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Preemies and hospitals/doctors - Page 2

post #21 of 36
Thread Starter 
I think there are some confusions in this discussion. Some of us are describing supplementation occurring at the breast via a supplementer like the Medela SNS or the Lact-Aide. It's a tube that is taped to the breast that is connected to a bottle or bag with formula in it. As the baby sucks at your breast, he stimulates you to make milk, but receives breastmilk or formula without having to work hard for a let-down. It's got the benefits of both breastfeeding and bottle feeding for a child that is too weak to eat for long.

THAT is what I wanted to do with my son in the NICU. I never would have refused to let them take him. He really did have trouble breathing those first few hours, and was tired after that. He also ended up pretty jaundiced, so he needed treatment for that too. He was never on the GI tube that went directly to the stomach. I never protested formula because I had low supply and always did, despite doing everything Dr. Newman, LLLi, Kellymom, and 2 IBCLCs said to do. I just wanted the feedings to occur in a way that would best preserve the breastfeeding relationship, and that was denied. I would have even been happy with a finger feeding. We went through 4 months of hell to try to overcome the nipple confusion because my baby was still sick and needed all the bm he could get. I don't want to repeat this with our future children.

Even the American Heart Association recommends that heart babies be fed at the breast because oxygen levels are higher when a baby breastfeeds rather than bottle feeding. I was told that breastfeeding burns too many calories, but then they'd give him a pacifier and he'd suck while not receiving any nutritional support then.

My problem wasn't with the nurses. My battle was with the neonatalogists. Once my son was taking bottles for an entire day without a problem, I confronted him and told him I wanted to breastfeed. He told me it was up to the nurse on when I could start!!! So, there was no medical reasoning behind it. However, the neonatologists are held high in the community because they save so many babies lives. I felt I had no recourse for standing up for what I knew was best for my child.....to feed at the breast, and to do kangaroo care. They think breastfeeding advocates are crazy and care more about breastfeeding than the life of the child, so they won't listen at all.

How do you go about challenging such a system when your child is sick and you have no control over what happens to him? These doctors won't accept any research that was funded by LLLi.
post #22 of 36
Thread Starter 
Little Bear Mama,

I don't have access to the Vigilant Watch article you linked to.

There was a LC on staff, and she does what she can to fight the system. Most of the hospital-employed LCs in the area get annoyed with the neonatologists and nurses. They do the best they can, but in a system that won't budge or be open to new ideas, they just do what they can to help the mothers with her side of nursing (by giving counseling, pumps, etc) and don't fight the doctors.
post #23 of 36
But how do we then explain that a baby often gets a very small part of his/her feed from the breast while they can take the entire volume from an bottle?

There are so many issues that make preemies different than term babies that I won't get into here. Feeding issues are huge, however, and are the reason many preemies get stuck in the hospital once they are stable from a respiratory and thermoregulatory standpoint.

And we have NICU specific IBCLC's and PT's trained to help our babies learn to BF (many, to eat at all!).
post #24 of 36
Quote:
Originally Posted by MeepyCat View Post
I'd love to see the research on that.

Your statements do not match at all with my experience nursing (and pumping for and bottle feeding) a premature infant. And the whole "if mom is pumping for baby, she might as well come and breastfeed," thing - again, not matching with my reality. I could pump at home, and when I slept there I had a place to lie down.

I don't think that the idea that breastfeeding is a challenge for some premature infants is bogus at all. It was very clear to me from observation while we were still in the NICU that nursing exhausted my daughter and she wasn't able to do it long enough or consistently enough to get as much milk as she needed, and that, by contrast, bottle feedings did not wear her out as badly. She wasn't confused - she has a great latch and a strong suck, and she always has. She got tired. Sucking directly from the breast takes more effort than sucking even from a very slow flow nipple. Yes, now that she's home, she is somewhat resistant to the breast because the bottle is easier. I'd rather have this minor battle of wills than worry about slow weight gain, or still be stuck in the NICU.

