According to the March of Dimes, 12.8% of births in the United States are premature - less than 37 weeks gestation. In most developed countries, it's a little less, 5-9%. The reason for premature birth is never determined in fully half of those births. Still, that's a lot of babies - 1 in 8 - so I know we can't possibly be the only Pagan family who's been through the NICU wringer.
These days, modern medicine produces some true miracles - one occupational therapist I know from our NICU experience points out that when she started working 25 years ago, the youngest babies that survived were 28 weekers - babies like Leaf. Babies like Acorn would likely not have survived at all (and frankly, I likely wouldn't have survived that pregnancy). Now days, more than half (depending on the study) of 24 weekers survive, and the youngest baby on record to survive was 21 weeks 6 days. That's not to say that there aren't lifelong complications for many of these tiny babies, but the odds get better the older babies are.
Life in the NICU is complicated and stressful. It has the potential to be more complicated and more stressful when your beliefs are not quite so mainstream. When you know that many of the people you're depending on to care for your child aren't going to approve of your faith, you have to wonder what happens to your child if you're open about your beliefs. Hospitals have chaplains, sure, but in many hospitals it's hard to know which of them will be ok with your faith and which ones will not.
I know - I've lived it. And right now, I'm living it again.
For those of you new to my blog, let me give you the brief back story: Acorn, my 3-year-old son, was born 13 weeks early, and spend 291 days in the NICU, along with another 13 days in various PICU units in his first year. He came home on a ventilator, unable to breathe without its assistance, and a long list of associated diagnoses. Leaf, my newborn (almost 7 weeks old at this writing), was 12 weeks early, and is currently in the same NICU Acorn was in.
After a lot of contemplation (because what else do you do when you're spending 4 hours a day every day for weeks on end with your breast pump, pumping milk for a tiny baby who cannot eat yet?), I've come to the conclusion that families like ours could use a little more in the way of support. Sure, there are mainstream preemie groups out there....but who do you ask about doing energy work on your preemie, or about doing baby blessings, Wiccanings, Sainings, and the like in a hospital environment? Who do you talk to about concerns about being in or out of the broom closet in what can sometimes be life-and-death situations?
With that in mind, I've got some resources in the works. If you know a Pagan family of any type who's in the NICU now or was in the past, feel free to send them my way.
First, a facebook page for parents to network. Search for Pagan Parents of Preemies, or use this link (I hope the link works - once there are 25 likes on the page I can get a shorter nickname link, and I'll come back and fix it). It's my intent to have some discussion threads, and to try to get a prayer/energy request post up every week.
There's also a blog - Pagan Preemies - I'm hoping to post the stories of different families here, along with other items as they come up, and suggestions for surviving in the NICU. Guest posts welcome.
We'll also be putting together care packages for families in the NICU. There's a request page on the blog. Long term, I have some big plans for these, but we're starting small - blanket, appropriately sized clothing, generally useful things (hand sanitizer, lotion, etc), a religious pendant or emblem, a battery powered LED candle, and so on. More ideas welcome, especially if you know where I can find the items you're suggesting.
Also on the blog you'll find a newsletter sign up. That will have a recap of items from the previous month and a list of all prayer/energy requests. It'll also have news about how many care packages are sent and what things we're looking for to go in them.
There are some additional things in the works. An ebook about surviving the NICU as a Pagan is in the works. A possible logo contest with prizes would be fun. I'd like to get some publishers to donate copies of the various prayer books that are out there, or maybe collaborate with other NICU grad families to create our own. I'm sure there's more that will come in time, but this is a good start.
A final note: at this time, this is not officially a non-profit, it's something I'm doing because I think it needs to be done, so donations aren't tax deductible. But, if you happen to run a church or other Pagan non-profit that would be interested in taking us under their wing, I'd love to hear from you!
8 years ago I gave birth to my first daughter at 30 weeks. She weighted only 2 lbs 11 oz. She had two heart murmurs among some other issues. There were a few nights we weren't sure she would make it. She was in the NICU for 7 weeks. 7 long weeks, where like you, I spent countless hours in her various units, and even more pumping that 'liquid gold' for my child. They were able to close one of the murmurs with drugs, and the second enough that she didn't need surgery. She came home with her own oxygen tank and a heart monitor. She wouldn't grow into her 'preemie' clothes until she was nearly four months old.ReplyDelete
So yes, I've been there. At the time I wasn't a declared Pagan... I was just starting to find my path. But I knew that it wasn't Christian by any means. So I had to keep my mouth shut and do what I could with what I could. I never really thought about having a Pagan Support group for these parents and their families. But looking back, if I had had someone like-minded that I could have vented to... asked support from or whatever, I think it would have helped my mental state tremendously.
I'm going to be sharing all of this on my own blog... your facebook page, etc. I have a couple of posts already scheduled with the coming 9/11 anniversary, but I'll be sure to have them up first thing next week. You've got some one behind you 100% and willing to help!
Both of mine have had the murmur that can be closed with medication - Acorn needed to have his closed with surgery when the meds failed, Leaf failed the meds too, but over time it's closed on its own. Acorn also had murmurs caused by two small holes in his heart that have resolved, and Leaf has one as well - what happens with it remains to be seen, but it wasn't a big enough problem to pursue fixing.