13 day old baby banned from the breast for 11 days- please prepare me....

[amandamcgrady]

Im the mother of 4 but had never breastfed until 11 days ago when my baby was born and we have exclusively breast him and it has gone perfectly, no problems after the initial afterbirth pains that it caused for a few days.

The problem is now that he had a reading on his PKU testing that is requiring us to take him off nursing and put him on soy milk until I get back the second test (mailed off yesterday) supposedly 9 out of 10 times the readings are false so there is most likely nothing to worry about.

This was a hard decision and the chance of the baby having Galactosemia has devastated our family since we found out. Please dont make this post into whether or not you think he should be off the formula or you agree with this treatment, because like I said this is hard/scary enough right now.

I am needing some support/heads up on what I can expect out of a baby this young when trying to begin to nurse him again after this test comes back to be a false alarm.

What do I do if I have latching issues after him being on a bottle?

Like I said I have never nursed before but havent had any problems this last week of his life.

Also I am having to pump during this waiting period so that the supply doesnt dry up. I have a hand held pump and the freezer bags. But I am worried that I didnt get enough.

Ever since I started yesterday afternoon all the way until early this morning I only got *1* freezer baggie full- I think its 5 or 8 ounces.

How much *in ounces* should I be pumping a day to try to keep up with where I am with a baby that is going on two weeks old??

Also if the pumping thing doesnt work out is there any chance that I can dry up within 7-10 days??

Please any pumping tips and reintroduction tips you can give me please do so.. I have been googling but there is a lot of the terminology that Im not that familiar with and sometimes its easier hearing from a REAL pERSON.

Thanks, Amanda


Edited to Add: Ok so I just went to check the little freezer baggie to see just how much it was that I pumped in that 12 hour period and it looks like the bag was labeled up to about 6 ounces but I had it filled to about 10 ounces and it was about to explode............ I guess your not supposed to fill it all the way??

[amandamcgrady]

Also it would REALLY help my heavy heart if by chance any of you have recieved false PKU testings and then on the retest everything turned out to be fine................. I have been crying for two days straight, I am soo stressed and scared about this.

Thanks.

[mom22girls]

First, I'm sorry you are going through this. There is a saying I've heard living here in Sweden (although I don't think it's Swedish) that if you hear hoofbeats, it's usually not a zebra - meaning, it's probably a false reading and everything is fine.

Second - you need an electric pump. The handheld thing is going to drive you nuts. Can you rent one? Maybe from the hospital?

Don't worry about how much you are producing. Not only does it take your body some time to get used to a pump, but children are always more efficient nursers, so when your babe gets back to your breast he'll get more than what the pump does.

Also, here in Sweden, they don't bottle feed in these situations, they use a cup feeder, or a suckle cup (Medela make them). It takes a bit to get the hang of it but perhaps you can also find a finger feeder (tube on your finger tip). I would really try and get to a IBCLC lactation consultant on this one.

All the best, and chances are - it's a Zebra!

[mom22girls]

Oh, and 20 minutes per side (need double electric pump if possible) every 3 hours.

[KnittingTigers]

yes, rent a hospital grade electric pump, right now. you will get more milk and feel much less stressed about it. and i second the pp on using a tube to finger feed. jack newman provides an explanation in his book, or an LC can help. you can use an SNS kit and just tape it to your finger.

you are doing a great job for your son. i know this is really hard, but you will get through it.

and, if you need to switch your diet and are unable to use what you pump during this time, i might suggest finding a mama on milkshare to donate to. we are so grateful to the mamas who have given us their extra milk.

good luck, mama!

[thepeach80]

Changing her diet will not fix the problem if baby has galactosemia. You will have to do some research, but I remember reading you can bf some if baby has it and supplement w/ some form or lactose free formula (either soy or hypo, nothing actually marketed as lactose free). This may depend on the type of galactosemia. How is he? Does he act sick? Have a rash? My friend's son had the less-'bad' kind and he was very sick when she was bfing those first few wks, covered in a rash, his organs were shutting down etc, he was sick but had had a normal result (the tests are generally done way too early to get any decent results). If none of that is happening, he's more than likely fine.

Go get a rental pump NOW and use it. You need to pump like was mentioned, at least every 3 hrs for 20 mins OR if you're still getting milk out at 20 mins, go 5 mins after the milk stops coming out. You could do every 2 hrs during the day and go 4 hrs at night, but if baby is awake anyways, you might as well pump then. Stop the bottle and use some of the other things that were mentioned, or a syringe and just do it that way. It's hard work, but it'll keep baby from liking the bottle.

