Need Support - Marker for Galactosemia...Update!!!! :-) - Mothering Forums
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#1 of 123 Old 10-10-2008, 06:48 PM - Thread Starter
 
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Mamas, I really need your support. My heart is breaking as I type this. Nora's metabolic screen came back with markers for galactosemia, and we have to give her soy formula until we get a confirmed diagnosis. We are going first thing Monday (8:30 am) to the genetics department at the hospital for the test.

I cannot stop crying.

I am heartbroken that I cannot breastfeed her. I am, of course, going to do what I need to do to make sure she is healthy, but I feel like the bottle that DH is giving her right now is toxic and I'm so upset that her gut is getting formula. I spent my whole pregnancy reading about all the horrors of formula, and yet I just had to pour my daughter a bottle of it and have my husband give it to her. I feel like a complete failure. Not only that, but if the test does come back negative (which I am still hoping for, and it is still possible though not probable), I'm worried about latch issues - I'm going to have to express and bottle feed her so much earlier than I wanted to. I guess that's not the worst of it, I guess I just feel like part of her has been taken away from me.

I am so angry. Not at Nora, not at anyone, just at the situation.

I just need you guys to rally around me right now. I love you guys and I need the support. Please tell me that I'm not horrible for giving her formula. Please tell me it's not as bad as I think it is right now.

Carrie SAHM to Nora Caitlyn (5) and Finnley Dax (2) homebirthing, breastfeeding, babywearing, intactivist, doula mama!         
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#2 of 123 Old 10-10-2008, 06:54 PM
 
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I am not in your DDC but I just had to respond.

If your DD has the Duarte variant of galactosemia, rather than classic galactosemia, they can find out how much of the lactose she is able to digest. With the Duarte variant mothers CAN usually breastfeed. So all hope for that is not lost.

Second of all, if it does turn out that your DD has classic galactosemia, then the most important thing to remember is that there are NO risks to formula feeding her. In that case, it's what is best for her, no question about it.

You are doing what is right. This is from one of the biggest pro-breastfeeding women on the planet.

I hope you get good news from the testing.
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#3 of 123 Old 10-10-2008, 07:12 PM
 
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Awww Carrie I am so so sorry.
I had no idea what galactosemia is so I just looked it up.
Did you or your DH know it ran in your family?
If not, I can't help but to think how lucky you are they caught it.
From what I read, it looks like early detection can prevent damage and the formula will save her life.
I am thinking about you and Nora and sending lots of love your way.

Happily married with two tots (babyboy.gif J 10/18/08) & (babygirl.gif T 5/03/10) 

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#4 of 123 Old 10-10-2008, 07:17 PM
 
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you are absolutely doing the right thing.
you are a wonderful mother.
you did nothing wrong.
this too shall pass.
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#5 of 123 Old 10-10-2008, 07:19 PM
 
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Oh, Carrie... First of all, Secondly, you are NOT a failure! Do not beat yourself up about this. You had no way of knowing and you are doing what is best for Nora right now. She will not suffer for it. Be gentle with yourself and do whatever you can to make this a bonding time for you and your DD. Skin-to-skin bottle feeding if need be. WHATEVER works for you. Just do not blame yourself for this.

Believe me, I have been in your shoes. I could not BF DS at all, because of a medication I needed to take. Bottle feeding was so difficult for me at first, especially with him in the NICU and all the glares I got from the LCs. But you know what? He thrived. We had no issues with bonding. He gained weight well. His immune system, early as he was, rebounded just fine. He's now 5, completely off the growth charts, and he amazes me how smart he is. All the things I worried about, the things I'd thought would be affected because I didn't BF him, none really came to fruition.

You can do this and you will get through it. I hope that further testing gives you more answers and that perhaps you'll be able to resume BFing. But all is not lost. You have a beautiful baby girl, and BF'd or FF'd, you're giving her your best.
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#6 of 123 Old 10-10-2008, 07:24 PM
 
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I am so sorry! But there is a reason there is such a thing as formula, for those babies who truly need it. I know it's tough and heartbreaking, I supplemented ds with formula for the first 8 wks of his life (was necessary for me at the time, but I felt so guilty and terrible with every bottle, I cried so much about it), there was a short time where he was hardly breastfed, and my supply came back just fine, so please don't worry about that. I hope that she doesn't have it so that you can continue to breastfeed. If not, remember it's not something anyone could have helped and when she's walking across the stage accepting her diploma in 18 years not she or anyone else is going to care how she was fed as an infant. Being healthy is all that matters!

