Featured

Our Pregnancy Journey

If you are a parent and have been blessed to have a typical pregnancy and a healthy little one, may you take every word to heart and never take your precious baby breaths or tantrums for granted…

The Beginning of Our Journey

We want to shed some light on our pregnancy journey/testimony so here it goes… Almost 2 years ago during a well-woman’s exam, I asked my OBGYN to make sure all was well from a reproductive standpoint- by doing some additional lab work. I learned my ovarian hormone level was measuring low in the Spring of 2016, and to be retested a few months later. During those next few months I traveled the world personally and professionally including spending a good amount of time in East Africa.

We had considered possibly starting a family later in 2017 or early 2018.  Full Disclosure-when I say family- I mean possibly one and done, heck before I met my hubby, Antoine, being a mother wasn’t on my radar.  I just wanted to focus on my professional goals. At the beginning of 2017 I was retested and my levels were still low. I was then referred to a fertility specialist. I visited the specialist on Wednesday, February 1, 2017, and he was a little concerned with my levels, and wanted to make sure all was well. I was scheduled to have a procedure the following weekend.

That same evening, my youngest sister stopped by and randomly asked if I was pregnant. I told her no and provided info from the fertility specialist. She brushed it off and said oh okaywell I had a dream that you were pregnant with a baby GIRL and you delivered her with a head full of hair- she was beautiful….your delivery and recovery were a breeze- More on this in another posting.

PREGNANT!!!

Fast Forward, on Sunday, February 6, 2017 I found out I was pregnant!!!!! I went from not being sure if I was fully ready to be a mommy to completely ecstatic.  I ran all over the house trying to find Antoine (he was in the basement) to tell him- we were indeed pregnant!!! God had delivered a miracle to us and we didn’t need any specialist. We shared the news with our family when I turned 12 weeks- April Fool’s Weekend! 🙂

Shoemate Surprise Onesie 2017
We sent our family framed photos with this image via mail- April Fool’s Weekend! We had taken this pic during the Cherry Blossom Bloom here in DC.

Mother’s Day

Mother’s Day weekend I turned 18 weeks, and believed we were far enough in the second trimester to publicly reveal we were expecting. I made the announcement on social media. We were so stoked!

Photo Grid from Facebook Pregnancy Announcement

FAST FORWARD…Our Faith Tested

On May 30, 2017, at our 20 week/5 month anatomy scan OBGYN appt., we were advised that our baby looked to be measuring a little bit behind.  We didn’t think much of it. We asked the tech to put the baby’s gender in an envelope as we didn’t want to know right away and would reveal at our baby shower in Memphis  (my hometown) set for July 8, 2017. My OB immediately referred us to a renowned maternal fetal medicine (MFM)/high risk specialist. We had an appt. on June 1, 2017 that was forever life-changing.

At this appointment, we had a level 2 ultrasound. The sonographer was really sweet and took detailed measurements of our baby. We learned her hubby is an Ole Miss Alum as well. She seemed to be very concentrated around our baby’s chest area. She then asked the doctor to come in and he looked once more and took measurements of the baby’s chest. The room felt eerie as he was looking at the baby’s chest, I immediately burst into tears and the doctor said, I am sorry but your baby has a lethal skeletal dysplasia that is not compatible with life- Short Rib Polydactyly Syndrome (SRSP).

Our baby’s chest area wasn’t wide enough for the lungs to be able to grow and sustain life outside the womb. His recommendation was termination. He thought more than likely this disorder was a sporadic gene mutation, and it likely wouldn’t happen again if we tried to get pregnant a second go round.

The room seemed so small and cold, I remember looking at Antoine and he was trying to be strong for the both of us. All I wanted to do was get out of that office/hospital. We made it to the car and I just sobbed and sobbed in a way I never had ever in my life. I couldn’t believe what we had just heard come from the doctor’s mouth. I am 5 months pregnant- I have a whole baby that is kicking and moving.  June 1, 2017 was supposed to be the date our Memphis shower e-mail save-the-date was set to go out. The invitations would be mailed the following week. I immediately had to put that to a halt and inform my best friend- don’t send any emails or invitations!

I couldn’t process the news. I felt like I was in a fog. We were advised to visit INOVA Fairfax hospital and meet with a genetic counselor the next morning. On Friday, June 2, 2017, we saw one of the most sweetest and compassionate genetic counselor and fetal care team members. They provided professional advice related to our initial diagnosis and provided our option(s) to terminate or maybe carrying to term with little to no expectations of life.  We were informed there was an option to prevent the baby from suffering by stopping the heartbeat before the procedure- I literally balled my eyes out hearing those words- it was too much to digest. We might get an hour or two at best with our baby if we carried to term. We were just shocked.

We left the office and got in the car and literally cried our hearts out in the parking garage. There was no hope for our baby to live. There were a flood of tears it seems.  Our hearts couldn’t bear the news. We were devastated. How could this be- we were having a great pregnancy and now this news. I hadn’t even had much morning sickness.  At the 12 week ultrasound our baby appeared just fine along with cell free fetal DNA genetic testing. Nothing made sense. We just wanted to go and hide from the world.

That night, Antoine and I decided we had to know the gender of our baby since we wouldn’t have long to share life with him/her. When Antoine opened the envelope and it said Girl- I cried harder because I felt like God had played a cruel joke on us. How could you give us life and then want to take it away. We had always wanted a GIRL if we were going to be parents. That night, we listened to her beautiful heartbeat on the Doppler we purchased in our first trimester. That same night, we decided to name her Nia Alexandria. Nia means purpose or will in Swahili. Alexandria is the feminine for Antoine’s middle name- Alexander which means defender of man.

I couldn’t understand how God allowed my sister to deliver us pregnancy news before we ever knew that life had already been created in my Womb. HOW GOD and WHY would you be so unkind to us. COMPLETELY HEARTBROKEN was an understatement.

At MFM- before we found out the devastating news about our baby! I remember telling Antoine- let’s capture this moment-day!

We decided if we didn’t have long with our baby girl, we needed to see her face.  On Sunday, June 4, 2017, we had an appointment for an elective 4D ultrasound. It was a beautiful session- seeing our baby girl on the huge television screen filled our hearts with joy and our eyes with tears.  We even recorded  Nia’s heartbeat on this cute heart-shaped recorder so that we could always hear and remember her. We would know how strong of a heartbeat she had if God wanted to take her away so soon. She looked perfect- so how could the doctor’s diagnosis be true.

Elective 4D Ultrasound at 21 weeks

 

Heartbeat Monitor
Nia’s heartbeat recorded at 4D Ultrasound. We would always have her near even if she wasn’t physically on this earth anymore.

We left the place, and as we were driving, God placed a close friend of my mine  on my heart  to call who had been through a different devastating prenatal diagnosis. After talking to her, she recommended a second opinion with her MFM doctor.  The doctor squeezed us in because she was headed on a medical mission trip overseas later in the week.

On Tuesday, June 6, 2017 we met with her and along with her genetic counselor.  We were informed our first MFM specialist was a scholar in this area. Her genetic counselor showed us books on his research. We didn’t care what kind of scholar he was, and didn’t care how many books he had written especially after receiving such unthinkable news.

After another level 2 ultrasound, she confirmed the same diagnosis, SRPS and advised to terminate.  I cried again uncontrollably.  She asked if we wanted to complete genetic testing while we were there, and at that point we didn’t have much else to lose. I opted for an amniocentesis not knowing what to expect, which was actually a blessing.  I knew it was a huge needle and had risks, but tried not to think about it. I completed the test, then Antoine and I had blood drawn. The genetic counselor provided more information on genetic testing, specifically the tests that would be run to confirm Nia’s diagnosis. After leaving the office, I cried again like it was my first time hearing the news. I just couldn’t contain myself. Antoine kept his composure at least for the time being.

After crying for what seem like days- we tried to smile through the storm!

Contemplating….What to Do???

Antoine and I were faced with a big decision on what to do. We were literally lost and initially felt like our only option was to terminate based on the expert opinions. This was a surprise yet VERY MUCH wanted pregnancy. Yes we are Christians and believe in miracles, but when the top professionals advised our baby WILL NOT live, we didn’t know what to do.

Our second MFM doctor mentioned she saw a couple endure the same diagnosis, and advised them to terminate because it’s too much to bear physically, mentally, and emotionally. They decided not to do so. She said as parents they held out hope that their baby can somehow survive. In the end, these parents endured unthinkable heartache and pain because the baby did NOT live. With that information, we initially thought oh no we can’t endure not being able to bring our baby home. That just seems unbearable; unimaginable. Maybe termination is our only option.

