Need Support - Marker for Galactosemia...Update!!!! :-) - Page 3

[audsma]

Oh, Carrie. Hugs to you! I've not had time to read all of the posts in this thread but wanted to offer that my DH "finger fed" DD with a tube on the end of his finger that was closest to my nipple size when she "needed" formula in the hospital before my milk came in. DD never took a bottle, and the finger feeding is a sweet memory that made him feel like such a part of the process.

[mamanurse]

Originally Posted by birthdancedoula

Alternative methods of getting the formula into Nora until that time are an option. Syringes, finger feeding, cup feeding...those are all things you can try while you wait. Of course, continuing to bottle feed as you are is fine, too...many babies can make the transition back to breast easily.

:doh I should have totally recommended this to you earlier when I read your first post. I'm so sorry I didn't think of my earlier adventures in a non-bf relationship with dd. We finger fed quite a bit the first few weeks with a syringe. Dh was a pro at it. An IBCL taught us how to do it.

If you're worried about amount of nutrition, then maybe you could at least try a Haberman feeder or something more compatible to bf than a commercial bottle. My coworker cried for you today. She has an 8 month old nursling and couldn't imagine having her baby diagnosed with that. You and Chris continue to be in my thoughts.

[Bella Catalina]

mama. Praying that she's perfectly healthy.

[Baby_Cakes]

Do you guys think that giving her bottles (we're using the medela breastmilk bottles and a Dr Browns bottle that is designed with a vent to reduce colic) is the wrong thing to do? Should we be using a dropper or syringe? The thing with Nora is she needs to suck. We even got her a Soothie just to save our sanity - and she really sucks the hell out of that thing. She was so used to being at the breast whenever she needed comfort that now she doesn't know what to do with herself, and she just cries and cries. I feel like a dropper or syringe wouldn't satisfy her urge to suck. Any advice?

[mamanurse]

It's hard for me to give advice Carrie because I genuinely don't think you and Chris are doing anything wrong. Seriously. You're doing what you're told to do. If Nora is gaining weight fine and her jaundice is cleared up, then she can probably get enough nutrition through finger feeding. Is it possible for you to call an IBCLC? We have a home service here in Portland that will consult. They'll also take calls over the phone for free. Maybe your MW has an opinion or can give you alternatives.

I'd let her take a paci. All she wants. Sucking is such an innate need for a lot of newborns. I can't imagine denying her that no matter the chance of messing uup latch. It might mess up her latch, but I don't think it does the same thing as a bottle.

[birthdancedoula]

^I completely agree. Babies have a physiologic need to suck and I think denying her that would be bad for all of you. Nipple confusion is a very real thing but at this point I think the risks in not letting her suck when she needs to far outweigh the potential benefits of keeping artificial nipples out of her mouth. Lots of babes do just fine using pacis and bf'ing. I think its probably more of an issue that she's using the bottle.

[herins]

I'm not in this DDC, but I read your post and am feeling for you. If you don't feel that you are going to get out of the depression, please consider talking to someone about it. Postpartum is already so difficult without what you're going through.

As for formula-feeding. Like all the lovely women have said before me - you are doing what is best for your baby. Breast is only best when it is indeed best! If she ends up being a carrier only, you can renew your bf relationship. I had to stop bfing for a week due to some ct scans after birth, and we got back into bfing. We had to work at it, but we went on to bf for 16 mos. Just make sure she is latching well with the bottle. You said you did skin-to-skin feeding with her, and that is what I was going to suggest. Do everything as though you are breasfeeding - hold her close, rub her hair, gaze into her eyes. She is still being satisfied and loving the cuddle time. You also have to force yourself to stop thinking of formula as toxic. It is not. It is the best possible source of nutrition for your baby's situation. I know the feeling all too well, but you really have to make yourself believe it.

Good luck. Enjoy your babymoon. You are obviously a wonderful mommy.

[mommysaurus]

All I can do it offer you hugs mama!!! you'll get through this! and you'll do what is necessary for Nora. I'll keep you both in my prayers.

[Baby_Cakes]

We went today for Nora's test. I got her preliminary results from her nb screen. Her GALT (enzyme level) is 2.4 and the cutoff is 3.5 (should be 3.5 or higher). Her total Gao (total galactose in her system) was 3.1 and the cutoff is 5.7 (should be lower than 5.7). So it seems she does have some enzyme activity, even though it is lower than what it should technically be. Her galactose levels were within normal range.

Chris was doing some research online and saw that in some states, they don't even check the GALT with the first nb metabolic screen, only the Gao. If we lived in those states, Nora's wouldn't have even been flagged, or it would have been caught much later (and if then, as probably the variant and definitely not classic).

I'm trying to remain positive, but at the same time I'm not completely sure what these numbers really mean. We didn't get to really talk to anyone about what they mean. They still only took blood and urine, and are sending out basically the same test again to check her GALT and total Gao. There's the chance that this test may be inconclusive as well, in which case they'll do the DNA sequencing...which means more pumping. I think honestly that is the most taxing part of all of this. I know it sounds selfish, but it is so incredibly emotionally and physically draining to be pumping every 2-3 hours, PLUS feeding her formula every 2-3 hours, PLUS still just trying to recover from the birth. If I didn't have my husband home with me, I don't think I could do it. There is just no way to pump, bottle feed, and console an incredibly cranky newborn by yourself.

And it wasn't a heel prick, btw - they had to take blood from a vein. Mama almost cried herself, Nora was screaming so hardcore! Ugh, it was terrible! But it's done, and now we wait.

[Amber Lion]

Sorry to hear you didn't get any answers today! Researching on the internet can be so helpful and frustrating at the same time! You're doing great Carrie, hoping you get some resolution soon!

