Need Support - Marker for Galactosemia...Update!!!! :-) - Page 3 - Mothering Forums
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October 2008 > Need Support - Marker for Galactosemia...Update!!!! :-)
Baby_Cakes's Avatar Baby_Cakes 03:42 PM 10-14-2008
Quote:
Originally Posted by mamanurse View Post
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.
Yes, I am looking into options for donating the milk either to a local mama who needs it or if milkshare or a milk bank will accept the milk I've already frozen. It seems like donating milk is more of an ongoing process rather than a way to "get rid of" extra milk. I believe I'll have more luck just finding someone who needs it either locally, or like what you did with the woman in FL. Don't worry, I'm doing all I can to make sure this milk gets to someone who needs it, even if it isn't Nora.

Oh yes, DH is doing the night feedings! Believe me! During the day we switch back and forth, but I am way too zonked to do both a bottle feed and a pump at 4 in the morning. Last night was a dream though - Nora slept for 5 HOURS straight. I got nervous at that point (it was 10 am!) and decided to take her to change her diaper and wake her up a bit so that she would eat. She then gulped down 3 oz! Huzzah! So she is doing really well.

Things are slowly coming into perspective for me. I think over the weekend I had my time to really grieve and I was able to get all my emotions out. Now it's all about doing what's best for her, no matter what.

It's definitely still tough at times, and I do still cry every now and then, but overall I do feel much better about the whole situation. I'm just glad I have all of you who really understand the stress that this is. You guys understand why stopping nursing is so much of a heartbreak. I really appreciate all the support and kind words!

Baby_Cakes's Avatar Baby_Cakes 10:11 PM 10-15-2008
I just thought I would share my good news. I contacted my local LLL and they do know someone who can use the milk! So in case Nora can't have it (which we are all still hoping she can) there is definitely someone who can and will take it all! I'm so happy it won't go to waste!

Tomorrow, following the advice of the LLL leader, I'm calling up the place that ordered the test and demanding a rush on it. Every day she is away from the breast is going to make it that much harder for her to resume bf'ing if she is indeed fine. I really don't think she has this condition. She was thriving on bm; yeah she had a little jaundice, but the LLL leader said that she has known babies with galactosemia and to her, it doesn't sound like Nora has it. So, not that she's an expert by any means, but it's reassuring to say the least, that others think that this test may be a false positive or that she's got the variant that would allow her to be bf'ed.
OrchideZ's Avatar OrchideZ 10:15 PM 10-15-2008
This is terrific news Carrie!:
Give a hug to lil Nora from me please.
ferretfan's Avatar ferretfan 10:22 PM 10-15-2008
i hope they can rush this all along for you and that you get some answers asap
ibusymomto5's Avatar ibusymomto5 10:46 PM 10-15-2008
Hopefully you won't need to donate the milk, but it's great that you found a source for it if needed. I was reading online about galactosemia that infants who truly have it usually show signs(look sick) when they come back to be retested and that false positives do happen. Even though Nora had jaundice it had started improving while she was totally bf, right? I would think that if she had the classic version that the jaundice wouldn't have gotten better without a change over to formula?? I don't know if that's right or not, but it seems like it could be. Anyway, I hope you can get the test results quickly and that it's good news. I know you must be on pins and needles wondering.

