5.27.2010

crazy life

that's what this is.. just one big- fat- crazy- life.

i've been MIA for the last few weeks just sort of dealing with some things... i was so stressed out last weekend that i had a twitch in my eye. (laugh it up- go ahead- but it's stinkin' annoying! :)

the loss of justice hit really close to home for us. even though i didn't know his mom well she was on a few of the message boards i frequent... making it more shocking than if we were complete strangers. and, knowing that justice was born at 27 weeks... bpd kid... so many similarities to wren... he just got sick more. that could be us... that could easily be us.  and then this past week another sweet angel got her wings. born at 26 weeks, weighing only 8.5oz... breathe easily sweet evelyn....

i'd like to give prematurity a swift kick to the shin and a throatpunch. this.just.sucks. i'm reminded how blessed we've been... we've had things so easy compared to some. i suppose this life is all about perspective isn't it?


ok... enough depressing prematurity hating for now. here are some other things we've got on our plate:
one of which is talking to an mfm about our options for the future. our crazy-super-awesome mfm in hawaii said "if you get some 70 year old man practicing OB he's likely to tell you never try again... but if you get somewhere with a good hospital and a high risk OB they'll tell you, no problem." so, as much as we all LOVED her.. we're going to talk to some different doctors and see what they tell us. (btw- if you know anyone that has an extra baby- we're happy to take it! we're also planning on adopting as soon as it becomes possible.. through private adoption as soon as we could, or when we become about twice as rich and can afford agency adoption. -i'm reminded of raising arizona.... know anyone with more'n than they can handle?)


i've also got to see a hematologist. upon doing more research about my APS i continue to grow more encouraged about the possibility of a closer-to-term pregnancy, and more concerned with my long term health. (for instance, i'm at a 40% higher chance of stroking out in my 30s or 40s.. and a pretty sure bet i'm going to need a heart valve replacement at some point... nice- eh?) i've also come to the conclusion that the headaches (migraines) i've suffered with my whole life are due to my APS, and also my memory loss. (memory loss and headaches becoming more and more some of the dominant symptoms of APS.) there's some really neat research going on right now, and i'm excited for what the future could hold for those dealing with APS. they've got a treatment they're doing for the headaches now with a series of lovenox shots for 3 months or so, then off for 6 months, then on the blood thinners again... it's proving successful in many people. i'm excited to give it a try. (it makes perfect sense that i had the worst headaches of my life with max- when my APS was full blown- and didn't have ANY while pregnant with wren- while i was on blood thinners. also, why excedrine works better than other painkillers for me- it has aspirin in it.) i'm also going to try to be tested for an underlying auto-immune disease to see if there's anything else wrong with me. hehe.. like.. there could be more?! secondary APS is more common than primary, so i just want to get checked out.


we're also in the process of deciding where we're going to live next. (at this point in his career that seems to be about a 60:40 decision... though i guess we'll see how it all pans out and re-evaluate that ratio.) we're, now, thinking ft. bragg. it's quite a ways from home, but it's still on the mainland. (which is something to be happy for- right grandparents? :) there is a children's hospital about 20 minutes away with great programs which means we won't have to worry about wren getting the services she needs or, if we try again, getting good healthcare for me or the future baby. it's close to the raleigh/durham area, and right outside fayetteville (NC- not AR for my AR friends who didn't catch that. :) which is a pretty big town with seemingly lots to do and fun to be had. (read: not lawton, oklahoma)

we went to the doctor the other day for wren's wheezing/rattling/purring after she eats. it could be a few different things. we're starting her back on reflux meds, hoping that kicks it. (xantac this time, which is milder than prevacid.) if not, she'll have a swallow study done in a few weeks. the risk is with aspiration or long term damage from reflux. we're hoping the meds kick it right away. (i'm also upping her probiotics... so that could possibly help too.) i'm planning a separate post about this whole issue. coming soon!


also, we saw an AMAZING pedi.. but, she's deploying next week. ugh. anyway... she was great and assured me that tricare would cover wren's pt/ot and at least get her an evaluation to see what they think about her. (but she was confident that they would go ahead and recommend therapy as well.) it was so awesome to talk to a good doctor for a change! she also gave me an Rx for a day or two of reglan... my last ditch effort to boost my supply. (i REALLY want to make it to 2 years- and this little bird won't nurse to save her life now! she's too wiggly and distracted.) so... hopefully with some power pumping and pharmaceutical handiwork we can get her back on bm again! the pedi also supported my decision to keep her on bm until at least 2 whole heartedly.. she said it was one of the best things we could do to keep her healthy. (i was surprised since the last doc we saw said, "oh, she's about 1 anyway, it won't matter."... "it's only really recommended to 6 months anyway"... what. an. imbecile. i just keep reminding myself that most doctors aren't actually trained on lactation... in addition, apparently, most doctors don't read current studies either. continuing education anyone?)

here's something to cheer you up. the little bird's birthday is just around the corner. we're planning a monster theme... it's going to be an awesome time. i'll update with pictures after the party. (her birthday is the 4th... but the party isn't until the 26th... scheduling conflicts and whatnot. i hope the suspense doesn't kill you.)


and here's a look back... from when she just came home from the nicu to now... she's come so far.... (you can really tell when you look at her in relation to the handles... and the bumpers are gone.)


about 5lbs


over 15lbs

i love you my readers... sorry i've been neglectful... RL just keeps getting in the way of all my online intentions. i promise to do better. :)

3 comments:

Jeannie, Jane, Angel, Mommy, etc.. said...

I am so very sorry for the losses you have experienced over the past week or so. I completely understand about things like that hitting too close to home. The same thing happens when I hear about a liver baby who has earned his or her wings. We, like you, have been very blessed with Monkey's recovery. We haven't had near the issues that others have had.

I hope you find a good dr. It makes all the difference in the world. WE went from being told that I was too fat to have kids to I would never have kids to let's try this! And, now we have two. Monkey was very planned and mouse, not so much! :)

Trish Preston said...

It's amazing how much Wren has grown! It's been a joy to "follow Wren" this past year.

Kristen said...

Wren is absolutely precious!

Also, good luck with the blood thinner approach! Autoimmune diseases are pains in the butt (mine's RA). Thank goodness medicine has come such a long way! For me, it's all been about having patience and faith as we play with the medications.

I'm so sorry to hear about the loss of the other little ones. And condolences to all who've been affected...my thoughts are with y'all.