Sunday, September 6, 2009
No PKU here
Bambina does not have it. Thanks for all your good thoughts and support. Huge sigh of relief and gratitude. Will be making a donation to the national PKU foundation.
Monday, August 31, 2009
Ride my Roller Coaster
On the same day we found out about Bambina's potential gene disorder I got some really awesome news. Obviously, it has taken second seat but it's still nice.
Now, I could be compromising my anonymity by telling you the award but what the hell. (OK, I really suck at maintaining it with the picture posting, real name slips etc).
I have been selected as one of "Native American 40 Under 40". The recipients are "outstanding young Native Americans who have shown excellence in community and/or profession.... who are already playing a significant role in shaping Indian Country for the future."
This is the first year of the award. Embarrassingly I nominated myself. I wrote the nomination letter and had a friend "nominate" me so it didn't look so bad. Not in a million years did I think I'd be selected. This award seems so geared towards reservation-living Indians and those who work in Indian communities. I do neither.
The awards ceremony is in Tulsa. I am thinking of flying out there for the night. It would be hard to manage with the toddler and newborn plus I have a huge presentation at work that morning (Yes, I have to prepare it and present it on my maternity leave) but I really want to go. I'd also have to be able to fit into a formal dress by then. I really don't want to buy anything new when I have many beautiful dresses in my closet.
Now, I could be compromising my anonymity by telling you the award but what the hell. (OK, I really suck at maintaining it with the picture posting, real name slips etc).
I have been selected as one of "Native American 40 Under 40". The recipients are "outstanding young Native Americans who have shown excellence in community and/or profession.... who are already playing a significant role in shaping Indian Country for the future."
This is the first year of the award. Embarrassingly I nominated myself. I wrote the nomination letter and had a friend "nominate" me so it didn't look so bad. Not in a million years did I think I'd be selected. This award seems so geared towards reservation-living Indians and those who work in Indian communities. I do neither.
The awards ceremony is in Tulsa. I am thinking of flying out there for the night. It would be hard to manage with the toddler and newborn plus I have a huge presentation at work that morning (Yes, I have to prepare it and present it on my maternity leave) but I really want to go. I'd also have to be able to fit into a formal dress by then. I really don't want to buy anything new when I have many beautiful dresses in my closet.
Sunday, August 30, 2009
No news yet
No news yet on the 2nd blood test.
Thanks for all your kind words, thoughts and prayers. I can't tell you how much it means to me.
To address a few comments:
areyoukiddingme: Yes, I would let the clinic know. Anyone using this donor should know that this information. It's only an issues if the sperm donor is also a carrier.
amasingk8: I read the false positive rate was high but I didn't know how high.
Ophelia: Thankfully our insurance will cover formula/food/ and other interventions. We are so lucky. Not to get all political but everyone should have health care. It's a human right. Medicaid for all.
Danaly: Thank you! It's helpful to hear of stories where people lead relatively normal lives. To actually know someone who is managing this would be helpful.
Em: Thanks so much. Yes, the medical sites freak me out. The ones that are more family/lifestyle based are much more helpful. My main concerns have been if she could have normal intelligence and is she'd have behavioral problems. I think it has something to do with the severity of the condition and how well you monitor/stay on the diet. Thank you so much for reaching out to a perfect stranger. I can't tell you how much it means to me that you did and that you can manage it well.
_______________________________________________________________________
Other thoughts/concerns: More kids and Embryo Donation
I have wanted a 3rd child. Mr. Peeveme says we are done. That was not a fight I was going to fight right now but one I was not going to loose. We have 7 embys just waiting. We have had to work so hard to have our children....this one would be an easy FET. How could we not? But they all have a chance of having PKU....kind-of puts a kink into those plans. Also, while Mr. Peeveme and I have not decided what to do with the leftover embys...it would also put a kink in those potential plans as well.
Does PGD test for PKU?
Thanks for all your kind words, thoughts and prayers. I can't tell you how much it means to me.
To address a few comments:
areyoukiddingme: Yes, I would let the clinic know. Anyone using this donor should know that this information. It's only an issues if the sperm donor is also a carrier.
amasingk8: I read the false positive rate was high but I didn't know how high.
Ophelia: Thankfully our insurance will cover formula/food/ and other interventions. We are so lucky. Not to get all political but everyone should have health care. It's a human right. Medicaid for all.