Here's the link where I read that about the false positives and retesting.
http://www.gentlebirth.org/archives/...l#Galactosemia
Baby_Cakes's Avatar Baby_Cakes 10:55 PM 10-15-2008
^Yep. Her jaundice completely cleared up on its own totally on breast milk. And it wasn't bad enough that she needed bili lights. That, combined with the fact that she had no vomiting or diarrhea, and gained 8 oz on bm leads me to believe she doesn't have this condition. In fact, everything I read says that if the baby isn't showing any signs or symptoms, continue breastfeeding and if symptoms occur, stop bfing. I said this to both the pediatrician and the people at the genetics lab, and they both said that they couldn't recommend doing that and if we did do that then it would be our responsibility if anything were to go down hill. Thanks for the support, docs. Ykwim?
carolina~mom2be's Avatar carolina~mom2be 11:00 PM 10-15-2008
oh carrie, i pray that she doesn't have it!!! It sounds to me like she is totally fine!!! Did you call and tell them to rush the results? I'm getting excited to hear the results...I just know in my heart that she is fine
ibusymomto5's Avatar ibusymomto5 11:09 PM 10-15-2008
Quote:
Originally Posted by Baby_Cakes View Post
^Yep. Her jaundice completely cleared up on its own totally on breast milk. And it wasn't bad enough that she needed bili lights. That, combined with the fact that she had no vomiting or diarrhea, and gained 8 oz on bm leads me to believe she doesn't have this condition. In fact, everything I read says that if the baby isn't showing any signs or symptoms, continue breastfeeding and if symptoms occur, stop bfing. I said this to both the pediatrician and the people at the genetics lab, and they both said that they couldn't recommend doing that and if we did do that then it would be our responsibility if anything were to go down hill. Thanks for the support, docs. Ykwim?

It sure sounds promising that she doesn't have it based on all that. I guess the docs say that to cover themselves, like what that article says. Frustrating, but then again I guess it's better to be safe than sorry too. I hope you can find out very soon! I'm keeping my fingers crossed here!
crosscat's Avatar crosscat 11:49 PM 10-15-2008
I so hope she doesn't have it! I've got my fingers and toes crossed for Nora. It really does sound promising.
lovemysunshine's Avatar lovemysunshine 01:04 PM 10-16-2008
Still thinking of you guys and hoping for good news soon!
farmerjess's Avatar farmerjess 01:12 PM 10-16-2008
Sounds like good news is coming Carrie! I wish your docs were more supportive.
celesterra's Avatar celesterra 02:16 AM 10-17-2008
Quote:
Originally Posted by Baby_Cakes View Post
Before, I could console her by nursing, and now she just screams and screams, rooting, sucking her fist, even after the bottle. It's absolute torture.
oh Carrie, I'm so saddened to read your posts here... when i read the above, i thought maybe you could use a lact-aid tube to let her suckle your pinkie when she wants the comfort of flesh. i didn't finish reading beyond this post, so someone may have suggested sth even better.

my boys are still being supplemented w/formula... it's really hard, i know.
nccrunchymama's Avatar nccrunchymama 10:21 PM 10-18-2008
Oh, Carrie. I'm so sorry you're going through this. I'll definitely keep you and your family in my prayers. And I really hope your LLL leader is right. No matter what, just remember, you are doing everything you can to provide what your child needs even though it's not what you want. That's what mothers do. You're doing a great job!!
Baby_Cakes's Avatar Baby_Cakes 11:45 PM 10-18-2008
Thanks, guys. I'm dealing with the whole formula thing. If she is indeed classic galactosemic, I'll be very happy we did what we did. I swear, though, if it comes back and she is absolutely fine or has duarte's, I'll feel really mislead by the doctors and their lack of knowledge and pissed by their lack of support about breastfeeding.

We don't know exactly when we'll find out the results. Her test was done last Monday and they said "a week, maybe less" for when when we would find out. Well, "less" has gone by, so I'm hoping we find out Monday. At this point I just want to know either way. I need to know if I can either stop pumping or stop the formula. I cannot keep doing both. I know it isn't the "recommended" thing to do, but today I just couldn't pump as often as I did the whole week. It is exhausting - especially when none of it is going to her. I think I'm only going to get 7 sessions today, as opposed to 8-10.

I think I've mastered pumping hands free on one side at a time so that I can hold Nora on the other side and/or feed her while I'm pumping. Not the ideal set up, but Chris has to go into work on Monday and Tuesday (for orientations at his new job which starts next week) and I'm going to be by myself. I need to be able to scoop her up even if I'm pumping and it's overwhelming! But I think/hope I'll be okay.

Oooh, I just hope she doesn't have this. I really, really want to continue breastfeeding. Keep thinking of us, everyone! The positive thoughts are helping, I know it!
meadowmoose's Avatar meadowmoose 12:28 AM 10-19-2008
Good luck on the test results. I'm thinking of you guys.
Baby_Cakes's Avatar Baby_Cakes 02:36 PM 10-21-2008
I am so pissed I really can't even put it in words.