Megan, momma to Colin and Ainsley
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#7 of 123 Old 10-10-2008, 07:32 PM - Thread Starter
 
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Oh gosh, thank you all so much. Just hearing it from you guys means the world to me right now. I so hope she is okay. I need to pull myself together. I'm completely falling apart. I know I'm doing what is right for her, but still I feel like the rug was pulled out from under me. So many things are running through my mind, everything is flipped upside down. I'm just still in shock I think. I just hope she knows I love her and I'm not taking anything away from her for anything she did wrong.

Carrie SAHM to Nora Caitlyn (5) and Finnley Dax (2) homebirthing, breastfeeding, babywearing, intactivist, doula mama!         
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#8 of 123 Old 10-10-2008, 07:36 PM
 
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Not in your DDC, but you are so not a faliure for not nursing her, and you aren't harming her! You are protecting her from harm, and that is what mothers do! You are a great mom to a beautiful little girl, that just happens to have special needs when it comes to feeding. Snuggle her up to your bare chest while you bottle feed her, give her comfort! You are doing everything you can for her.

Kristin- Wife to J, Mommy to B (11), M-S (8), and little J (4) and J&J (7 months)
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#9 of 123 Old 10-10-2008, 07:49 PM
 
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Tons and tons of Carrie!!!! I'm so sorry you're having to deal with this and that you have to wait the weekend for some resolution.

It can be so hard when we find out that what we thought was the right thing, isn't anymore. If Nora does have this, then this is EXACTLY what formula was meant to be for. You aren't doing anything wrong, you are being the best Momma you can be! Snuggle her up and tell her how much you love her and how you feel and why you're doing what you are; she's listening and she knows!

again

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#10 of 123 Old 10-10-2008, 07:54 PM
 
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HUGS, you are doing what is best for little Nora. don't worry about anything else.
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#11 of 123 Old 10-10-2008, 08:00 PM
 
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I echo all the other mamas - you are doing the absolute best thing for your precious daughter - I'll be thinking of you, your DH and Nora on Monday morning. I hope that she doesn't have it, and at the least has the less severe version. Hold her close and please don't beat yourself up about it. It is nothing you did wrong and you are doing everything right for her right now! HUGS TO YOU.

Mother to L.O. born at home 10.17.08 EDD for #2 4.21.2011
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#12 of 123 Old 10-10-2008, 08:17 PM
 
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Carrie. That must be so hard. If the results come back and you can't breastfeed her, think of what a blessing that is to know. And (crossing fingers) if you can breastfeed her I am sure that a lactation consultant can help you get her back on the breast. You are an awesome Mama.

Jessi wife of mama to Lil D (10/08)
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#13 of 123 Old 10-10-2008, 08:27 PM
 
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I echo the sentiments of all the wise mamas who've already posted here. And I wanted you to know that you and little Nora are in my thoughts.
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#14 of 123 Old 10-10-2008, 08:27 PM
 
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So sorry you're hurting right now. I know I'd be feeling the same way, but I can tell by reading your posts that you are far from a failure. You are a strong and caring mother who wants to do the very best for your sweet girl. You aren't giving her formula as an easy way out. You're giving it because it's what's truly best for her. I bottle fed my first, and I can honestly say it was a pleasant experience and really there are some advantages too. My bottlefed dd, who is now almost 18, was and is perfectly healthy and smart. Just remember you're doing what is best for your lo, and that is what really matters.

Happily married, busy mom to a houseful :-)

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#15 of 123 Old 10-10-2008, 08:28 PM - Thread Starter
 
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I think I just spent a lot of energy hating on formula feeders, and now I have to be one. I know that sounds horrible, but even though we do have a very valid reason to ff, I still feel like bf'ing moms are going to judge me when they see me giving her formula. Isn't that horrible? I'm making this about me. I hate that I'm being selfish.

Monday we go for the confirmation test but it takes 7-10 days for the results to come in. So we have to ff for at least that long, and if it's positive forever.

I just ordered a ton of nursing tops that I may have to return.

I bought a $400 breast pump, which is fabulous right now b/c I'm able to keep my supply up just in case this turns out to be a false positive, but then what?

She doesn't smell like herself anymore. She smells like formula. I just have to keep reminding myself she still the same baby girl. I'm confused about my role now. 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.

