I brushed off Thanksgiving but have found myself in an emotional tailspin as Christmas approaches. Christmas is my favorite. I am flailing about and throwing my arms and legs out hoping to catch something to help slow down the torrent of pain that seems to attach itself to this holiday.
At the risk of sounding a tad cliche, holidays are time for family. Set aside for reflection and a reminder to give thanks for the people who surround you but now holidays are hard. For most of us there is an empty spot at the table and one less gift under the tree. There are a million reasons to miss the people no longer earth side and those reasons tend to sneak up and throat punch you, right about now.
The first inclination of how bad Christmas would hurt is when I noted all the specially, monogrammed stockings at Lollys house. All lined up, in my moms winter wonderland, are large red stockings with all of her grandbabies, with the exception of Piper. Now I feel it very important to tell everyone that my people never leave Piper out of the head count or conversations. No one flinches as I casually discuss her or randomly appear red eyed and puffy. Many a time do I find one of them crying in silent remembrance of our baby. But man the missing stocking sent an abrupt reminder of how our first daughter will not be here at Christmas, or ever. I cried, my mom cried.
I thought a good way to spread Christmas cheer would be to drop some holiday goodies off at the NICU that cared for our Birdie. I had been a tad fearful that it might stir up my always present anxiety but grinchy old grief had a different idea. Pulling in to that parking lot, I was flooded with what it felt like to walk out of that hospital in my mismatched PJs, belly still soft, without Piper. I remember the shirt I was wearing and that my shoes were untied. That I couldn't take off my hospital band because it somehow linked me to her. I sat in my car reliving those details until I could pep talk myself in to the hospital. The gift made it in there but I probably frightened the nice girl who accepted it with my Rudolph nose.
Despite all the tears and the pending holiday, time has gifted me strength and an improved self awareness to appreciate where we are in life. Last Christmas, I had set up camp in a deep, dark hole of depression. My anxiety hit a climax with a medication worthy panic attack on Christmas Day. We were trudging reluctantly towards another year, our first year without Pipes. I now reveal in the light and am genuinely happy as new version of myself. Happy. A word I thought was lost to me. A feeling that was so foreign I could not even accurately name it when it slowly crept back in. The darkness still comes and threatens to be all consuming but I have the tools to grieve and live my best life simultaneously. If that's not something to be thankful for then what is?
There will always be one less present and one less stocking. One blonde missing from our line-up.
Piper died, but with grace, we are alive.
So we hang her ornanments and say her name while holding our rainbow a little closer each day. Birdie is not a replacement for our Piper girl but a reminder of how grand life can be. We can only hope that you all have a joyful time of year and we thank you for being a part of Piper's tribe.
Merry Christmas and rest easy our darling girl.
Oh where to begin? I've opened and reopened this post, cried and shut it because ya know, the feels. A lot has been going down in the Bennett tribe and I thought I'd grace our extended tribe with updates. The holidays snuck up on us, like they always do, and sucker punched me right on in the gut. Halloween and Thanksgiving gave me emotional whiplash as I soaked up my new brand of firsts with Birdie and continued to grieve Pipes. Sunday, I hung my tiny, red P stocking on our tree feeling sweaty, nauseous and really sad. How is it even possible that there will be another Christmas without our Piper girl? I can hardly type it because at this time last year I was belly crawling through life desperate to survive. If you thumb back through last Decembers posts, the pain we felt was insurmountable, hanging on to everyone's holiday cheer, battling panic attacks at family gatherings while buffering life with champagne punch. Birdie B. is pure heaven, brings endless joy and so so much hope that we are excited about all things Christmas. Even though she could care less and her presents are really my presents. It's, for better lack of a word, weird to feel oh so happy and oh so sad in a second.
I went back to work (part time, barely, thanks Beau) Don't worry I have loads to say on the subject and I'm slowly working my way through those feelings. If you are a stay at home Mom, you are my hero. It can be hard and isolating and scary. Driving in my car, to and from work, alone is the time I let it all fall away. I bring those hazy moments in to clear view and dig in to the too few memories I have of Piper and replay them over and over in my head. I don't hold back on the ugly cry or snot. I stopped putting mascara on, again.
But what I really had on my heart is what a fellow PAL mom touched on in her blog post.
Rainbow babies cry.