We are working on nursing more, but DD receives calorie-fortified breast milk and vitamin supplements from bottles - 6-8 of them every day. It's easier for me to offer bottles than it is to cope with an SNS. That's entirely my call, and one that I think everyone gets to make for themselves, however, I will submit that I think the very LAST thing the mother of a premature infant needs is to take on stuff that makes daily life any harder than it already is.
Another poster linked to the article I had intended to.

Also, there are other choices between breast and bottle, There are cups, for example, which are made especially for infants that are less likely to cause latch issues. And the SNL is another possibility.

As far as mom not being able to be in the NICU. Well, this is another kind of a problem. With very small or sick babies, of course they cannot leave. Some interesting work has been done, in SA I think? on getting babies to room in with mom at much earlier points than they were, with very good results. So moms, not nurses, do most of the nursing care, and are able to nurse the babies. THey have been quite successful in many ways.

In the US this seems more unlikely to me, and even NA, since many hospitals and neonatologists still refuse to believe that kangaroo care is actually more successful than incubators in many circumstances, even when presented with theevidence. And money might be an issue too, how many moms can afford to say in hospital with their babies? But that is related to politics, not just medical best practice.

But as far as the OP is concerned, it is quite clear to me why one might want to deny the use of an artificial nipple to a NICU baby. THe same thing happened to a friend of mine who had a 5 pound late pre-term baby. There was no reason not to help her breastfeed, but the nurses preferred to give a bottle and pacifier despite her direction not to.
post #25 of 36
Quote:
Originally Posted by BugMacGee View Post
There are so many issues that make preemies different than term babies that I won't get into here. Feeding issues are huge, however, and are the reason many preemies get stuck in the hospital once they are stable from a respiratory and thermoregulatory standpoint.
I don't think anyone is disagreeing with this, but it's obvious from this thread that there is a huge amount of disagreement between different professionals about how to overcome this.

I'm originally from the UK, it's common in hospitals there for the mother to remain in hospital whilst a child is in the NICU or at least to be readmitted towards the end of the stay, even if the baby is formula fed from the start. I don't entirely agree with this, particularly for medium length stays, I had friends who stayed 2-3 weeks and it drove most of them crazy! But, it does have the advantages that it resolves some of the problems that are being debated. Interestingly when I did a rough poll of breastfeeding success amongst my friends, it seemed that those with very early, or very ill babies who did initially require NG tubes did better than those babies who were considered well enough to be given bottles right from the start, it's not research, but it was a big enough sample of the local hospital to really make me think.

It turned out that my daughter never did figure out breastfeeding in the NICU (she was born in the US), but because I'd had a c-section, I was able to stay 3 days and at least try, has it been a vaginal birth, I'd have been discharged just as she was being admitted (she was 22hrs old when she went to the NICU). For those 3 days I would have been devastated to be anywhere else, regardless of any attempts to breastfeed. I honestly don't know what would have happened if they had insisted on keeping her until she was getting their required volume by any oral method, I think we just got lucky at morning ward round and despite her not having eaten by any sucking method that they were still happy to let her go, which then allowed us all the resources in the community to actually get her to breastfeed.

But the point here wasn't to debate the various methods of preemie/sick baby feeding, but what the parents control over that is. My experience is that in a lot of situations where us or our children are the patient, particularly when we've not done it very often, we do as we are told, we forget that as adults we are in charge of our bodies. It drives me crazy when women say they had to push on their backs, well, did you try moving? Often the answer is no, they told me I couldn't move, but what happens if you do move, do they manhandle you back into the bed, sometimes, yes, in which case it's assault, if you politely remind them of that the response will often be quite different.

