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!

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

Black Maternal Mental Health Matters

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/

Paying It Forward Part II- New Year and Purpose

A 35 day plus government shutdown- working WITHOUT PAY, couldn’t stop our hearts from giving! Thanks to tremendous donations from our family and friends during the holidays and coordination with March of Dimes we were able to bless our 1st NICU Home on Saturday, INOVA Fairfax. We provided NICU families with a hot catered meal from Nando’s Peri Peri- our favorite local place while in the NICU.

A little bit of compassion and empathy can go a long way on this journey! We will never forget, which is why we are compelled to pay it forward! We pray this will be an annual event for us.

We were blessed by other moms, dads, and grandparents sharing their current NICU journeys with some intimate details of the hardship they are enduring… Their tears, hugs, laughter, and even a few smiles humbled us in so many ways- we could truly relate. Some parents had babies only a couple days old, but thankful to have a meal that they didn’t have to pay for or go far to get. All NICU parents want is to be with their babies!

Nia’s journey provided some comfort to the parents… You could see some of the fear, worry, and anxiety in their eyes thinking of their own babies, but our story gave them a little bit of hope and reassurance. When the situation looks dire, God can turn it around in an instant. To know our baby should have been DOA, but she is thriving 16 months later is truly miraculous. We pray that the parents we encountered on Saturday will be able to take their babies home in the next weeks or months.

We are on a mission to transform healthcare for babies, mothers, and fathers enduring long hospital stays or complex medical care through advocacy, knowledge, storytelling, and provider and patient engagement! Paying it forward is just a piece of this.

Peace and Blessings!

Erica

Erica, Antoine, and Nia

Link to Paying it Forward- Part I

https://niasjourney.com/2018/12/25/paying-it-forward-tis-the-season/

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