Carrie SAHM to Nora Caitlyn (5) and Finnley Dax (2) homebirthing, breastfeeding, babywearing, intactivist, doula mama!         
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#16 of 123 Old 10-10-2008, 08:48 PM
 
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first off I just want to give you great big hugs...I can't even imagine how hard this is for you. Last november I had a friend go through the same thing with her little guy, and luckily it turned out for them to be a fasle positive marker...so there is still hope that she will be able to nurse when they get the results back....markers are only that, they don't mean she has it for sure.

If she doesn't I will keep you both in my thoughts and prayers that she is able to relatch....

If she does then remember you are doing what is best for her...we as parents have to make difficult choices, decisions and sometimes we have to stand back and let those decisions and choices be made for us...but in the end we do what is best for our child. You are loving and protecting her from harm and you are an amazing women for doing so.
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#17 of 123 Old 10-10-2008, 08:54 PM
 
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Carrie, it IS hard, but try to cross each bridge as it comes up. Don't think about the test results just yet. TRY to remain calm when you FF Nora, she'll pick up on your anxiety. See if maybe a pacifier will help with the soothing. Not all babies use them forever - DS only used a pacifier for MAYBE two or three months.

*sigh* As far as the disapproving looks from unknowing BFing moms, I'm not going to tell you that won't happen or that it'll be easy to brush off. It's hard, especially when you've done the research and you know the benefits of BFing, but you just CAN'T do it. This isn't a choice YOU made. The alternative would be worse. There will always be judgemental people out there who don't know you and don't know your circumstances. Don't let them bring you down.

You are an amazing mother and you are giving your daughter the best possible start to life. Don't forget that part.
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#18 of 123 Old 10-10-2008, 08:59 PM
 
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#19 of 123 Old 10-10-2008, 09:59 PM
 
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Awwww Carrie. I'm sitting in the recliner with tears in my eyes for you. Losing (or pausing hopefully in your case) a nursing relationship is heartbreaking. I can't even fathom what you're feeling right now with being so recently postpartum and having your child diagnosed preliminarily with a metabolic disorder.

Dd and I never established breastfeeding d/t multiple issues. Instead I pumped for her for 15 months and she never got a drop of formula. That didn't stop me from feeling guilty though. We never had that mommy to baby gaze only nurslings get. I also got to "suffer through" the stares (which I was probably conceiving all on my own) from other moms as I gave my LO a bottle. I was incredibly insecure about bottle feeding my baby and I'm sure you're going to be to even though there isn't a DAMN THING you can do about it.

You're ff sweet Nora in her best interest. There's no need to feel guilty or embarassed about it. Continuing to bf her would be selfish. Not the feelings of loss your experiencing. It's okay to be angry and upset. You've been dealt a crappy lot and I'm not going to say you should be positive and happy there's an alternative. It sucks.

I'm hoping you get a false-positive result after that long wait.: Little Nora isn't any less sweet to me for getting formula and nobody else in her life is going to think so either.
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#20 of 123 Old 10-10-2008, 10:36 PM
 
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big hugs Carrie. You're doing everything that you can for your sweet baby girl. I'm praying that the test comes back negative and you can stop worrying about the future. We'll all pray for that right now. She is the same sweet little girl that you birthed....formula or not. It doesn't make you any less of a mother and no one is going to judge you!!! You're awesome!!!!!

Lee Ann ~ SAHM to Carolina(4)uc.jpg, Aurora (2)uc.jpg, and belly.gifwith #3 - due in December!
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#21 of 123 Old 10-10-2008, 10:49 PM
 
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My heart is breaking for you Carrie. I cannot imagine how I would feel if I were in your shoes. But you are a wonderful mama and will do what is best for your baby girl. I hope you receive good news with the blood draw.
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#22 of 123 Old 10-10-2008, 10:55 PM
 
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OH, Carrie, you are doing what's best for that darling girl. I can only imagine what you're going through but you're definitely doing the best a mother can.

Me: married to my :fireman Mama to my littles: Toby 8/04 and Elina 10/08
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#23 of 123 Old 10-10-2008, 11:39 PM
 
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You are absolutely doing the right thing for your daugther. Try to keep your chin up, hon.
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#24 of 123 Old 10-11-2008, 12:55 AM
 
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I just had to tell you something. My ds1 is 2 and he is still breastfed... BUT when he gets hurt or is feeling unloved for some reason (like I snapped at him for hitting the cat on the head with a tape measure) he says to me, "Burp me, Mama. Burp me, feel better" It melts my heart of course. He sometimes asks for a boobie, but more often then not he just wants me to hold him close and nuzzle him so he can rest his head on my shoulder.

