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About staceytangerineowlproject

I am a Chicagoland mommy, who runs the Tangerine Owl Project (tangerineowl.org) devoted to supporting families with infants in the NICU and/or those who have experienced infant loss. I am an advocate for maternal mental health, preeclampsia education and community outreach/support for the uncomfortable issues that families deal with. I have a ridiculously loving and supportive husband, two lovely children and a 3rd in heaven. Life can be chaotic, but we make the best of what's thrown at us, through all of this I am thankful that it has led me to meet and learn from some incredible people.

I Found My Voice at BritMums Live 2014

A blog post a mommy friend of mine…. she is so strong and I am proud of her for expressing her feelings, and finding her voice even through heartbreaking loss.

Leigh Kendall's avatarHeadspace Perspective

Me and Hugo Me and Hugo

I went to BritMums Live with a great deal of trepidation. I’d been in a deep depression since the death of my baby son Hugo in March this year, and developed anxiety issues that mean I sometimes feel unable to leave the house.

The kind and generous Kylie from Not Even a Bag of Sugar had offered me a ticket. I was interested in the Inspire sessions at the conference and how to utilise my blog to advocate for change, and raise awareness of issues.

The conference was the first significant thing I had done since Hugo died, so I was terrified.

However, I was determined to do this for Hugo so I put on my favourite dress, made myself look presentable, and got on the train to London.

I received a warm welcome when I arrived.  I’d made eye contact and exchanged smiles with a few other women, but…

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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.

Summer Blood Drive Update! It’s scheduled – Sign up now!

We have officially scheduled the Tangerine Owl Project Blood Drive in honor of Griffin Maks!

Date: Tuesday July 29, 2014

Times: 2:00-7:00pm

Location: Oakton Community Center (Program Room West); 4701 Oakton St, Skokie, IL 60076

Appointments can be made prior to the date by following the link below and creating a login to schedule your slot.  Appointments are not required, but will help those in need of a specific time frame.  Walk-ins are welcome.

https://ht.heartlandbc.org/donor/schedules/drive_schedule/2024836

Treats, and family friendly atmosphere will be provided, so feel free to bring the kiddos along.

Our goal is 50 people, but we’d love to bring this community together to knock that goal right out of the park!

The Universe and it’s ways…

Those of us who have had traumatic experiences in life often wonder Why Me? Why Us? Why Now?  I am not a believer that the Universe has a set plan for everyone that is followed on a straight course of life.  That said, I AM a believer that there are people and things that occur in our lives that align like the stars and if you pay attention, you’ll realize that the Universe is telling you something at that moment.  I don’t mean that the universe talks to you in voices or that there is a ring of light shining like a neon sign down a path or that special person, because that would just be silly.  It’s taking in the sights, sounds and words of others you come in contact with and taking note of the things around your environment where you’ll see them.  I’ll share some experiences with you:

The biggest one I can refer to is what led to the start of this organization. After Delilah passed away, I had many people that would reach out to me, and not only would they check in on how our family was doing, but they would also tell me that they had thought about her often, and that she had impacted their lives in some way.  The stories weren’t just from our close friends and family, but from people who would tell me this when I had not seen them in months, they were past friends who we rarely got to see anymore, but she had made enough of an imprint on them for them to reach out and say something.  After thinking about that for some time, I realized that this was the universe speaking to me; telling me that her short life was not for nothing, and that she was not done yet making her mark on this world. And so the Tangerine Owl Project was created.

Another experience was random, or was it? Bright Tangerine orange was the color that reminded us of our little girl.  She was not the fru fru light pink, and had never done anything muted in her life. I had always loved lilies, but not the stargazer ones, or even the casablancas, I loved the vibrancy and the in-your-face vividness of the orange ones… Delilah’s middle name was Evangeline, and my husband called her Lily for short sometimes.  It was for those reasons orange lilies were our memorial flower of choice.  They symbolized a small representation of her. A few months later, after we had moved into our new place in another city, we were leaving our house to take our children to school and in our front yard, what had bloomed, but orange lilies.  We hadn’t seen these yet, because it had been too cold, and it wasn’t anywhere in the pictures of the home when we were looking – completely random, and perhaps coincidental, but I had been having a hard time that day and had been thinking about Delilah almost non-stop for those last few days, and had cried myself to sleep the night before for whatever reason I was thinking about her being gone.  That morning, I couldn’t help but smile when I saw those lovely flowers because to me, they were a sign that she was still there with us.