For those of you less familiar with the term. A rainbow baby is a baby born following a loss.. a rainbow, a promise after the storm. I fought the term for the implication that Piper girl was a storm to weather but began to embrace it as the grief that followed blew like a category 5 hurricane. This time we were all were so focused on my pregnancy then the NICU, by the time we brought home a 4 lb 14 ounce Birdie Bennett, Beau and I looked at each other like
My rainbow baby is, a baby. She needs all the baby things and shows a strong preference for 2 am parties where she cries and one lucky parent paces the house. I was under the impression that she'd be that, a rainbow trailed by butterflies and soft music. She'd smile and coo and sleep at night. You laughing? You should.
By my third sleepless night, where I sat straight up
on the couch in a fully lit living room watching the rise and fall of her tiny chest until exhaustion won and I'd dozed restlessly for moment or two, decidedly Beau or I would sleep in shifts. Don't worry we now ALL sleep in our room with her bassinet within reach. It's Birdies world and we all live in it. Sunday night, we all had an up til 1 am jam session and two wardrobe changes.
She cries. Granted no more, no less then the average tiny person but it goes down. She has a healthy set of lungs that we prayed over, and likes to remind me of a sleepy me asking a NICU nurse "why doesn't she cry?". Fun fact: sometimes NICU babies and in Birdies case a baby with a feeding tube , who was cared for and fed round the clock had NO need to cry.She now looks at you adoringly then unleashes a banshee like shriek.
Yes, we are completely smitten with her and even in the depths of her banshee nights very much in love. But I'm here to tell you, your rainbow baby, is a baby. We do ordinary things like panic when she won't stop crying or sleep. Beau and I have had less than romantic conversations circling the color of poop, how much she drank, what's the teeny red mark on her face. We've bickered about who has and hasn't slept more and who did what last.
There was this unspoken expectation (by all, me included) that upon her arrival, I'd be "normal" or as close to it as I was prior to babies. False. The anxiety was at an all time high. I had spent my entire pregnancy coping with Pipers death and in a hyper vigilant state. I couldn't turn it off. I was humming. That's how I describe the feeling, ready to jump out of my skin drank 13 cups of coffee, crazy. I'm working hard to turn down the volume and it seems to be working with a lot of help from my tribe, with Beau, Lolly and my counselor heading the charge. They held up a mirror to my unsettled behavior and made me take a deep look at myself. Beau is the calm parent, go figure. You laughing again?
So no actual rainbows over here. She is our miracle, she is a baby, a delicious dose of real life. My ordinary journey as a mom, fills my heart to the brim. If I haven't bored you enough, I can regal you with what I ate for lunch.
Rest easy PKB.
I am a feelings person. I have a lot of them, I over share and bore Beau to no end telling him every second how I feel about something or other. This is why this stage has been hard for me. I find myself crying often, my grief bubbling over and mixing with love. I have a difficult time explaining exactly what this particular tidal wave is comprised of but there goes nothing.
Life got real, real busy with our tiny miracle. Busy to include the run of the mill things like diaper changing and late night feedings but mainly just falling more and more in love. We spend hours smacking each other or calling "babe, babe" to witness her gummy smiles. She finally helped me to accomplish the task I'd been striving for, get busy living life, and in such a less forceful way. Like an honest breath of fresh air.
My new role to our daughter earth side, left me with less intentional time to grieve. Your rainbow baby fills your arms and bandaids your heart but that wound still exists. Those wounds still need attention and in order to do so I've had to compartmentalize the pain as to fully embrace what motherhood looks like now. As a feelings lady that's been a brand new challenge. I remind myself that I carry her in every move we make because she shaped my new existence. I truly believe that she saved her sister, and in turn gifted me Birdie. Again, Piper lives in everyone who loved her because her brief existence touched them too.
It's hard to admit how gutted I feel about Halloween. I know it's Halloween. I have an old blog entry, that I never shared, highlighting how I wandered around Target a lot during my leave after Pipers death. One particular day, last October, I had escaped to the Target one town over so I wouldn't see anyone I knew and found myself openly sobbing at the tiny pumpkin costumes. Subsequently scaring the heck out of some male shopper in the next aisle. I was sad and majorly pissed off that I wouldn't stuff my daughter in one of those costumes and scam candy out of the neighbors. I whispered to myself "Piper died but I'm alive" and took my niece trick or treating, who happened to be the cutest darn pumpkin in town. I regularly faked it until I made it.
Here I am, I made it but am still confused how it could hurt this bad. I'll be over here whispering the same mantra "Piper died but we are alive" and plan to stuff Birdie Bennett in her pumpkin costume.