Making the Calls- The Appointment

With the information provided to us, we decided okay let’s see what would be the procedure to move forward with termination. The genetic counselor from the second opinion practice provided us two options on where we could terminate. When termination was mentioned by our first genetic counselor, we informed her that I would like to be induced because we would like our baby to come into this world in a dignified way.  The least I could do was go through labor and push our baby out. I sobbed even thinking of this process. I was in such a fog that my brain hadn’t quite registered that termination meant abortion of our wanted baby.

Both genetic counselors worked together to make initial calls to my insurance company and work with a hospital and clinic. I also, made a call to my insurance. I found out that my insurance would not cover such a procedure unless it was high risk to me or because of rape or incest. We were advised a letter of medical necessity could possibly overturn a denial. A letter of medical necessity was written to appeal the initial decision, and again denied. If we were to terminate the cost would be $4,000-$10,000. We were in shock and time wasn’t on our side. There were gestational deadlines to make a decision. We only had a week to decide for any procedures in Virginia and for Maryland we only had an additional couple of weeks to decide. I followed up with a clinic and made THE appointment for late June.

I just couldn’t contain myself. My days and nights were just unbearable. There were days I cried so hard, and couldn’t get out the bed or want to eat! I was pissed at life, our Creator, and the cards that had been dealt to us. I didn’t want to eat or take my pre-natal vitamins anymore! Antoine was my rock. He made me food, administered my vitamins, and encouraged me to try and get out the house. I didn’t want to leave home or see anyone. For the first time in my life, I had become a recluse.

I did manage to call another good friend that had been in my shoes. She was so helpful, open, and honest. Talking to her really helped to clear my mind even for a moment.

I had plans to travel to New Orleans for my linesister/sorority sister’s wedding that weekend, and Antoine was heading out of the country. I really didn’t want him to leave me. I just didn’t know how I would gather strength to be around people and have a sense of joy and happiness. With some prayer and deep conversation with one of my closest LS, I decided to take the trip. It was a blessing to be in the midst of my other LSs and sorority sisters celebrating love and happiness. However, I dreaded returning to my reality.

New Orleans
In New Orleans at LS Wedding- Beautiful Ceremony and Reception- Worked hard to smile despite my reality.

 

Shoe- Nia
Antoine wrote Nia’s name on a small shoe hanging in his rear view mirror June 2017- to always remember even if she was no longer going to be with us.

God Answers

Fast forward to the next week, Antoine had returned from his trip, and I asked him if He had heard from God or given any signs on what we should do- time wasn’t on our side.  He said nope. I personally didn’t have an answer, yet I didn’t have peace about THE Appointment we made. That night Antoine dreamed that I was waddling and he had to help me get around. He immediately told me the next morning, and we believed that was our sign from God to carry our baby to term!!!!!! At the time it was still hard to push forward daily knowing that our very much alive baby in my womb, would probably be dead upon arrival or a few hours afterward. It was even harder to continue to smile especially when all people wanted to know was my due date,  my baby shower date (that we never had), and if were having a boy or girl…all we could think about was if our due date meant the beginning to the end….

God’s Provision

As the summer went along we slowly received genetic testing results from carrier and fetal screening. Testing results normally take about 6-8 weeks. We learned that Antoine (at 6 ft 2 inches)- is a carrier of a very rare genetic skeletal dysplasia, Ellis-van Creveld Syndrome (EVC) that has some similarities of SRSP.  My initial screening came back negative for any genetic mutations. However, our carrier screening results were sent for additional testing along with baby Nia’s fetal cells. The additional testing revealed I had a variance of insignificance (this should not be a big deal, right) on the same gene that causes EVC. This variance actually became important in our case.  Nia had inherited my unknown mutation and Antoine’s known mutation, which manifested the syndrome in her. My unknown mutation had only been seen in one other EVC case in November 2016.

We learned Nia was initially misdiagnosed with a syndrome that is 100 percent lethal, but her actual disorder is a sub-group of this syndrome that is NOT ALWAYS 100 percent lethal, but yet still has a high mortality rate.  Her heart and lungs needed to function okay post-delivery and get through infancy. The odds were still against us.

A Little Bit About EVC

EVC is an autosomal recessive disorder and only occurs 1 in 60,000 births. It can cause short stature (dwarfism),  small long bones, congenital heart defects and short ribs/small chests, which can affect lung capacity, and polydactly- extra digits on hands and/or feet. There are very few cases reported globally- only approximately 150 plus. EVC is highly concentrated in the Amish-Dutch population, although seen in non-Amish communities as well. Our case is very interesting because there are very few individuals of color that have been known to have EVC, which is another reason we believe it’s important to share our journey.

There is a 25 percent (1 in 4) chance of having another baby with this syndrome.

Google pics can scare you, but we’ve met some beautiful EVC babies, thanks to social media and been blessed to have our own EVC and Congential Heart Defect (CHD) warrior who is absolutely gorgeous!

The Continuation

On July 31, 2017 we saw our first MFM specialist again.  He was happy to see us as our normal OB had been keeping him in the loop. We had initial measurements taken of our baby girl again and most importantly her chest measurement. We learned that although Baby Nia was small- she had growth INCLUDING HER CHEST!!!! He said this is really good news; we just need it to continue to grow. The best news we had received in about 2 months. On that same day however, we learned Nia had  a congenital heart defect. I knew it was a high possibility she could have one, but prayed that wouldn’t be the case. Yet here we were.  We were referred back to the Fetal Care team at INOVA Fairfax and they immediately called an outstanding Pediatric Cardiologist.

We saw her on Friday, August 4, 2017. She hadn’t previously heard of EVC, but was amazing with great bedside manners. We learned more about Nia’s heart via a fetal echocradiogram. The cardiologist was very thorough yet the information was overwhelming. We learned Nia has an atria septal defect (ASD) – a hole in her heart that will require open heart surgery. Hearing our baby’s chest would have to be open was a lot to take in. After the meeting, Antoine and I felt defeated, I cried again. After gaining hope, we felt like we were drowning again. Then as I got in my car leaving the doctor’s office, Richard Smallwood’s gospel song, Healing came on the radio. That song was a sweet reminder that God can heal and He can show up right on time.

Our maternity care was transferred to another high risk team at INOVA Fairfax that could actually deliver our baby since our initial specialist didn’t deliver babies. The transfer worked out perfectly since we could deliver at Fairfax and Nia would have access to a NICU Level IV immediately following birth.

Our visits with our new high risk team continued to show positive growth of Nia’s chest, and we learned from a second visit to our Pediatric Cardiologist that Nia actually has heart tissue that initially didn’t appear in the her first echocardiogram. This was awesome news because that meant her open heart surgery could be delayed longer than the initial infancy age of 4-6 months, which gives Nia’s heart more time to grow, and increases her survival rate-  Praise God!

In the midst of all the doctor’s appointments, we sought grief counseling through a therapist that specialized in post-partum and loss of infants at birth.  I even bought two copies of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief. However, I couldn’t finish this book- it was beautifully written yet gut-wrenching reading excerpts from parents who watched their babies die way too soon. Antoine never read his either.

Also, I asked Antoine to call funeral homes and crematories so that we would at least be somewhat prepared for a funeral/memorial service- if needed. If you know me- I am Type A and a super planner- always trying to plan for the unexpected- of course nothing could prepare me/us for Nia’s journey.

PEACE and the Unknown…..

We gained a sense of peace that we knew ONLY OUR GOD could give us in the last 6 weeks or so of our pregnancy journey. The Devil would try to creep in my mind when we would get a little more bit of strength and hope- BUT GOD! Thank you Jesus for it all. Even when Antoine suggested we buy a car seat and stroller about a month before Nia was born- in my head I was hesitant, but I knew God had placed it on his heart. So I agreed to go to BuyBuy Baby. It had taken us at least a couple of months to go to any baby store or section after our initial diagnosis. It would just make me sad- again BUT GOD! HE gave us unspeakable strength!

We still hadn’t prepared a nursery or bought any baby clothes- only the outfit she would  be memorialized or possibly go home in. We didn’t want to overwhelm our home with baby items if Nia would never go home with us- hence NO Showers or celebrations- that part still saddens me!

Nia Alexandria made her early debut on September 27, 2017 at 9:26am weighing 4 lbs 4 oz.  My due date was originally October 14, 2017- another post coming soon.

Delivery Day
Shortly after Nia was delivered via c-section

We are forever grateful for this journey, despite its ups and down and even heartache. We know Baby Nia has a long road ahead but we are just thankful to be able to hold her in our arms and bring her home. We know as her parents we are faced with many challenges but God hasn’t failed us yet. He continues to give us a ray of hope and sends messengers along the way to encourage us.

The following Bible verses and gospel songs helped me through my worst days- the days I couldn’t get out the bed, the tears that I couldn’t stop, and whenever fear tried or did creep within my mind.