I remember when having my 2nd, I arrived in the labour room and the midwife announced she would break my waters, my husband very quickly responded that she needed to ask our permission to do that and that we didn't give her that permission, he went a bit over the top and then added that if necessary he would physically prevent her from doing so! My point is that 9 women out of 10, or even 99/100, would just accept that situation and report it as "they had to break my waters..." and it's the same with our kids, it's quite clear from this thread that there are many many different approaches to getting babies out of the NICU and home with their families, NICUs often seem to have one feeding policy for all, when that isn't going to be right for all babies or all families, one family might choose the quickest route to being home, which might be bottles of formula, to another a few extra days to get breastfeeding sorted might be worth it for the year or more of breastfeeding rather than pumping.

I realise NICU is a very stressful time and as we were only there 3 days the stress of it is not something I've personally experienced, it hit me more afterwards, but when it comes to the crunch, unless the courts intervene, we are responsible for that child, we make the decisions!
post #26 of 36
I don't think anyone here is debating the fact that parents should have final say over their infant's care either.

One thing I think many people don't realize is that preemies who are both bottle and breastfed have a much easier time going back and forth than term infants do. *Flow preference* just isn't that much of an issue with them.

My own considerable experience has shown that late preemies are usually better able to get their entire feed with the bottle, before they are able to at breast (we weigh before and after each BF) And it can take weeks for them to be able to take everything needed by mouth and not need to be gavaged.


As for moms being there 24 hours a day. For so many families, that just isn't a reality. Many moms are themselves unwell. Many others have other kids to take care of @ home and do not have the option of staying indefinitely.

Anyway, to the OP, I hope it works out for you. Appeal to the nurses. From what your last post sounded like, they are the ones who will help you!
post #27 of 36
Quote:
Originally Posted by Bokonon View Post
That's awful - so if mom was unable to spend 24/7 in the NICU, her baby would inevitably end up staying there until mom could be there 24/7? What if she wasn't producing enough milk? Because a baby can't be discharged with a feeding tube unless they absolutely need it to be fed. I would be livid if my NICU had tube-fed my baby when I wasn't there for feedings, when it was capable of taking a bottle, especially because it would have further delayed discharge.
I really sounds like you're trying to pick a fight with your "what-ifs". Do you really think a hospital would keep a baby indefinitely in any of those situations? The point I was trying to make was that if you were committed to breast-feeding the hospital and nurses would do everything in their power to make it happen.
post #28 of 36
Quote:
Originally Posted by Bluegoat View Post
Another poster linked to the article I had intended to.
I found a link to an abstract (couldn't get the whole article, so I don't know what it says), and a quote indicating that NICU babies need not master the bottle before trying the breast. Nothing saying that breast is as easy as bottle for pre-term infants. Did I miss it?

I had my daughter at the breast while she was still receiving feedings by gavage tube. I pushed pretty hard to be able to do that and would recommend that anyone committed to breastfeeding do that pushing. However, she still needed the bottle.

Quote:
As far as mom not being able to be in the NICU. Well, this is another kind of a problem. With very small or sick babies, of course they cannot leave.
I would have loved to be able to room in in the NICU (even if there were major limits to my ability to take advantage of that option), but what's this notion that there is any time at which a parent can't stand up and walk out of the NICU?

RomanCarmelMom - you're describing the thing that made me most crazy about the NICU. Neonatologists made policy and recommendations, many of which sounded great, and then the nurse by the crib would contradict them. Neonate says "kangarooing is great! we really encourage it!", and nurse at cribside says "it stresses her out too much to move," or (on one memorable and infuriating occasion before I was discharged from hospital) "I called your nurse to come bring you back to your room." I sometimes experienced drastic changes over shift change, with the day nurse saying one thing about the baby's condition and what we could do with her and the night nurse disagreeing completely. I learned to pull the curtains by the crib and ignore them to an extent. And to remember the names of the nurses I liked and request them for DD's care team.