All the feelings.
Rest easy Piper Kai.
October is infant and pregnancy loss awareness month. I wanted to talk a bit about what it's like to be a family of four but look like a family of three. Carrying another baby helped me cope with Piper's death. I've talked a lot about the earth shattering fear I've lived with the past (almost) nine months but haven't touched on the healing aspect of growing Squeak. It gave my heart another chance to expand. It gave my body and mind another important task.
We miss Piper. I don't think there will ever be a day in my life when I don't think of her or weave her in to my day dreams. Beau and I talk often of being parent to two baby girls. We like to fantasize what it would be like to parent them, just 12 months apart. The fun, the love and the challenges of maneuvering two car seats in the back of his fancy car, (that I'm not allowed to eat in or drive for that matter). Today my arms feel extra empty and I feel sad that I missed out on being Pipers mom as she grew up.
It's the now heavy reality of knowing what I am missing. Beau and I spend a lot of the day gazing at Birdie and yelling to one another to come swoon over typically baby things like yawning. Many times one of us come dashing from room to room to witness a gummy smile. I had imagined all the things I would miss now that I'm experiencing them with Birdie it adds another layer to my grief.
Having your rainbow baby baby helps fill your arms but it can never replace your babies. It occupies your heart but it can never repair it. You get to love extra because you have survived the unimaginable. I've typed and talked about how you don't need to know pain to know love but for me it feels so intense. I have to pinch myself, not only to stay awake, but to remind myself that I am truly a mother to a living, breathing miracle. That's not always the case though. Sometimes there isn't a rainbow after the storm but you still have to fight like hell through the pain.
We find ourselves accidentally calling Birdie, Piper. In fact our family, friends and even a nurse who had heard me speak at the stillbirth summit did it in the NICU. Sometimes people don't even realize they have done it. You might think that's horrific and painful but I count it as a victory. I have successfully told our story and spoke of my child so often, that on occasion, her sister is called her name. Piper lives in all of us. Her story will never die.
Rest easy my girl.
After Birdie was born, she was transferred to the neonatal intensive care unit or NICU to immediately address her respiratory distress. Along with her immature lungs, she was thought to have aspirated some fluid during her abrupt entrance in to this world. There were some complications during my c section that resulted in Squeak being yanked a few times from my rib cage. She required breathing assistance via a CPAP for about 24 hours before she was weaned off oxygen for another 3 days.
After my blood pressure stabilzed, my hospital bed was wheeled to the NICU and I was allowed to see my tiny miracle for about 5 minutes before being taken to the postpartum unit. Again I was without my baby in my arms, but she was alive. They told me to sleep. Yeah. I stared at the clock willing the feeling to return to my legs so I could crawl to my child. I called the NICU every 45 minutes to ask about our baby.
The anguish of our first child dying and then watching Birdie struggling to breathe was enough to crack the strongest of people. This experience has easily shaved 10 years off my life and there will never be enough concealer to rectify the bags under my eyes. When Birdie started experiencing apnea episodes and I watched all of her numbers plummet and our girl essentially hold her breathe, I do not have the right words. It's a special level of fear hearing alarms go off and everyone rush to your child's bedside. I wanted it to be me. I begged for it to be me. It's watching your heart beat outside your body and you can do nothing to control what is happening. Fortunately the staff realized very quickly what this issue was and the appropriate medication administered.
The medication thankfully resolved the apnea of prematurity issues immediately but I'll watch her breathe until she's 18.Then we tackled the bottle feedings. Preemies have difficulties coordinating the whole suck-swallow-breathe situation, while eating. My kid didn't even get a go at a bottle for 8 days due to oxygen needs. Thanks to a mighty NICU speech therapist, my kid can now eat. Eat a lot. At 4 am. Fun side note. I AM a pediatric speech therapist and MY kid ate better for the NICU speech therapist, Beau and pretty much any nurse. I sobbed in my car on more than one occasion.
Thats what the NICU feels like. Holding your breathe. Waiting for the bad, waiting for the good, waiting. Tip toeing through the day. Counting every mL drank and the scale move up by grams. I've googled how many grams to an ounce, ounce to lbs more than I care to admit. The NICU is driving away from the hospital, trusting other people (very awesome,capable people) to watch your baby so you can have a break from the hospital room. The NICU is walking past the well baby nursery, top full of crying, fat babies and grieving your birth plan. My birth plan did not involve my guts being removed. I've had one baby vaginally and one via c-section. Folks, c-sections are not the easy way out. I'll post about that on a later date. It's fighting the guilt. You should feel nothing but happy and gratitude for your tiny baby but you can't help but cry.