The Lord will perfect that which concerns me.  ~Psalm 138:8

For you formed my inward parts, you knitted me in my mother’s womb I praise you, for I am fearfully and wonderfully made. ~ Psalm 139:13-14

Travis Green- Made A Way

Zacardi Cortez- God Held Me Together We pray Nia’s journey will bless others globally.  We never imagined such a roller coaster ride, but Christ our Savior built us for the road we are on now!

This blog post is dedicated to many others living in silence because they have been faced with a lethal fetal diagnosis and advised to terminate. Maybe you followed through! It’s never a simple course, and it’s hard to imagine what you will do until this decision becomes your journey in a wanted pregnancy! We pray that you have peace no matter your decision as it’s not an easy one. You truly don’t know what you will do until you walk this journey. We continue to pray for you as we pray for ourselves and ask for God’s strength and endurance.  Be Blessed…

Erica S.

Team A&E

1st Year Open Letter to My Miracle Baby Girl- Nia Alexandria! Happy Birthday!!🎂🎉🎈

Nia this 1st year of your life has been an incredible journey- one that only God Himself could’ve written. When I first knew you were created in my womb- my perspective on life change immediately!! Mommy was so happy- that I ran downstairs to tell your dad while he was in the shower- that we were going to be parents!!! Little did I know our parenthood pregnancy journey would be an experience of a lifetime! You showed us early there was nothing textbook about you- including being able to wave at 12 weeks in my womb! 🤣

September 27, 2017 is one day I will never forget- your birth wiped away my 17 weeks (your initial diagnosis date- June 1, 2017) of tears and broken-heartedness at the thought of losing you! Nia we are sorry in some ways because we had prepared for your death and burial, while still believing in God’s miraculous works! See God used your dad’s dream to save you- because we had made the appointment to terminate you, not because of lack of faith but going along with the textbook medical expert answer! But Again you proved not to be anything of a textbook!

The way you decided to cry on your birthday was your way of telling me- mommy I am fearfully and wonderfully made! I am your imperfect perfection! Dwarfism doesn’t define me mama! Don’t be sad! I am here…and my God you are here!

My heart broke initially knowing you had a form of dwarfism- as I had prayed to God before you were formed to NOT have a small/short baby. This prayer went unanswered from God because He truly wanted to show me how tough I could be even in the midst of my brokenness . Not many people witnessed my physical, mental, or emotional pain from your prognosis!

I want you to know, this prayer was not because I don’t love all of me (and you? including my height, but more so the world/society has a way of cracking jokes and making you feel less than if you are of certain physical stature. God gave me exactly what I thought I didn’t want or need. He made me face my fear and hidden insecurities head on. I blamed myself for your condition- but then quickly realized your dad (even at 6ft 2 in) had this special gene change and I just so happen to have an unknown magical gene change as well that gave us beautiful you! We are the perfect storm together and you are our lightening strike! 😍

Was I angry initially yes, because I was ashamed and didn’t want the world to judge you for your physical appearance and you have to endure the stares and judgement of others! Everyday, I am getting better at accepting your condition- and realizing how amazing you are- you are perfect! I love all your 12 fingers and ten toes, and Hawaiian Silky Hair! You are truly a doll- and broke the mold of what a “little baby” should/would look like! I no longer shed tears for your condition, but cry because you are all mine (and your dad’s), and of course God’s beautiful creation!

My heart and psyche have endured so much in this last year (and a half), but your smile and tenacity have kept me! Your birth brought me joy, yet your NICU stay brought a complicated sense of joy and pain in ways I never imagined! Mommy fought so hard for you- and vowed to protect you! I maintained survival mode and strength because your name spoke every thing about you- Purpose baby! I didn’t know that I needed you honestly, until I Needed you! The day you stopped breathing, my heart couldn’t fathom the thought of losing you- again!!! So grateful that God understood as well! 💗💗🙏🏾😘

You really have brought so much love and happiness to your daddy and I! Your spirit and journey have touched so many and we pray that you continue to bring light into this world!

You have defied the odds even developmentally- though you are g-tube fed, everyday you work to take more and more food by mouth while mommy continues to pump liquid gold into your tube!

It looks like you might skip crawling and will instead just walk! Wow! I am sitting on the edge of my seat waiting for you to just take off one day soon! I remember your milestone of smiling back at me for the first time, and when you decided to sit up on your own right before you turned 8 months- and considering you had an almost 4 month NICU stay! Your claps and hello waves are just too much for me!

Nia though you may be small in statue- according to society’s “normal” standards you are truly anything but that! You are strong, you are big, you are smart, you are mentally tall! I am here to witness you break glass ceilings and continue to fall outside of the textbooks! You aren’t your condition- you are fearfully and wonderfully made!

The world will know you beyond Ellis-van Creveld Dwarfism! As your mommy, I may not have a medical condition, but I too am petite and fierce- so I will be sure to lead by example to help you navigate life’s challenges! You won’t hear “can’t” from mommy or daddy! We may just have to improvise along the way!

You are loved by so many so I know there will be many to cheer you on! Just know that mommy and daddy will ALWAYS be your Number 1 supporters!

I never knew love like this until I had the chance to feel you grow from the inside out!

Nia Alexandria you are 1, you are 1!!!! I am in complete awe that we are celebrating an almost unimaginable milestone just a year ago! I love you “Doll Baby.”

And we know that all things work together for good to them that Love God, to them who are called according to His PURPOSE! ~Romans 8:28

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. ~Jeremiah 29:11

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. ~Psalm 139:14

A person is a person, no matter how small! ~ Dr. Seuss

Though she be but little, she is fierce! ~William Shakespeare

Love,

Mommy (ELS)

Nia’s NICU Journey

Nia’s Neo-natal Intensive Care Unit (NICU) Journey is the most difficult thing I/We’ve ever experienced, which is why it’s taken months to write.

In honor of NICU Awareness month, I share our story.

It was a blessing yet unfathomable, unrelenting, traumatic, joyful, dreadful, overwhelming, awful (at times), and a roller coaster ride- full of ups and downs. September 27, 2017, December 5, 2017, and January 24, 2018 are three dates I will never forget!

Spending 118 days in the NICU- two different hospitals might I add,  was nothing we ever expected… but let’s be honest we weren’t expected to have any days beyond Nia’s birthday with her- so for that we are thankful.

I can’t ever get the smell of the hospital out of my nostrils- the monitors, the alarms- various beeping sounds, smell of Poly-vi-Sol, Palmolive dish detergent, cords everywhere, and my dry skin from scrubbing in and out of the NICU God knows how many times a day!  Care time- was also unforgettable- a gift and a curse (more on that later).

There were many “firsts,” but the biggest one yet was holding Nia for the first time- over 55 hours after giving birth! The wait felt like an eternity, BUT It was an incredible moment. I cried tears of joy- completely in awe of God’s miraculous work! Then  Nia’s first sponge bath,  approximately a week later- she graduated to a big girl crib and her first non-hospital sponsored (required) baby outfit!

First Time Holding Nia- 55 hours after giving birth- September 29, 2017

Exclusively Pumping Mama

Beyond firsts for Nia was a huge first for me- adjustment to pumping life! As a NICU mama warrior, I committed to providing Nia all the breast milk my body would produce for her- thank God I had a great supply despite exclusively pumping (EP). For NICU mamas it is hard seeing your baby endure and the only thing you may have control over is pumping (if you choose or are able to do so)- feeling like a cow 😂 and more pumping to give your baby the best medicine possible! However, Being an EP mama did not come without a sacrifice and at times overwhelming because it took precious time from Nia and a race against the clock for her next care time (diaper change, temperature check and ever 12 hours changing the CPAP from mask to bonnet), despite being able to pump in her private room. For breastfeeding mamas it’s already exhausting, but just imagine being attached to a machine for 6-7 times a day, while trying to manage medical team members stopping in (sometimes) while you are pumping and taking in information about your baby’s care. However, I refused to quit (AND STILL GOING STRONG)! At times pumping was a good distraction from our reality and sometimes chaotic life that was centered on essentially living in a hospital.

The Beginning of a Long, SLOW Journey

Since Nia came out pink and screaming, and requiring non-invasive respiratory support, Antoine and I thought we might spend a month in the NICU at best (ridiculous thinking, so naive I guess), not 118 days- 2 days shy of 4 months.

The First Day/Night- Rewind 

Before I ever held Nia, I will never forget my first time seeing her in the NICU. I worked to get myself together quickly despite having a C-section that morning! I made my way to her NICU neighborhood- the Garden and scrubbed in. I will never forget being wheeled to Nia’s room and being able to stand solid on my two feet straight up- with no regard for my fresh incision just to witness, see and touch my/our living miracle. She was perfect- all 12 Fingers and 10 toes! She was breathing with non-invasive respiratory  support and a little oxygen- CPAP pressure of 6 and oxygen at 23 percent (room air is 21 percent)!