I made a huge amount of progress with the NICU the day I brought in my mother. She's a doctor, she sized up the team and proceeded to stomp all over them. I feel like I lucked out there. Can you possibly arrange to do something like bring your pediatrician (or any sympathetic ped) in - as a visitor if necessary - and help you talk to the baby's care team about care plans?
post #29 of 36
Quote:
Originally Posted by MeepyCat View Post
I found a link to an abstract (couldn't get the whole article, so I don't know what it says), and a quote indicating that NICU babies need not master the bottle before trying the breast. Nothing saying that breast is as easy as bottle for pre-term infants. Did I miss it?
I'll have tolook for another link, I can get it, so I am not sure what the problem is.

Quote:
I would have loved to be able to room in in the NICU (even if there were major limits to my ability to take advantage of that option), but what's this notion that there is any time at which a parent can't stand up and walk out of the NICU?
Ah, I meant the baby cannot leave. As opposed to decentralizing NICU care to mothers rooms or even to homes earlier than is the practice in many cases now.
post #30 of 36
Thread Starter 
Meepy Cat,

No, hardly any pediatricians in the area have priviledges at the hospital I birth at. The other hospital is a Children's Hospital, so most of the peds work there. The same neonatologists work at both hospitals, but the nurses are better at the one I birth at, and some are more accomodating.

How did you respond to the nurse that tried to send you away from your baby?? I think I'd have filed a formal complain about that nurse. My most infuriating moment was when one nurse would not leave us alone to bond. When my son would start fussing, she'd come over to comfort him, even if I already was. Then, she'd correct me and try to tell me what I was doing wrong.
post #31 of 36
Quote:
Originally Posted by RomanCarmelMom View Post
THAT is what I wanted to do with my son in the NICU. I never would have refused to let them take him. He really did have trouble breathing those first few hours, and was tired after that. He also ended up pretty jaundiced, so he needed treatment for that too. He was never on the GI tube that went directly to the stomach. I never protested formula because I had low supply and always did, despite doing everything Dr. Newman, LLLi, Kellymom, and 2 IBCLCs said to do. I just wanted the feedings to occur in a way that would best preserve the breastfeeding relationship, and that was denied. I would have even been happy with a finger feeding. We went through 4 months of hell to try to overcome the nipple confusion because my baby was still sick and needed all the bm he could get. I don't want to repeat this with our future children.
According to the info I have available to me, it would be "best practice" to let you supplement the way you felt was best. If supplementing at breast is what you wanted, barring a valid medical reason not to, you should have been able to do that. (I'll share that source in a different post. )

Quote:
Originally Posted by RomanCarmelMom View Post
I was told that breastfeeding burns too many calories, but then they'd give him a pacifier and he'd suck while not receiving any nutritional support then.
I have searched through many resources and have found absolutely nothing to substantiate that explanation. I would think if that was an evidence-based general recommendation for all preterm babies, then all the papers and "tool kits" would warn of this possibility and recommend not breastfeeding directly. Instead, they do the opposite and recommend kangaroo care ASAP, mouthing the emptied breast as soon possible, practice and comfort sucking on an emptied breast, and progressing to breastfeeding directly.

Quote:
Originally Posted by RomanCarmelMom View Post
My problem wasn't with the nurses. My battle was with the neonatalogists. Once my son was taking bottles for an entire day without a problem, I confronted him and told him I wanted to breastfeed. He told me it was up to the nurse on when I could start!!! So, there was no medical reasoning behind it. However, the neonatologists are held high in the community because they save so many babies lives. I felt I had no recourse for standing up for what I knew was best for my child.....to feed at the breast, and to do kangaroo care. They think breastfeeding advocates are crazy and care more about breastfeeding than the life of the child, so they won't listen at all.
That is an unfortunate attitude. For a preterm baby, breastmilk is medicine. In fact, the current research shows that all preterm babies should be fed breastmilk (unless a medical condition exists precluding it), preferably their mother's own milk (even if they don't choose to breastfeed directly or after discharge from the NICU). If their mother's own milk isn't available, donor milk is the preferred choice over preterm formula. Of course, some low VLBW preterm babies may require additional nutrients which could be provided by fortifier (or in some cases, with their mother's own hindmilk).