The baby blues are a real thing. I cried over everything. We are on high alert for any post partum anxiety or depression as parents who have experienced child loss are at higher than average risk. I am pretty in tune with my feelings but I still have a counselor and my family keeps an eye on things. My hormones are a little more even now but I just cried because she's another day older so there's that.
The NICU is hard on your marriage. While Beau had all the faith in the world about our medical team I felt the need to be there every second I could. I would get really snippy about having to leave and I'll give you a guess who had to deal with my madness. I'm sure I set a record for the number of questions I asked or things I worried about. But I'll continue to stand on my soap box about how love conquers all and marriages should evolve, bend to withstand life. I made a grand life choice in making Beau my partner, he is for sure the calm to my storm. Love you babe.
The phenomenal NICU nurses, Beau, families and our well established tribe helped me keep in together as best as possible. Reaching out to a friend who had two babies in the NICU was a vital life line. Having someone tell you it's ok to cry for 12 hours for no reason or for a reason helped me to feel validated.
If you ever know someone or are someone experiencing a NICU stay I'd be happy to talk to you and have a party over every mIlliliter your kid drinks. Every day that monitor doesn't sound. Cry with you. Bring you a beer.
Im grateful our NICU stay was 21 days. I know many a brave families experiencing longer stays or parents of babies with critical issues. I'll tuck you right in my heart with my girls.
Rest easy Pipes.
My tiny miracle, our rainbow of hope made a dramatic entrance via emergency C-section, August 19th at 8:55 p.m., at 35 weeks and 1 day. Weighing 4 lbs, 9 ounces and 17.25 inches. She immediately opened her eyes and Squeaked.
Our birth story is a scary story with a very happy ending. Let me tell you how kick counting saved my baby.
Early that same day I noted baby bird was moving less frequently. After monitoring her movements for an hour I was overcome by fear and an extreme urge to go to L&D. Call it mothers instinct. I had counted kicks several times a day since week 28 per our doctors suggestion. If you are not familiar with kick counting, it's when you pick 1-2x a day, when your baby is most active, to monitor their movements. You should ideally feel 10 movements in an hour. I used an app on my phone or a post it on my desk. Birdie, like her sister, was very active in utero and rarely made me "worry" about lack of movement. Typically following cold water and a lay on the couch, I would get 10 movements under 10 minutes, but never longer then 30. I felt 3 in 45 minutes.
My mom drove me as Beau was out of town for the day. It was the longest drive of my life. Upon arrival to the hospital, I began to hyperventilate and experience the worst panic attack of my life, fearing the absolutely worst. I was in respiratory distress by the time I made it to L&D and immediately hooked up to a fetal doppler, revealing a slow but present heartbeat. Initially they said she was "sleeping" but I knew my baby and knew that heart rate was far too low following the dozen or so NSTs. I adamantly said over and over, very loudly, that something was wrong. Fortunately, my concerns were not ignored and my doctor was paged. Slowly the heart rate began to decline. I was flipped on my side and pumped full of juice in an effort to wake baby. I required oxygen as I continued to hyperventilate. "Deep breathes" the nurse chanted. An IV line was started and baby did begin to show some small accelerations. I can not even begin to explain the fear. Two of Piper's nurses were there and took turns sitting with me on my bed as my mom tried to keep Beau up to date.
Doctor arrived and started a biophysical profile. After baby did not move for several minutes she exited the room and returned very quickly. "Ready to have baby, today?" She had confirmed with our speciality team that baby was in distress and was better out out than in. As I briefly panicked about having a preemie, my doctor said we have everything to lose by leaving her in my belly. Things moved fast from that point as I was prepped for surgery.
Beau was racing down down the interstate to be by my side as I sat in the brightly lit operating room and my spinal tap was put in. I'd like to say I was handling this with grace but in reality after I was numb, I began thrashing around in panic. I couldn't feel anything from chest down and while that's the game plan the loss of what little control I had went out the window. I began screaming and needed to be strapped down. And later medicated. The amazing surgical team kept telling me this was to save our daughter. My mom sat with me as Birdie was delivered, with a yank and a squeak. Beau entered the room as they lifted her above the screen. She was breathing on her own and had a heartbeat, not needing resuscitation, but needed a few minutes to fully come around.
