Monthly Archives: July 2014

One Woman’s Story….. HELLP Syndrome

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As I was scanning one of my groups in Facebook today, I caught the story that Rachel Heidecker was sharing with us about her experience…..I couldn’t help but read on, I was enthralled by her telling of it. First in the post space, then paragraph by paragraph in the comments section….  It was laid out for us bit by bit, like chapters in a book that you can’t wait to turn the next page to……and we were hanging on every word.  She had to stop writing for a little bit because simply recalling and writing everything still drained her emotionally (and perhaps because it was ungodly late/early in the morning, but still…).

I didn’t have HELLP, but I know some women develop it, and I thank goodness that I was only diagnosed with preeclampsia.  Does that sound weird?  Not to me, because II couldn’t even imagine what it would be like to have it develop into HELLP and all the complications that it brings…….until now. Luckily her story had a happy ending…..but some do not. My eyes are a little wider open, and I am wanting to share this with you all out there, partially to give a little more insight about the symptoms to take notice of, and partially because we are still working to understand the trauma that some of these pregnancies create for women…..It’s a long read, but worth sharing.

Rachel, I am honored that you’ve agreed to let me share this with the public.  You have overcome a tremendous amount, and as painful and exhausting as it was to live through, recall and write down, you are brave to do so, and with any hope, your story will also encourage awareness, and offer still inspiration in the face of darkness. So without further ado……

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It’s 2 am and I am wide awake. Thought this would be a good time to share my story. It started at 29 weeks gestation (almost 5 years ago) I woke shivering…My whole body shook, I got up and put on 2 of my husbands hoodies and crawled back into bed with 2-3 blankets on top at the same time. I continued to shiver. I assumed i had a fever (being from a nursing background) I felt my body, I was hot. Like the hot dry skin you feel on your children when they have a fever. I didn’t get out of bed to check my temperature. I was too cold. I laid there in silence feeling my baby move happily in my tummy. I hadn’t been sick, no cold or sore throat, I thought “why would I just spike a fever spontaneously?” Odd. I soon fell asleep as the trembling subsided as my body regulated the temperature on it’s own. What does this have to do with preeclampsia you might ask? The next morning i woke with a splitting headache. As I got to the bathroom, and sat, I noticed my feet and ankles were quite puffy. Odd, I thought again. Must be just the pregnancy causing this as I only had a few months to go. As the day went by my headache went away, but the swelling stayed. Fast forward a few weeks….. I attended my appointment with my doctor (my family practitioner) peed in a cup, stood on the scale (as the nurse checked and double checked the scale and frowned as she wrote the numbers down). The doctor said you have some protein in your urine and you gained more weight than we would’ve expected you to since your last visit, however your blood pressure is fine. I want to see you in a week. Ok, fine. Everything must be good… I mean they know what they are doing right? Fast forward one week… More weight gain… More protein more swelling and an elevated blood pressure this time. My doctor started me on labetolol and I was sent home. I continued to work as a nurse (12 hour shifts) even though I was told to take it easy. I know, dumb on my part. The weeks went by… More weight gain… Higher blood pressure…. More protein in my urine.. Still no referral to a specialist. I look back now and wonder why I didn’t demand a referral. Hind sight is 20/20 I suppose.

 

The labetolol didn’t seem to be doing the trick, at my next visit my doctor upped the dose and the frequency and advised me to get a blood pressure machine for myself. So I did. I watched it closely, everyday. I started to notice in pictures people had taken of me that I was quite swollen. And… Despite being very thirsty, I didn’t pee very much. Then the diarrhea began. I thought, oh great now I have to have diarrhea too?!!! My husband’s grandfather died at the end of January 2010. I attended the funeral in flip flops as that is all that I could get on my badly swollen feet. My due date was Feb 19, 2010. His funeral was January 25 2010. At this point I felt… How can I go on any longer??? Still my baby danced happily in my tummy… The only reassuring thing in the whole scheme of things.

