Anyone have a baby in the NICU?

[Rach]

My sister had her first child, a boy, on April 2nd. He was born with a congenital heart defect [HLHS] and had surgery when he was 4 days old. They of course had to starve him for over a week, and once they started feeding him, he wouldn't. She's been pumping her breastmilk for him, and they've been feeding him, but here she is 20 days later and her pumping has become less effective. She gets maybe 29ml total, when she was filling bottles a week before.
The problem is, babies with heart coditions tend to tire out easier when the eat and give up. We understand this, but the hospital decided he loses too much weight while breastfeeding [wow, she's only fed him twice!] and will now only bottle feed him or tube feed him. His speech therapist is not pleased with his progress, and won't let my sister breastfeed and is having the baby on an every 3 hours schedule. The bigger problem is the baby ate an entire bottle for the nurse, ate an entire bottle for his parents, yet ate only 5 ml from the speech therapist.
I've already told my sister to eat oatmeal, drink water and try fenugreek or mother's milk tea to help build up a bigger supply so she can get more pumping.
Do any of you know her rights as far as being the parent of a sick baby in the NICU?
I was sure to explain to her not to listen to their crap about her not producing much. And she herself is upset because he roots for the breast when she holds him, but they won't let him feed. I told her to ask them to put him on demand during the day, but she said they said no.
What can she do?! If he doesn't get more effective at eating, then he'll have to go home with a feeding tube IF they let him go home. I realize not many of you dealt with issues like this, but if any of you have, please help her!

[SEEPAE]

She does have the right to stand up for her baby.

My friend's baby was born with a hole in her heart and a cleft palate, and was in the NICU for a month. They tried to give the baby formula but she yelled and picthed a fit and said she would pump and give the formilk to her son and the hindmilk to her daughter. She doubled her birthweight in that month she was in the NICU on ONLY hindmilk(she was 4lbs9oz when she was born adn 9lbs+ when she left).

I'd advice her to pump as much as possible and seperate the for and hindmilk into 2 different bottles, give the hindmilk first and if baby is still hungry then the formilk, or she can freeze the formilk and give all hindmilk, but pumping lots and lots will help, and hand expression will help.

What kind of pump does she have?

[wende]

YES! My ds was born 8 weeks early. He was in the NICU for 3 weeks until he was able to keep his temp up and while he learned to "suck, swallow, breathe". I pumped like a mad woman! When my supply started going down I pumped more frequently to bring it back up. It was difficult, but it was important. They have all the babies on a 2 or 3 hour feeding schedule and won't do on demand. I would schedule my visits around his feeding schedules. I always told the nurses when I'd be there and there were times that I'd go in there and they would have a tube in his nose and a dropper full of milk (hopefully my mounds of EBM) hanging from his incubator. I pitched fits when they told me that I couldn't nurse him. I reminded them that I had every right to nurse my child and how DARE they stick a tube in his nose when they knew I was coming. I would then remove the tube and nurse him. Even if he only nursed for a few minutes, only if he only got a very small amount from me we were bonding and we were building our breastfeeding relationship and I was not about to let some nurse tell me otherwise.

Your sister will have to stand up for herself. She will have to do it over and over and over and over and over again. Eventually they will catch on if she doesn't back down. FWIW, my ds didn't nurse well until 2 weeks after he came home. He hasn't had a bottle since. In 1 minute he will be 10 months old!

[Rach]

wende: Happy 10 month birthday to Kaiden! I will tell her to be around during his feedings. Perhaps having him with her will help her pump better.

SEEPAE: Thanks for the idea! I'll be sure to tell her to do that. I never even thought of doing that! She has http://www.evenflo.com/pr/bp/prbp_comfselect.phtml an Evenflo comfort select pump. It was working great but over time, it's slowed down. I will definately give her the hind milk suggestion! I think that will definately help.

Thanks to you both. I will tell her to stand up for herself and raise more of a fuss. Afterall, if they really don't like it, they can send him elsewhere. I will tell her your stories and give her your suggestions!

[flminivanmama]

my twins were 11 weeks premature.

first of all she needs a different pump. she needs a hospital grade pump - that is the ONLY type of pump that a person who is pumping full time for their child should be using. she needs to speak to the hospital LC immediately and get the correct pump. also the LC can be her advocate and help her stand up to the NICU staff.

I used to meet the LC everyday in the NICU at one of their feeding times (2 pm). we had a standing date and I was allowed to try to breastfeed one of the babies for 10 minutes with her help (ugh) and then they tube fed them. the next day was the other twin. sigh.

also the night nurses are generally WAY more accomadating so if she's doing kangaroo care and the baby starts rooting a night nurse is generally A) less likely to stop her and B) more likely to try to help

HTH

make sure she gets the right pump asap

[Quirky]

How often is she pumping, and what kind of pump is she using? It is crucial that she use a hospital-grade pump and pump every couple of hours round the clock, preferably by her baby's bed if she can. It sucks to have to do this, but she needs to keep her supply up if she wants to nurse.

She should have her doctor write her a prescription to get domperidone from a compounding pharmacy (or she can order it from overseas, but it will take a while to get here - www.globaldrug.tv ). It is very safe and very effective in increasing milk (much safer than Reglan). See

http://www.kellymom.com/newman/domperidone_01-03.html

http://www.kellymom.com/newman/index.html

for more info.

In the meantime, she should take blessed thistle and fenugreek, 3-4 capsules of each 3 times a day, or get a tincture like More Milk Plus from www.motherlove.com .

