FIVEbulous Open Letter to Our Miracle, Nia – Words from Team A&E

“The best miracle I’ve ever witnessed” ~ Nia’s Daddy 

Today you turn 5, I am blessed with grace to call you my daughter on this day September 27th. The grace and mercy allowed us to have you on this amazing day. As each year comes to this day, I can reflect upon it as the best miracle I’ve ever witnessed. N.A.S. you took the operating room like a swift mesmerizing breeze and no words but yours filled the air so eloquently. Can’t say I deserve to be your father but I’m taking up the mantle to serve as your hometown hero. As times get rough, I’ll be around to protect and guide you the best I can or I’ll try harder. You’re a galaxy of joy and inspiration to everyone who hears or sees you. You will always be a living testimony to God’s everlasting love for mankind. I may not always be the nicest or most pleasant but I will honor my position in your life. Thank you for being my perfect daughter, the best angel I could have ever asked God for today and tomorrow.

Love Always,

your Dad [Antoine]

Father’s Day 2020 – Virginia Beach, VA

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Nia Alexandria, where do I start! WOW! FIVE “5” amazing years with you on this earth! I am filled with so much joy and gratitude for your earthly presence. Another year around the sun with you is another 365 days I was never expected to have with you. The magnitude of the grief and peace I felt on that morning, five years ago, preparing for your arrival – still feels like yesterday! I tried my best to prepare myself for the transition of your life – my God! However, At 9:26am on September 27, 2017 – God Said NO! Your cry was sooo angelic and music to my ears! Quite frankly it startled me and the entire operating room as I had no expectation of this sound!

As I sit here writing this open letter, the tears of joy and gratitude are real. There is not a day that goes by that I take you for granted! I know you are a miracle and to be a witness to the magic really is indescribable. I know many parents say they are lucky and blessed to have their babies – but I feel like I hit the jackpot with you! Your spirit and energy light up any space you walk into. Despite the hardships including lengthy hospital stays, medical support, swallowing my pride, eating lots of humble pie, facing my insecurities in the wake of your diagnosis – there is not an ounce of regret for bringing you into this world with the hopes and aspirations that God would deliver on His promise…Trust Me and I will reward you!

We are the recipients of obedience to His word. Some folks can’t fathom how Faith kept you alive, and yet how close we were to allowing our fear to make the decision to terminate because of your prognosis. None of this journey has been simple, but each year you show me how much of a warrior you are and owning your small but fierce physicalities. You lack nothing and your size is a perfect fit for you! 😘💖

As I walked through Target this morning my emotions overcame me and tears welled in my eyes! 🥹 I remember before you were born dreading walking through the baby aisles in Target, a place I loved and baby rows I always loved passing by. The little tiny clothes, hair bows, and all things baby – and grief would quickly overwhelm me preparing to be a Motherless mom.

Now 5 years later I still have moments of grief thinking of what was taken from me – mentally and emotionally, but also in the same breath I am counting my blessings that I get to take joy and comfort in your miraculous birth. I am privileged to go through the aisles and not feel as sad for what was taken for me – but now focus on what is in front of me. That’s you sweet girl with all of your bliss! My girly girl who loves all the glitz and glam! ✨✨I am grateful!

I love how you love me soooo much! You remind me often “I am the best mommy ever.” When I make mistakes you are quick to tell me “that’s okay mommy.” Your forgiving heart is one of a kind! The grace and compassion you present at the age of five is more than many adults will ever show in a lifetime. You know how to console and support others when they are not at their best. Your desire to outwardly express love to and for others is one of a kind. 

Your dad and I are still in awe of your beauty, ambition, tenacity, and unapologetic nature to be great! The year of Five means a chapter of pushing boundaries, exploring, and being fearless!  The reality is you have been breaking the mold and disrupting the status quo since you were born! Nia you have a way with people that commands a different approach to existing in your world. Your light moved your dad to a desire to outwardly share his unconditional love and commitment to you as his child. We are the imperfect storm that created the perfect you! 

Happy 5th Birthday Doll Baby! #bossbaby

I love you, Mommy [Erica]

Blessings, 

ELS

Point Please 💖

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Why Pro-Choice Matters…Especially for Non-Viable Pregnancies

First Lady Michelle Obama’s IG post hit me hard yesterday! “For the mother of a non-viable pregnancy, who is now forced to bring that pregnancy to term..” 

Post from First Lady Michelle Obama on the Overturn of Roe v. Wade 

The unimaginable pain and trauma for any woman that has to hear the words – “your baby has a condition not compatible with life” at any point throughout your pregnancy and especially when you are well through your 2nd trimester.

The only option is termination because the baby won’t survive. These are real life changing decisions and women should have the choice to make the best healthcare decision possible for them and their families! Personally, I’ve been there! I stand with all women that have been down or will go down this road! 💕

The photo below, I snapped over four years ago, 20 weeks pregnant with my miracle baby girl, Nia. I was inconsolable. Why would I snap this photo many may ask? Reasoning: I never wanted to forget the raw pain and agony inside of me having to make a life-altering decision with a tight turnaround deadline  due to a limit on late term termination in our area. I reflect on this pic often as it really inspire MY WHY to  get in the fight for #maternalhealthequity.

June 1, 2017 – My Life Changed Forever! My Maternal Health Advocacy was born at this moment!

Carrying a non-viable baby to term may not physically be a determinant to a mom’s health but it sure as heck is to her mental health. Those painful emotional scars never go away! My DNA changed on that fateful day of June 1, 2017. I was chemically never the same #facts! To be forced to carry a baby knowing the likely outcome with no options is literally torture. 

Part of my Pregnancy Journey: I was advised to terminate my sweet miracle Nia at 20 weeks. I was never mentally the same afterwards. The postpartum anxiety and PTSD I endured was unreal,, despite a great healthcare plan. This is another painstaking gap as a Black Mama and shows our government should have no say in my reproductive choice!