 

My doctor then made me quit work and go on bed rest. Things just weren’t improving any… Just getting worse. I remember him saying… We have to keep this baby inside as long as possible!! Still no referral to a specialist. So I reluctantly started my mat leave roughly 4 weeks early. I knew we were short nurses at work, but I had to do what the doctor said. I spent the next few weeks, checking my blood pressure, resting, reading, and I soon become very bored. I can’t sit still usually. So since my husbands birthday was Feb 4, I thought I would plan a party for Feb 5 (a Friday). The party went well, at the end of the night I had a very bad headache and started to see flashes of light in my peripheral vision. My blood pressure was not bad (125/68) by the time I had went to sleep after the party. My husband reassured me that I had likely overdone it and that I would feel better by morning. He rubbed my back and my feet and legs with lotion (cause at this point I felt like my skin could not stretch anymore from the swelling) I was 38 weeks that night, on the nose.

 I woke up the next morning… 6 am to be exact on Saturday feb 6, 2010) I had extreme pain around my abdomen (right under my breasts, it felt like someone had a rubber band wrapped around me and was pulling it tighter and tighter). Then I ran to the bathroom an puked. The pain did not subside… Nor did the nausea. Checked my BP on my home machine… 250/125. OMG. I remember staring at the digital numbers and thinking …. No this can’t be right. My training told me to recheck on the other arm. So I did… No better, still dangerously high. I woke my husband, it’s time I said. I knew it hasn’t labour the pain did not come and go like labour contractions should be. I tried to get my baby to kick… Or move in anyway. She did not. She was still. (She is alive and well today, by the way so don’t panic!)

 

On the way to the hospital I continued to throw up in an ice cream pail from the party the night before. Then my nose started to bleed. I don’t remember much from here on in, I remember the bright red letters that spelled “EMERGENCY” as my husband wheeled me into the emergency room on a wheelchair as I kept my head in my pail to catch my vomit and the trail of blood coming from my nose. I remember the nurses saying lots of things STAT, and it’s going to be ok honey… I remember being transferred to a bed, undressed, hooked up to an IV and a baby monitor. Blood was taken, a Foley catheter placed in my bladder. I was in so much pain and so nauseated that I closed my eyes and listened…

 

I heard things like “baby is fine but a little Brady” “I can’t get a line, she is too swollen” ” get anesthesia and ICU in here STAT” “her blood work isn’t good… She is in HELLP” (for those of you who don’t know what HELLP is I will explain what it stands for at the end of the story) “ok Rachel, we are going to have a baby today!” The conversations continued around me as I kept my eyes closed. Magnesium drip started (to prevent seizures), fluids started… The remember hearing the urgency in the voices around me. I knew the lingo… I knew I was in trouble. I then wondered.. Where is my husband? I hadn’t heard his voice in a while. I peeked my eyes open and the last thing I remember and saw before my world went black was my husband crying into a nurses arms. Then I heard, “OPEN THE DOORS TO THE OR!!” and that was it….

 

I awoke… First all I could hear was the rhythmic beeping of my heart on a monitor… I felt the blood pressure cuff tightly squeeze my arm. I felt peaceful.. At ease. I felt my husband’s fingers caressing my right hand. I slowly opened my eyes. I saw monitors… Lots of them and IV pumps… Even more of them. I remember thinking… I’m alive. Then things came back to me… Wait… What happened to our baby??? My husband must’ve saw the urgency in my expression and he just said “she is fine and well… She is in the NICU just for monitoring over night. Your mom and dad are on their way… “. I closed my eyes again. I heard the nurses scurrying around and then I heard a NICU nurse speaking to my husband. She said that she is doing great in the NICU but since I had to have such a fast c section they wanted to keep her overnight for monitoring. Again… My world went black.

