How To Get Through Today

Breathe.

I won’t offer remedies beyond that, because they may not actual remedy anything. You’re hurting, you’re angry, you’re agonizing, you’re swallowed whole with fear, anxiety, and/or depression.  Your child is struggling with staying alive, your child is at the mercy of a ventilator and fate/luck/a religious entity, your child is gone, you are in the NICU watching, waiting.  You’ve driven home with an empty carrier, or an empty womb, you’re numb.  You’re alone……..or are you?

I’m not going to tell you to ignore those feelings, because they all make sense, even if they’re happening congruently and conflicting with each other. So if things are too much, first breathe.  And then find someone who will cry, scream, sit in silence or at least join you as you curl up into a ball and ride the waves of emotion  No fixing, no rationalizing, no justifying with meaningless crap, just being there in the moment with you.

Write it down here, you’ve got the undivided attention of at least one person (that would be me).  Who am I?  Maybe I’m a stranger to you, maybe we’ve met online through various sharing of experiences and emotions, or maybe you are my friend or family.  But, it makes no difference. We’re out here in this world going through lousy things, together.

So Breathe.

Link

Saying Goodbye had to be perfect for you – Guest Blog post from the Tangerine Owl Project on “Chasing Dragonflies”

I was honored to be able to be a guest blogger on the beautiful blog Chasing Dragonflies… this one was hard to write because it brought back a whirlwind of emotions.  I remember the memorial like yesterday.  XOXO to any parents who have had to do the same, and a great big thank you to Chasing Dragonflies for letting me “write it out”.  Click the above link to read and then follow the Chasing Dragonflies blog too!

A Thank you to mothers who fight [Present and Future expectant mommies: pay attention]

Since diving head first into the world of supporting parents, NICUs/preemies, and the issues that can arise during and after pregnancy, I have seen and heard many varying experiences from parents, mostly moms, one underlying theme has moved me.  ADVOCACY. Advocates for their own care, advocates for their child’s care, advocates for change.  I’m going to talk specifically about pre-eclampsia here, but the underlying theme remains the same in any case, at any time  – If you don’t think your concerns are being heard, FIND SOMEONE WHO WILL LISTEN.

Now, pre-eclampsia/HELLP syndrome is not just high blood pressure and a bit of protein.  These conditions can be fatal, or at the very least can cause other dangerous ailments for all involved.  Its not my intent to scare, but often times, we don’t know or learn about it until after the fact. I cannot tell you how many stories I have seen from women worldwide who are being told they don’t have pre-e, or yeah, their blood pressure is high, but no protein so go on home and rest…… to be left with staggering outcomes.  We can change that, but only if we take some initiative.

Some mothers listened to their gut feeling that there was something more despite assurances that everything was “fine” from their doc, They spoke up and DEMANDED rechecks, second opinions, new providers, and/or whatever else they could do. Some were argued with, some were flat out disrespected and talked down to, some provide their own proof backed with vitals and stats yet still were not heard, and that ladies and gentlemen, INFURIATES me.  I was lucky enough to have providers that cared, paid attention and did the digging when I was oblivious to my own condition. In fact, I never even felt sick…. so I would’ve probably continued to go on with life and could have had a stroke later….We aren’t all lucky enough to have great docs that pick up on this from a simple statement as “my ankles are swollen, but otherwise I’m ok” and figuring out there was more going on, and it probably saved my life, but it couldn’t save my child’s…. and every now and then I still wonder if maybe I’d picked up on these symptoms earlier I could’ve changed things.  That’s the way things SHOULD go, but it isn’t always the way it does go.

It’s upsetting to think that the ones who are supposed to be watching out for us aren’t always right.  That’s not to say that they are going out of their way to be negligent, that’s not usually the case… but there are times when things are overlooked or disregarded for whatever reason (overworked, undereducated, etc.), There is no excuse, but it does happen, so I am here to tell you what you can do for yourself.

GET EDUCATED and ASK QUESTIONS: FIrst and foremost, learn the signs of pre-eclampsia. Headaches, Visual Disturbances, Swelling in hands, face and/or feet, and just some of the symptoms.  More information can be found here: http://www.preeclampsia.org/health-information/sign-symptoms

Learn what to look for so you’re not caught up in thinking that these are just “normal” pregnancy related things. I’m not trying to turn you into a hypochondriac, but I also didn’t know how often this condition is undiagnosed or done so too late.  Don’t be afraid to ask if you have questions, I promise you your concerns are not dumb, no matter how small, in fact they could bring about a way to monitor progression.  You cannot be too cautious.  Do be as kind in your words as possible, and remember that your docs are human, so treat them like one, even if you feel they are wrong.

That said, FIGHT for your care. If your doc won’t listen, then perhaps you need to be seeing someone who will, whether that’s a junior doc, a social worker, or a different practice altogether.  We CAN “fire” our doctors.  It’s not fun or clean, but in the end, if you have done all you can to take the best care of you and your baby possible doesn’t that matter more?  There is a reason we have “mother’s intuition”.  I want to thank the moms who have fought tooth and nail when they thought something was wrong – I hope it gives others the courage and inspiration to do so as well.

NICU experiences – We want to hear your story

Dear friends,

By now you have hopefully heard or read our story / the story of Delilah, the inspiration behind the Tangerine Owl Project.  We’re happy to share her story with you, but moreso, we want to hear your stories.  We invite any of you who have experienced time in the NICU to share with us. Near and far, the good, the bad, the ugly, and everything in between. 

Are you there now with a preemie?  Did you get to take your precious one home having “graduated” from the NICU?  Are you still battling with the loss of a dear little angel? Struggling to find the right diagnosis?  Maybe you’re on day 542 of your child’s NICU stay – it’s old school by now, but you have a story –

There is so much that can happen, so quickly and so turbulently, so please share, and know that you are not alone going through this.