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CarolinaGirl2014
member
Today really sucks (vent)- updated at bottom
CarolinaGirl2014
member
As a reminder, my daughter tested for a metabolic disorder called carnitine uptake deficiency in her newborn screening. We both got tested because false positives sometimes happen for newborns if their mother has an undiagnosed milder version of the disease. I've been praying that I have it as true false positves are rare, but I got my results today and they are normal. We won't have A's results until Friday. I hate not knowing, and I hate the guilt that if she does have it I gave it to her from my bad genes. I know it's treatable so my friends seem to think I shouldn't worry, but I know you all understand how stressful and painful it is to think that anything is wrong with your child. It can cause organ failure, heart enlargement, muscle weakness, swelling of the brain, seizures, and permanent brain damage. I've decided to not tell A's mom that my results are in because we were clinging to the hope that I caused A's false positive and I don't think she needs the extra stress when there's nothing she can do until she gets the results.
Also, I've been clinging to the plan of going back to school to get my BSN. I got things lined up with the school only to get denied for a loan for the final $4k I need to finish my pre-req's. I have no one to cosign and don't know of another way to come up with the money, so it looks like I'm stuck being a nanny and unable to pursue my dreams.
And I might not get my visit Saturday b/c A's grandma who is helping them now fell and twisted her ankle. I hate that she's hurt and that that A's mom is having a hard time due to it, and that the visit doesn't get to happen. I was so looking forward to their visit and my fam seeing A for the first time since she was born. I miss her something fierce.
Lastly, my period decided to start just shy of 6 weeks after giving birth even though I'm still pumping around the clock like a mad woman. Not a big deal, but I can't help but say "SERIOUSLY?!" when it's in the same 24 hour stretch as everything else.
Sorry for the long, bratty, selfish whine but I just needed to get it out. Hugs to you all for reading it all!
Birthmom to A, 1/8- the most beautiful thing I've ever seen.
This discussion has been closed.
Re: Today really sucks (vent)- updated at bottom
After 1 IUI, 3 IVF's with CGH/CCS testing, 10 early miscarriages, and lots of tears and frustration, we are moving on to Domestic Infant Adoption! We are so excited to see what the future holds.
As a scientist who worked with metabolic disorders, I want to put your mind at ease about the carnitine uptake deficiency. Depending on your test, if you don't have it, she doesn't have it. If it was a metabolic workup, you could be a carrier, but if it was a genetic workup, if you don't have the mutation she doesn't have it either. And even if she does, she had to get the mutation from both parents, and it's not something you can control. Remember that, always.
I'm sorry to hear about the rest of your bad news. It's overwhelming sometimes when it all hits at once. I hope you get better news very, very soon.
Regarding school- --- are you at a public or private school? If you're at a public one---go talk to financial aid---see if there is anything they can do--heck even if you are at a private one do that---my partner in her last year of undergrad lost a huge chunk of tuition because her dad had a horrible accident. The school had an emergency fund and was able to give her a grant.
I know stuff like that seems like an unbelievable amount of work--- but...it might be worth a shot. Don't give up on a dream---especially regarding your education.
much love.
TTC # 1 Since October 2010 (Not preventing since 2009)
November 2013: Applied & Accepted by the Agency
January 2014: Home Study, education class, Profiles
February 2014: "Officially Waiting"
I am sorry to hear you are struggling.
I have been thinking about you a lot.
so sorry the lab lost the results - how frustrating!
Keeping you and your dauther in my thoughts and prayers
I just did a quick google search since it's been a while. If your levels are normal, there's an outside chance you are a carrier, but A's birthfather would have to be a carrier as well in order for A to have it. So the chances are pretty low
I'm not sure how high the false positive rate is for the newborn screening. Hopefully A falls into that category and this will all be a distant memory soon. That sucks that they lost her sample--so frustrating. I'll be thinking of you. Please keep us posted.
You do not have to give up on your dream. It will happen somehow even if the path looks different. I am thinking of you so much and hope you get some GOOD exciting news very soon, as you are now overdue. And, also, a visit w your sweet daughter soon!!
After 1 IUI, 3 IVF's with CGH/CCS testing, 10 early miscarriages, and lots of tears and frustration, we are moving on to Domestic Infant Adoption! We are so excited to see what the future holds.