 

Where was I… My daughter was born via emergency c section feb 6, 2010 at 226 in the afternoon. I didn’t get to hear her cry, or hold her right after she was born, I was still under general anesthesia. And then she was whisked away to the NICU before I was even awake. I slept hard that night, despite being in the labour and delivery observation unit where the lights were bright and the monitors and alarms were loud. I remember having all these questions going through my head as different professionals kept coming to my bedside and speaking to my husband and the nurses. Blood drawn every 4 hours, a chest X-ray to assess why my oxygen needs were increasing, IV medications dripping into my veins, but… I was too drowsy to even open my eyes. As I would drift in and out of consciousness I tried to remind myself of this: “you work in this hospital, Rachel, not on labour and delivery, but you work here, you know that the professionals that work here are the best of the best, trust them” I tried to remind myself of this as I would panic. And it worked. I am not a hugely religious person so I didn’t pray. This may sound bad, but I didn’t even think to turn to god in this situation. I kept using my scientifically trained mind to draw conclusions, predict what was going to happen, and listen to the doctors as they talked about the results of my blood work around my bedside… From their conversations I understood I was going to be ok, I would survive this. I just had a long road ahead of me. By that afternoon (feb 7,2010) I was able to see my baby. She was brought to me by the NICU nurse. I didn’t hold her yet. I was too weak and drowsy from the magnesium drip. But she told me what I wanted to hear:  “she is perfectly healthy, 7lbs, 8oz. She will be moved to post Partum now where the nurses will look after her and your husband can visit more freely.” I opened my eyes… She was beautiful, an angel wrapped in her light pink blanket. Sleeping peacefully in my husband’s arms. “Have you thought of a name yet mom and dad?” The nurse asked us. In 24 hours I had not spoken a word, but I knew what I wanted you name her. “Her name is Taylor. Taylor Anne”. That took all the energy out of me, mustering those few words.. And I quickly fell back to sleep again.

 

Before I continue here is a bit about HELLP:
HELLP syndrome is a life-threatening pregnancy complication usually considered to be a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth.

HELLP syndrome was named by Dr. Louis Weinstein in 1982 after its characteristics:
H (hemolysis, which is the breaking down of red blood cells)
EL (elevated liver enzymes)
LP (low platelet count)

HELLP syndrome can be difficult to diagnose, especially when high blood pressure and protein in the urine aren’t present. Its symptoms are sometimes mistaken for gastritis, flu, acute hepatitis, gall bladder disease, or other conditions. The mortality rate of HELLP syndrome has been reported to be as high as 25%. That’s why it’s critical for expecting mothers to be aware of the condition and its symptoms so they can receive early diagnosis and treatment.

 

I heard all these terms around me as I lay helpless in my bed. “Her platelet count is 23” “explains the nosebleeds” “we have to watch her closely for strokes” “liver enzymes are extremely elevated no wonder she had such bad abdominal pain” the day after the birth of my daughter was a blur. I slipped in and out of sleep, and soon I noticed it was dark again outside. Nurses came in and out checking my blood pressure, asking if I had headaches and if I was seeing double. Phlebotomists drew blood from my veins every 4 hours. New IV bags were hung of magnesium sulphate to prevent seizures. Calcium gluconate IV was given to protect my heart. My c section incision was monitored closely for any signs of hemorrhaging as well as any flow vaginally was monitored to be sure it wasn’t excessive. Visitors were escorted out of my room, Except for immediate family. I heard the nurses say “she needs to be on strict bed rest she is at a high risk of stoke yet, and bleeding… She must rest” I answered questions with yes and no answers as that was what I was limited to. I saw colleagues that I knew come to the foot of my bed, discuss my situation, assess me, pat my shoulder, give me a weak smile and leave. Before I fell asleep that night I thought “how ironic, my colleagues are looking after me now” ICU attendings came to the foot of my bed and were aware of my case in the event that I decided to take a turn for the worse. internal medicine specialists came as well to try to get the right combination of anti hypertensive medications to make my blood pressure drop. Hematology docs came to monitor me for symptoms of a DIC (disseminated intravascular coagulation) I had not shed a tear this whole time. Now, as I lay in that bed for another night in labour and delivery the sobbing started, but not for long as it hurt my incision. So I let the tears run down my face thinking “I should be home with my baby right now, instead almost 36 hours after giving birth to her I had hardly seen her. Then reality hit me… There is about a 50/50 chance I will not walk out of here”.

