Last Friday, February 1st marked the beginning of Heart Health Month and the kick off began with National Wear Red Day to raise awareness on this issue. Heart Health Education and Awareness has always been near and dear to me because I have a family history of heart related conditions/diseases including genetically inclined high cholesterol, congestive heart failure, and heart arrhythmia.
Raising and Caring for a Heart Warrior
This health issue takes on a whole other meaning as I (We) am now raising a Miracle Heart Warrior. Being Nia’s mom has really increased my knowledge and awareness on the impact of congenital heart defects (CHD) to our everyday lives. Finding out Nia had a CHD initially felt like another dagger on our salted wound- especially with ominous news that our baby’s fate was pretty grim.
We held out a little faith and hope that just Maybe she didn’t have a CHD which could possibly increase her slim (to none) survival rate Hearing at 29 weeks gestation, Nia indeed had a CHD was heart-breaking. For me, I thought wow she probably won’t stand a chance. Seeing her local amazing cardiologist for the first time was overwhelming as Nia initially was diagnosed with a atrial septal defect (ASD) and ventricular septal defect (VSD) which meant if (and big If) Nia survived she would need surgery within the first 3-4 months of life. Well God had another plan- as we all know now- her VSD magically/divinely disappeared. It no longer showed on her echocardiogram (images of the heart) at birth! 🙌🏾🙌🏾🙌🏾🙌🏾 To see Nia pink on delivery day was and still is a magical visual moment forever in my heart and mind!
Since Nia has a un-repaired atrial septal defect (ASD)- hole in her heart and a leaky valve we’ve spent our winters hibernating her from others because of the high risk of flu and RSV. I’ve written numerous times how a cold could be deadly for her- and yes it is true until her heart is fixed! We are blessed and thankful she was approved for Synagis again which is a very expensive RSV antibody shot, that will help her body better handle such a deadly virus if she contracted it. Praying though we never have to face this diagnosis… I am continuing to pump liquid gold- breastmilk into her. 🙌🏾😊
To Family and Friends of CHD Warrior Parents…
If you know someone that has a baby with a CHD please understand and respect their wishes If you get an invite to visit but you feel like you are coming down with a cold or getting over a cold to just stay home… Yes it’s that serious! Don’t judge them for all the soap and hand sanitizer they have around their house, handbags, or back pocket. They are being extra cautious because their precious cargo is even more special 😘
If they won’t allow you to pick their baby up or visit be respectful too- as their doctor’s have already scared them enough, and they may have been hospitalized unexpectedly 1 too many times already, If they’ve had an extended NICU or Cardiac ICU stay then they are more than likely traumatized by the clinic setting and the thought of returning unexpectedly. Help them to not have to be Mama or Papa Bear because if you’ve met NICU and/or Heart Warrior Moms and Dads they are built a little different from other awesome moms and dads. 😉❤️
Congenital Heart Defect Facts
Below are some facts on Nia’s condition and CHD:
⁃ Ellis-van Creveld (EVC) babies have a 60-70 % chance of being born with a CHD which ranges from ASD, VSD, HLHS, and leaky valve (not all encompassing)
⁃ Babies with EVC have a restricted rib cage which complicates managing a CHD
⁃ According to research conducted by duPont Children’s Hospital and the Clinic for Special Children in Lancaster, PA, managing babies with EVC and CHD shows that if heart surgery is delayed until approximately 2 years of age there are no mortalities
Additional Facts about babies with CHD
⁃ According to the Center for Disease Control, approximately 40,000 babies are born with a CHD every year
⁃ CHDs are a leading cause of birth defect-associated infant illness and death.
⁃ About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.
⁃ About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.
Please help me/us raise awareness for Congenital Heart Defects (CHD) in babies!
For more information on raising heart health awareness see links below.
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.
It’s been exactly one year (okay and one day) since Nia graduated from the NICU, Wow! Time surely does fly!
