. And for you keeping up with the tube feedings. I know those are such a pain!! I would try to find out more about why they want you to fortify - it could really just be that more calories are needed, because you can increase the calorie density by volume. Breastmilk not being enough doesn't necessarily mean that BM isn't totally valuable and wonderful - just that there are ways to get even more calories in
to you mom!

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#18 of 23 Old 03-28-2008, 08:47 PM
 
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I wouldn't if it were just formula froma supermarket. But there are things that breastmilk doesn't supply suffieciently to be a complete food for a toddler, like iron. I would fortify with one of those complete food formulas.
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#19 of 23 Old 03-28-2008, 09:26 PM
 
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I have fortified my bm w formula, the Hypo-allergenic kind (Neocate and EllaCare) for a FTT baby. I was on a seriously restricted diet to ensure he was free from known allergens and we were still having terrible problems. Pumping is hard work, way to go mama!!!

Today, my babe is a plump healthy toddler. He had bm and he has his special formula. I'm not "thrilled" about the way feeding this one ended up and I had to move outside my box of thinking. The end result, of course, was worth every agonizing decision.

To the OP, do what you feel is necessary to have a healthy baby thriving properly.

Formula's beginnings were noble, formula has saved lives. Don't knock it just b/c it's presence today is less than noble. Many very attached mamas do not have the luxury of any other option, pumping is hard work, sick babies are demanding, and even when we do everything in our power to have a baby 100% bf, it does not always work out that way.

My LO had so many food intolerances that I was not able to home made raw dairy formula, if you can, that might be an option. Nourishing Traditions has 3 recipes for baby formula, one is meat based I believe; but it really seems like it would be rather gross. I have fed my last 3 children meat as a first food due to food allergies/ intolerances. I simply did not have the time either to make formula or play around w finding one that would work.

I'm sure you have looked into this, but in case you haven't the vomitting might be from a food intolerances or lacking enzymes or probiotics. My LO was vomitting terrible and I had reluctantly put him on medication for reflux -- then I found an alternative doc to help us and the vomitting stopped with the introduction of enzymes and probiotics. I only need to do the enzymes and probiotics 1X per week now.

I know it's a hard decision to fortify bm. I opted to do it, my LO lost over 10% of his body weight from reactions to proteins in my bm. I knew what it was from, he's baby #2 to have this same problem.

The calorie content explained for my situation - "they" estimate bm to be about 20 calories per ounce, thus formula has 20 calories per ounce. In my case, I was adding 1/2 scoop to 4oz of bm to yeild 22.5 calorie ounce.

The formula companies make a Breast Milk Fortifier, I was unable to use this due to the milk allergy. It was the same idea only using hypo-allergenic formula.
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#20 of 23 Old 03-29-2008, 12:34 AM
 
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Let's lose the "nasty" talk, please. It's getting in the way of the actual conversation and is baiting and offensive, which is against the UA. Thanks!

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#21 of 23 Old 03-29-2008, 01:28 AM - Thread Starter
 
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coloradanmom, does your LO have HLHS? With the multiple heart surgeries, sounds like it. That's what my dd2 has along with wolff parkinsons white syndrome.

Electra375, yeah, we've tried the probiotics (which she's still on just for good measures) and the digestive enzymes with no luck. Thanks for the suggestion though!

thepeach80, she had a scope and biopsies taken a while back that came back normal, but if it is something like EE, I think it may have been done too early for a diagnosis. We actually have a second one scheduled for next week, so we are really hoping for some answers. The GI doctor says allergy testing wouldn't give us any answers because if it is a food allergy, it's a non IgE one, so the test wouldn't be accurate.

SKSsmommy, Thanks for all the great info on J tubes and such. I don't know much about them except that's our last resort that we are now up to.

moondiapers, I know what you are talking about, but I don't think it's thickness sort of issues. We've thickened the milk before with rice milk and cornstarch and formula when she was a month old and it didn't do anything but give her a bad diaper rash.
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#22 of 23 Old 03-29-2008, 03:26 AM
 
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I fortified DDs EBM with preemie formula (neosure), to help her gain weight. At one point I was adding enough to bring it up to 28 cal/oz, and then as she was able to take more in at a feeding we gradually phased it out until she was getting boobie juice, straight up. I was still trying to breastfeed directly, but she preferred her tube and later the bottle, so I ended up being another exclusive pumper. I don't think the fortification had anything to do with that, though.

I resisted the idea of fortifying my milk at first, too, but it was such a struggle to get her to take milk in and keep it there, I figured why not give her a little extra boost in every ml she digests. She started packing on the ounces after that, so I believe it was the right decision. As a PP said, if I could only get 10 ounces of milk into her on a given day, those extra 50-75 calories from fortifying mattered. It's not that my milk wasn't "enough" - it was. I just slipped in a little something extra while she needed the boost. I still consider her breastfed.
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#23 of 23 Old 03-29-2008, 12:22 PM
 
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I'm sorry if this feels as though it's intended as an attack on your choices, but it's not - it's an accurate statement in these circumstances.
I would appreciate you changing this line. I did not choose to save my daughter's life. We are not given the choice to do so, we are entrusted with that duty. I saved her life, and am quite happy about it. There is no choice between the slow, purposeful causing of your child to fail to thrive and later die and feeding them the food that allows them to thrive and grow. A choice implies I could have done either, and I can promise you the state would have taken my child long before I was allowed to nurse her to death over ideals and principles.
Rhetoric about inferiority and choice will continue to drive a spike in the middle of lactivism that will forever make it weak. Its only inferior in SOME cases, so blanket statements are inappropriate and flat out WRONG! It just continues to ruin our image as a whole when people bash formula use in blanket statements without regards to the fact that formula has a very definite time and place where it is not only appropriate, but necessary AND sometimes SUPERIOR. Yep, I said it. Elecare is superior to my breastmilk for my kid. ANd always will be. My BM and my insistence on nursing her probably actually caused some harm, hopefully transient. So please remember that language whose purpose is judgement is not helpful in furthering a cause to which you wish to attract others...After all, we win more flies with honey. I pray no one else has a child that needs a medically necessary formula because I fear too many moms around here are guilted into doing not what is best, but what is crunchiest.

So next time it seems appropriate to judge formula in blanket statements, remember me. Remember the 3 years of breastfeeding, the fact that I am a BFAR mom who lived on a TED for months - Remember that I have a wealth of information to share in the BFing community regardless of how my daughter is currently fed. Remember that formula isn't always a choice, it is sometimes a necessity and at those times it is absolutely not inferior, and how many moms who have important experiences and knowledge will be driven away from the cause by language such as this.
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