 The next morning (feb 8,2010) I woke to sun shining in my face. I looked around the room and for once I didn’t have to force my eyes to stay open. I noticed the drab colored walls, the angelic paintings on the walls and the sound of the monitors beeping beside my head. I looked at my arms… Full of bruises from the multiple phlebotomy pokes and having next to no platelets… Every poke turned into a huge bruise. My IV was still running and from what I could see from the bright orange med sticker on the small bag was that I was still infusing the magnesium. The last blood pressure on the machine read: 185/95. Still high. Shit. But at least today I was more alert. I could hear my husband snoring in the nearby chair… I wondered if he had slept in that chair for the last 2 nights? The nurse then came in and gave me my meds. Asked how I was feeling and for the first time in 24 hours I spoke to her in comprehensible sentences! She said “we are pleased with the progress you are making, your platelet counts are coming up, your liver enzymes are lowering and the protein in your urine is decreasing as well. Just still working on your blood pressure and getting that to come down. Tomorrow you should be able to go to post partum!!!” I was beyond thrilled. I was getting better! Visitors were aloud to come in that day which lifted my spirits tremendously. I even got to hold Taylor for the first time. I didn’t cry, I just giggled as I held her and attempted to nurse her. (Since my breasts had no stimulation it would be hard for me to nurse her, but with a little determination I got my milk to come in over the next few months and I actually just quit nursing her a year ago… When she was 3😀).

I was then moved to a room upstairs to the maternity ward the next day. My IV’s discontinued and my Foley catheter out. The nurses told me that over the last 60 hours I spent in labour and delivery “ICU” I had peed out over 10 liters of fluid. (As most of you know once the placenta is delivered the body slowly but steadily goes back to it’s normal state, so to speak, and my kidneys worked overtime to get rid of the fluid I had accumulated in my interstitial spaces over the last 2-3 months) after 3 more nights in post partum. We were discharged. I still had the memories of this whole ordeal plainly written all over my body. The massive bruises on my arms and hands, the incision on my lower abdomen from where my baby was pulled from my body in a hell of a hurry (pardon the language) and the beautiful pain of trying to get out of the chair to put my breast milk full baby to sleep In her bassinette. The pain I was feeling brought a smile to my face over the next few weeks at home. I was alive!! I fought and came though this very serious obstetrical complication.

My blood pressure did not go down immediately. I had to be on pills for 3 months afterwards. But today, 4.5 years later, we are all healthy and well and the ordeal feels like only a memory and so long ago. Taylor will go to preschool this September. Does time ever fly by! My husband and I are still in discussions about another baby. I am still traumatized from the last one! We have been to an obstetrician and all she can tell us is… You might have this again and you might not. I guess we have to realize that the professionals that look after us are only human and just because they are brilliant and talented people, they cannot predict the future.

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For those reading, if you have questions about preeclampsia / HELLP or concerns, please contact your healthcare provider. The Preeclampsia Foundation website www.preeclampsia.org also has a lot of great information.

Perspective

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I saw this quote today and it really struck me.

‘I stopped telling myself that I’m lost.  I”m not. I’m on a road with no destination, I’m just driving with hope that I’ll find a place that I like and I’ll stay there.  I’m not lost. I’m on my way.”

There have been many times where I’ve felt lost, but never as much as after the death of our daughter.  There is something about the way these words are laid out to take on so many different meanings that makes it worth putting out there to think about. 

Here’s my interpretation: It’s shockingly reminiscent of the journey that we take through loss/grief.  At first it seems like we’re in denial…. ‘I’m not lost…’ I just don’t know where I’m going yet….  Then the journey becomes a search for healing “I’m trying to find somewhere I’ll like”.  Once we’ve found that place of healing we’ll stay there (one might call that acceptance), and then the final line: “I’m not lost. I’m on my way” is the turn around of coming out of the grief and starting to rebuild their world.

