Struggling with the NICU - Need some resources

[Khourtniey]

Ive been having issues with the NICU and breastmilk since my youngest was born in March... I specifically stated NO formula BREASTMILK ONLY! I had it on my birth plan and it was discussed... They started her out on breastmilk.. She wasnt ready for ANY food not even breastmilk.. So they waited a few days and tried again.. Still not ready.. A day or so later she got an infection in her blood so they stopped the feeds.. When they started them up again they used a formula (that I said absolutely do NOT use this one) and blamed it on her not tolerating the breastmilk even though they didnt even try to re-start her on the breastmilk they just went straight to the formula... Fight after fight I tried to get them to change her to breastmilk but "She isnt tolerating the breastmilk... she isnt ready for it.... Once she is back on full feeds we will start it.... we will start it soon" yeah it wasnt getting started... FINALLY they decided to add some back in her formula... Then they stopped it again.... Then they added it again.. Nevermind the fact that they refused to use the formula I wanted and that was a fight alone... Today I FINALLY won the fight and she is back on full breastmilk. There is a blog in my signature that says more of my recent struggles with the NICU but Im seriously peeved at this hospital and what they are doing especially with the feeding issues. I just feel like I should not have to fight for this. It should be obvious that the best thing for her is breastmilk. Instead Im being treated like Im a huge problem because Im fighting them on it.

Anyway.. I have a feeling this is not the end of it and Im needing some help with information about formula and why it is so bad. They seem to think that formula is just as good and I want them to know that I am NOT ok with formula.

[naupakamama]

Many

I am so sorry that you have to fight at such a stressful time. I don't really have any advice except to support you and say to keep fighting. You are a great mom! Maybe just a heart to heart with the nurses about how important this is to you.

[naupakamama]

Is there any way you can find a ped that will say breastmilk only. That is probably the best way to get them to listen...

Otherwise, try kellymom.com for resources - it is the best.

[tireesix]

Surely messing around with feeds like that isn't good for her, the poor baby.

I don't know what to say, not in your country, I just hope something gets worked out. This is awful.

[TefferTWH]

What does the pedi say? When my son had jaundice, my pedi stopped the possibility of formula very quickly by saying BM would be just fine, so I nursed him, then pumped and had that fed to him instead of the formula back-up the nurses preferred. That ended the argument with them, because it's big trouble if they violate a doctor's orders.

[BugMacGee]

Are they giving her some kind of elemental formula? It would be helpful to know what kind they are giving her. While we start out with breastmilk in all cases (unless mom expresses a desire to FF her preemie/sick infant THere are some babies that don't tolerate the proteins in MBM so they are tried on elemental formulas. Not condoning this, but it's different than just giving Enfamil or something.

[Khourtniey]

The ped isnt involved. Its only the NICU doctors because she is still in the hospital and hasnt come home yet. The ped has had no say in it. And I really doubt if the ped talks to them that they will change anything.

Ive been pumping for 3 years so its not an issue of them not having any. They have over 200 ounces at the hospital alone.

[BugMacGee]

Have you tried eliminating dairy from your diet? YOu could try that and label the pumped milk as such. We've had some success with that in babies that have a hx of feeding intolerance.

[Khourtniey]

Originally Posted by BugMacGee

Are they giving her some kind of elemental formula? It would be helpful to know what kind they are giving her. While we start out with breastmilk in all cases (unless mom expresses a desire to FF her preemie/sick infant THere are some babies that don't tolerate the proteins in MBM so they are tried on elemental formulas. Not condoning this, but it's different than just giving Enfamil or something.

I specifically told them if she has to use any formula to use an elemental one.. I told them specifically that nNeocate,is the ONLY formula I wanted to use. They knew this.. but they put her on Alimentum.. So I told them again.. They put her on Neocate then... Then suddenly (like yesterday) they decided it was too expensive so they used Elecare.. Im not thrilled with Elecare I would prefer neocate but I said ok... Then today they put her on Alimentum... I dont want Alimentum. They were making a big deal out of the neocate but then decided that they "might" make an exception.... Didnt happen. They talked to the doc instead and ended up using full breastmilk. There is more on the blog that explains more of it.

And it isnt an issue of her not tolerating the breastmilk. They havent given her a chance to see if she would tolerate it since the very first time she was on it at like a week old... They have mixed some in the formula and she tolerated it just fine. They have just been refusing to add more into the formula and they claim that she wouldnt tolerate it but again, they havent even tried. And only recently did they start adding breastmilk into the formula. She is almost 3 months old.

My whole point.. I told them NO formula... If they MUST use formula then NEOCATE ONLY!!!!!!... So they do everything they can to avoid doing what I want... FINALLY today they have her back on full breastmilk. It has taken almost 3 months to get this far!

[Khourtniey]

Originally Posted by BugMacGee

Have you tried eliminating dairy from your diet? YOu could try that and label the pumped milk as such. We've had some success with that in babies that have a hx of feeding intolerance.

She doesnt have a feeding intolerance with breastmilk. The only intolerance she had was when they started her out at a couple days old when she obviously was not ready for ANYTHING.. not even breastmilk. Since then they have claimed intolerance but have nothing to back it up with besides that first trial on the breastmilk when she wasnt even a week old.

[BugMacGee]

But it's good to start preemies on gut stim feed ASAP unless there are contraindications (high mag level, really poor gut perfusion) Waiting to start feeds for too long is not a good idea. We try to start day 2-3.
We sometimes use Alimentum (if we have no BM) because it's higher in protein than other premature formulas. Some are higher in phosphorus, some in other minerals blah blah blah.