"Happy Birthday", said our doctor. Silence. "There's a true knot in her cord".
You can read that line as many times as I've replayed it in my head. The anomaly we had been assured would not reoccur, almost claimed our second daughter's life. We have been told in is a 1 in 10,000 occurrence, and we should be things of medical textbooks. Lightning struck twice, but this time I was ready.
With all the testing we had done, kick counting and motherly instinct is what saved my daughter. Theory is when she flipped back breech she pulled her cord too tightly, similar to Piper except that she pulled hers engaging for birth. It's also their thought that it was tight enough to restrict growth but not tight enough to register on any of their tests. We are hoping to have more answers at our 6 weeks follow up with the specialist. The rarity of this may have an underlying genetic component. She had consistently measured in the 2nd percentile but was born closer to the 13th with her head in the 75th, gestationally our neonatologist believes she was closer to 34 than 35 weeks.
Without Gods grace, our daughter would have lived only another hour or two. I can't focus on the fact too long or I won't make it. The responsibility is too heavy and the what ifs too much to handle. Birdie is HOME following a 21 day NICU stay, secondary to prematurity. She is a born fighter. She's now 5 lbs 2 ounces,18 inches of pure JOY. She is everything and more that I've dreamed about for 8+ months, for my whole life.
While it will never be fair or make sense as to why we don't have our two blondes together, in this life. Piper sent Birdie to us and gave me the knowledge to save her sister's life.
Rest easy Piper Kai Bennett, we miss you everyday.
I've started this entry so many times. It's difficult to organize my thoughts. My journal entries are messy. The are full of incohesive lists, thoughts, bargains with the universe and in the most recent ones loads of swearing. The indentifiable downfall following Pipers day, coupled with third trimester anxiety made a perfect storm for a deep state of sadness. I've been akin to an obese sloth, moving as little and slowly as possible.
I went in to my biweekly appointment a few weeks ago, on an upswing and eager to sneak a peek at my tiniest nugget. Fluid levels all fine so off to our NST. We got high marks on our heat rate test and as I'm feeling smug, the doctor came in with my ultrasound in hand. Moms out there, you get that feeling things are about to go down? Doc says, they found something ""concerning" and wanted me to follow up with our specialty team that Monday. We were already heading in to see our MFM specialist Monday to check growth. He says "don't worry". Yeaaah. I hate to be vague especially when we are so open about our PAL journey but I can't even go in to the details without shaking. I googled myself right on in to a panic attack. Not a figure of speech, an actual panic attack, with respiratory distress and all, where I could not drive my car out of the office parking lot. Mama Bear Bowen has since nixed anymore appointments without an escort.
I spent three days crying on my couch. Driving Beau within an inch of what little sanity he has left. My anxiety finally got the best of me Saturday evening. I felt that Squeak hadn't been moving enough so I had my Beau drive me to L&D. He drove fast.
Neither of us had been on that floor in the hospital since we had left without our big girl over a year ago but my concern for Squeak was in the forefront. A potentially crippling move became a mission. One of Pipe's nurses was working, immediately recognized us and ushered us back to a room. Once the monitor was on the little bugger kicked up a storm and her tiny heart beat registered strong. All was well. The nursing staff was so very kind, reassuring us coming in is always the right thing to do. Expectant moms, trust your gut, go in immediately. You will not be that patient or an inconvenience to anyone. You are your only advocate for your baby. Babies move differently but movements do not slow down.
The level 2 ultrasound on Monday, could not even locate this "concern". It was a complete non issue. What I should type here is my sense of relief but the emotion that I defaulted to, was sheer anger. I want to blame someone for the recent onset of anxiety, but all everyone is doing is looking extra close at our baby for safe keeping. So I'll settle on down as relieved and happy she continues to thrive. If you've been following our story, Squeak has kept us on our toes via several ultrasounds. The remainder of the hour long ultrasound revealed a healthy baby. All blood flow dopplers, within normal. If you have never had a blood flow doppler you should investigate this modern miracle in which they check the blood flow between me and Squeaks various organs. This is particularly comforting to me as Pipes cord was the issue.
Big doc in charge comes in to chat. Squeak looks good but continues to measure on the lowest end of their growth chart. Now mind you, our second kid has been small this entire pregnancy, but took a little dip this past month. The doctors prescribed modified bed rest. The theory is more immobile I can stay, the more blood flow and good nutrients get to our girl. The less hard my body has to work for every day things like work and exercise the more energy can be spent growing her. I'm allowed up for short periods of time. I need to be sitting and ideally laying a majority of the day.