In another interpretation, one may look at this simply as a positive re-framing of perspective. When you find that you are at peace with being “lost”, you then aren’t lost anymore, because there is no longer a need for a specific destination. So changing your own view is a way to move forward and stop feeling so stuck.

I struggle with this in life.  A planner by nature I like to have a plan and I like to see the road ahead of me on how to get to the destination.  That’s not to say that I always have a rigid unadjustable view, but I do want a general road-map (in sticking with the driving metaphors …) I want to know where I’m going and how to get there.  In my head, I’ve figured out the directions. Obviously when detours come along it really messes me up because I’m type A like that.  Going back to the words in this quote, when detours are thrown at you, and you begin to look at it that you’re on your way to the place you’ll like, it’s a lot less ominous. Even when you don’t know how to get there, and sometimes that is the best way to take the journey. 

 

How would you interpret these words?

Someday…..An exercise for you.

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Dear parents….

When your life has been thrown into chaos, it’s hard to picture yourself on the other side, enjoying the sunshine when the only thing you can see at the moment are the dark stormy clouds.  Even after those have lifted and your days get back to relative normalcy, there are (and in my opinion will always be) those times where for whatever reason you just find yourself right back in that moment where you feel an overwhelming sense of sadness, anxiety, anger and/or loss.  I hate those moments, they make me feel small and insignificant.  They make me doubt myself and they make my heart ache for control over something which cannot be fixed.

So here I am going to suggest trying a little exercise, and I would LOVE you all to try it too when you are feeling off or when times are incredibly hard.

First things first: Figure out what things are difficult for you at the moment and why. Write them out. These may be things that are hard to do or that you avoid like the plague.  Next, below each one, write “Someday……” and fill it with your goal.  Finally, write a line below it that says “my child would be proud of me for…………..”.  

While the goals can be general, the accomplishments should be specific when they are written.  They can be something you’re planning to do in the future to give yourself something to aim for, (for you planners and list-maker types) or they can be left blank and simply filled in when you have done something that fits the goal.

I know my own personal hurdles, but where you are and what yours are will depend on your situation. For instance a parent who came to the NICU recently will look very different from one who has been in and out of it visiting their child for months, and a newly bereaved parent will look different from one who lost their child years ago. 

Here are a few examples:

[fear/anxiety] I can’t Leave the hospital room/ Go home – [reason] I don’t want to leave the room/hospital because something may happen to my child and I won’t be there. 

[goal] Someday, I will leave the room for an extended amount of time.

[accomplishment] My child would be proud of me for leaving for 10 minutes to get some coffee

…..for leaving for 30 minutes to eat in the cafeteria

…..for returning home for a few hours to see his/her sibling(s)

 

[anger] I have a hard time seeing other happy couples with their “normal” pregnancy/baby {reason] because mine is suffering and its not fair.

[goal] Someday, I will be able to be happy for them. 

[accomplishment] My child would be proud of me for attending a baby shower for a friend

…. for sending a card/ note to my pregnant cousin

…..for asking that woman at the grocery store her baby’s name

 

[sadness] I am having a hard time making it through the day. I don’t feel like getting out of bed.I am missing my baby so much it hurts [reason] because he/she has died

[goal] Someday, I will smile again.  Someday I will be able to think about him/her without a complete breakdown.  Someday I will start to rebuild my life.

[accomplishment] My child would be proud of me for answering a call from my mom/friend/etc.

…..putting his/her picture on the wall

……visiting his/her grave

……donating to a charity in his/her honor

…..going back to work

……laughing at a comic /tv show /video/ story

….cooked a meal for my family

 

What’s the point of this you may ask? its simply to put some of the control back into your hands and to provide proof to yourself that you can and will make progress through even the toughest of times. You will be able to identify the whirlwind of emotions that are occurring.  Sometimes just separating them out helps because you can tackle one thing at a time and it may feel less overwhelming. Additionally, it may pinpoint some triggers for some of these emotions should you find you feel off balance. Look for patterns in what you’ve written. Plus, If you can see the things you think your little one would be proud of. Wherever you are at that point in time, there was a worse time before that, just look at what you’ve been able to do since you started! Are these jedi mind-tricks?  Perhaps.  But if nothing else, it’s a throwback to recognizing how you can help yourself.