Antoine became an immediate super dad! He literally would take the small syringes and eventually “snappies” bottles provided and ensure the little colostrum aka liquid gold I produced was expedited to Nia! He ran downstairs to the NICU after each pumping session and washed all my pumping parts! I didn’t have to lift a finger- a complete blessing!

The beginning of liquid gold in NICU “snappies”

Fast forward to my discharge day!

My heart sank at the thought of leaving Nia alone for even a short amount of time! I didn’t officially discharge until closer to 7pm because it was unfathomable to leave our baby. Initially, she had great nurses, but a core team would’ve been preferred. However, that didn’t always come easy!

Antoine taking a peak at his precious miracle- oh the joy (see the soft smile on his face)- PROUD DADDY! 

Antoine  first time holding Nia!!!

 Leaving the hospital! We were so excited to be new parents but sad to leave Nia.Our Baby Girl was breathing- nothing but the blood of Jesus!!!! Antoine’s Shirt Credit- gift from his faternity- linebrothers

The First Full Week

Within the first week of Nia’s NICU stay we began to understand the routine of things. Rounds by the neonatologists (NICU doctors) were from 9am-11am. Monday rounds seemed to always be the biggest since it was the beginning of  the week-  changes to feeds, respiratory support would likely happen. The weekly labs sucked for Nia because she was a hard stick- meaning her blood either hemolyzed too fast or they couldn’t draw enough. Initially she had weekly x-rays to ensure her naso-gastric (NG) feeding tube was placed in the right location. Nia also had routine echocardiograms to ensure her Patent Ductus Arteriosus (PDA) closed; to ensure her atrial septal defect (ASD) remained stable; and to double check for ventricular septal defect (VSD). The cardiology team watched closely for that because it would be something else to complicate her heart defect. Thank God the PDA closed on its own and no signs of VSD, which would’ve definitely put Nia in the operating room before 6 months old.

Crib Life

Driving the Train for Nia- Month 1

The first 2 weeks Antoine and I spent about 8-9 hours during the day. We would leave and come back for a few hours at night. When Antoine returned to work, he would go in really early  so that we could have most of the afternoon and night with Nia. After 30 plus days NICU fatigue set in! If you’ve had an extended NICU stay you know what I mean!

NICU Parent Warriors- Advocates!

As NICU parents it is critical to advocate for your baby/babies and convey that you understand how things operate and you are educated on your baby’s condition, and ask questions.  We learned Nia had to initially have a  peripherally inserted central catheter (PICC) line because she needed additional nutrition- TPN. That meant we couldn’t see her for at least 12 hours because the environment had to be sterile. Thankfully, the PICC line didn’t stay too long.

Nia had two attending neonatologists that rotated weekly between one another. One of her neonatologists had exceptional bedside manner, open-minded and willing to explain his thought process. When we felt like we were on a good foot, the rotation would change, and at times led to mis-communication. In this learning process, we also understood early on that family meetings are useless unless the medical specialists (i.e. cardiologist, pulmonologist) are part of the conversation.

A sense of frustration grew because there was no clear direction of what to expect as it related to Nia’s care plan. I discussed with the medical team that Nia’s rapid breathing couldn’t be addressed the same as a preemie baby because her lungs would always be smaller- because of Ellis-van Creveld (EVC) complexities! That seemed to fall on deaf ears and we received the response that the medical team had treated rapid breathing over and over again and how they were treating her lung condition was a normal course of action!

Caveat: INOVA Fairfax is outstanding for preemie and micro-preemie care as a NICU Level IV institution, but Nia did NOT fall into those categories. This NICU only had seen one other EVC case in five years prior to Nia’s birth, because her condition is so rare- 1 in 60,000 births and less than 300 cases reported globally.

By the end of month one Nia appeared ready to wean from CPAP to a high flow nasal cannula (HHNC), which came two days after she turned 1 month! Things seemed to be going well, but there was no real discussion of discharged plan. The biggest thing pushed on us was nutrition and slower breathing, so I continued pumping but never stopped wondering how to get Nia out the NICU. In the back of mind was the hospital I had found doing research while I was still pregnant…

In the midst of Nia making overall good progress, her bottom (butt) had a complete breakdown- beyond a normal diaper rash. That’s when I turned from diplomatic Erica, to Mama Bear. Why is her butt broken down???? I had been at the NICU 9-10 hours a day, what were the nurses doing- forget care time! Nia was quite the pooper in the NICU, and I had to literally spell out to some of the nurses (UGH) why her diapers had to be changed before care time. If Nia poops 30 minutes after her initial care time, she can’t be expected to sit in it for the 3-4 hours- RIDICULOUS and not acceptable. This was not my first discussion about this- I was over it- and expressed my frustration to both nurse managers! In return her board was updated- I’m a pooper.

Nia was a good and overall stable baby in the NICU, but at times that assessment also came with a cost. We were thankful she was less critical than some of the other precious babies, however she would at times seemed to be ignored or not checked until care time by the nurses. So I made a point to start spending 14- 16 hours a day. I know a lot of people thought well at least your baby is being cared for and you can get some rest- just because my baby is not home doesn’t mean I am resting well! I would rather have sleep deprivation because Nia was at HOME.

In between trying to care for Nia there were other logistical things we had to think about- getting food everyday, checking on our home, making sure bills still got paid, oh and making sure our fur baby– Miles was cared for! Antoine handled most of these things and we had amazing friends and some family that made sure we had food from near and far!

A Little Fun in NICU Life

There were some happy and fun moments in the NICU… Nia would have fun onesies that cracked everyone up… We had to laugh to keep from crying some days!

Nia- The Pooper- Diaper Loading Please Wait! 😆

Halloween 2017- Dr. Nia! Halloween Sign Credit- NICU Nurse

Sign Credit: Sweet NICU Nurse

Back to Discussion with doctors…Advocating for Nia

After so many questions and no straight answers, I remembered from some research that I had conducted while pregnant- learning and getting up to speed on EVC- there was one particular children’s hospital that specialized in treating dwarfism and more specifically EVC- Nemours/AI duPont Children’s Hospital in Wilmington, DE. This hospital is about two hours from the DC area. I asked Nia’s favorite neonatologist would he be amenable to a conference call with the medical team there so we can gain a better sense of Nia’s care plan as a baby that has EVC. He was open to it!! He always wanted the best for Nia- despite being a LSU grad- LOL! (We talked SEC football non-sense since Antoine and I are Ole Miss alum).

Month 2

INOVA Fairfax Medical Team Conference Call With duPont

Thanks to our awesome genetic counselor at Fairfax, she was able to coordinate the conference call with duPont and Nia’s favorite neonatologist. We were not on the call but our genetic counselor took lots of notes. We learned that Nia’s oxygen saturation parameters should be different than other babies because of her heart defect- ASD. That was a blessing as Nia was still being treated similar to a “textbook” case preemie baby/ which she never was. I tried to articulate this message over and over! We learned there were some amazing doctors part of this duPont EVC team- from neonatologist, pulmonologist to cardiologist- All this would be important later…

Nia Turned 2 months andddd Stopped Breathing- Advocacy Became Critical

At 2 months, November 27, 2017- less than a week after Thanksgiving, Nia overall looked great- though still breathing pretty rapidly. She was now down to oxygen only – no CPAP at just around .4 liters of 100 percent oxygen. The weekend leading up to turning two months- Antoine and I noticed her chest retractions were more defined than usual and she was a little congested and seemed more tired than normal. We didn’t think much of it initially. Antoine seemed a little stuffy as well, but nothing more and decided he would wear a mask as a precaution. Well the mask led to him being asked several questions by the medical team- are you sick? The problem with the questioning was there were medical team members walking around coughing, and sneezing with no masks/ but no questions asked of them- since I am assuming they “didn’t need to a mask”- whatever!

I digress, well for the first time while Antoine and I were at the hospital together, we decided to go off campus for lunch. We were completely burnt out on Panera inside the hospital. It’s a nice option, but two months straight of Panera whew! Upon our return to the NICU from lunch and walking into Nia’s room, we were met by her attending resident. She let us know that Nia had to be bagged- what!!! She immediately said everything seemed okay, Nia was just working harder to breathe so they moved her from low flow oxygen back to high flow pressure and oxygen to decrease the amount of work she was having to do. Okay…

Fast forward… Antoine stepped out to get something to drink while I finished pumping. I was finally ready to pick Nia up with the assistance of our favorite NICU nurse (now forever friend), and Nia’s O2 saturation levels started to dip below her normal parameters for her ASD heart condition, and then her lips turned BLUE, and my baby looked back at me for the first time with fear and panic in her tiny eyes! The nurse looked at me and said I am so sorry but I have to call a MSET. I knew we were in bad shape before that call but it literally seemed like pandemonium had happened. Doctors and nurses were running from everywhere.  Nia had to be bagged over and over again!!! Being in the NICU for 60 days at this point I had seen this MSET call before just not for my baby 😭…I literally fell apart- inconsolable tears and a couple of nurses comforted me. Lord did you bring us this far to take our baby from us! I couldn’t wrap my heart and mind around what was happening. I went out to the Parent Lounge to let Antoine know what had happened.