Can you clarify...They are slowly adding in breastmilk to the formula??? Wha? That is completely backwards.

[Khourtniey]

Yes. They are slowly adding breastmilk to the formula... The blog link in my siggy goes into a little more detail with more of the history on it.. This thread has kind of jumped around a little But yes...

[PatioGardener]

If you want hard data, do a search on breast milk and NEC in premature babies. The risk of NEC is super high is formula fed babies and almost non existant in breastmilk fed babies.

Other risks that increase with formula are respiratory infections, UTIs, and gastro infections. But those are in healthy term infants - I'm not sure the studies have been done on babies born prematurely. (Of course, there is no evidence to think it would be any different with preemies...)

ps. So sorry to hear of your NICU battles about this. I 'm sure you have enough stress without adding that!

[Can Dance]

yeah I am a bit confused. I thought formula was definitely the past option, waaayyyy behind breastmilk for feeding preemies. it does funky stuff with full term babies, I can't imagine preemies doing well. Your milk will be milk for a preemie right now anyway. I am really confused by your doctors care of this child. I am no expert at preemie care, but it really doesn't make medical sense just coming from a bf knowledge.
and I am SO sorry they are disregarding your wishes. they should be ashamed. :

[homewithtwinsmama]

It must be in the "orders". If the neonatalogist doesn't get it into the orders it won't happen. You need to call a team meeting and have the nurse manager in on it as well. I had to do this three times with my preemie. I was able to avoid the formula and the bottle (but not the d*** breastmilk fortifier) by simply refusing consent and insisting on team meetings any time they were pushing it. My dh would come in with me for all team meetings. At one point we threatened to hire an ambulance and go to a hospital that would be more respectful of our rights as parents. That got some real attention. See my story here on MDC at

http://www.mothering.com/articles/pr...mama-nicu.html

The NEC and breastmilk connection is well documented. Also bm is tolerated better than formula in most cases where elemental is no longer needed. You could also go to the hosp. admininstration if the team meeting gets you no where. I did this after we left the NICU and made a huge fuss that caused them no end of annoyances after we left.

[UberMama]

{{HUGS}}

When my twins were in NICU I had to push them to give a certain formula. And I didn't bother with the nurses, since it wasn't their decision. I went to the head nurse who directed me to the neonatologists (four of them!). They wanted to put them on regular ole' Similac where I wanted them on this 22 calorie stuff (can't begin to remember the name right now). I wanted what they wanted as far as 50% BM and 50% formula but they were giving the wrong formula at first.

Anyway, you have to go in and complain and ask for supervisors and higher ups. This your baby, do not be afraid to raise a little heck. You don't have to be rude, of course but SOME people in NICU get so used to doing what they choose, they seem to forget that for the most part, we as the parents are the sole decision makers.

[Jenifer76]

I like the idea of a team meeting.

I am sorry you are going through this -- its hard enough to have a little one in the NICU. We were lucky when my DD was born prematurely -- the doctors handed me a double pumper and said "Get to work!"

[chirp]

no resources, just me...



good for you for sticking with this! it's hard to be strong in the face of people who are just "doing their job"...and keeping up the pumping for three months!

wishing your daughter a safe trip home sometime soon!

[Khourtniey]

Originally Posted by chirp

no resources, just me...



good for you for sticking with this! it's hard to be strong in the face of people who are just "doing their job"...and keeping up the pumping for three months!

wishing your daughter a safe trip home sometime soon!

Ive been pumping for over 3 years... so these past 3 months have really been nothing.. but its frustrating when I am pumping for her (and her older brother) and they werent even using the milk intended for her... They actually sent home over 100 ounces (about 2 bins) because they didnt have the room for it. They still have about 6 bins full of milk. I stopped leaving milk at the hospital a long time ago for her. Ive been taking everything home with home that I pump up there and either using it for my son or donating it. I dont have the room for it all.

But when they switched her back to all breastmilk the other day I was sure they were going to find some reason to take her off of it.. but they havent yet... She is tolerating it perfectly.. just as I knew she would. I just want to see the doctors and get in their face and scream I TOLD YOU SO!

[Khourtniey]

Originally Posted by UberMama

{{HUGS}}

When my twins were in NICU I had to push them to give a certain formula. And I didn't bother with the nurses, since it wasn't their decision. I went to the head nurse who directed me to the neonatologists (four of them!). They wanted to put them on regular ole' Similac where I wanted them on this 22 calorie stuff (can't begin to remember the name right now). I wanted what they wanted as far as 50% BM and 50% formula but they were giving the wrong formula at first.

Anyway, you have to go in and complain and ask for supervisors and higher ups. This your baby, do not be afraid to raise a little heck. You don't have to be rude, of course but SOME people in NICU get so used to doing what they choose, they seem to forget that for the most part, we as the parents are the sole decision makers.

I think their problem is that they arent used to parents who are demanding. They are used to the parents who just go along with whatever they want to do..Most of the parents are like "You want to give my baby a shot? Sure. Go ahead." or "You want her to be on this formula. Sure".. Not me. I make the decisions and they dont like it. They say. "We want to do this" and I say "No, do this" They dont like having a demanding parent. Ive been frustrated with them for a long time and have never gotten rude with any of them until I spoke with the doctor the other day. Normally I just rant on my blog but Im just fed up with all of their crap.