For me these days, the most frequent emotion is being sad she’s gone and the goals are trying to do positive things in her name. My someday is “Someday others will find support and comfort from our work so that losing you will not have been for nothing”. And my accomplishments?? Well, most of those bigger ones are yet to be determined, but as a start, “my Delilah would be proud of me for sharing her story with others at the Promise Walk and connecting with parents who experienced similar situations”. I’ve come a long way from “Someday I will be able to hear that damn Plain White T’s song without crying”.  To be fair, at the time I didn’t think I’d be starting an organization devoted to her legacy either…

Someday is out there for you too dear readers, whether that is leaving the NICU with that teeny tiny preemie and starting a whole new ride, moving forward from grief, or something else in between. So the next time that uneasy feeling hits, take out your list, and find something you can do to help calm it and move towards your someday, step by step.

Don’t forget the fathers

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By definition a parent is described as a mother or a father.  If you helped to create a child with your DNA and/OR you are a primary figure raising them (holla step parents and adoptive parents!) you are a parent right?  SO, why don’t we think more about the DADs who have lost their children?  Its not that we ignore them, we may offer condolences, check on them, but not in the same way we console a grieving mother.  But we should….. here’s why:

Dads are actually doing twice the work, maybe even three times…… When a bereaved mother falls apart who is often her rock?  Her husband/baby’s father.  When a bereaved mother works to recover from the physical trauma of giving birth, who is looking after her?  Who is looking after any other children?  Who is going to work to keep up with the bills while the mother recuperates?  But who is there to take care of the bereaved father when the bereaved mother can’t?  Yes, I realize this is not always the case, but more times than not, it is.  Fathers are so busy looking after the mother, their grieving time is either cut short, or long long delayed.  That is no good for them.

Do we really expect grieving fathers to suck it up and be so stoic to pretend like it doesn’t hurt him just as badly, simply because they didn’t carry the child in utero?  I never did, but my husband took care of me and all the other stuff just the same.  Sure, we discussed our feelings and we sobbed together at times, but he just did all the other stuff, because someone had to.  For me, I simply couldn’t handle taking care of anyone else. Period. Its not that I didn’t care about his feelings, I did, but my emotional availability for anything or anyone else was zero.  Its rude to turn that around and expect the same from him, and I was lucky that he somehow found a way to do that, but I am sure it could not have been easy, and I’m sure it would’ve been easier if there was another person for him to lean on more through it.  Luckily we have a couple who we’ve known since college that had experienced losing their own baby so I know that our friend reached out to my husband often enough just as I cried to my friend (his wife) when I needed to….. I wasn’t privy to their conversations but I am thankful that he was there for my husband.

Sometimes taking care of others is how people cope with loss…. go through a day of “normalcy”, albeit on auto-pilot, or because they have to for no other reason than avoiding more financial obliteration.  But sometimes I fear men feel like they have to “be a man”, be strong for the woman….I won’t go too much into gender stereotyping here, but we all know its out there.  But I ask the question again, is that bereaved father still a parent? Absolutely.  So don’t they want the same support that is so accepted and freely offered to the mothers?  I think so. Don’t they have stories to share or pictures to show of their child?  Don’t they want their loss acknowledged? Aren’t they still angry at such an unbelievable atrocity?

My husband was right to know that I couldn’t fathom trying to do anything more than breathe for awhile to make it through a day in my own sorrow.  I am thankful for that, please don’t get me wrong, but I’m ashamed to admit that I forgot for a little bit that he was grieving too, in his own way.  Bereaved mothers are in middle their own catastrophic inferno so don’t expect them to speak up and remind others to talk to their significant others about the situation as they are processing their own.  However, wouldn’t be great if those of us on the outside looking in would try a little harder to offer the same opportunities to share and support the fathers throughout the experience? Don’t only ask about the mother.  Six words: “How are YOU coping with this?”  And if you know them well enough, you will know how to spot the obligatory answers from the truth.