I can hear you through my computer. Wow, I wish someone told me to lay about, eat all the things (ok high protein, ick), relax and get more then your fill of reality TV. Sounds nice in theory but a solid recipe for cabin fever. I am hoping it will help alleviate some of the stress this trimester has introduced.
It was certainly a turn of events. Squeak and I will be here on the couch completely our mission: grow a fat baby for two more weeks then we will make some more decisions about her arrival. I have emotional whiplash but intend to be the best couch potato, ever.
Rest easy PKB.
How am I here? One year since my little, blonde baby died. With her Daddy's nose. I used to ask that question of myself almost daily. How did my daughter die? Will I die too? Thankfully not actually but in that soul crushing way that there is no return. We've spent a year clawing our way out of the pain and why there is always cause for it to resurface, none like the anniversary of her death.
What do you call it? It's not a birthday because she wasn't born. What day do you choose to mourn, the day she died or the day I was fortunate enough to hold my perfect, yet still child and give her a proper good bye. I still can't answer, I felt the shock wave coming for weeks. She passed on Monday, July 11, 2016 and was delivered Thursday, July 13, 2016. Piper's Day.
I felt this scary regression unfolding in our lives. I began to pull away, to hide and fear social contact. Others noticed our odd stand-offish behaviors, mimicking those first months when I couldn't hold a conversation. Where my daily goals included getting out of bed and eating at least one meal. When Beau coaxed me from the house with 11 p.m. drives and promises of coffee. Days when my mom would come over at 4 a.m. so that Beau could get some sleep away from my sobs.
We were asked about our plans to celebrate our daughter's short life, I'd answer, I have no plan as I couldn't even handle the pressure of the plan. I'd like to say I handled the first anniversary of her death with polish and strength but I didn't. I wandered around my house in my pajamas, unkempt. I opened and closed her memory box, holding her tiny knit hat, howling and cursing the universe. Ate very little and showered even less. Became manic, cleaned the bathroom and nursery. Put together the half finished swing. Cried again. Read every condolence card, note or letter addressed to us or Piper. Often irritable and snapping at my sweet, Beau, while he struggled to keep his own head above water.
The pain engulfed me and I didn't fight against it. I lived every second preceding the anniversary of her death and entrance in to the world in fear, as our lives aligned with the dates. The holidays and birthdays ticked by until it was staring me in the face, daring me to fall off the ledge. I didn't fall, I jumped. I'm thankful I did because taking the time to come undone left me once again standing on the other side with my family, my tribe and a bouncing Squeak in my belly.
I kept my promise to our daughter. We have continued to live our life, full of love and happiness, with a newfound gratitude. I don't mearly exist, which was my deep seaded fear. I have learned to artfully carry my grief, to coexist with it and my life. I am proud of that.
They say time heals all wounds. I do not agree. The wounds remain. In time, the mind protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. -Rose Kennedy.
Reat easy my darling Piper, until we meet again.
This was not an easy one. My generic pregnancy app says this was supposed to be the honeymoon third of your pregnancy. If you are the author to this piece then congratulations, I'm now the driver of the struggle bus. The driver who eats entirely too many donuts and has all but abandoned the gym. Typically as a pregnancy progresses, there is a feeling of safety in the anticipation of your baby, mixed in with general fear about labor. In this pregnancy, I'll admit I've been very focused on the actual pregnancy that I sometimes forget the possibility of bringing home a tiny creature to whom I will be their life force.
There has been an increasing amount of anxiety this past few weeks, as I am now in the final trimester. It's sometimes triggered by the tug of war to nest and fear to get too far ahead of myself. This desire to keep her in there and the selfishness of wanting her in my arms, at the safest and earliest moment. I've made big moves in purchasing a few small items for Squeak but I'm careful to arrange them on Piper's nursery floor. I've talked with my tribe how the nursery is a particularly paralyzing step for me.
Squeak is a mini ninja and graces me with fierce little jabs, mostly aimed at my left ovary. With the kicking came a round of anxiety I was prepared to encounter. The only way I knew something was amiss with my first miss was a lack of fetal movement. If she gets quieter then I'd like I chug juice, lift my shirt up and put my hands on my bare belly until I wake her. I have an odd habit or tic to keep a post it note on my desk and make note of her movements throughout the day. I get busy treating patients and panic, I refer to the post it. It's an illusion of control. The anxiety about her movements has greatly impacted my sleep patterns. Hands up for insomnia. I'm typically awake between 1-3 am watching bad TV. I am convinced Pipes passed away when I was asleep so I wake at night I have to feel Squeak move before I can return to sleep. There are some days when I have a strong desire to lay around and watch my belly roll. Not for nostalgia but out of fear.