As a Christian Woman, I maintain my stance on pro-choice. Not every pregnancy is black or white. Truthfully, many pregnancies are very gray! Think about this – my baby was said to be “perfect” at 12 weeks gestation and by 20 weeks she was so imperfect that termination was the only reasonable option. While my hubby and I ultimately decided to continue our pregnancy at the last minute – less than 24 hours to the appointment time, it was an agonizing decision to make. The other painful reality was this procedure would cost us a whopping $10,000 as our insurance company denied our authorization. At the time my hubby and I both were public servants. The whole process was gut-wrenching and disheartening. First an unfavorable prenatal diagnosis and then the astronomical costs tied to this critical reproductive procedure. The justification to not cover the cost was Nia didn’t pose a risk to my physical health.

The healthcare system and legislation completely disregarded the implications of my mental health without initially providing appropriate behavioral health resources to continue this pregnancy. I couldn’t imagine today not having options about my own body.  My hubby and I  had sleepless nights trying to determine what to do! I was left to find my own behavioral health team, and to make matters worse –  some referrals that did not accept insurance.  Thankfully we were in a position to be able to afford the out-of-pocket cost but not everyone is that fortunate. Yet it was still a complete nightmare. 

In the WorkPlace: While I was mulling over this grueling decision – I still went to work and walked the halls of my former agency as a public servant and national security leader professionally together on the outside in high heels with beautiful proud belly, all smiles – yet broken on the inside.  I pretended  all was well during the day and cried my eyes out at night with my hubby trying the best way he knew how to be there for me –  for an additional 17 weeks – with the realization that my baby was destined for certain death.

This is why #CHOICEMATTERS! I am grateful my little miracle is not only surviving but thriving despite being so close to death at birth, then at exactly 2 months (coding twice), and then open heart surgery. However, my trauma scars remain and my healing is a daily journey, and it’s costly to continue my behavioral health. Yet our healthcare or justice system isn’t designed to handle the unique needs for BLACK AND BROWN WOMEN LIKE ME! But you say pro-life while not understanding that the baby I might be growing is sucking the life out of me. #RAWTRUTH  This is why #CHOICEMATTERS! I made the CHOICE to move forward. It was physically, emotionally, and mentally costly, but it was #MYCHOICE alone!

Present Day: Here we are today at the mercy of each individual state to be reasonable and empathetic, which over the last few years it’s becoming more apparent that’s not possible. Being forced to carry a non-viable pregnancy to a full pregnancy term is just downright cruel – inhumane. If you are reading my blog, and have not had to make this difficult choice, don’t allow religion to fool matters of the heart! Decision-making starts looking really differently when it hits your home! If you have been in my shoes, I will continue to stand with and by you!  I am a safe space for you! #WOMENMATTER #MAMASMATTER

Final Thoughts: Let’s be clear, you can’t be pro-life yet also want to limit health and human services to families – food, shelter, healthcare etc. Minimum wage won’t cut it!

Also, it’s quite interesting that this country is screaming pro-life, yet Black Mamas are dying at an alarming rate – 3 to 4 times higher than other non-colored women to be exact! Oh and our babies have a much higher mortality rate as well! So are we really pro-life or just when it doesn’t involve black and brown women. We matter and our babies do too!   It should still be OUR CHOICE!!! PERIOD! All Women should be the decision-makers of their own bodies. 

I will continue to fight like hell as a #maternalhealthadvocate 💕

#ProChoice #ChristianMom #RoevWade #ReproductiveRights #MaternalHealth #ReproductiveChoice #MaternalMentalHealth #MaternalHealthStrategiest #WomensRights #HumanRights #BlackMamasMatter #BETHECHANGE 

UnFOURgettable Open Letter to My Sweet Miracle, Nia

Nia today marks 4 years around the sun and yet your birth still feels like only yesteday! The trauma and blessing all in the same 24 hours is still raw as I write today! The grief hit me like a crashing wave at this hour. I am no longer angry, but sometimes the heartache still feel like I just received the grime prognosis of your life expectancy – zero to a few hours at best or even worse – stop your heart before you arrive in this world so you won’t suffer. When I think about all the expert medical opinions I received four years ago, and then to look at you today – part of my soul aches for the thought of me missing all the things you have become today!

I am grateful “Nia’s Journey” set me on a path to be a crusader not only for you/us – but to fight for the health and lives of other moms and babies!

Your life pushed me to be even more of a risk taker! I’ve never been average, but God truly raised the stakes when He gave me you! He knew you would set fire under me to Bet on Myself – because your life would require me to do so! God continues to order my steps and align them with greater purpose ever single day! The best part, it’s always connected back to “Nia’s Journey.”

You are the epitome of Independent! You are ambitous and a girl on a mission, which we [your dad and I] have clearly seen in your love for the beach!

I have watched you grow more in love with not just sand at the beach but the ocean. I remember when you were sooo afraid of the ocean and now nothing can stop you! The beach is our family’s happy place!! This just gives me pure joy! You truly are our little mermaid! We are incredibly grateful to Make-A-Wish for making your Ultimate Tea Party by the Sea come true this year! These memories will last a lifetime.

Nia’s Wish Day! 🥰

Ultimate Tea Party by the Sea!

You totally deserved it especially enduring reconstructive bi-lateral hand surgery that required casts for a whole month! Just like you bounced back in unprecedented time from open heart surgery, you did the same for this surgery – which was not nearly as complex but equally nerve wrecking and requires a bit more day to day assistance.

Few hours after surgery!

You are truly a warrior and whenever doubt creeps in, remember “I Can Do Hard Things!”