There may be ways that you can help them without being all “kumbaya” if they’re not up for that too, just don’t forget to ask. Even if they’re not in a talking mood…… they may feel like breaking stuff, going for a run, grabbing a beer and sitting in silence, offer to watch their other kids so he can do something that makes him happy…..whatever it takes.  They need to get out of their own head sometimes too.

All people grieve differently, and some may not want to share, sometimes “okay” is simply all you’re going to get, but you can always offer to be there for the grieving father when he feels like talking about his child (so say so- as long as you truly mean it and are willing to have that conversation, as uncomfortable for you as it may be).  Or you can pass this little tidbit along: it’s a site dedicated to dads who have been through loss (for dads by a bereaved dad).. http://grievingdads.com/

So there it is folks, my PSA for today.  Don’t forget the fathers.

A Letter to my Post-Natally Depressed Self

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WOW. This is moving. And an exercise in forgiveness, acceptance, and healing; beautifully written.

Nervous PND Surviver

Hey you!

I see you there on the couch. Your dirty dressing gown hugged tightly around your shoulders as you stare vacantly into the middle distance.

I bet it feels like the first times in weeks that the baby hasn’t been screaming the house down. So now you don’t dare move in case you wake him. You’re semi-aware that now is probably a good time to grab a snack or a shower but you can’t move. The room is pressing down around you and you feel like you can’t breathe. I bet you can’t remember the last time you enjoyed something, or what it feels like to not be constantly worried about something, anything.

You can’t see the end of the next minute, never mind, the next hour, day, week and you certainly can’t imagine ever feeling like you ever again.

But listen, you will. You will smile, you will…

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Skokie/North Shore, we need you… PLEASE register to donate blood

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The Griffin Maks Community Blood Drive will take place on Tuesday, July 29th, between 2:00-7:00pm at Oakton Community Center, (program room west) in Skokie.

Summers are notoriously low for blood donations, yet the need stays the same year round.  The Maks family wants to honor their little boy Griffin by doing this blood drive because they know without blood donations, he would not be in remission from the leukemia he battled for years.

if that’s not enough to encourage, we’re also making it a celebration! Raffle, treats, and goody bags for our donors, plus meet the guest of honor as he gives out lemonade! Childcare will be available for parents who have the kiddos with them while they donate.

Appointments are preferred, though walk ins will be accommodated as quickly as we can. Please let me know if I can sign you up.  Here is the flyer: Griffin Maks Blood Drive PDF

Could Haves, Should Haves

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The founder of the Zoe Rose Memorial Foundation (and my mama friend) Keira Sorrells wrote a guest post for Preemie Babies 101 called “If Only I Had….”

As I read, I found myself nodding and sighing. I think every parent, both moms & dads, face this at some point after the loss of a child, or even during their illness. You rewind and think about every little detail, and what you missed.  As parents, we’re programmed to protect our child, and we [seemingly] failed at that when they are lost.  In the preemie world, most times there is nothing we really could have done to prevent the outcome.

It’s harder to grasp that concept, because we are human, we feel so passionately about being responsible for our own lives and actions….we take control, we are driven to work for anything we want out of life, and we honor, and fight with great ferocity for, our ability to CHOOSE [anything!].  When things end in tragedy, and it’s impossible to clarify WHY, we can’t just throw our hands up in the air and go “oh well”.  We feel responsible. I found myself doing the same things with Delilah.

Why didn’t I mention that she had been lethargic earlier?

She got sick a two days after I had left the hospital to spend a few days (2) at home with my other two children & husband.  I’d been there, camped out at the NICU, for 21 days…since our home was an hour and a half away from the hospital, I was fighting leaving every step of the way because if anything happened I’d likely be too far away to get there in time.  Of course, when she got sick those fears materialized into guilt. “I left her and now she’s dying. I should have been there.”  It didn’t matter that I had already been back when she got sick, it didn’t matter that her brother and sister and dad needed me too. It didn’t matter that I probably needed the break from that environment.  All that mattered was the fault I found in myself for leaving, and I was paying for it dearly.