Quote:
Originally Posted by RomanCarmelMom View Post
How do you go about challenging such a system when your child is sick and you have no control over what happens to him?
I can't begin to imagine the extra stress that kind of situation would cause. : The best thing I could suggest would be if you knew there was a chance you would deliver preterm, to do your research before hand, ask questions and know what to expect of the NICU environment and people before you get there, and have available information to share when you're confonfronted with an issue where there is disagreement between the Neonatologist/Nurse/Parents. If you're in that situation after the fact, find someone to advocate for you. After you leave the hospital, assure that the staff is given current information and urge the hospital to make changes in order to practice with current, evidence-based methods. The best way to do that is to contact the hospital CEO, department heads, etc. This organization might be able to help you advocate for your baby: http://www.shca-aha.org/shca-aha/society/society.html


Quote:
Originally Posted by RomanCarmelMom View Post
These doctors won't accept any research that was funded by LLLi.
LLLI doesn't do their own research or fund research.

What kind of information would be acceptable to them, do you think?

Quote:
Originally Posted by RomanCarmelMom View Post
I don't have access to the Vigilant Watch article you linked to.
Here's a different link to the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/11785577

Here's another study that you might find helpful:
Formative Infant Feeding Experiences and Education of NICU Nurses
post #32 of 36
Quote:
Originally Posted by CallMeMommy View Post
I really sounds like you're trying to pick a fight with your "what-ifs". Do you really think a hospital would keep a baby indefinitely in any of those situations? The point I was trying to make was that if you were committed to breast-feeding the hospital and nurses would do everything in their power to make it happen.
??

I was committed to breastfeeding. I was also committed to getting my son home as quickly as possible, and couldn't be there for every feeding.
post #33 of 36
I've run out of time to post tonight, so I can't pull out quotes or studies. I did want to say that this information will answer most the questions posed in this thread (see both the tool kit and appendices):
http://www.cpqcc.org/quality_improve..._december_2008
post #34 of 36
Quote:
Originally Posted by RomanCarmelMom View Post
Meepy Cat,

No, hardly any pediatricians in the area have priviledges at the hospital I birth at. The other hospital is a Children's Hospital, so most of the peds work there. The same neonatologists work at both hospitals, but the nurses are better at the one I birth at, and some are more accomodating.
I'm not thinking of anything requiring privileges, just that you find a sympathetic doc to bring onto the unit as a visitor, and to help you discuss your child's care with the doctors on staff. My mom had no priviliges at the hospital my daughter was at, she's not even a pediatrician these days. She does, however, speak the language doctors speak (if that makes any sense). You need someone who can come in and deliver subtle professional insults to doctors who choose to ignore the recent research. It doesn't have to be someone with privileges.

Quote:
How did you respond to the nurse that tried to send you away from your baby?? I think I'd have filed a formal complain about that nurse.
That was pretty much my low point. I was less than 24 hours post-section, I wasn't even walking yet. I was too wiped out to do anything but go back to my room and cry. And then pass out, because holy heck I was tired. When I woke up, I made myself get out of bed and walk, so that I'd never again be at the mercy of whoever was pushing my wheelchair. I don't know that nurse's name and I never saw her again.
post #35 of 36
Thread Starter 
Meepy Cat,

Can I just borrow your mother the next time I have a baby?
post #36 of 36
Quote:
Originally Posted by RomanCarmelMom View Post
They also said that nipple confusion doesn't exist and is something some women made up to try to keep other women from giving their children formula.
Yeah, because the WEEKS of hell we went through, my son refusing the breast because he wanted a bottle, was all made up so someone else wouldn't give their child formula. I'm the biggest liar there is, and such a liar that I convinced myself it really happened.
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