I agree that it's crucial that she get a lactation consultant to help her - preferably one who's board certified (IBCLC). Here's where to find one:

http://www.iblce.org/us_regional_registry.htm

She needs the support of a professional to make this work, AND she needs to stand up for herself and her baby! Breastmilk is even more important for babies with physical problems than it is for healthy babies.

Here are some resources on nursing the preemie baby that might have some helpful hints; maybe you could read through them and pass on information to her:

http://www.kellymom.com/babyconcerns...p-preemie.html

I know Dr. Newman says that nursing is LESS tiring for a baby in the NICU than the bottle - ask her to ask her doctors to PROVE to her that bottlefeeding is less tiring than nursing!!!

I know there is a mom here who pumped for a baby with a heart defect; I don't remember her name but will try to find it. Also, I will try to find a thread I remember about babies in the NICU that has good information in it.

[Quirky]

Ummm, stupid question, but why does a newborn have a speech therapist? And does this therapist have ANY training in breastfeeding? A 3-hour feeding schedule for a newborn is ridiculous and not supported by any evidence.

ETA: The American Heart Ass'n says that breastfeeding is NOT more tiring than bottle-feeding:

Isn't breast-feeding too hard for my baby's heart?

The “work” of breast-feeding is actually less than the work of bottle-feeding. Sucking, swallowing and breathing are easier for a baby to coordinate, and the amount of oxygen available to your baby is greater while breast-feeding than when bottle-feeding In general, when compared to bottle-fed babies, breast-fed babies with congenital heart defects have more consistent weight gain.

link

The information I am reading says babies with heart defects need to nurse frequently for short periods of time.

Your sister really needs an IBCLC with experience in these issues! Maybe you could call around and find one for her from the directory I posted above.

[flminivanmama]

Quirky it is standard for a baby in the NICU to get a speech therapist if they are having trouble taking the bottle. my guys saw one everyday at 9:30 am. fortunately for me she was a big advocate of breastfeeding and really stood up for me. unfortunately she had to teach my guys how to take a bottle which of course made nursing that much harder.

3 hour schedule is standard. just be grateful it's not every 4 hours which is what they do to a lot of the preemies.

[Quirky]

OK, found some threads for you:

baby in the NICU

MDC mamas with babies with heart defects thread

This is the story of Sleepymama pumping for her baby.

[SEEPAE]

Maybe she should try a different pump, I dont trust many pumps.

I have a lactina I got from WIC and she should be able to get one from the hospital or clinic. Or try a Avent Isis. I prefer the Isis over the hospital grade pump ANY day.

I still nurse DS full time(12-15 times a day) and he is 9 months and I can still pump a full bottle on the Isis ever RIGHT after I nursed him.

They are the same price as the evenflo I believe. Maybe that would help her.

[Mamid]

Every 3 hrs? why not feed him every 2, or 90 minutes, or hour?

If he's rooting, he's hungry. He should be allowed to nurse first then supplement, not the other way around. The hospital is sabotaging that nursing couplet!

GRRRR... if I was near..... GRRRR!!!!

[SEEPAE]

Originally posted by Mamid
Every 3 hrs? why not feed him every 2, or 90 minutes, or hour?

If he's rooting, he's hungry. He should be allowed to nurse first then supplement, not the other way around. The hospital is sabotaging that nursing couplet!

GRRRR... if I was near..... GRRRR!!!!

YEAH:

[wende]

flminivanmama, I've never heard of such a thing! What does the speach therapist do??? My ds didn't take a bottle at every feeding until 2 days before he came home and didn't take one at all for a week and a half. He never saw a speach therapist. It's odd how different hospitals do such drastically different things.

I do agree that the night nurses were MUCH more giving and kind. They were friendly and all had a peacefulness about them.

[Mamid]

Night nurses generally don't have doctors breathing down their necks and expecting them to be handmaids for them... So they are generally calmer.

[flminivanmama]

yeah I found that when I was going through it talking to other preemie moms around the country (& world) that so many places do it so differently!

the Speech therapist basically worked with the twins on their cheecks, their tongue and their chin. being born at 29 weeks they didn't have the instinct to suck, swallow and breath (yes I told them bf would be better for that. sigh.) and they didn't have the fat pads in their cheeks... they'd basically just keep their mouths open when feeding - not suck. plus they'd have A&B spells when feeding.

[wende]

Well, that's very cool! How interesting that someone would think to involve a speach therapist in the process of feeding.

[Rach]

I wish I was there, and I'd throw a fit for her!
Well, she managed to flag down one of his doctors. She asked him about breastfeeding and the doctor told her that babies with heart problems tire out too quickly AND that they never have a good latch. LMAO! She had nursed him twice before! When she told him that, he agreed to letting her nurse 5 minutes on each breast.
I told her to nurse 10 minutes on one and alternate breasts with each feeding, that way he's sure to get both fore and hind milk and help with weight gain.
Hopefully, all is well. The nurses are understanding, but none of them will do anything without doctor's orders, and none of them bother bugging a doctor for her. She is satisfied with his care in every other way, but this is one thing she needs to stand for.
I'll tell her to use a hospital pump [am I the only one they didn't work for?!] and I'll let her know about domperidone, if she needs it.
Hopefully, the little guy will start thriving as babies with his heart condition are often diagnosed with failure to thrive. They've been working with HLHS babies for over 30 years, however, they're finding success more and more within the last 15 years.
I'm reading all the links you've given and I can't thank you enough!!
He's in the NICU to learn how to eat, since they didn't feed him until he was almost out of the PICU..at over a week old!! They didn't want him to have any other complications with his digestive system on top of his heart, as most babies with his condition do.
Life is so complicated, but I told my sister, most importantly SHE knew best and THEY worked for HER. Hopefully, things are better today.
Thanks for the help! I'll update again soon!