There continues to be times when my grief still rocks my world. It can still be mean and manifest out of nowhere. Recently a time hop photo of me a year ago on the day of my baby shower, beaming, 34 weeks along, arms linked with my best girls ignited a day long crash and burn. I try to embrace the grief and cry when I feel moved but I'm fearful of the pain her birthday will bring and have already started to prepare my heart for the tidal wave.
All you high risk moms to be out there, I applaud you. Not only for being a brave woman but for surviving each doctor visit. With Pipes I remember the eager anticipation of doctors visits to hear or see my baby. Now I have anxiety attacks, pace lobbies and cry to receptionists, who apologize to me when they are running behind schedule. A doctor told me Piper had died so by no fault of theirs, I'm always on edge, waiting for someone to say something scary to me. I earned my first NST (non-stress test), where Squeaks heart and movements are monitored for an extended time. I lost what little cool I had when they wheeled in that machine, as it was being hooked up to one in the hospital is when they told me my Piper girl had no heartbeat. Three cheers to my nurse and OBGYN holding my hand while I had a nervous breakdown. Squeak passed with flying colors, kicking the doppler all along the way.
As much anxiety as I've shared, I wanted to balance that out with a statement about how perfectly "normal" I can feel. It continues to pleasantly surprise me when all of a sudden I'll stop and think "Hey I'm not having a panic attack" or "I just grocery shopped without having a meltdown". Beau and I talk names, speak to Squeak through my belly and buy tiny baby rompers. Beau is even threatening a mini van.
I make a conscious effort to participate in positive self talk about both mine and Squeaks health. A trick I've discovered is having my Mom or Beau recite back to me what the doctor has said. Hearing it aloud rather than in my own head lifts any negative fog. I try not to go to too many doctors visits without my people. My smart husband pointed out today that I ask so many questions at appointments that I end up hearing the worst case scenario. Our MFM gave us great news today, after I forced myself to be an active listener rather than coerce them in to scaring me. Make sense? Lady squeak, although small, grew a ton and is looking healthy!
Physically, I had a lovely break from sicking around 20ish weeks. It still gets me sometimes. I'm obsessed with my growing, round belly but the weight gain is hard. I keep having Beau hoist me in to the air to prove he could move me in case of emergency. Mostly it makes me giggle. Cravings include all cheese based foods, Glazed chocolate cake donuts and beer. I smell everyones beer and dream of kicking back a cheap, cold one. Salads make me sick, actually sick. What is it people say, I'm just a girl standing in front of a salad asking it to be a donut? Nope I just eat the donut.
We started our twice weekly visits this week. I guess what I'm trying to say I'm all this is I'm doing my best. That's all I got. Keep those good vibes coming.
Rest easy Piper Kai.
Most of my interactions with health care providers and professionals have been gentle and tailored for my needs following Piper's death in July. There are certain professionals that I encounter and hope not to explain the details of my child's passing. I only had to correct a nurse at my new OB/GYN's office once that my kid was not a "fetal demise". She was a baby and her name is Piper so go ahead and write that in my chart. I can already tell you our specialty clinic has ANGRY MAMA BEAR:BEWARE or maybe nervous turtle scribbled on the front of my chart. I also don't want to explain to a my PCP or the nurse practitioner I typically see on my lunch break how I have, yes had one pregnancy. No, no live births. The first time I met my counselor, I didn't really say anything just sobbed for our hour session.
I went shopping for new Doctors. Did you know you can just meet a doctor and vet them like a political candidate? I vividly remember telling my counselor how my husband said I don't have to come back like a small child tattling. She handed it like the pro she is. No, I don't blame my former OB for Piper's death. Not even a little. I needed a change. I did not need to be reminded of how my daughter died every time I had a pap smear for the rest. of. my. life. The anxiety that the building incited was off the charts. I was already on my way out when I received a phone call on December 8th asking "How the baby girl was doing?" Go ahead and pick your jaw from the floor. I am a fairly rational person but the follow up phone call to that statement was just shy of insane. Once I had calmed down, several days later, I drafted and sent a letter to both my physician and the office manager. I have kept that message on my phone in case I need the strength to move a car off someone. I have included the letter below:
I hope this letter will assist your office staff during their interactions with families who have experienced child loss.