[Skrimpy]

Carrie, I found an info sheet from the University of Missouri that does some explaining of the levels that you may want to look at if you're wanting more information: It's at this page then click on the "follow up protocol" link http://www.genetics.missouri.edu/Galactosemia.htm

to you guys and I hope the waiting goes quickly for you!

[Bee21]

I hope you get very good news after this draw, and that time flies for you while you wait.

[carolina~mom2be]

I came here to see how it went today!! At least the hard part is over...now just the waiting!!! You're an awesome momma Big hugs to you

[OrchideZ]

Big hugs to you and your sweetie!

[Changed]

Glad that part is over... from your post and that link it sounds somewhat hopeful. It'll be ok.

[janasmama]

Originally Posted by Baby_Cakes

Do you guys think that giving her bottles (we're using the medela breastmilk bottles and a Dr Browns bottle that is designed with a vent to reduce colic) is the wrong thing to do? Should we be using a dropper or syringe? The thing with Nora is she needs to suck. We even got her a Soothie just to save our sanity - and she really sucks the hell out of that thing. She was so used to being at the breast whenever she needed comfort that now she doesn't know what to do with herself, and she just cries and cries. I feel like a dropper or syringe wouldn't satisfy her urge to suck. Any advice?

Giving her a bottle isn't the wrong thing to do. There is no wrong or right way to do this...it just depends on what works for you and your family.

As far as a paci and sucking, you can also keep your pinky finger trimmed and let her suck on that. If it doesn't work then use the paci. My dd didn't mind the pinky, we used it when we were traveling in the car.

Carrie, pumping is very taxing. When my DS was 8 days old he was in the NICU for 11 days and I had to pump exclusively b/c he was fed through an NG tube. It is cold and tiring. I just made sure to look at him while I was doing it so I could remember why I was doing this and imagine that he was actually nursing (I have a pretty good imagination though

I'm glad to hear your DH is home with you right now and today's news seems promising.

Remember to think on the things that are good and don't be anxious about any of this. I'm praying for you and Nora.

[mamanurse]

Originally Posted by Baby_Cakes

I think honestly that is the most taxing part of all of this. I know it sounds selfish, but it is so incredibly emotionally and physically draining to be pumping every 2-3 hours, PLUS feeding her formula every 2-3 hours, PLUS still just trying to recover from the birth. If I didn't have my husband home with me, I don't think I could do it. There is just no way to pump, bottle feed, and console an incredibly cranky newborn by yourself.

How miserable to watch your nb have a venipuncture Some of those numbers are reassuring Carrie. Playing the waiting game sucks. I'll be thinking of you 3 while you wait.

Pumping is horrible. I know. I did it exclusively for 15 months. Luckily I had a lot of help and support to be able to do that. Especially in the early days when I was pumping for supply then trying to get her to breastfeed. I can't believe how overwhelming it felt to pump every 2-3 hours around the clock and take care of a newborn.

You're not being selfish at all Carrie. This isn't the nice, relaxing babymoon you and Chris imagined. It's okay to be disappointed, frustrated, or whatever else you're feeling. I hope your mood is treating you well these days. The baby blues coupled with the stress of this possible diagnosis would have sent me over the edge.

Originally Posted by janasmama

Giving her a bottle isn't the wrong thing to do. There is no wrong or right way to do this...it just depends on what works for you and your family.

[Baby_Cakes]

Originally Posted by janasmama

Giving her a bottle isn't the wrong thing to do. There is no wrong or right way to do this...it just depends on what works for you and your family.

Carrie, pumping is very taxing. When my DS was 8 days old he was in the NICU for 11 days and I had to pump exclusively b/c he was fed through an NG tube. It is cold and tiring. I just made sure to look at him while I was doing it so I could remember why I was doing this and imagine that he was actually nursing (I have a pretty good imagination though

Originally Posted by mamanurse

Pumping is horrible. I know. I did it exclusively for 15 months. Luckily I had a lot of help and support to be able to do that. Especially in the early days when I was pumping for supply then trying to get her to breastfeed. I can't believe how overwhelming it felt to pump every 2-3 hours around the clock and take care of a newborn.

You're not being selfish at all Carrie. This isn't the nice, relaxing babymoon you and Chris imagined. It's okay to be disappointed, frustrated, or whatever else you're feeling. I hope your mood is treating you well these days. The baby blues coupled with the stress of this possible diagnosis would have sent me over the edge.

Thank you both for saying all these things. It is nice to know that I'm not the first mama to feel so incredibly angry and callous towards pumping. I just wish I knew that the milk would definitely be for her, though. That's what makes it so difficult. All this work, all this pumping, waking up just to pump while Chris feeds her - and it might turn out that she can't have any of it anyway. It is definitely the world's suckiest situation, one that even in my wildest nightmares I never could have ever imagined.

I'm seriously taking it one pumping session at a time. It's just like I did with labor. Get through this one time, don't think about the next one. Ugh, so stressful.

Thanks again, everyone, for your kind words and thoughts. It is so helpful right now.

[mamanurse]

I had so much extra milk that I ended up doing a private donation to a woman in Florida. She was adopting a baby and wanted to do human milk. She sent me the boxes and paid for the dry ice and UPS picked it up at my house. It was a comfort that a baby was getting my milk even if mine wasn't. There's enough of a need that even if Nora doesn't get your milk, another baby could.

You're doing awesome at pumping Carrie. Don't forget to "cheat" at night and let yourself have one 4 hour spread of sleep. Maybe Chris could do one or two of the night feedings so all you have to do is pump.

[myrmom]

sounds like there might be some promising news in the future...I wish you had more answers now though, I know how hard the waiting game can be. You are doing amazing!!!