Wednesday, January 13, 2010

Breast/Bottle and Galactosemia

As always I meander around on this blog... I craft, I live and so this blog reflects the way I live! My post today is a comment I posted on Facebook (with minor changes!) in response to a comment on an article that it isn't that "Breast is Best" but more that it feels NORMAL.

Here is the article... (note I read about 80% of it!)

... its not that it is best... it is very much that it is NORMAL for me. I was never trapped in my house due to breastfeeding... Hell I got 'em, I used 'em, I flaunted them for 2 of my 4 babies - which for my severely modest personality - I didn't even wear tight shirts as a kid! LOL! You'd understand... it was just NORMAL.

It irks me to no end that I couldn't breastfeed baby E. When you're in the post midnight throws of postpartum (as opposed to the pre-dawn bliss - when all seems to come back into focus! and be normal in your sleep deprived brain!) and your doctors throw around an earth shattering word like 'GALACTOSEMIA' and your research yields the word 'DEATH' - and generally before the results come in the damage is done... you stand up with tears in your eyes and anger and frustration in your heart - at the unfairness of it all and say "Well, S**T, it sucks but its best for her" and to hell with what feels "Normal" and "RIGHT" to you! Her survival is paramount.

(FWIW, she was a 31 weeker - a preemie - and spent 35 days in the NICU - despite that I could have - and would have gone onto have a NORMAL breastfeeding relationship with her, except for this one HUGE stumbling block!)

It irks me, to hand this child a bottle of formula and know that I could produce something far more nurturing to my spirit than something canned that has sat on a shelf for how long. I don't begrudge the parents that choose to bottle feed ... hell if it feels right to them go for it! I'm not a breastfeeding nazi - if I was before, this has definitely humbled the experience!... I don't begrudge the parents that breastfeed their babies. But I do stand back with a feeling of jealousy, a tear in my eye, a hole in my heart for the emptiness that I feel when I hand my baby a bottle of formula instead of having her suckle, and know that I was at least lucky because mine survived and mine after 6 weeks was JUST a carrier! I think we got the FINAL answer when she was 10 weeks old. How's that for speedy answers on a potentially life threatening condition?? FWIW, most children with full blown galactosemia (not the duarte variant) don't survive beyond 2 weeks of life - both regular formula and breastmilk is TOXIC to them! Soy is the only viable option.

It fills my heart with Sadness to know that E's babies will have to be tested immediately after birth - to make sure that they don't have the full fledged disease that would permit something so NORMAL to KILL them. It fills my heart with sadness to know that if she wants to breastfeed - she can't do so immediately after birth - that she will have to wait almost 2 weeks and be a slave to the damn pump - but at least today she has that option, and she will know what she faces. It also fills my heart with sadness (to the point that I have thus far ignored it...) that she may not be able to have her own babies... though I think that was ruled out when we found out she is JUST a CARRIER!

Bottle feeding doesn't feel NORMAL to me! But this is why I do what I do!

FWIW, Galactosemia is very similar (yet very different) to Lactose Intolerance - only more severe - in that it can and OFTEN does kill - because the body is unable to process the Galactose in the foods, it builds in the body until it reaches toxic levels. If you want to learn a little more on Galactosemia visit

Wednesday, January 06, 2010

Crafting Yumminess

So apparently someone spiked my New Year's punch with "stitch itch" - because that is all I've done for the last 6 nights.

For Christmas dh got me a new Ipod Touch - and of course I had to drag out the machine to make a cozy for it. I'm not happy with my first edition so it will be back on the crafting block in a bit, when I come up with remedies for my problems with it... it also needs an add on for my cell phone since my itouch isn't a phone! :)

So I started the year off with a little Art Roll for a friend. She hasn't gotten it yet, but she will! Soon! This case was initially inspired by the Artist's Paintbrush Roll. Along with the various knitting needle cases that can be found all over the internet. Let me tell you this was a dog to finish just because I lost the button a bunch of times, and thank goodness for small mercies I had just ENOUGH (like barely enough) black thread to finish it... I had to steal from the bobbin to finish it.

So the New Year here has dawn across the country with an incredible cold snap. Unseasonably cold and yucky for some of us. So my kids demanded I make them a Snuggie. You know the lady in the blue blanket with sleeves that can be seen on the TV! So we ventured out to the fabric store where they picked their fabric. And back home again to create these. The pattern we sort of used can be found here. With Some modifications the girls are quite happy with their new blankets! :)

So that put me at 3 for 3! Because both Snugglies are slightly different - one followed the pattern but needed a little tailoring and the other we pretty much reinvented it - with our own modifications!

So a few days later I decided that my Swiffer needed a cozy (or 6.) and within an hour I managed to cobble together 6 new floor cleaners so I don't have to buy and trash a bunch anymore! :) Idea can be found here.

And tonight's little bit of yumminess came from 2 dish cloths. We are in desperate need of library book bags as we keep getting books from the library and they clutter up my counter space or get lost in the house until its time to return to the library. I figure if we have a designated storage place for the library books we'll have it made. This one is my library bag and it came from this tutorial. Now my eldest kid is planning to make one of her own, only she isn't using dishtowels. Its all set up all she has to do is sew!

So far it totaly I'm 6 for 6 crafts this year... that means almost one a day for the entire year so far! :)