Being a mother isn't just about how you feed your child.... its how you hold them, how you whisper in their ears, how they feel so secure in your arms. No one can take that away from you. You are the only one that can provide THAT kind of love for Nora and no one can take that away.

I do hope the test comes back as a false positive, but if it doesn't just remember what I said.
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#25 of 123 Old 10-11-2008, 01:46 AM
 
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mama. I am so sorry you're having to go through this; i know I would not be handling it well if it were me in your position. Keep pumping and we will hope and pray it turns out to be negative. Please keep us updated and I hope all goes well with the testing.
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#26 of 123 Old 10-11-2008, 02:29 AM
 
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Quote:
Originally Posted by NotTheOnlyOne View Post
Being a mother isn't just about how you feed your child.... its how you hold them, how you whisper in their ears, how they feel so secure in your arms. No one can take that away from you. You are the only one that can provide THAT kind of love for Nora and no one can take that away.
This. Make this your mantra.




Your family is in my thoughts, mama.
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#27 of 123 Old 10-11-2008, 06:00 AM
 
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I have nothing to add to the wonderful words of the wise women here - just wanted to send you and your family prayers and hugs.

You are a wonderful mother and you are doing the best for your child.

Jill &heartbeat.gif the keepers of my heartheartbeat.gif : Dave, Ben (9/2002), Lucy (9/2004), (m/c 9/2007) Emma (born still on her due date and forever missed 10/2008) and Tobias (1/2010)grouphug.gif
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#28 of 123 Old 10-11-2008, 09:04 AM - Thread Starter
 
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Thank you all so, so, so much. I cannot even begin to tell you how incredible it is to have the support from all of you. I'm trying so hard to feel like a good mama, and last night I did feed Nora skin to skin. I just couldn't help but sob through the whole thing, but I made sure I told her I wasn't angry or sad at her. I told her I would never do this to her if I didn't absolutely have to. I told her it wasn't because I didn't love her, that it was because I love her so incredibly much that I had to do this.

Chris keeps telling me not to worry about her emotional state, that she's too young to realize what is going on and millions of babies are switched to formula for whatever reason. I just keep thinking, yeah, but that's b/c their Mommies want them to be switched.

It is so hard to grieve and mourn the loss of our nursing relationship. I told her it had been the most wonderful 8 days of my entire life. I am so glad I had those 8 days to know her the way I did.

I am really scared that I'm not going to come out of this depression. I hope with time it goes away. Pumping is so cold and removed, and honestly, it feels like it's for nothing because if she does test positive, the milk is going to go to waste. I'm not even sure I'm going to continue saving it after every session, b/c as hard as it is to pour it down the drain, it's going to be even harder to toss it once the diagnosis is in.

Can I just say the hardest part is that my little girl is so not who she was even just a day ago? She used to nurse, then sleep for 2-3 hours, wake up with a smile, and be ready to nurse again. Now, she screams. All the time. She won't sleep unless you're holding her. She turns the brightest color red imaginable and will not stop screaming. Chris slept with her on his chest on the recliner all night long. We are hoping it isn't colic from this stupid junk formula; it's so incredibly maddening at this point. I want my happy, precious little girl back.

Carrie SAHM to Nora Caitlyn (5) and Finnley Dax (2) homebirthing, breastfeeding, babywearing, intactivist, doula mama!         
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#29 of 123 Old 10-11-2008, 09:49 AM
 
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Oh, Carrie, I'm so sorry you and Nora have to go through this. I know it's so difficult to see her screaming and upset, but just keep telling yourself that you really are doing what is BEST for her in every capacity. You are a great mother, no matter how your LO gets her nutrition! I love what NotTheOnlyOne said about being a mother--it's so true! You know we're keeping our fingers crossed that the next test comes back negative, but also know that you have our unconditional support if it doesn't and you have to FF.
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#30 of 123 Old 10-11-2008, 11:06 AM
 
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Oh no! Poor baby! It's not your fault at all! That is why they make formula-some babies NEED it. Lots of hugs!

Mama to a wild thing (10/08) and a new thing (8/5/10) and wife to the love of my
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