My name is Natalie and I have been a long standing patient with your practice, nearly 12 years, with Dr. M. heading my care. Following a happy, uncomplicated pregnancy; our girl, Piper Kai Bennett, was born still on July 13, 2016. This was my first pregnancy and I was just over 9 months along. She was a beauty, 6lbs 4ounces, 20 inches long and blonde like her momma. I hope you are not privy to the anguish that follows a stillbirth and I do not think the letter could adequately express the grief my family has endured nor the hole in which I have crawled out of in order to participate fully in life.
On December 8, 2016, I received a voicemail from your front office staff inquiring “how you and the baby girl are doing” and to remind me of my annual appointment. I became upset to the point it was necessary to pull over my vehicle. I called your front desk staff immediately and through heavy tears attempted to explain my child’s death and that messages, such as these, are traumatizing. I was too emotional to fully explain the magnitude of this oversight. I am concerned, how in the year 2016, with electronic medical charting that my trauma is not listed in bold, red letters to allow for some careful handling.
I realize people make mistakes. I choose to believe that people are mostly good, kind hearted and had this been the first incident I would have been willing to overlook it; however this event is not isolated. On July 11, 2016 I called around 0900 to speak with a nurse, with concerns about lack of fetal movement. At 0945, I drove myself to L&D where her death was confirmed. I realize that she had passed prior to that 45 minute lapse in time. What I am fearful about is the lack of consistency and protocol for dealing with patient concerns.
On July 14, 2016 your office called to remind me of my prenatal appointment scheduled for the following day. Now working in a hospital, I can understand that your computers had not been updated as Piper had died earlier that week but we called to lodge a complaint. Again on a helpful note, when we came in for my postpartum check-up being handed the postpartum paperwork and enduring the lobby was difficult. I could imagine this being the case for most mothers’ experiencing child loss. I would have found it helpful had the paperwork been previewed and perhaps allowing my husband and me to wait for Dr. M. in a different room.
I live in this world without my daughter permanently and a 30 second chart review could have easily avoided these patterns of negligence. As a mother of a child that does not walk the earth, I hope that this letter can help educate your office staff.
So I switched. I also never heard from them again. My best friend's Mom, recommended a nice, lady doctor who handles high risk (read, crazy) moms. My former OB did not want to examine me at my 6 week follow-up for fear of traumatizing me. At the time, much appreciated but then a few months later, OK October, I thought hm, better get all that checked out. I scheduled an appointment which my sweet mother attended. They had all my records ahead of time.
The first thing the nurse said to me was "You don't have to tell me anything. I know why you are here and I am so sorry" and the proceeded to hug me. Sob, sob, sob went the mama bear. The doctor answered my questions for nearly an hour and said almost exactly what my past OB had said. Umbilical cord accidents are rare. Did it make me feel better? Yes. I had every test done under the sun and a set of fresh eyes to review Piper and my hospital records.
I had to see her again after that initial visit because there was fear of an ovarian cyst. Turned out to be a kidney stone. Oh the joy. I had to have an internal ultrasound and let me tell you how anxiety inducing that can be for a woman who has experienced child loss or anyone with an ounce of anxiety. I told the nurse I thought I was about to faint. She offered me a water and let me sit in the chair with the door open and rubbed my back, ya'll. Rubbed my back. That little bit of humanity goes a looong way.
Doctor visits are traumatic for me, now. I am thankful for our new care team and modern medicine. Yet I continue to be wrecked with anxiety at each appointment. Squeak is a high risk pregnancy, requiring loads of extra monitoring. On one hand it's soothing to see my baby more frequently, and on the other requires I live at the doctors. Specifically the high risk clinic. It's a serious place and I'm fortunate to be under their care but the waiting and hour long ultrasounds are hard. Luckily, I know these visits are not solely the byproduct of my own anxiety or grief. Recently I have encountered some brave moms who have survived the quiet, dark rooms at the specialty hospital.
If you work or know someone who works in a hospital setting, share away. Patients are people. People have problems, stories and boo-boos. Be nice and read your charts.
Rest easy my darling Piper Kai. Everyday my babe, everyday.
Piper Kai Bennett
I will scream, sing and share her story may it be short. Our only child was born still at 36 weeks secondary to an umbilical cord accident. This is our journey about choosing life rather than existence.