At this point the doctors were thinking virus or bacterial infection. so a lot of tests were ran.

Nia’s favorite attending neonatologist-  finally came to the parent lounge and he didn’t have a warm look.  His face looked very serious and concerned. Antoine and I thought is this doctor coming to tell us Nia had died… I just couldn’t fathom how things had changed in an instant.

He informed us she Nia finally somewhat stable, but her breathing was incredibly fast. She was on the verge of intubation- say what! Nia had never been intubated  before despite her condition, and that apparently is rare. He said they would have to keep watching her and if she continued to work any harder to breathe, intubation was still on the table- which he really didn’t want to do!  He truly believed in Nia.

He informed us that they were running tests because he believed she had caught a cold from Antoine. Of course all types of anger and guilt set in. First thought was, we were cautious, second thought we were offended- one of these nurses could’ve given her a cold.

That night Nia sucked on her paci so hard that she made one of her natal teeth bleed and it had to be pulled with tweezers.

In the midst of the chaos, tests slowly started to come back and they showed no sign of infection.

I planned to return to work the next day, but clearly God had other plans. I set a schedule to work 40 hours every two weeks and 40 hours of Family Medical Leave Act (FMLA) leave without Pay (LWOP), so I wouldn’t tank all of my leave prior to Nia coming home.  Instead another week of FMLA LWOP- the cons of federal employment….no true maternity leave.

Before we stepped out to lunch! Nia’s 2 month photo- before the day turned south

After the second time Nia stopped breathing!! Back to CPAP (which was set at 7- higher than when she was born) while praying for no intubation

Fast forward, the next day…Nia was doing better, and all tests were negative for infection. In the midst of this I made a call to the EVC cardiology expert that had been on the duPont conference call. She knew exactly what had happened to Nia. Nia likely had an hyper-cyanotic episode- hence turning blue. These episodes can happen in EVC babies with no clear cut explanation. Over oxygenating EVC babies can cause similar responses, which we learned later was mostly likely the case. The cardiologist informed us she or the EVC team couldnt treat Nia so far away and we need to transfer her ASAP.

We decided to do just that. I informed Nia’s favorite neonatologist that it’s best we do so.  I also had a candid discussion with him that we were offended that he initially concluded that Antoine made Nia sick. He apologized and said he initially believed Antoine had gotten Nia sick. Nonetheless, the neonatologist supported the transfer and genuinely wanted the best for Nia (He continued to check on her)!

Prep to Transfer- First visit/meeting to duPont

This process was fast! DuPont contacted us on Friday, and we set up an appointment to travel to Wilmington, DE on Monday to meet with the medical team there to see if this would be the place for Nia’s care. We met with the Cardiac team, Chief of Pulmonology, and Chief of Neonatology along with the neonatal nurse practitioners  (NNP)that were part of the EVC expert care team. They showed us a FLOW CHART of how the intake process works for EVC babies- WOW!!!!! We were impressed!  Nia would have a G-tube placed within a few days of arriving to DuPont.

We had been waiting for a while for this surgery to happen at Fairfax, but there had been a conservative approach to do so (Nia was actually scheduled for this surgery prior to her coding), while at DuPont it was probably one of the first surgeries that many EVC babies have and within two weeks of birth. Nia was already 2 months old! Now keep in mind duPont’s NICU aesthetics was not nearly as nice as Fairfax but as long as she could get excellent care-  it didn’t matter!!! While we were on our visit, the social worker informed us we had been approved for transfer, and that we needed to move on it ASAP! Antoine thought we would have at least til Wednesday, and the answer was NO- NOW- tomorrow!!!!

At that moment- I can’t lie, anxiety set in- the reality of what would be the cost to transfer Nia, how would we manage our home, the cost of traveling back and forth from the DC area to Wilmington and all the toll fees especially with me not working full time at this point. Then there was God, reminding me how he has never failed us yet- He has brought us this far to even be at this point with Nia! It will work out! I am forever reminded- of Phil 4:19- But my God shall supply all your needs according to His riches in glory by Christ Jesus. 

Word spread fast back at Fairfax that we were planning to transfer Nia. Apparently there was rumint of it over the weekend, but the fact the process was expedited was even more shocking. I had just met with the Clinical Director over the weekend to demand a formal Care team- but that point was null and void….Nia time was up at this NICU and we were ready, yet it was so bittersweet.

Medical Transfer/Transport Day- Road to Dupont- Wilmington, DE

December 5, 2017– Transfer Day was filled with many emotions as this NICU had become our second home. A lot of the staff couldn’t believe we were leaving. The medical team expressed how gracious I had been as a NICU mom, yet advocating for Nia to no end! We definitely had nurses and some families we would miss and a couple of the doctors, BUT we did not regret transferring Nia. She deserved a team that knew how to care for her complex condition.

The transfer was seamless! Dupont’s medical team arrived via their own ambulance and transport incubator. Nia was pissed and not happy to be put in this enclosed case.  So many people came by to see us off! Nia truly had won and touched the hearts of so many people in just two short months, despite some of the frustrations we faced in this NICU.

Transport Day- Portable Incubator that Nia hated!

The team loaded her up and we made our way to the ambulance. I was able to ride in the transport with Nia while Antoine drove separately and met us there! Two hours from home here we go…

Nia’s Arrival to Nemours/A.I. Dupont Children’s Hospital

Nia arrived at Dupont Children’s Hospital and immediately became unhappy again when the ambulance stopped moving! The transport team made their way with Nia to the NICU and we had to wait in the parent lounge until she was all checked in. They had her on pre-cautionary contact isolation for MRSA just because she was a transfer.  Finally, the charge nurse came and got us, she was also Nia’s nurse until night shift. I must say we loved Nia’s night nurse (she signed up to care for Nia every night she worked!

We knew it was an older NICU from our first initial visit, although other parts of the hospital were new. The first thing we noticed was this NICU was much smaller than Fairfax. There wasn’t a 21st century feel to the rooms, and some rooms were doubles not single. At Fairfax, every baby had their own private room for the most part, unless you were a twin.

For the time being Nia had her own room, but we were immediately informed this could change once the team felt she was stable. We were advised that specialists would be by to speak with us the very next day- whoa this place was fast. We had planned to leave Nia and come back on Thursday- which I believe God knew I wasn’t prepared for the separation. However, we had no clothes or anything for an overnight stay.

We requested to stay at the Ronald McDonald House of Delaware, but they were full! So we had to stay at the hospital overnight, but luckily Ronald McDonald had a couple of overnight rooms at DuPont where we could at least shower and one parent could sleep- Antoine took the room and I stayed with Nia. We went on a Target run before midnight to get a few necessities- changing clothes and toiletries. By that morning we were contacted by the Ronald McDonald House we had a room available! Thank God! That really helped to cut the expenses for lodging.

That same morning the pediatric surgeon met with us to discuss Nia’s G-Tube and Fundoplication (Nissen) surgery. A  nissen is when a little portion of the stomach is wrapped around the esophagus to prevent aspiration, which could be deadly for Nia if it got into her lungs.  He is specifically the expert for EVC babies g-tube surgery because he understands their unique anatomy. He explained to us what to expect, including how long the procedure would take- approximately 45 mins or so,  and how quickly Nia would start feeds via her new feeding tube, which was no later than the next morning. We were shocked because at Fairfax their approach was a little more conservative- somewhere around the 3 days or more mark would be the slow introduction of feeds. Nia’s surgery was quickly scheduled for Friday, December 9, 2017- only 3 days after her arrival at DuPont.

Later that morning all the other specialists came to met with us- the chief of the  cardiac ICU and the chief of pulmonology.  Nia would have another echocardigram to ensure her heart defect remained stable as it appeared from previous visuals. The pulmonologist discussed the condition of her lungs and current respiratory support. It was indeed a long day but well worth it because these doctors definitely worked together as a true interdiscplinary team. They had weekly discussions and rounds of complex medical cases. Our hearts and minds were finally at ease. We felt okay to leave Nia for a day or so.

We drove back home to the DC area (Alexandria) that night. I cried leaving Nia, not because I was worried about her care, but being two hours away meant I couldn’t just hop in my car like at Fairfax and be at her beside in 25 minutes. It would be only the second time we hadn’t seen Nia in a 24 hour period since she had been in a NICU. We quickly returned in the wee hours of Friday morning so that we would be at Nia’s bedside prior to her G-Tube surgery.