This past year has been quite the experience. The pandemic caused us to make more tough decisions – would we send you to school or not? What type of setting – home, public, or private? Ultimately we decided on an independent institution that didn’t make public health and safety political. Your health along with all students is considered of the utmost importance.

Also, because your school’s values – you are loved, accepted, and appreciated for the diversity you bring to the school. I am able to educate your classmates, families, faculty and staff about your differences yet your similarities. That love takes a bit of my worry away!

First Day of Junior Kindergarten (JK)

Some days though I must say I hold my breath waiting for you to come home and say someone has been unkind – yet that hasn’t happened. I know it hasn’t been a full month, but I know you are in a safe and healthy environment conducive to a positive learning experience.

I am excited for your next year around the sun – you will continue to do amazing things!!

Thank you for giving me so much inspiration because of you I am a strategist, advocate, advisory council member, blogger, a best selling author, and most importantly a warrior mom and an absolute believer of Christ! Without Him, there is no you physically on this earth!

Love you! #Dollbaby and my #Bossbaby

Happy 4th Birthday to my Mermaid and Unicorn! 💖💖🧜🏾‍♀️🧜🏾‍♀️🦄

3rd Year Open Letter To Nia – My Fearfully and Wonderfully Made Miracle! 💜💜💜

Nia as I lie in bed writing this letter with you by my side – September 27th – the emotions are raw – and all I can think about is Mommy and Daddy had prepped for your memorial service in advance – but God! Hearing you breathe next to me is music to my ears.

Even when you are fussy, irritable, and ever so stubborn my heart is always full! Although I can’t always figure out exactly why you are upset at times- the thought of your fussiness just brings amazing tears to my eyes!

Why? Because as I reflect on how far you’ve come and how you are thriving, the only word that sums your journey up is Wonder! You continue defying the odds – and shattering “the death sentence” put on your life before you were born!!

Every year as September 27, 2017 comes around, I replay your birth story in my mind everso vividly – and I remember the loud cry that filled the operating room on this day at 926am – like a sweet melody – the cry wasn’t expected and at that moment i was too shock to fully cry – but the entire room of professionals cried with and for us as they too understood the magnitude of what had just happened – A real miracle!! Your cry demanded bold attention then and your energy continues to radiate and command presence in other people’s heart everyday!

The Miracle and Testimony! 🙏🏾🙌🏾

Although you were born 2 weeks early – it was God’s perfect timing! Your gift of life has transformed me in ways I never imagined! I am living a Wonder-FULL life, Unapologetically! Your journey has created a platform fo me to advocate for other moms and babies, women’s health, clean beauty and so much more!!

Because of you, my voice is elevated in a way I couldn’t have even imagined in my wildest dreams! Your life gave me the confidence to bet on myself to take a career JUMP in the midst of COVID – and go big in BIG Tech AND start my own CLEAN Beauty business and lead the charge in demanding safer health and beauty products – Wow!!!

Nia the world is so much better because of your life – and I pray that your tenancious spirit continues to allow you to move confidently in this world – and know your size does not determine your destiny!

Honestly I think you know this already even at the age of 3 and this is more for mommy – as I worry about the day you will come home crying to me that someone teased you for your size or tries to make you feel less than because of your height – your sureness reminds me “I Am Perfect!”

I have gotten better at this worry and think a lot less about it and truly just watch you take on the world with determination and drive! You are sooo darn sure of yourself and have faith that you can literally do anything!!! Your will to do hard things are God’s sweet way of showing me – mama I got this!! “I am fearfully and wonderfully made…” You are my real life beautiful doll baby!

This attitude will allow you to overcome anything and I will be right here to cheer you on!!

God knew the joy you would give to mommy – and although I had to dance in the rain and the real pain of prepping for your death three years ago – I am so thankful that God saw fit for me to experience His Wondrous Works in a way I hadn’t yet seen until that day! Literally the sun was shining on me – okay the operating room lights were but let’s pretend 😂🤪 Your life gave me new life and although this journey hasn’t been easy it has been worth it!

To watch you shed tons of medical equipment has been incredible.

You are the bravest earthly angel I know – surviving life in the NICU 118 days, coding twice in one day during those times my God, open heart surgery, numerous hospitals and doctors visits, medical road trips, the poking and prodding. Yet you are soooo darn resilient and force the entire household to serve as your guinea pigs – I mean patients!

I love how your imagination transforms so quickly from a physician, to a chef, to a superstar – aka lil Beyoncé!

I am so thankful that You Shook My World and Honestly Turned it upside down! I am sooo much better for it as a woman, wife, mom, sister, and friend!

Keep serving me some of life’s greatest lessons and being limitless!!! You are are truly my SHEro and Earthly Angel!!

Mommy and Dad Love You Forever and Ever!

ELS (and daddy too – AAS)

A&E 💜💜💜💜

Princess Nia 💜💜💜

Mental Health Reflection: Surviving Nia’s Latest Surgery and COVID-19

Today marks one year post open heart surgery for Nia! As I write this blog post I am literally in tears! My God! My baby girl’s fate was death, but through supernatural healing she is here!!!

I believe this is a perfect opportunity to revisit my postpartum mental health journey. As most who follow Nia’s Journey are aware that my pregnancy and postpartum mental health journey have been quite the rollercoaster ride – but I am transparent about my own journey as Ive received so much feedback that it i has help others- mothers and non-mothers / men and women alike.

This COVID-19 crisis has definitely attempted to play on my psych and cause my postpartum anxiety and PTSD to to peak its ugly head, but it can’t and will not win!

Before the COVID-19 crisis was fully a thing, it was already on my mind, one because of Nia being a congenital heart and lung defect baby- anything respiratory related always puts us on heightened alert.