Danaly: Thank you! It's helpful to hear of stories where people lead relatively normal lives. To actually know someone who is managing this would be helpful.
Em: Thanks so much. Yes, the medical sites freak me out. The ones that are more family/lifestyle based are much more helpful. My main concerns have been if she could have normal intelligence and is she'd have behavioral problems. I think it has something to do with the severity of the condition and how well you monitor/stay on the diet. Thank you so much for reaching out to a perfect stranger. I can't tell you how much it means to me that you did and that you can manage it well.
_______________________________________________________________________
Other thoughts/concerns: More kids and Embryo Donation
I have wanted a 3rd child. Mr. Peeveme says we are done. That was not a fight I was going to fight right now but one I was not going to loose. We have 7 embys just waiting. We have had to work so hard to have our children....this one would be an easy FET. How could we not? But they all have a chance of having PKU....kind-of puts a kink into those plans. Also, while Mr. Peeveme and I have not decided what to do with the leftover embys...it would also put a kink in those potential plans as well.
Does PGD test for PKU?
Friday, August 28, 2009
Phenylketonuria (PKU) - In the "Spoke Too Soon" Department
There's no easy way to say it...unless you use the acronym. Got the word that Bambina tested positive for PKU, a genetic disorder. People with PKU lack an enzyme to process a certain protein. It builds up and becomes toxic and can cause mental retardation if untreated. In many cases in it's manageable with a lifelong low-protein diet and regular blood checks. She'd start on a special (expensive) formula. I might be able to continue to breastfeed if her levels don't get too high and she tolerates it well. But in some cases it's not possible to keep the levels low enough to stop the progression.
We are waiting the results of the second blood test. Trying not to panic or get too ahead of ourselves but this certainly would mean a lot of changes and difficulty for our family. It's not what a parent wants for their child.
It seems that false positives are not uncommon so we are holding out hope that this will amount to nothing more than a little scare that we will forget about years from now. Reasons for false positives (other than lab errors) are thick blood (she had to repeat one blood test because her blood clotted to quickly,...not sure that means her blood is thick but it might) and liver problem (she was jaundiced at the time of her test). Only 25 babies per year are born in California with PKU. Both "parents" must have the recessive gene and even then you only have a 25% chance of the child getting it. Which brings us to the DE portion of this situation.
The DE thing is just another twist on this. It does not make me any more or less sad but it's just something to to think about. If it were my genetics that would be that but we chose this person....I don't know why it feels different but it does. I'm not mad. I don't feel any more or less guilty because I could not have know this...it's just the luck of the draw but the 3rd person thing just adds another layer. I'm not articulating it well.
The other crazy thing is that my mom is here this week. She does not know that we used Donor Eggs. She keeps going over and over in her mind and out aloud who may be Jewish in our family tree and how may generations back it was. Don't ask me why because from what I have read being Jewish has nothing to do with it and being American Indian is a more likely reason (if I were the genetic mother). I keep trying to deflect and redirect her thinking. She also has early stage Alzheimer's so it's pretty-much a constant and recurring conversation.
Mom: How come this has never shown up before? I wonder how the gene could have made it past that many generations? etc... (Dude, the woman can not remember where we keep the knives but she knows every great-great grand parent on the family tree and where they were born)
Me: I guess we'll never know and honestly it does not really matter. What matters is how we deal with it for Bambina. I don't care about being a good genetic donor...I care about being a good parent. It's about how we deal with this in the future not how we got here.
Mom: I wonder why nobody in our family has even had this?
Me: Maybe they have. Brain damage would explain a lot about some of your family.
And the first person I called when I got the news? Mr. Peeveme? Nope. What's he going to do? Change his genetic code? My sisters? Even they'd tell you they don't know shit about genetics. I called my super-cool friend who happens to be a genetic counselor. She dropped everything to give me a really good web address about the condition and read some of the information to me as I drove to the lab for a blood test. Thanks so much AC.
So if you are the praying type keep us in your prayers. If you are the thinking type...think positive thought...make that think false-positive thoughts.
We are waiting the results of the second blood test. Trying not to panic or get too ahead of ourselves but this certainly would mean a lot of changes and difficulty for our family. It's not what a parent wants for their child.