Got a call today, expecting good news - or at least something. The lab "did the wrong test." I gave that woman a huge piece of my mind. I haven't used the F word so many times in one conversation ever in my life.

I have to bring Nora in for another blood draw.

I demanded the results be ready by tomorrow, even if I have to drive the blood there myself.

I can't even believe this. I'm seriously about to give up the pumping. Talk me down guys, i need help.

I swear.
JBaxter's Avatar JBaxter 02:41 PM 10-21-2008
That is just so wrong. Something SO IMPORTANT and they screw up. Im sorry for baby Nora to have to go through ANOTHER blood draw
kristenburgess's Avatar kristenburgess 03:00 PM 10-21-2008
I would be so upset too!! You have every right to be upset and demand some results ASAP! I would absolutely demand the results tomorrow and if they tell you they can't do that I would demand referral to a practitioner/lab that can get you the results.

You should also file a complaint with your insurance. You may also want to find out if your ins company has a patient representative who can possibly help you get something faster.

I do think you should keep pumping - it's hard and really frustrating, especially when you just want to know if your sweet baby can have your milk. But keep it up because it helps keep your supply going - if you find Nora can nurse and you need to rebuild your supply even more you can give that pumped milk through a supplemental nursing system. Or keep it in the freezer. If you find you don't need it (because Nora doesn't or the test is in fact positive) then you know there is another babe out there who can greatly benefit from the milk.

Motherhood is so challenging - you must learn to be selfless and deal with so many hard situations - and you have to learn to be "mama bear" and stand up, even fight for your child.

I'm thinking of you guys.
birthdancedoula's Avatar birthdancedoula 03:03 PM 10-21-2008
OMG Carrie...wtf is wrong with people?!? I am so sorry you and Nora are having to deal with this. Good for you for being a mama bear for her, and demanding the test results tomorrow. I hate that sweet Nora has to have to have her blood drawn again but I hope that the lab gets things right this time around and you get her results asap.

again, mama. You are doing the absolute right thing for your babe. You are certainly my hero for pumping through all of this, as I know its far from easy. Nora is such a lucky little one to have a mama like you.
TaraRae82's Avatar TaraRae82 05:01 PM 10-21-2008
omg. i'd be livid too! poor little nora! s and love for both you and her. my thoughts and prayers continue to be with you.
Baby_Cakes's Avatar Baby_Cakes 05:07 PM 10-21-2008
Thanks for the support, everyone. I just got back from the hospital with Nora. I still can't believe how I went off on the genetics counselor. But, it seems to have paid off. They are overnighting her blood to the lab and the lab is running a batch in the am. Results will be ready tomorrow (barring any more complications) and hopefully they can be given verbally to the genetics counselor, otherwise it will be faxed to her.

They are also running the DNA test now, b/c of this mess. At least if something goes wrong again they already have her blood and the DNA test will have been started.

They had to stick her twice b/c they just weren't getting enough in the vials. Ugh, it was terrible watching and hearing her scream. Poor little thing just turned the brightest shade of red. Never ever heard her cry like that.

I'm just in a bad place. I don't feel like a hero for pumping, though I do appreciate hearing that. I feel like I can't provide for my daughter. I got maybe a half hour of actual sleep last night b/c she just would not stop crying. DH had to go to work at 7:30 am, so he took her for about 10 minutes this morning before he had to leave so I could finally pump something. I hadn't been able to pump at all from like 12 midnight till after 6 am. The hormones seriously get to you when you are so full of milk and you can't just feed your baby.


She and I did manage to both nap from about 8-10, but since then it's been nonstop either screaming and/or crying. I haven't been able to put her down all day. I don't know what she needs. I can't comfort her. I feel pointless, like she would be better off without me. I can't do anything for her that someone else can't do.

I did let the genetics counselor give my number to their therapist/social worker. I know these thoughts aren't good. It is just so difficult to feel like I'm necessary at all.
coyotemist's Avatar coyotemist 05:18 PM 10-21-2008
Even if you never nurse again, your baby will always know you are mom. They know by smell, they know your sound. She spent 9 or so months in your belly hearing your voice, smelling your smell, and being with you and part of you. No matter how you feed her, that will never change.