I should back up to the day before Nia’s latest surgery…Nia had her cardiologist appointment in Lancaster, PA with her godsent physician. This visit was routine until it wasn’t.. She had an echocardiogram, which was required for approval of her tonsillectomy and adenoidectomy (tonsils and adenois removal) the next day…

The Emotional Rollercoaster – Cardiology Visit

…Her cardiologist was concerned regarding the pressures on the right side of her heart being too high!! Let me just say, my heart sank and so did Antoine’s… I could see the worry in his eyes which is rare- he looked at his baby girl, and I could see his eyes saying not my baby girl again… My PTSD had me almost wanting to scream in the echocardiogram because Nia had to have two screenings to be sure….



The rest of the visit is was full of additional education and theories of what may be happening… again we are so thankful for the details we receive by Nia’s care team as they know we expect nothing less… the two hour drive is worth it!





Despite the news seeing Nia being so happy and wanting to check her doctor’s heartbeat was a little bit of sunshine and she is truly our light! She is full of joy no matter the circumstances – Sweet Nia is always so sure of herself and the love she has for others…

Nia would now need to go under again at a different time to the cath lab to be sure the echo was accurate…sooner rather than later…For now she was approved to have her tonsillectomy and adenoidectomy with the coordinated care of a cardiac anesthesiologist…

That afternoon Nia was seen by her skeletal dysplasia orthopedic team – truly blessed to have them as well! Dr. Stewart Mackenzie’s (Dr. William Mackenzie’s son) this go around…..



That evening we paid it forward to the NICU families and staff with a hot meal – doing this always brings positive to energy to my mental health…. feels good to do good for others!

Coronavirus Is a Big Deal but Don’t forget about Flu and RSV…Why it Matters for Babies Born With Congenital Heart Defects ❤️❤️❤️❤️❤️

This is the last day of February, and what better way to end Heart Health Month and a month where the spotlight is given the to Congential Heart Defects awareness; February 7th was National Wear Red Day, and marked the beginning of #CHDAwarenessWeek. CHDs are near and dear to me as my miracle baby girl, Nia was born with a hole in her heart and leaky valve. This time of the year is where cabin fever is heightened because we limit Nia’s exposure to people outside our home! PTSD is real for all the #NICUParents #CardiacWarriorParents.

The average mama probably goes about all four seasons not even seriously anticipating when exactly does fall/winter start and when does it end?? For us mamas/parents that have NICU, Cardiac, Pulmonary or Immunosuppressed Warrior Babies/Toddlers, this is always on our mind… why because we have been traumatized by the extensive hospital stays from the time our our babies were born. Thinking of a hospital brings traumatic memories that are truly unfathomable.

Think Again Head Cold at Work or Baby at Daycare…

That little stuffy nose or head cold that a colleague brings to work, that mama’s sixth senses just became a little more heightened by your presence? She is lysoling not only for her sake but for her little miracle at home or daycare. Also I know it’s hard juggling the professional mom life, but please don’t suppress tour baby’s fever with meds and send them on to daycare, you may have possibly compromised another’s mama’s little miracle – who has seen more than his/her fair share of the pediatric ICU or whatever step-down unit…Just a stuffy nose to you could be RSV to her baby!

Unless you have been a regular at the hospital ER then you couldn’t possibly understand why these mamas say please wash and sanitize your hands or better yet just stay away. You wouldn’t understand why she may even ask you to when was the last time you had a cold or something worse – the flu, sinus infection, pneumonia (whatever).. PTSD of the hospital and a rollerocaster health ride with her baby has made her this way…

She is up at night rocking and suctioning her baby while watching also if her baby may suddenly turn blue – yes this is what RSV can do!

No Baby/Toddler is Immune from RSV or Flu

RSV and flu can cause a baby’s lung to collapse – and it doesn’t matter if you brought home a healthy baby – they aren’t immune to these horrible and deadly “colds” for your little miracle.

Winter Season 2019-2020 for Nia

RSV and Flu Seasons came way too early this go round.

Nia tested positive for RSV at the beginning of October, right after I returned from a girls trip to Napa Valley. Receiving the news from Nia’s pediatrician, immediately brought back horrible NICU memories – the day she stopped breathing as an infant… I immediately broke down into tears… again most would say what’s the big deal?!! RSV can cause a little one to go south really fast… there is a high risk of rapid breathing, shortness of breath, and the stuffy nose is on a whole other level which makes it hard to breathe.

I am so grateful for an amazing pediatrician who saw the distress in me and said look “do I look worried?” She knows Nia so well and knows she is a trooper… She said Nia looks great but something changes after hours then emergency room. She understood I knew Nia’s threshold of danger… it was the encouragement I needed to get my head back in the game to care for Nia since Antoine had left for a short trip, typically how life happens right?!! This mama was exhausted but we survived RSV (plus an ear infection) with no hospitalization. Thank God for my emergency breast milk stash I had saved since last May – it definitely came in handy.

Fast Forward to the Holidays…

Nia tested positive for Flu B and again I kept saying Lord please no hospital stay – this mama can’t take it.

We visited Memphis for Christmas. Nia was able to meet a lot of family and friends she’s never met before. However, On our drive back to Northern Virginia, Nia started to run a fever and had a runny nose. I had Tylenol but left Motrin at home because well for once I was trying not to let PTSD get in my way for this special time with family. I kept praying and saying in my head Nia would be fine, I don’t need all the extras. Welp that unfortunately was no the case. We had to pull over at a Wal-Mart in the middle of nowhere Tennessee to get some Motrin so Nia could tru to sleep. Let’s just say this ride home was not enjoyable.

After consulting with Nia’s pulmonologist he said to take her into the pediatrician’s office to be tested immediately since flu B was quickly on the rise. So happy we did.. We brought in the New Year with a Tamiflu Party of things (except for Antoine). He managed to not need it, thankfully. Thankfully I had emergency breastmilk again to give Nia… She bounced back pretty quickly and so blessed and grateful she did.