It seems that false positives are not uncommon so we are holding out hope that this will amount to nothing more than a little scare that we will forget about years from now. Reasons for false positives (other than lab errors) are thick blood (she had to repeat one blood test because her blood clotted to quickly,...not sure that means her blood is thick but it might) and liver problem (she was jaundiced at the time of her test). Only 25 babies per year are born in California with PKU. Both "parents" must have the recessive gene and even then you only have a 25% chance of the child getting it. Which brings us to the DE portion of this situation.
The DE thing is just another twist on this. It does not make me any more or less sad but it's just something to to think about. If it were my genetics that would be that but we chose this person....I don't know why it feels different but it does. I'm not mad. I don't feel any more or less guilty because I could not have know this...it's just the luck of the draw but the 3rd person thing just adds another layer. I'm not articulating it well.
The other crazy thing is that my mom is here this week. She does not know that we used Donor Eggs. She keeps going over and over in her mind and out aloud who may be Jewish in our family tree and how may generations back it was. Don't ask me why because from what I have read being Jewish has nothing to do with it and being American Indian is a more likely reason (if I were the genetic mother). I keep trying to deflect and redirect her thinking. She also has early stage Alzheimer's so it's pretty-much a constant and recurring conversation.
Mom: How come this has never shown up before? I wonder how the gene could have made it past that many generations? etc... (Dude, the woman can not remember where we keep the knives but she knows every great-great grand parent on the family tree and where they were born)
Me: I guess we'll never know and honestly it does not really matter. What matters is how we deal with it for Bambina. I don't care about being a good genetic donor...I care about being a good parent. It's about how we deal with this in the future not how we got here.
Mom: I wonder why nobody in our family has even had this?
Me: Maybe they have. Brain damage would explain a lot about some of your family.
And the first person I called when I got the news? Mr. Peeveme? Nope. What's he going to do? Change his genetic code? My sisters? Even they'd tell you they don't know shit about genetics. I called my super-cool friend who happens to be a genetic counselor. She dropped everything to give me a really good web address about the condition and read some of the information to me as I drove to the lab for a blood test. Thanks so much AC.
So if you are the praying type keep us in your prayers. If you are the thinking type...think positive thought...make that think false-positive thoughts.
Thursday, August 27, 2009
It doesn't matter and I'm not looking back
Those are the words I have heard (read) from other DE mommies. I have not been at that place...or if I was I have gone back and forth between "It doesn't matter" to "I might have made a mistake" to "What does this all mean?"
I have tried to honestly convey my struggles with DE in a series of posts which I would link to if I were not so lazy. I did this to help others and to work through my own shit. I have thought about it from many different angles. Considered the pros and cons. Dealt (dealing) with my own emotions of loss, excitement, gratitude, insecurity. All the time I knew love would take over and it has.
Right now I can honestly say I am not looking back. I am aware that she in not my genetic material but that does not mater one bit.
Not only am I ok with that...I am thrilled because I could not love this little being more. She could not be more perfect.
I have tried to honestly convey my struggles with DE in a series of posts which I would link to if I were not so lazy. I did this to help others and to work through my own shit. I have thought about it from many different angles. Considered the pros and cons. Dealt (dealing) with my own emotions of loss, excitement, gratitude, insecurity. All the time I knew love would take over and it has.
Right now I can honestly say I am not looking back. I am aware that she in not my genetic material but that does not mater one bit.
Not only am I ok with that...I am thrilled because I could not love this little being more. She could not be more perfect.
Top of my list
With so much to be thankful for it might seem a little strange that stool softener is near the top of my list...but thank goodness for those little orange pills.
But you MUST pay attention to the dosage recommendations AND keep track of the last time you took one instead of taking one whenever you thought it might be time for another. Stool softeners are one of those things in life where a little is great but too much....whoops! I almost busted a stitch running to the bathroom. So my year-long "no crapping myself" streak is still in tact but just barely.
But you MUST pay attention to the dosage recommendations AND keep track of the last time you took one instead of taking one whenever you thought it might be time for another. Stool softeners are one of those things in life where a little is great but too much....whoops! I almost busted a stitch running to the bathroom. So my year-long "no crapping myself" streak is still in tact but just barely.
Tuesday, August 25, 2009
Just a few pics * Pictures redacted* It was a litmited time offer Folks.
She came out a little bruised.
Much better by 2 days
5 days
After 3 looong days they finally let us go home...huge post about that later.
That's it for now.
Much better by 2 days
5 days
After 3 looong days they finally let us go home...huge post about that later.
That's it for now.
Subscribe to:
Posts (Atom)