You are not useless or worthless in her eyes. She just has never had anyone hurt her before, and she's upset because of that, and she's upset because she knows you are upset. She may not have verbal language yet, but she understands a lot. Try to calm her and calm yourself, and explain to her the best you can that you are sorry it hurt, and sorry for the stress, it is all to do the best thing for her.

She'll understand, it's weird, but she will.

to you. Glad you let the genetics counselor give your name to the social worker, you need all the support you can get right now. See if there is anything like the Baby blues connection in your city.

http://www.babybluesconnection.org/

They help a lot, they helped me when my daughter wouldn't stop screaming for the first 3 months of her life. I'll never forget that helpless feeling.



Cari-sneaking over from November.
TaraRae82's Avatar TaraRae82 05:20 PM 10-21-2008
carrie, you are always in my thouhgts and i'm glad to hear your info is being given to a therapist. i think someone like that could really benefit you and nora. please try to remember why you're pumping......for nora, in the event her results are positive. you can do something for her that no one else can....you can be her mom.....we all want our mommy when things aren't right. nothing can replace that bond of love! even if it doesn't seem like it's helping, it is!
Amber Lion's Avatar Amber Lion 06:13 PM 10-21-2008
Way to be the Momma Bear and get some action, sorry you were put in the situation of having to do that though.

Carrie! I'm thinking of you all the time!
Baby_Cakes's Avatar Baby_Cakes 08:55 PM 10-21-2008
Thanks, everyone. Chris got home just a short while ago from work and said that this whole situation totally sucks, and he knows I went through hell today. He did say, however, that based on the outcome, he also knows that I totally kicked ass and he is so proud of me. :

He is watching Nora now while I sit in solitude in the bathroom, finally pumping myself dry (I didn't get a really good session in at all today, yeowch), I finally went to the bathroom, I'm finally going to brush my teeth and...wait for it...I'm finally going to take a shower!

Please pray (if you do that sort of thing) that these f-wads at the lab don't do the wrong test again and that they have enough blood to do what they need to do, and that we'll have results tomorrow. I don't want to wait for DNA results. I won't be surprised if I have to wait at this point, but I do not want to have to wait.
Qestia's Avatar Qestia 11:30 PM 10-21-2008
will be praying, i'd be so upset about their screwup. hang in there... i'm sorry you're being put thru the ringer. hope it gets resolved soon--
Baby_Cakes's Avatar Baby_Cakes 07:39 PM 10-22-2008
Guess who's daughter is officially back on breast milk?

:::::

I just got off the phone with the hospital - Nora's levels are NORMAL! Her GALT level (enzyme level) is 21. Anything equal to or above 18.5 is considered normal, so little Miss Nora can go back to being exclusively breastfed!

I'm still a little shaky after getting this fabulous news! She is sleeping on Daddy right now, but when she wakes up I'm going to try to get her right back on the breast. I'm mentally preparing myself for a rough night of reintroducing the breast, but it will be so worth it.

They are still going to run her DNA to find out if she is a carrier. If she is a carrier, she can still have bm, it would just be good information to have. This still could have been a 100% complete and utter false positive, but I don't care - my little girl is going back on breast milk!!!

::

I am overjoyed and so thankful you guys were here for me the whole time. I could not have made it through without you all cheering me on.
birthdancedoula's Avatar birthdancedoula 07:44 PM 10-22-2008
Woo hoo!! So stinkin' happy for you and Miss Nora!!: Shedding many happy tears now for you both!!

Now go nurse that babe!!:
CrunchyDoula's Avatar CrunchyDoula 07:44 PM 10-22-2008
::: Woohoo!!! I am so glad that you are able to get her back on the breast!! I know just how important this was to you! And look at you strong mama, you did what you had to do and did what was best for her and it all worked out!! I'm sending you tons of easy BFing vibes!!!
Viola's Avatar Viola 07:45 PM 10-22-2008
Wow, good news! Congratulations!!!
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