Mama Caring for Flu Ridden Baby and Self



Tamiflu Party – Antoine’s Birthday and NYE 2019 – on the mend



I know Nia needs to be exposed to other people and germs but with Flu and RSV B wreaking havoc on the nation, including at least 28 deaths in children, I would rather keep her in a bubble. This is not realistic, but I will do my best to protect Nia at all cost. So please don’t be offended when we ask you to wash and sanitize your hands before passing go at our door and I may slap a stranger’s hand that wants to touch Nia – sorry not sorry! This is not my comfort zone but don’t force Mama Bear to come out. There is nothing worse than watching your miracle warrior you fought so hard for to have to struggle to breathe yet once again because of another person’s selfishness insists on being in your presence with just a “little cold.”

Signs and Symptoms of RSV – Respiratory syncytial virus

When to see a doctor: Call your baby’s doctor if you notice any of the following RSV symptoms:

• A high-pitched whistling or wheezing noise when they breathe

• Being unusually upset or inactive

• A cough with yellow, green, or gray mucus

• Trouble breathing or pauses in their breaths

• Refusing to breastfeed or bottle-feed

• Signs of dehydration: lack of tears when crying, little or no urine in their diaper for 6 hours, and cool, dry skin.

If your baby is very tired, breathes rapidly, or has a blue tint to their lips or fingernails, call 911 or go to the ER immediately.

Source: WebMD https://www.webmd.com/lung/rsv-in-babies

Additional Resources:

https://www.cdc.gov/rsv/about/symptoms.html

Signs and Symptoms of the Flu

The flu is an acute, viral, respiratory infection that most people recover from in 3–7 days.

Symptoms of the flu in toddlers are similar to those of adults and may include:

• dry cough

• sore throat

• blocked or runny nose

• fever

• muscle aches

• headaches

• tiredness

When children get the flu, they are also more likely than adults to experience gastrointestinal problems, such as vomiting and diarrhea.

The following are key differences between cold and flu symptoms in toddlers:

• Speed of onset: If symptoms come on very quickly, it is more likely to be the flu.

• Fever and chills: A high fever and chills are more likely to be signs of the flu.

• Muscle aches: Aching muscles are more common in children with the flu.

• Headache: Headaches are more frequently with the flu than with a cold.

• Low energy and appetite: Children are typically more lethargic and less hungry with the flu than a cold.

The following are key differences between cold and flu symptoms in toddlers:

• Speed of onset: If symptoms come on very quickly, it is more likely to be the flu.

• Fever and chills: A high fever and chills are more likely to be signs of the flu.

• Muscle aches: Aching muscles are more common in children with the flu.

• Headache: Headaches are more frequently with the flu than with a cold.

• Low energy and appetite: Children are typically more lethargic and less hungry with the flu than a cold

source: Medical News Today: https://www.medicalnewstoday.com/articles/327110.php#cold-and-flu-differences

Additional Resources: https://www.cdc.gov/flu/symptoms/index.html

Last note: Although the flu vaccinations aren’t 100 percent foolproof – it does help to fight against the flu. The sooner your child is seen by a medical provider with both fRSV and flu the better you can manage the illness especially with Flu. Flu viral medicines are much more effective within the first 48-72 hours of contracting the virus.

Wash Wash Your Hands and Do the Same for your Babies and Toddlers!

This helps to stop the spread of infections such as RSV and Flu.

Blessings,

ELS

It’s Okay to Not Be Okay, But Don’t Suffer in Silence – Black Maternal Mental Health Week

Seeing Color in Maternal Mental Health

As a woman and mom of color I found myself initially ashamed that I had postpartum mental health issues. In fact, I initially felt guilty of where I was mentally, but encouragement from those closest to me to seek professional help really allowed my mindset to shift in a positive way! Mental health discussions in the black community are a challenge, but the dialogue is slowly improving. This shift in discussion and advocacy is imperative for black mamas to receive the appropriate mental health support we need. The distrust or dismissiveness associated with black women and their healthcare providers, the high cost associated with mental health treatment diminishes the number of black mothers actually being treated. Of course no matter your race or ethnicity postpartum support should be a standard part of pre-natal and perinatal care.

Reflection

2.5 years ago I would’ve never imagined being impacted by a postpartum psychiatric diagnosis- not that I thought I was immuned – just never ever considered it would be me…guess that could be said about a lot of things along my pregnancy and postpartum journey! Nevertheless here I am 1.5 years post my diagnosis of postpartum anxiety and PTSD – as a result of my traumatic and tragic, yet miraculous pregnancy and Neonatal Intensive Care Unit (NICU) and Cardiac ICU (CICU) of my miracle baby girl along with 3 unexpected hospital stays. Realizing I needed help and having an amazing support system made this diagnosis a little more bearable. I am beyond grateful for my behavioral health team!

Thinking back to how my mental health became such a roller coaster ride, meant reliving the anticipation my baby girl’s death. It’s unimaginable to wait basically 17 weeks (the latter part of my pregnancy) for the death of my unborn child! I went through so many different stages of grief, mental and emotional pain – from unstoppable crying, to anger, to hopeless, to hopeful….and then a sense of peace kicked in!

Purpose for My Pain

I realized our sweet girl had been created for a purpose bigger than my hubby and I, but at times I still gave and give God the side eye – We didn’t sign up for this… but when I look at Nia I am reminded of Jeremiah 29:11- For I know the plans I have for you,declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. My mental health is forever transformed because of this journey but Nia is not her prognosis, which ultimately would’ve meant death upon or before birth.

My New Outlook

I no longer seek to understand why me/us (can’t say that it will never cross my mind again though) on this twisted journey, but more so how can I engage/support other mamas battling similar horrific complex journeys with their unborn or newborn miracles to ensure they have the appropriate home and professional support.