G-Tube Surgery Day

We arrived at the hospital around 7:30am as they had planned to take Nia for surgery by 8:30am. When we arrived she was unclothed outside of her diaper and a white hat. She was awake as if she had been waiting for us to come back. Around 8am the cardio-thoracic anesthesiologist came by to explain his role- which we were surprised about that! That’s pretty awesome- totally unexpected and had not been a discussion before, but again DuPont understands the complexity of EVC babies. The surgeon quickly stopped by and then the surgery team arrived to take Nia away. I shed tears for sure- and we prayed over her. Out the room she went- but not before a couple last minute pics.  We felt at peace but for any parents it’s still nerve wrecking for your baby to be taken away even if it is a “simple” procedure. Any procedure for Nia is never simple.

Last pic before doctors took Nia for her first surgery

Nia came back from surgery intubated, which was a little scary. She was awake but initially couldn’t make any noises then we started to hear her little cry despite her being intubated- that was a little hard to hear. The respiratory therapist thought Nia would stay intubated for possibly 24 hours. However, the attending neonatologist and NNP disagreed. They believed in Nia and overrode the RT and said “nope we are pulling it.” Nia’s O2 saturation initially started bottoming out, but the team didn’t flinch. They were so calm and got Nia respiratory support under control- she was extubated within 2 hours of surgery, which was a huge shock! 🙌🏾🙌🏾

Nia was in pain the first 24 hours but after that she did well! On Sunday, we left Nia to go back to the DC area for work for a couple of days. That was incredibly hard to do.

Two days post surgery

For the next three days I finalized the logistics for living and working in Wilmington. I left Antoine back in DC and headed to be with Nia. It was hard leaving Antoine because we are a team and He has been on this journey with me- but Nia needed me by her side. It felt so good to have her back in my arms.

Upon my return to the hospital the discussion of Discharge Plan came up. No Way!!!! Discharge Plan what’s that.

The lead NNP for Nia’s case, believed that it was critical to get Nia home so she didn’t contract any infections from being in the hospital too long especially in the medical team’s eyes Nia was one of the healthiest EVC babies they had cared for- WOW! Really? At Fairfax there seemed to be no end in sight- as it seemed the medical team only felt comfortable sending babies home on oxygen not actual respiratory support- like a ventilator. However, at duPont they were innovative in this department. They knew immediately how Nia could be fully supported at home in a safe environment.

There was even an ambitious discussion to have Nia home by Christmas, but we made the staff aware- there was no need to prematurely send Nia home- we need to make sure we had all our ducks in row.

In the meantime, Antoine drove in the wee hours of the morning to Wilmington after working long hours to FLEX his time so he could spend long weekends with us. I would eagerly await (using my time wisely- pumping overnight) at the Ronald McDonald House to let him in.

Learning Nia’s A-home Care

We were shown what her home ventilator would like and how to properly use it. It was even “portable,” although heavy to carry. We were shown how to feed Nia via her g-tube and had to be proficient before discharged.

We took a CPR course at the hospital as well and watched numerous videos related to at-home care. While learning all of this we had to identify an in-home nursing company for Nia and coordinate meet and greets with the company we decided to go with. Additionally, we had to travel a few times back to our home in Alexandria to pick up Nia’s at-home equipment and meet with potential nurses that would care for Nia.

Nia’s Hospital grade home (portable) ventilator-respiratory support- Trilogy

Meeting Another EVC  baby and family in the hospital!

It was a blessing to meet another EVC baby (boy) and family! He took Nia’s old room- as Nia had gained a roommate in another room. It was a blessing to meet his family- Amish Dutch- in any other circumstance this would probably be unlikely meet between the both of us. Because EVC is so common in their community, we actually met their daughter who has EVC and some of their friends kids living with the condition. I was amazed! That gave us renewed hope that there is calm after the storm.

Breakfast with another EVC Family

We had another sweet family (non-Amish) that drove to meet me on a Saturday (Antoine had to work). There beautiful daughter has EVC, and she was absolutely adorable. She was strong and independent! I loved her spirit! So grateful again for social media- which led to this awesome met! 🙂

The Holidays at DuPont!

The holidays were actually not bad in the hospital considering our circumstances although we truly missed our family and friends. It was beyond exhausting though, living the hospital life, but we didn’t take this journey for granted.  We had a baby to celebrate and be thankful for- what else could you ask for!

We learned more about Nia’s care.

We adjusted overall well to Nia sharing a room. Nia’s new NICU roommate was born prematurely on Nia’s due date, October 14! I don’t believe in coincidences- all part of God’s divine will! Baby Anya was so sweet and so was her family! It took a little adjustment sharing a room- but we managed well. For the first two months of our NICU journey, Nia had private single rooms.

Christmas Time

DuPont actually had a Christmas store for families to shop for free- it was so cool! We were able to get a couple of gifts for Nia, my nieces and nephews, And for ourselves- gift cards!

We were able to get a  good home-cooked Christmas dinner with some family friends in Baltimore- and then back to Nia we went!

Nia’s First Christmas

Nia at 3 months with her daddy! 😍

New Year’s Eve was Antoine’s bday so I had a day planned with the movies and dinner in Wilmington. Antoine loved the theater!

We brought in the New Year at Nia’s bedside.

End In Sight!

We were so close to going home by the beginning of January- and we were ready! We were completely exhausted from traveling back and forth to Wilmington- coordinating Nia’s in-home care and still trying to work at least somewhat- but we got it done!

Nia passed her car seat test with flying colors which is another required NICU benchmark! 🙌🏾😍

Nia’s car seat test! Someone was totally unbothered- 3 hours later! 💗💗💗

The Scramble to Finish Nursery

We couldn’t believe our baby would be coming home soon and the once blank guest room was now transforming into a nursery- Oh another miracle! To know we didn’t have a thing for Nia’s nursery prior to her birth, but somehow God provided- what a testament to God’s grace!

Nia’s nursery- fit for a NICU Warrior Princess!

Required Overnight In-Stay

Then it was time for our in-stay at hospital where you are required to do approximately 24 hours of care without any medical team help! That was an interesting night- because some things definitely remind you- this isn’t quite home but we survived!

Thennnn Graduation Day!

NICU graduation morning started off great, but then a glitch came that could’ve derailed Nia’s discharge… her g-tube Mic-Key had to be changed and we needed training on how to replace it if necessary- Say What!!!! We have checked the box for everything how was this miss???! I kept thinking noooo we have to get out of this hospital. We are done! Nia’s lead NNP was determine to rectify the problem and she did!

Doctors, nurses, and all other personnel came by to say their “see you laters.” It was an awesome feeling- Nia would get to finally see her nursery that we had only created after she was born!

Some of Nia’s awesome nurses/discharge team!

As we walked out of Nia’s NICU room- I  played “Pomp and Circumstance.” As I got to the NICU exit- I broke down in the most exhausting tears ever!!!! I said I wouldn’t cry but the joy  and liberation that came over me was nothing but the Holy Spirit- Jesus kept us and Nia!

Walking out the hospital- 2nd NICU with a breathing and thriving baby was exhilarating and magical!!! It was truly another miracle!!! My God, My God! We survived! Walking out of the NICU with our baby in tow help to ease the heaviness of our journey.

We took our grand exit walk one last time and it felt so good!

In the car we went and 2 hours plus past Nia’s feeding time (she did soooo good) we finally arrived home to Alexandria, VA.

Nia’s at-home journey began…

“I can do all things through Jesus Christ that strengthens me.” Phil 4:13

“And We know that in all things God works for the good of those who love him, who have been called according to his purpose.” Rom 8:28

Journey Down NICU Memory Lane

 

This blog post is dedicated to NICU Warrior parents! We pray our story enlightens family and friends of those on this journey that it’s truly a tumultuous journey that test your physical and mental capacity. 

Be Blessed!

Erica

Team A&E

Mother’s Day- A New Purpose

As I embark on my first official Mother’s Day there is so much to reflect on in this last year and half!

This day is so special because I’ve never imagined I would be blessed to celebrate this day based on Nia’s initial prognosis. Cheers and blessings to this personal celebration. God continues to reign and pour blessings unto me/us through our tenacious baby girl, Nia!

Through all of Nia’s demands and even my tears- at times trying to understand why were we giving this arduous assignment of ensuring God’s precious cargo arrived safely. I am thankful and blessed!

Nia reminds me to never take the small things for granted.

Around this time last year I was reminding Antoine- I am a mother although I was still pregnant at time 😬, and the red carpet should be rolled out for me 😂! Not realizing two weeks later our lives would be forever changed by a lethal mis-diagnosis to a rare diagnosis filled with so many unknowns, and the lingering pain of possible infant loss.

Through the midst of all the unknowns, joy, and sorrow, my purpose has been redirected and re-shaped to include such a special angel that only God Himself could have created just for us. At times I don’t know if I am built for this assignment and then His sweet voice whispers- you are! I will ensure you have all the tools you need- trust me as I have entrusted you!