[thepeach80]

Also, I would freeze your milk in 2-3ozs at a time, you have to use frozen milk in 24 hrs, so freezing a lot at a time is wasteful b/c you probably won't use it all before it goes bad.

[nummies]

This happened to someone in the October DDC. I can't remember her name, but I will try to find her thread.

[katie&micah]

If you're on WIC check with them about renting a pump. In my state it's a one time fee of $35 and you get $15 back when you return it. The hospital here rents the same pump for $70 a month. I think you need to pump every time you feed him, keep your body on his schedule.

[nummies]

Here is the thread:
http://www.mothering.com/discussions...d.php?t=981021

Her story turned out great! (hope she doesn't mind me finding her thread, I just remember being so inspired by her!)

[amandamcgrady]

No he didnt act sick on the breast, he lived for it, he did have a very light jaundice but i figured that was because he was a home birth and didnt get the lights. i had his bilirubin/jaundice level checked and they said it needed no treatment.

Ive been reading all about galactosemia since this happened and i havent read anything about a rash but he has had wahat the midwife called a 'hormone' rash twice but it went away the same day each time. I hate to hear that a rash could possibly be a symptom.

He never threw up or had diarreah EVER with the breastmilk but he has on the soymilk so I take that to be a good sign.

He was almost 9 pounds when he was born and he was 9 lb 5 oz at the doctors office when he was 11 days old. Failure to thrive? I dont know, but i know it is normal for them to loose weight initially so probabally fine.

To answer you question I dont really feel like he had any symptoms of it but I have noticed that he seems more alert since he started the formula. Has anyone else ever thought that formula babies were awake more than breast babies??

Thanks for all the help.

I learned my lesson with the overfilling of the baggie, I never would have thought to just put in 3-4 ounces but it makes sense...

[mom22girls]

The alert thing could be because it is more work to breastfeed, so it can wear them out - also, it's hard to know because as he's getting older, he will be awake/alert more often. I'm really a believer that we, as mothers, know if something is wrong with our kids, and I think you'd know. I pray you get the good results back quickly, and have your boy back at your breast. :

Please post back when this happens in the nighttime parenting section that your boy is keeping you up with an all-night reunion feed!!!

Oh, and some good sites about pumping:

www.breastfeedingbasics.com
www.kellymom.com (has jack newman videos)
check the medela website for suckle-feeders and SNS or hazlebaker(sp?) feeders.

[Attached Mama]

Because this is a medical necessity, your insurance company will have to cover the cost of you renting a breastpump. Rent a hsptl grade electric one that will pump both breasts at once. You may need to notify your insurance co *before* renting the pump for coverage tho.

Also, your insurance company should cover consultations with a LC as well.

Pumping every 3 hrs does not sound like enough IMO. Usually recs are for every 2 hrs during the day and every 4 hrs at night. But then if you did 3 around the clock that should work ok also.

Def don't give him a bottle!! A Lactation consultant (LC) or someone from LLL can set you up with a finger feeder. Or you can even feed him out of a little dixie cup, tho you have to go slowly and it will make a mess.

Since he is gaining and not having problems, I wouldn't worry about the test - sounds like a false positive to me.

Hang in there!

[bella99]

My friend's son has the mild form of galactosemia. They breastfed for the first week exclusively, then stopped for over a week while awaiting the results of the second, more extensive tests. It turns out that my friend carries the gene for the classic (and severe) form, but her husband carries the gene for the mild form. Her other child is a carrier of the severe form and had a positive result at birth, but subsequent testing was all within normal ranges.

She pumped the entire time she was waiting for the test results. After they got the results that it was the mild form, her ped was okay with her attempting to EBF, and they would retest him after 2-3 weeks of EBF. It didn't work for them as he was gassy, constipated, and spiked a fever at least twice. All that time he was gaining weight though, so that's not necessarily an indicator. Once he was retested, his levels were much too high for them to EBF, so the ped suggested that she keep pumping and feed him from the breast only once or twice a day, and that after a few months they could attempt a return to EBF.

BTW, he did fine once he returned to the breast after the week or so that he was entirely on formula, and switches back and forth quite well now. Unless a baby has the classic form, they can be breastfed, just probably not EBF.