Need Mental Health Support During Pregnancy and/or Postpartum?

If you are feeling overwhelmed, sad, depressed or a sense of panic while pregnant know that you are not alone. Tell someone- family or a friend, healthcare provider or feel free to contact me even if you don’t know me personally… I will not ignore you! Your body has endured so much by just being pregnant and/or giving birth and if you are coping with an unfavorable prognosis for your baby this only heightens your mental instability.

Managing Your Maternal Mental Health With a Complex Needs Baby/Child

If you are embattled with raising a baby/child with complex medical needs and your baby is now home, know that you are not alone either! Please reach out to a professional, friend, or me! I am on this unique journey and have navigated this complex healthcare system in ways I never imagined… Truly grateful to God, my support system, a spirit of discernment, and a resilient soul that keeps the fire burning in me to not give up even when I’ve wanted to along Nia’s Journey…

I have worked hard to recognize the positive and blessings of our journey. Some days have been down right ugly, but I know there is Purpose for my Pain- I speak life to having good mental health! I shall live and not die!

Additional Tips for Mammas-to-Be With a Difficult Pregnancy including Unfavorable Pre-Natal Diagnosis

1. It’s Okay to have whatever feelings you are having

2. Find a therapist that specializes in complex pre-natal diagnosis or post-natal grief

3. Talk to a close friend or family member if you can – naturally most want to be supportive and helpful

4. If you have other friends/family pregnant as well, and it’s difficult for you to see them because of your own difficult pregnancy journey- know that’s okay too- you have to keep yourself mentally sane- I can relate- I was genuinely happy for them and healthy pregnancies but my heart ached for wanting the same – it was a challenge

5. Have an accountability partner that can be a great confidant and hold you to ensuring you are getting appropriate mental health care

Additional Tips for All Postpartum Mamas

1. Crying a little more than usual is okay, but it’s not when you feel like you have lost control – ask for help from family and/or friends

2. Having intrusive thoughts – this can be a sign of postpartum anxiety or PTSD

3. Being overly on edge – consider medical professional help

4. Having a difficult time bonding with your baby… initially ask for a break if you can and reset and manage your expectations for you and your baby

5. Join a postpartum support group if offered in your local community

6. If taking some me mommy time doesn’t help – consider professional help

7. Having Suicidal Thoughts or feeling you want to harm your baby – Call 9-1-1

Additional Tips for Postpartum Mamas of Complex Medical Needs Babies with extended hospitalizations

1. Spend as much time as you need in the NICU or CICU with your warrior baby. He/she can feel your presence even if you can’t hold for kangaroo care snuggles just yet.

2. Don’t put guilt on yourself if your baby was born prematurely or full term but has a rare diagnosis… Life happens and sometimes things are just beyond your control… Nia was not a preemie so I had to remind others of that and still til this day!

3. If you had a full term baby but an extended hospitalization know that your baby still does matter… advocate and demand care as if your baby was a preemie – I’ve been there… I believe this required hyper-vigilance exacerbated my postpartum issues..

4. When you can pick your baby up then opt for skin to skin- it calms your baby and also you which can decrease postpartum issues.

5. Take some me time when you are past your six week check up – yes it truly is fine to think of yourself even if things are chaotic or touch and go! Ive been in your shoes! – Mani/Pedicure new mama??? or just walking to get fresh air

6. Treat yourself to a meal outside the hospital

7. When friends and family ask how they can help – request food outside the hospital – this made me smile just a little bit more

8. Share your struggle with other NICU or CICU mammas that you may connect with during your baby’s hospitalization or at March of Dimes Hospital NICU weekly events. Even when family and friends can’t fully understand your pain and agony – these mamas will! Some just may become lifelong friends 😉

9. If your sleep is being disrupted outside of needing to pump or nurse your baby – consider speaking with to a medical professional – primary care provider, or medical staff in your baby’s hospital… some hospitals have in-house postpartum support when a mom’s baby is in the NICU or CICU; March of Dimes NICU Coordinator is a great resource as well!

10. If you have throughts of harming your baby or yourself and are already at the hospital with your baby inform a medical professional immediately, otherwise call 9-1-1

11. If you are concerned about not being able to afford postpartum behavioral healthcare, there are some therapists that will accept whatever you can afford up to a year after you become a patient/client. Also the following list of resources are available free of charge:

National Maternal Mental Health Support Organizations or Services

Postpartum Support International

Call 1.800-944-9773

https://www.postpartum.net/learn-more/pregnancy-postpartum-mental-health/

Women’s Health- U.S. Department of Health and Human Services

Call the OWH HELPLINE: 1-800-994-9662

9 a.m. — 6 p.m. ET, Monday — Friday

https://www.womenshealth.gov/mental-health/mental-health-conditions/postpartum-depression

Substance Abuse and Mental Health Services Administration

(SAMHSA) National Helpline – 1-800-662-HELP (4357)

https://www.samhsa.gov/find-help/national-helpline

Your local health department can be a useful resource

*Note* This blog post is solely my opinion as a non-medical professional, but as a mama that has endured the pregnancy and postpartum mental health journey…

#BlackMaternalMentalHealthWeek #BMMHW #BlackMomsBlog

Previous blog post on nurturing my mental health….

http://niasjourney.com/2018/11/26/week-of-thankfulness-thankful-for-my-sanity-and-the-ability-to-nurture-my-mental-health-%f0%9f%92%9a%f0%9f%92%9a%f0%9f%92%9a%f0%9f%92%9a%f0%9f%92%9a/

Traveling While Exclusively Pumping: Tips from a NICU and Heart Warrior Mama 💚❤️💜

Post Written by Popular Demand

As a recent alum of the exclusively pumping mama club, I never imagined I would be that mom to pump any and everywhere but the way NICU life set us up- I had no choice (at least in my mind), as the pump had become my 2nd husband 🤣🤣. I pumped in the car, driving down the highway, in the airport, in a make-shift lounge, the designated lactation rooms, the restroom, at work, family and friends homes, right before a concert (no seriously). Antoine and I had date night to a concert while Nia was in the NICU and we had to time my pumping sessions perfectly in order to enjoy our night out. So pumping session had to happen right before going into the concert! 🤷🏽‍♀️

Traveling by Airplane

When traveling by plane, pumping can be a little interesting. I know some moms have no shame in pumping in the middle of an airport floor/our in the open- hey the milk has to be released but if you want a little more privacy see my tips below.