This pic below is a reminder that God hears our cry- when I am weak and filled with worry He sends reassurance in the small things- on Monday, April 30, 2018 (Nia is 7 months old now) we were able to leave Nia’s medical equipment in the car and freely have lunch outside at a restaurant- what pure joy! Nia was so happy and so were we! It’s the simple things! 🙌🏾🙏🏾

Throwback Pic- Less than 48 hours post birth- the time I was told I would never have with my daughter- the trauma and pain I endured thinking for 4.5 months of my pregnancy my baby girl would be DoA- dead on arrival. But my God- your grace and mercy- provided and answered a fervent and sometimes silent prayer! I didn’t become a motherless mother on September 27, 2017- Life was spoken and given to Nia- more time than I could’ve ever fathom- this Mother’s day will be forever cherished! Nia has been here 7 months longer than any expert said she would- thriving! She is small but that’s not all! #NiaStrong

“…Truly I tell you if you have faith the size of a mustard seed, you can say mountain move from here to there, and it will move. Nothing will be impossible.” ~Matthew 17:20

“But my God shall supply all MY needs according to His riches in Glory by Christ Jesus.” Phil 4:19

Happy Mother’s Day!

This post is dedicated to mothers facing or have faced the unexpected or unimaginable with their babies/children. We empathize with you- the feelings of being robbed of a positive pregnancy or birth experience- There are times that anger, grief, and sadness overcomes me because of our (my hubby and I) own unique journey! We are sending extra love on this weekend and day. May God grant you peace in the midst of your overwhelming thoughts and emotions- you are not alone! Hugs and love to you!

Blessings

~ELS

A&E

Nia’s Birth Story

Nia’s birth story started at least a couple of months before she was born…the princess needed a grand entrance so pomp and circumstance was necessary.

I mentioned before, my care was transferred to a high risk team at INOVA Fairfax since the Women’s Hospital and NICU Level IV were in the same location.

Fast Forward to Pregnancy Week 35…

We discussed Nia’s growth and I mentioned the steroid injection I could receive to possibly help Nia’s lungs. He said the shot couldn’t hurt so why not.  He said the next week I could have it as I was very adamant about it. My doctor said I was doing fine and no signs of labor just yet so he approved me for one last mini trip.

I traveled to New York City for work, as my mom held her breath and couldn’t believe I was traveling so far along. Momma I am fine- it’s less than an hour plane ride up and down – my doctor isn’t concerned neither is Antoine.

I was determined to allow Nia to experience life in my womb if she didn’t have long on this Earth. In New York I had some great cuisines and Nia seemed to enjoy as well!

I returned back to the DC area safely.

At my week 36 appointment I had my usual non-stress test and ultrasound Nia was looking good and practicing breathing. I had my first dose of the steroid shot- I didn’t know it would be administered on the backside. The next day I came back for the second dose.

He reminded me to keep drinking lots of water.

Week 37- The BIG WEEK

The next week, Tuesday September 26, 2017, We had two doctors’ appointments- Cardiologist and Maternal Fetal Medicine (MFM).  The cardiologist completed one final fetal echocardiogram on Nia’s heart. The appointment went great and Nia’s heart looked the same. Her main concern was insuring Nia’s patent ductus arteriosus (PDA) closed after birth- so that would be something to watch for. The PDA is an extra blood vessel found in babies before birth and just after birth. In most babies who have a normal heart, the PDA will shrink and close on its own in the first few days of life. If it stays open longer, it may cause extra blood to flow to the lungs, which Nia definitely didn’t need with a smaller lung capacity. After the appointment I advised Antoine to go to work and I could handle my afternoon appointment with the MFM- high risk doctor on my own.

I headed to Chick-Fil-A. For some reason I was craving a Spicy Chicken Sandwich Combo with a lemonade. Antoine actually likes the spicy chicken sandwich- not me! I guess Nia was really craving this sandwich LOL! Nia and I ate good…

Of note-  I was not a huge fan of afternoon high-risk appointments because Nia likes to sleep after lunch- this is no good for a non-stress test!

I arrived at my appointment and then hooked up to the NST monitor- I am so tired- I am sure it’s from my good lunch LOL! The nurse for some reason says I can take a nap- and I agree. However, taking a nap is not ideal for a NST because you can’t successfully hit the button to capture when the baby is moving- high risk pregger mammas will understand. Needless to say Nia fails her NST for the first time since I’ve had to take it. I just shrugged it off she is just sleepy. The medical team didn’t think much of it either and said we will just take a better look during your ultrasound.

During my ultrasound the sonographer did the usual of taking measurements, but particularly for this appointment she kept saying come on baby girl show me your breathing and then Nia did J. She kept looking around, and finally she said let me get your doctor.

The doctor came in and took one quick look and said you have no amniotic fluid, we have to take your baby NOW and it has to be by c-section! We can risk her not having enough oxygen going through the birth canal. I immediately burst into tears. I am not ready for Nia to come yet. She needs more time to bake, her lungs need more time. I have to have surgery…I was in the room alone. He said you need to call your husband now, but we may not be able to wait for him! Wait! WHAT! No you have to wait for him. I can’t deliver Nia alone.

I immediately call Antoine and tell him to get to the hospital immediately because Nia will be delivered ASAP. He is calm on the phone and rushes to get to me. I am prepped to be admitted from the Antenatal Testing Center to the Labor and Delivery Unit. I called my mom and bestie immediately. I cried hysterically. My bestie didn’t’ answer immediately- so I texted call me ASAP. My mom said no you can’t have her now because I am not there! Things were happening so fast- it was overwhelming. I kept thinking I need more time with my Baby God! I just need more time!

I called my bestie around 330pm EST. She didn’t answer immediately and I texted her call me ASAP. She called back and I told her what was going on. She kicked right into action. By the time I heard from her again she was throwing stuff in a bag. She informed me she had a flight out and would arrive around 1145. I said okay perfect I will see you tomorrow. She really meant 11:45pm that night! She was packed with my mom in tow and on the next flight smoking out of Memphis at 5:55pm!!! I couldn’t believe it! She is a wife and mom of two small kids! She dropped life that day- really rest of the week for me and made sure my mom could be there too! Outside of my hubby, she is the real MVP!

After this call, I was wheeled upstairs to the Labor and Delivery floor. I was still in tears and couldn’t believe this was happening. My baby Nia is coming too soon. I kept rubbing my belly- scared at the thought of delivery. What we would it be like? Nothing could’ve prepared me for this type of delivery day. After my arrival upstairs, I completed the registration process. Thank God, I completed my registration weeks in advance of delivery.  That part was a breeze. However, there were so many people coming in and out of my room area. It was insane.

My IV was placed. I really didn’t like where they had placed it on my wrist. The anesthesiologist came to inform me of his part for the c-section and what should I expect. I learned that where i would be poked couldn’t cause paralysis because it’s at the end of the spine where all nerve endings are.

Antoine arrived soon after.

The neonatologist on duty came in to explain what we should expect with Nia because of her syndrome/dysplasia. He was a nice, soft spoken Korean-American doctor. INOVA Fairfax had only seen one other baby in the last FIVE Years with Nia’s syndrome! That baby had a flappy trachea plus cleft palate along with other things that could possibly come with Ellis-van Creveld (EVC)! He said Nia would probably need ECMO or an oscillator because of her lung capacity. I immediately interrupted the doctor to ask, do you mean life support? He said yes. Honestly, Antoine and I really dismissed this prognosis of needing invasive respiratory support despite knowing the odds were against us- we relied on that sense of peace we had gained in the final weeks of our pregnancy- despite the chaos we were thrown into on this day!

Timing

The neonatologist informed us he really wanted to wait to deliver Nia until the AM because there was another critical need baby that would be born within the hour and would require of a lot of attention because of an intestinal issue. However, it was our call but wanted us to understand we would be sharing time with the staff- when Nia most likely would need all hands on deck. He said we probably wouldn’t get a chance to see Nia after delivery because she would need immediate attention. Those words were a little hard to digest- but I just shook it off.

My MFM then came in to weigh in with the neonatologist. My MFM wanted Nia to come immediately because he didn’t want to put her at any more risks than she was already up against. However, the neonatologist reasoning for postponing our delivery was valid. MFM agreed to wait, but with one exception- if at any point Nia’s heart rate starts to drop, I would have an emergency c-section overnight which was so scary to even imagine- as if non-emergency C-section itself wasn’t enough. Antoine insisted on us having a time for delivery if we were going to wait overnight. Getting a time seemed a little more complicated than it needed to be. One of the MFM fellows, got us a time- we were going to be the first c-section case of the day! 8:30am!