Another more recent, was the case of a few lovely ladies I met recently.  I had been at my regular coffee shop one weekday morning just grabbing a cup before heading out to start my day and happened to see a friend of mine (who is a superb people connector) sitting there chatting with another lady.  He does a lot for our community and seemingly knows everybody so I said hi, not wanting to interrupt their conversation. While doing so, he introduced me to the lady he was with, turns out she is with a blood donation company, and they were just discussing how summer is a hard time for them because people tend to donate less in that time, but the need is still in great demand.  So I say, well, if you guys figure something out I’d love to help out with it, and take her business card, say my goodbyes and leave them to get back to their meeting….. I emailed her later that week to say hi and follow up, and when I did that she had mentioned that she’s working with a local resident to put together a blood drive to honor her son (yep, the one I’ve posted about earlier this week), and if I wanted to meet with them they’d be happy to work together. When we held that meeting, in talking to this boy’s mother and telling her more about the Tangerine Owl Project and Delilah’s story, I found out that her son had been a preemie as well (due to being a triplet), and she had had her own NICU experience in addition to the battle with Leukemia her son had faced in later years.  We all laughed at the fact that the stars had aligned to bring the three of us together to now put on this upcoming event.

Some people argue that with cases as this people are searching for any connection to their loss or something that’s on their mind (like how people trying to conceive take more notice of baby bumps, children playing, etc.), and some will argue that its all random chance.  This may be the case, but instead I’m choosing to believe that the Universe chooses to communicate with us sometimes, and listening to it when we notice leads to something positive.  These aren’t answers to the “why?” or “why me/us?” but rather sometimes the “why now” and “where do I go from here” if you’re lucky enough to catch the whispers.

Summer Blood Drive

We are THRILLED to be sponsoring a summer blood drive to honor of Griffin Maks, a little boy who had leukemia and is now in remission.  This incredible Skokie family has endured a lot…. Not only was Griffin a triplet who was born prematurely and spent some time in the NICU and received transfusions, but at only a few years old, he was diagnosed with leukemia.  We are happy to say that Griffin has made an excellent recovery thanks to blood donations supplied by Heartland Blood Centers – 

Did you know that cancer patients receive just as much blood, if not MORE, than those in accidents that need transfusions? And preemies are often in need of multiple transfusions throughout their stay at in the NICU.

So now, we’re partnering with Griffin’s family and HBC to try to give back. Time and details to be announced, but keep a lookout for info soon. Each donation can save 3 people!  It’s amazing, and just because it’s summer doesn’t mean that people don’t still need blood each and every week….

Link

Letter to NICU parent

I am not surprised, but I am overwhelmingly encouraged to see that there are other organizations that are dedicated to helping parents make it through their time in the NICU.  I found this letter, and it is inspiring and perfect in almost every way so I wanted to share. Because HOPE is needed every day, whether its day one in the NICU or day 564. There is no straight line to walk, there is no NORMAL in the NICU.  So, for those who want to support those they know who are fighting this fight and who are wondering what they could do, click through the link above to read the letter on the blog Life With Jack. PRINT this letter and give it to the ones who need it. It will matter and it will make a difference, if only for a moment, I promise you it will. 

Cheers & Hugs

I want to remember this…

Something I bet you would never expect a parent to say; and it’s BEAUTIFUL.

meghanoc's avatarExpecting the Unexpected

They called us back to the NICU.  We had been back in my labor room, away for only a few minutes and had spent the time calling family to tell them to come now; her time was short.  It is never a good sign to be called to the NICU.  Her oxygen sats were dropping.  Her chest xray showed a collapsed lung and another leaking air.  She looked so purple lying on the warmer.  Beeps of machines.  The whoosh of the ventilator.  Her oxygen levels flashed on the screen…58…54…55…54.   Those numbers should have been in the 90s; when we left they had been holding steady in the 80s.  I took it all in… my baby was dying.  They sat me in a comfortable chair and put up a privacy screen, perhaps so other families wouldn’t witness our suffering, perhaps so we could have our pain in private.  From where I…

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How To Stay Sane In The NICU

So So true. All really great points. It’s up to you if you feel emotionally ready to talk to other parents at get togethers, but I agree with finding a way to disconnect from the baby’s isolette if only for 15 good minutes. It’s hard to pull yourself away, but it’s necessary for everyone’s sanity. Warning: this is SO MUCH harder to do than it sounds, but you can do it.

Alana's avatarRockstar Preemies

Having a baby in the NICU is an intense experience that hits you like a giant slap in the face.  Then it waits for you to shake it off, and it dropkicks you in the stomach.  Not only are you heartbroken and terrified and desperate to see your baby grow and develop and eventually be discharged, you are also constantly on the verge of losing your mind completely from the stress and exhaustion and worry and all the emotional ups and downs.

The good news is that there are many (many!) of us who have been through it, and we’ve learned a few things about how to hang in there.  And while no families have the exact same experience, there is a lot of overlap in how parents tend to feel during a NICU stay.  So if you are pregnant, have a baby in the NICU, or know someone who does, hopefully this…

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Link

Now I Lay Me Down To Sleep – Remembrance Photography

If you have a sick baby, this may be one of the most valuable memories you can have.  These professional photographers donate their time and talent to this organization and will come to take precious photos of your little one in a way that will provide solace in a time of loss.  Whether they were born sleeping or whether they end up very ill after birth, the care shown is phenomenal in these moments when families are suffering so much.