1. I tried to pump before going to the airport and if I had at least a two hour layover, I did pump while in airport… Now this can be tricky.

2. Prior to traveling, I checked out the airport(s) via the internet for designated mother/lactation rooms. Not all airports do at the moment. However, a recent federal law was passed last year mandating all airports to have at least one designated lactation room and it can’t be a restroom. However, as of Spring 2019 I found myself in airports that still did not have designated lactation rooms.

https://www.usatoday.com/story/life/allthemoms/2018/10/12/nursing-rooms-breastfeeding-moms-now-required-major-airports/1613690002/

The below website is awesome for designated lactation/nursing room locations in U.S. Airports

https://momaboard.com/traveltip/airport-nursing-rooms-united-states/

Must Haves for Pumping While Traveling (air and land):

1. A portable pump- I own two Beleef Pumps (one for home one for work, purchased on Amazon for under a $100 bucks and can really empty your breasts

2. Storage Bottles or Bags- Used to Store Milk … If you have 3 oz bottles for flying, TSA won’t have to test your milk as it falls under the 3-1-1 rule (Note: if you must have your milk tested by TSA Officer ask them to change their gloves prior to handling your milk)

3. Sanitizing Wipes (Wet Ones)- To wipe down area where you will be pumping

4. Water Wipes- To clean your pumping parts after pumping

5. Cooler bag or pack to store milk and pumping parts

6. Ice Packs- preferably refreezable hard plastic packs as they can last about 14 hours

Key Reminders

1. Breast Milk can be refrigerated up to 4 days without freezing

2. I tried to keep my roundtrip via air no longer than 4 days to prevent running the risk of needing to freeze my milk only to have it unthaw before i got home, which can lead to wasted liquid gold- milk.

3. I tried hard to ensure my trip travel times are no more than 10 hours by plane, but sometimes delays happen, and then the spirit of desperation and mama bear will come into play to save the milk- after so much boob exercise/work and sleep deprivation (See #5). If you are traveling with your baby of course you can give him/her the milk. I was unable able to do so due to Nia’s un-repaired heart (at the time). So I did my best to protect my milk.

4. Check to make sure any hotel you are staying has a fridge.

5. If you are in situation where there is an extended layover or unexpected flight delay, I recommend asking a restaurant in the airport for additional ice. People are usually generous when you mention what it’s for. Don’t be ashamed- preserve liquid gold at all costs!

This way of pumping while traveling worked for me. I am sure there may be better ways, but after 19 months and 5 days, May 2,2019 (officially an EP alum now), including surviving a 118 day NICU stay, three unexpected hospital stays, open heart surgery with Nia AND being a professional – working mom, senior manager, I definitely found some great ways to travel and work yet maintain my milk supply. I did whatever I could to preserve my precious liquid gold I worked so hard to make.

I am thankful that my breasts and breast pump finally were able to divorce on good and mutual terms! 😜

Please feel free to share my tips with other hardworking pumping/nursing mamas who travel.

Thanks to @exclusively_pumping for highlighting my exclusively pumping journey!

Exclusive Pumping on Instagram: “Erica (@nias_journey) made this beautiful collage to celebrate 19 months of exclusive pumping, and I love it!⁣ .⁣ She says:⁣ .⁣ After 19…”

Blessings,

Erica

ELS

Pics from my pumping while traveling life including Nia’s not so close to home medical appts…

Another Medical Milestone…Nia’s Open Heart Surgery is Near…

Next week Nia will have Open Heart Surgery. Her heart will stop and she will be on a bypass machine while her cardiothoracic (heart) surgeon prepares her broken heart! It’s really painful to think about what our baby will have to endure- she has to go through this journey so she can get better- #MyGod!

I can’t fathom what I will feel like on April 16, 2019 as Nia’s life will be placed in the hands of her medical with our God’s supervision. Spiritually we are at peace but naturally as parents I am overwhelmed with the thought of Nia’s chest being cut open and having to be “zipped” back together.

 

Stockpiling BreastMilk- Medical War is Happening

I am weaning exclusively pumping finally! I am down to 3 pumping sessions and plan by next week to be down to 2. Still I’ve been stockpiling liquid gold as if we are going to Medical War 😂😂😂 Antoine has been helping to make sure the milk goes from fridge to freezer! We pray my sacrifice to pump this long and provide treasure of goodness gold helps Nia’s healing! 🙏🏾🙏🏾

Surgery is Necessary

We know that this surgery is a part of Nia’s Journey, but I surely do wish it was a better way. We know that there is victory in the name of Jesus for Nia. We know she is covered by His blood!

Cardiac ICU Tour

We took a tour last week of the Cardiac ICU while Nia was duPont for her Carherization Lab. The tour provided detail information on what to expect when we see our sweet girl post op! Some of the information was rather shocking- paralytic medicine, ventilator, and a chest tub to drain fluid- just seemed to be too much, but necessary for healing…

Parents/Caregivers of Heart Warriors

To parents of Heart Warriors I commend you for your strength and endurance to help fight with your babies to bring them through to other side of life after heart surgery.