[azedazobollis]

I havent read any of the replies but my adoptive baby is 7 weeks old. She is exclusively breastmilk fed. Her PKU came back funky 3 weeks ago. The dr. had us continue her regular feeding with no changes because often these tests are false and our baby showed no signs of issues. We just got the second results back today and all was well. No PKU issues.

[thepeach80]

5ozs over birth weight at 11 day is fabulous! Most DRs like to see them back to birth weight by 2 wks, mine always took longer than that though. Your milk was good stuff for him.

[Ruthla]

I would go to the kellymom page about relactation, for tips on getting him back to the breast if the results come back good. Also, here's the page on alternative feeding methods, should you choose to not use bottles while awaiting the test results. And here's the page on maintaining your milk supply while baby can't breastfeed.

If the results come back showing a problem, please post the specifics of the results here. It may be possible to alter your diet and resume breastfeeding, if the problem is caused by the baby being unable to process proteins from foods in your diet. Or you may need to wean. If that's the case, then using bottles for the soy formula makes the most sense. But you may not want to use bottles when you're uncertain, as it might make it harder to get him back to the breast if you're able to resume nursing.

If you're unable to resume nursing, you may or may not want to continue pumping for a while and donate the milk to another baby. Certainly, you can be a loving, attached mama even if you have a medical reason to bottlefeed with formula. You can bottlefeed with love and sensitivity to baby's needs, NOT feed on a schedule, cosleep, babywear, etc.

[purplepaperclip]

Just wanted to throw in my experience for you. I was told I had to stop bfing at two weeks pp due to some antibiotics I needed. At the time, I didn't have all the info I do now. Long story short, dd had formula for 10 days out of a bottle. She went immediately back to the breast with not one problem and we have had a fabulous time bfing since then. She just turned 1 and is still going strong. I know for some moms/babies, bottles and formula can be VERY troublesome to the bfing relationship. I just wanted to let you know it can be done successfully. Sending you lots of good, milky vibes!!!

ETA: I used a rented Medela Symphony while I was on the abx. I pumped every 2-3 hours round the clock to keep up my supply.

[amandamcgrady]

Oh MY.... Thank you ladies soooo much for all the support and information.

I am so glad that I found MDC when I was planning the homebirth. I dont know anywhere else on the internet like this place and where people actually have the knowledge about all this stuff.

Thanks for telling me about all of the happy outcomes you mentioned above, That is what I wanted to hear since my doctor told me that 90% of the time it comes back fine the second time around.

Oh and Thanks to the person that mentioned WIC, I called after I read your post and they said that they give out the hospital pumps for free but you have to be on WIC, so tommorrow at 8:30 I am going to go apply for WIC and if I get it then I can get the pump at the same time AND get some Soy formula (I spent 25$ on the can we have now ugggh) AND they will give me and my 4 year old some food and juice and stuff..... So thanks for telling me about that...

My breasts feel like Ive been punched in the chest all day and my nipples feel like they have a sunburn. I have a purple and white evenflo handpump and the WIC LAC told me that it was junk and discontinue use ASAP. So its a good thing that I called.

To the person that wanted the exact stats for the PKU testing they are as follows.

Quote
---------------------------
His GALT (Galactose Uridyl Transferase) was normal, but his GAO (Total Galactose) is high. The normal value is less than 10; his was 11.5 According to that handy DHEC manual that you had borrowed, an elevated GAO with a normal GALT means he is at risk for GALK (galactokinase deficiency) and GALE deficiency (UDP galactose-4-epimerase deficiency).
----------------------------
Unquote

I will keep you all filled in.

And thanks for the thread on the other mom that went through this with Galactosmia, That gives me a good indication of how long I will have to wait, but I am in her exact same shoes right now and I am sooooo happy I was able to relive her happy ending.


Thanks to you all, Your all so smart!!

[PatioGardener]

Originally Posted by mom22girls

Also, here in Sweden, they don't bottle feed in these situations, they use a cup feeder, or a suckle cup (Medela make them). It takes a bit to get the hang of it but perhaps you can also find a finger feeder (tube on your finger tip). I would really try and get to a IBCLC lactation consultant on this one.

I totally agree that finger or cup feeding for this time would be the way to go.
There are videos at www.drjacknewman.com I think. I bet it's a zebra too and you guys will be nursing up a storm after this ordeal is over! Keep pumping, Mama. Your supply is very vulnerable right now. If you can manage, one pumping session between 1 am and 5 pm when your breastfeeding hormones are at their highest will really help.