Was it rational? Of course not, but what the mind knows and what the heart feels are very different.

Why didn’t I know that I was sick? / Why didn’t I recognize the signs of pre-eclampsia? Then I could’ve noticed it earlier and we could have done something to minimize it and then she would maybe have been able to be in utero longer and would have had better chances of surviving….

IF………THEN….. only continually proves true in mathematical equations.  Life is just not ever going to work out as clear cut as that, because of all the factors involved, expected and not, explained and not, and circumstance.  You’ve heard of “the perfect storm”? Well, each case of a lost preemie baby is just that, the perfect storm of factors that effect the circumstances of that specific child.

Its normal to feel the guilt, and sometimes it gets the better of you, and Keira’s words here still ring true. I can’t tell you to not feel guilt, but I can agree with the fact that eventually you can choose to set it aside.  In any course of grieving you have to let yourself feel however you are feeling, rational or not.  So ride through the emotions, and point #2 she made is so true. Sometimes, even for a moment, focusing on the love that you had for your baby will bring solace.  It is and always will be there, and no one can take that from you, not even the could haves and should haves.

The worst thing you can say……

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You may think that you will say the wrong thing.  You may think that avoidance will make your interaction better. You may thing you will shatter a bereaved parent’s world all over again by the very mention of their lost child…. But you would be wrong.

True, it may be hard for them to hear the name, to remember their little one in the world before everything broke, and to share about their experience of losing one whose life they hold more precious than their own.  But the absolute worst thing you can say……. is nothing.  

I have had this conversation with friends who were unsure how to approach the subject, but I have always reminded them that speaking about Delilah was not an off-limits subject.  Sometimes it brought tears to my eyes, and sometimes it brought smiles.  Sharing her with others was/is part of my recovering, but I will never be angry at someone for the mention of her name. 

Parents NEED to know that their supporters are behind them and willing to talk about the uncomfortable.  You don’t need to worry about saying “the right thing”, you just need to say SOMETHING.  Even if it’s “I’m sorry”, or something as honest as “You know, i don’t even know what to say, but I am here for you.”  I have been lucky enough to have friends and family that do this, and I’m sure it’s helped with my own grief, but I have talked to other parents who have sadly not received the same support, and they suffer more because of it. So I beg you, if you truly want to be helpful….

Say SOMETHING…. ANYTHING that will acknowledge the loss and the child.  Even if you can’t quite comprehend the loss on the same level, understand that this makes us know you are trying to empathize.  Simply not discussing it and/or hoping it won’t come up is bound to do damage to your relationship with the bereaved parent.  So do that relationship a favor and bring it up.  We (bereaved parents) write blog posts in hopes of sharing, we write books, we get tattoos, we wear memorial markers in jewelry or other such things as subtle hints that it’s truly OK for you to bring up the lost child.  No really, it IS ok.  If it were an off limit’s subject, we will tell you if it’s not the right time, but 98 percent of the time, we are proud to share with you, and even happier that you asked.  The entire conversation will not be about the child (especially as time passes), but even the brief mention, will mean the world to that parent.

This will be part of our push at the Tangerine Owl Project’s October SPARK (Supporting Parents through Awareness, Respect, & Kindness) Remembrance Event this October.  Take the taboo out of conversation about uncomfortable things.  It sucks, it’s tragic, but it happened, and we need your support, so SPARK the conversation with those who need you.

SAVE THE DATE: OCTOBER 4th PREGNANCY & INFANT LOSS REMEMBRANCE EVENT

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Chicago area friends, please SAVE THE DATE:
The Tangerine Owl Project’s pregnancy & infant loss remembrance event will be held on Saturday, October 4th in the Skokie/Evanston area, a few hours in the late afternoon until just after sunset….. More details to come soon!

If you know parents who have lost their babies (including miscarriage and stillbirth), please have them get in touch with us, and spread the word! They will be in good company.