We are truly looking forward to getting out of the germ “bubble” and for Nia to be a normal 18 month old kid that just so happens to be a little more petite than most her age and not quite a tooth yet- but that hasn’t slowed her down one bit! She is beautiful and fierce! She loves to giggle and tries to walk- but her broken heart causes her to take mini breaks only for her to speed up again! She doesn’t appear tired but we know at times she is! This is what I call supernatural abilities! Our girl is full of them! Her beautiful and infectious smile wipes away any sadness that we feel at times because all we’ve endured to get her to this day… We will continue to dance in the rain! ❤️❤️❤️

Prayer Requests

We request the following of all prayer warriors:

• Pray Nia continues to remain healthy and free of sickness pre-surgery

• Pray she has an uneventful surgery

• Pray that God gives the expert team the wisdom they need to perform their best on Nia

• Pray she is extubated quickly as possible post-surgery

• Pray she has a strong and speedy recovery

• Pray for continued amazing medical staff to care for our precious miracle baby

• Pray for minimal pain and that God will give her supernatural comfort

• Pray Nia has no setbacks before or after surgery

•  Pray for our strength as Nia’s parents and that God gives us endurance and perseverance.

• Most of all, pray for continued peace over us as we embark on this new part of Nia’s journey.

• Pray for traveling mercy as we travel to and from duPont

Many have asked how can I/we help? Please don’t feel obligated but if you wish, see link below!

https://mealtrain.com/q8vo45

Don’t forget to wear your T-shirts on April 16th!

His Grace is Sufficient. ~2 Corinthians 12:9

Thanks for continuing to follow Nia’s Journey! Your encouraging words, love, and support has meant so much!

Blessings,

ELS

It’s Hearth Health Month! 💗❤️💚

Last Friday, February 1st marked the beginning of Heart Health Month and the kick off began with National Wear Red Day to raise awareness on this issue. Heart Health Education and Awareness has always been near and dear to me because I have a family history of heart related conditions/diseases including genetically inclined high cholesterol, congestive heart failure, and heart arrhythmia.

Raising and Caring for a Heart Warrior

This health issue takes on a whole other meaning as I (We) am now raising a Miracle Heart Warrior. Being Nia’s mom has really increased my knowledge and awareness on the impact of congenital heart defects (CHD) to our everyday lives. Finding out Nia had a CHD initially felt like another dagger on our salted wound- especially with ominous news that our baby’s fate was pretty grim.

We held out a little faith and hope that just Maybe she didn’t have a CHD which could possibly increase her slim (to none) survival rate Hearing at 29 weeks gestation, Nia indeed had a CHD was heart-breaking. For me, I thought wow she probably won’t stand a chance. Seeing her local amazing cardiologist for the first time was overwhelming as Nia initially was diagnosed with a atrial septal defect (ASD) and ventricular septal defect (VSD) which meant if (and big If) Nia survived she would need surgery within the first 3-4 months of life. Well God had another plan- as we all know now- her VSD magically/divinely disappeared. It no longer showed on her echocardiogram (images of the heart) at birth! 🙌🏾🙌🏾🙌🏾🙌🏾 To see Nia pink on delivery day was and still is a magical visual moment forever in my heart and mind!

Since Nia has a un-repaired atrial septal defect (ASD)- hole in her heart and a leaky valve we’ve spent our winters hibernating her from others because of the high risk of flu and RSV. I’ve written numerous times how a cold could be deadly for her- and yes it is true until her heart is fixed! We are blessed and thankful she was approved for Synagis again which is a very expensive RSV antibody shot, that will help her body better handle such a deadly virus if she contracted it. Praying though we never have to face this diagnosis… I am continuing to pump liquid gold- breastmilk into her. 🙌🏾😊

To Family and Friends of CHD Warrior Parents…

If you know someone that has a baby with a CHD please understand and respect their wishes If you get an invite to visit but you feel like you are coming down with a cold or getting over a cold to just stay home… Yes it’s that serious! Don’t judge them for all the soap and hand sanitizer they have around their house, handbags, or back pocket. They are being extra cautious because their precious cargo is even more special 😘

If they won’t allow you to pick their baby up or visit be respectful too- as their doctor’s have already scared them enough, and they may have been hospitalized unexpectedly 1 too many times already, If they’ve had an extended NICU or Cardiac ICU stay then they are more than likely traumatized by the clinic setting and the thought of returning unexpectedly. Help them to not have to be Mama or Papa Bear because if you’ve met NICU and/or Heart Warrior Moms and Dads they are built a little different from other awesome moms and dads. 😉❤️

Congenital Heart Defect Facts

Below are some facts on Nia’s condition and CHD:

⁃ Ellis-van Creveld (EVC) babies have a 60-70 % chance of being born with a CHD which ranges from ASD, VSD, HLHS, and leaky valve (not all encompassing)

⁃ Babies with EVC have a restricted rib cage which complicates managing a CHD

⁃ According to research conducted by duPont Children’s Hospital and the Clinic for Special Children in Lancaster, PA, managing babies with EVC and CHD shows that if heart surgery is delayed until approximately 2 years of age there are no mortalities

Additional Facts about babies with CHD

⁃ According to the Center for Disease Control, approximately 40,000 babies are born with a CHD every year

⁃ CHDs are a leading cause of birth defect-associated infant illness and death.

⁃ About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.

⁃ About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.

Please help me/us raise awareness for Congenital Heart Defects (CHD) in babies!

For more information on raising heart health awareness see links below.

https://www.heart.org

https://www.cdc.gov/ncbddd/heartdefects/links.html

Cheers to February Heart Health Month!

Blessings!

ELS

Erica, Antoine, and Nia

The Best Pic We Could Get as a Family for National Wear Red Day and for Alpha Kappa Alpha Sorority (my sorority) Pink Goes Red! 💗💚💗💚❤️ Nia was all over the place! 😂😂😂