exile in kidville


helpless
August 16, 2009, 3:13 am
Filed under: Uncategorized

i’ve a friend…a friend that i don’t actually know all that well, but a friend all the same…who is in a terrible position right now and i simply don’ t know what to do.

her baby was just born by emergency c-section at 29 weeks.  she went in for what i believe was a routine sonogram when it was discovered that the baby had extra fluid around some of his organs.  i’m sketchy on the details, but she was then sent to the hospital so they could do surgery on the baby to remove the fluid (see?  sketchy on the details).  she knew they were also prepared to deliver if necessary.  it was and her baby was born at 29 weeks. 

i always thought that while 29 weeks wasn’t optimum it also wasn’t absolutely terrible.  her baby has been given a 50/50 chance of survival.

he was conceived via IVF and PGD testing was done as mom has a balanced translocation.  apparently the testing came back fine, the embryo(s?) transferred and as far as she knew she was having a ‘normal’, uneventful, singleton pregnancy. 

now her baby is in the NICU and apparently his body is still taking on fluids.  the baby also has down’s.  i have no idea how this is even possible given that PGD testing was done. 

needless to say, i’m devastated for them.  i’m also confused as to how this happened or what is really going on… i just don’t understand how this all could have happened so suddenly, and i’m really confused about the down’s after PGD. 

to complicate things even further, she was recently laid off and closed on a new house all in the same week.  the house isn’t move in ready and they still have their apartment as they thought they had a lot more time. 

my heart is broken for them.

i want to do something for them and i have no idea what.  i welcome any and all ideas of what is appropriate.  i’m consumed with the need to knit something for the baby, but don’t know if that is a good idea.  i honestly don’t know what would be good.  like i said, we’re not that close, but i was able to support her a bit via email while she was going through IVF.  she’s one of those friends that is just “once removed” as several of my close friends are also close friends of hers….we just never really lived in the same city at the same time and now we are actually on opposite ends of the continent.   anyway, please help with some ideas of what is best/most appreciated during times like this.  something for baby or something for mom?  both?

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6 Comments so far
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They can test for Downs with PGD, and they can test for balanced translocation, but they are not the same tests. Given she had a balanced translocation, they would have tested for that as the priority. Not sure if testing for other is optional but it would be an extra PGD fee (very expensive) and they can only do so much with the small amount of material they get, is my understanding.

Don’t know what is “most” appropriate, but would think that anything you do to let her know you’re thinking of them would be appreciated. If it’s knitting, go for it. Don’t overthink the “what” too much – get in and do something just to say you’re there if need be.

Bea

Comment by Bea

Is she out of the hospital yet? Can you make a meal for them? Some gift cards for restaurants so they don’t have to think of such things? We did that for a coworker whose husband just died.

Comment by mrs spock

I had a friend in a similar situation, across the country. Those of us who couldn’t get to them in person sent money through Paypal to a friend who was close by and she stocked the house with groceries (and dog food) so that when they got home after spending the day at the hospital, they would have plenty of options for dinner, and one less thing to worry about.

And you could always knit a blanket that would be a gift, and help your nerves as well.

Comment by carlarey

If you’re local, even just making a simple, tasty, colorful meal with lots of fresh ingredients and bringing it by her home would likely mean a lot. Something simple and kind and supportive. That’s what I’d really appreciate, if I were going through something so difficult. Just don’t ask, “What can I do?” They might be too consumed with what’s going on to tell you. Just ask when you can come by with the food/help cleaning/flowers/DVDs…

I hope your friend and her family find some solace. My heart aches for them.

Comment by Shinejil

Here from L&F. When my son was in the NICU, meals were really appreciated. We also appreciated gift cards to restaurants near the hospital. I’m sure they would also appreciate anything that you knit for the baby.

Comment by klttx

You’ve been given a lot of good suggestions. I’m so sorry for what your friend is going through. They’ve been given a rotten deal.

Comment by furrow




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