All the doctors left and there we were left in the room to ponder and wonder what next. What would the next 12 hours bring??? Would Nia manage to survive with little to no amniotic fluid? Why was this happening? Lord are you really going to take our baby from this Earth?

Soon we packed up my triage L&D room and then I was moved to my L&D room. Unbeknownst to me- Antoine called my baby sis to ask her to bring my hospital bag- She arrived with all my needs including what I forgot to pack.

Last Night Preggers

I kept thinking can I convinced the nurse to allow me to shower. My sweet nurse allowed me to take a quick shower but it could be no more than 15 mins because i need to have continuous monitoring of Nia’s heartbeat and movement.

I couldn’t believe my Nia would no longer be within me- I enjoyed carrying her and just wanted the night to slow down.

I showered and laid back down. I asked Antoine for my last pregger request- Gourmet Bell- I mean Taco Bell lol! My third trimester I wanted Taco Bell more times than i could count – but specifically a Mexican Pizza with Chicken no beef and easy on the beans with lots of mild and fire sauce. My Taco Bell craving was so bad I would send my sis and Antoine to taco bell just for the sauce and i would make my own tacos at home most of the time!!! Lol 😂😩🤣 Blame it on Nia! I hadn’t eaten Taco Bell in years prior to being pregnant.

I emailed my virtual fellow EVC warrior mama friend and informed her of what was happening and asked for her family’s prayers. Well she made a global prayer warrior call for our baby Nia. Her testimony and faith had been a blessing to us, yet I was still in awe of her willingness to think of us in such a way!

My bestie and my mom arrived at the hospital around 1am. My sweet Charge Nurse made sure we had extra chairs some everyone could camp out overnight. Oh the night.

We all talked about the outfit Nia would possibly wear home OR memorialized in. Wow! So many emotions, thoughts and feelings. Were we preparing to say happy birthday and death day???…

The Big Day!

The next morning was go time! My chapter sorority sisters had a super early morning prayer call for us! I missed it but heard it was powerful! 💗💚 All the prayer warriors were showing up and speaking to God on our behalf! We prayed as well!

The lead Anesthesiologist came to explain the procedure he was very kind African American doctor with a great sense of humor. I actually saw him the night before as I was wheeled to my L&D room. He looked to be headed home because he was out of scrubs- he smiled and I thought he seems to have a kind-spirit, not realizing He would be the person taking care of me to make sure my delivery is painless as possible.

He explained everything with sincerity yet humor! I loved it! Then my MFM came in to inform me of what would happen.l

Then I was wheeled away around 830am (so a little off schedule), but not before a few final pics of my pregger belly and with my bestie- She really showed up- and it meant the world to me!

Operating Room

In the operating room the lights were super bright! OMG! I guess the doctors need to see everything! My MFM team was absolutely amazing- funny yet professional! One of the female doctors was hilarious and we talked about a whole bunch of everything and making sure I would have minimal scarring. She was originally from Miami- so we joked about making sure my incision would heal and be swimsuit ready- especially since my currently hidden abs were all my glory and I didn’t have one single stretch mark! Thanks Cerave and Bio Oil- because stretch marks run in my family. She walked me through my spinal block with the administering anesthesiologist, while the lead anesthesiologist oversaw my operation.

Then the administering anesthesiologist felt down my spine, and I remember him saying nothing is happening yet.

Then I was asked to sit forward, and I felt the initial small pinch and then my lower half started to go numb.

Then I was immediately assisted to roll over and back. Then things started happening fast.

I saw the infamous blue curtain over me- that I’ve only heard about until now- c-section mommas know what I am talking about…

The Delivery Production

It was a production it seemed. All things were ready for Baby Nia. The Medical team was all there- I couldn’t see many people but I could hear them. Then I heard my MFM say, Ask Dad to come in. Then I knew the show was about to start.

Antoine walked in fully scrubbed up, and he held my hand. So many thoughts were going through my head. Although we had shown so much strength and grace during this process- I couldn’t help but think will Nia show us how strong she really is??

The MFM team were ready, and from what I could hear it seemed life half the NICU team was ready as well! What I didn’t know at the time, so many people were in our room- waiting on Nia because of professional curiosity but yet our Fetal Care team were praying for a miracle.

Go Time

My MFM doctor began and said incision has been made. Yet I couldn’t feel much of anything except some gentle pressing on my stomach. Then at some point my whole body started shaking, I didn’t know what was happening. It was awful, I thought I was going to to fall off the table. Antoine held my left hand so tight, yet my right hand/arm I couldn’t control. The administering anesthesiologist said he couldn’t give me any medicine for this shaking until the baby was out- OMG! In the midst of this unstoppable shaking, I was trying to listen and focus at the same time on what was happening below my blue curtain. I heard my MFM say not too long after incision, baby’s coming then baby’s out! Nia came over my blue curtain crying/screaming on her own- no helped needed. She had a head full of hair- wow! Then immediately I was injected with some magic that stopped my shaking immediately. Thank God!

I couldn’t believe it, a miracle had been performed in this operating room- I was so in shock and in awe that I didn’t have tears immediately, I just remembered seeing the one medical team person I could actually see to my eyes- His Eyes were like WTF- what just happened here! This baby is crying on her own. I learned later, there were tears in the room from the medical team. There were so many happy and shocked people.

I could still hear Nia crying. They cleaned her up and then the greatest moment happened- Nia was actually brought over to us- She was only on CPAP! Wow- totally unexpected. There was no sense of urgency to take her away we even had time to take a couple of pictures.

The doctors finally took her away to the NICU to see how she would do in the first few hours post-delivery.

My MFM medical team worked to finish getting me squared away- there were conversations about making sure I had great healing. Throughout the entire operation the team never tugged and pulled on me- definitely blessed!

Once done, I was wheeled away to the recovery room- now that felt like forever. I remember lying in the bed thinking wow Nia is here and breathing with little support.

For some reason it seemed like it took forever for me to get out of the recovery room. Honestly, not sure why.

When I finally arrived to my post-partum room- I was so happy. I could finally rest. My MFM doctor came by. He informed me that it was definitely the right call to deliver Nia. There was no amniotic fluid, and I had a velamentous cord insertion (VCI) with my placenta, which I learned later can be sometimes difficult to diagnose in utero. VCI has the potential to cause low birth weight and/or still born babies. There was no explanation for the non- existent amniotic fluid-I had no ruptured membranes.

My doctor said yes Nia is nothing short of a miracle all the way around. She fought to be here on so many levels.

So the NICU journey began…..

Dancing in the Rain

After Antoine and I decided we were going to carry Baby Nia to term, despite the odds being against her/us- what better way to celebrate this life than a Babymoon!!!! At times we felt like we were drowning in Nia’s diagnosis,  but instead of living each day in sadness we wanted Nia to experience what we loved to do most- vacation at the beach!

Prior to finding out we were pregnant, we had planned to travel to Barbados for our 5th year wedding anniversary and stay a week. However, we could no longer do so due to me being pregnant and Zika still being an issue in the  Caribbean .

Instead of Barbados for our anniversary trip, we decided on a babymoon to Amelia Island, Florida in late July 2017. This trip was absolutely amazing. We stayed at the Omni Resort, Amelia Island and had some of the best local cuisine in Fernandina Beach, Florida area.  We lived this babymoon up by including a maternity photoshoot. If Nia didn’t have long with us, it was important to capture how beautiful she made me feel. The photoshoot was absolutely amazing. We had a ball! From my makeup artist, Monica Hayes to  our awesome and spunky photographer, Kellie Boston of Boston Photography.   We had our photoshoot on the first day and were able to truly vacation our next few days on the island.

Antoine and I laughed, rested,  had good eats, woke up to beautiful sun rises, walked the beach, soaked in the sun, and shared great reflection on our pregnancy journey. Throughout our babymoon, I received so many compliments on how beautiful I looked preggers and still able to dress fashionably. Those nice words went a long way because no stranger  knew that the odds were against us and that this pregnancy was anything but favorable.

On this trip we reflected on how blessed we were to become parents no matter for how long. Nia was kicking and growing in me, regardless of what the ultrasounds and experts said. She was enjoying being sunny side up and snugged close on my right side. Allowing this beautiful life to grow in me and being able to give her the best on this earth is what mattered even if she never got to live outside of my womb.

Nia didn’t mind all the goodness from this trip either, especially food 🙂 We had fudge, ice cream, local seafood, and whatever yumminess that came along. This was a happy place and we didn’t want to return to our reality. In all honesty,  we wanted time to please slow down because the faster time tick the less time we had with Nia……

So instead of thinking of the end, we decided to Pray and Dance in the Rain!

Amelia Island- Sunrise July 2017- Widescreen
Sunrise from our resort room!
Sunset Photo- Me on Rocks
Maternity photo taken on personal phone 🙂

Amelia Island Sunset