We are so grateful for this milestone. It’s fun seeing life in hindsight… I am still in awe of our miracle, and God’s miraculous works. According to science, Nia really shouldn’t be here and she almost wasn’t going to be… but God!!! Thinking of Nia’s Journey til this day still brings me chills- wow! The even more amazing part is that she is imperfectly perrfect. Through her rare dwarfism we’ve been humbled. Although this journey is not the parenthood assignment we initially wanted, it’s the assignment we needed- God chose us!!!
She is beauty, she is love, she is sweet, she is intelligent- seriously, she is funny (actually really hilarious). Beyond all those things our baby girl is here a year later, post 118- day NICU journey and thriving beyond any clinicians dreams (prognosis).
Nia has touched so many lives including ours. She has transformed us in ways we never imagined. Personally, I am on a journey to spread love, advice, knowledge, and awareness on navigating the healthcare system and complex medical needs. Who knew our journey would put us in a position to bless other families in this last year! Wow!
Nia’s journey has blown our minds. While we’ve had some unexpected setbacks we’ve had some unexpected blessings as well!We couldn’t be more grateful for our sweet angel!
Cheers to 1 Year Post-NICU Life!!! Nia will forever be a true #NICUWarrior
And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. ~Romans 8:28
Erica, Antoine, and Nia
1 Year ago January 24, 2018
Picture on the left first day home and pic on right one year (and a day) home!
In the midst of Nia’s all day routine medical appointments on Thursday, 20 December 2018, we managed to pull off paying it forward to current NICU (North and South) families at Nemours A.I. duPont Children’s Hospital.
Nia in good spirits at her last appointment before the Elf Squad made our special delivery ❤️❤️❤️
Thanks to tremendous monetary contributions from close family and friends we were able to spread a little love and prayerfully hope and words of encouragement to mothers and fathers by providing a hot catered meal from our favorite local place during our NICU stay, El Diablo and a little token of love that included a journal, Tag for Tots, and a gift card to Einstein Bagels which is located inside the hospital and not actually hospital food 🙌🏾🙌🏾🙌🏾.
We know this NICU journey is hard and lonely, and hospital food is even more depressing. Food is comfort and we wanted to make sure all the new moms and dads could enjoy a different food flair while now having a way to memorialize their thoughts, feeling or any pertinent information for the day (using their journal).
Our love for duPont is indescribable. Walking through the doors of the hospital we are always met with love, care, and compassion like I’ve never seen before. There is a vested interest and a sense of empowerment giving to us as parents to be in control of our child’s care.
Although we had appointments before dawn, all were timely and all doctors were cognizant we had a long day. We were so blessed to end our day of medical appointments by showering our former temporary home with a little love from us.
To all NICU parents currently enduring this journey- know there is hope… Our baby Nia was counted out even before she ever graced this earth on September 27, 2017 but a year plus later we are home and she is truly defying the odds! We pray that your NICU Warrior will do the same and graduate too!
Even if your journey doesn’t turn out the way you expected, know that you are awesome and amazing for fighting and advocating to no end for your biggest blessing yet- your NICU Warrior. Your unique journey is encouraging others. Your strength is not lost and you are not forgotten!
Peace and Blessings!
~The Elf Squad aka The Shoemates~ Antoine, Nia, and Erica 🤗
I am thankful for the breath of Life and Thanksgiving Outside of the NICU 🙌🏾🙌🏾😍💗💗💗💗🍁
Thanksgiving last year we split our time between attempting to celebrate our blessings at home and then making our way to be with Nia in the NICU.
We are so incredibly thankful for a sweet friend that brought a whole Thanksgiving Dinner to us during our NICU journey last year! Alexis and Jeff W- we love you all!
As I write this post, I am incredibly emotional as this is another milestone for us! We are home this year for Thanksgiving and all together. We woke up this morning with sleeping arrangements a little different from most parents with a toddler. Since our home health Nurse called out last night, Antoine and I had to camp out on Nia’s bedroom floor so she could sleep in her own bed. Our journey doesn’t allow the freedom for Nia to sleep alone without being monitored! Yes we have a camera/monitor in her room! Antoine is an Engineer and gadget guru 🤣🤣🤗❤️ BUT we have to make sure Nia doesn’t flip over and put her entire face in her mattress. So before we went to sleep we had to place her pulse oximeter on. Nia fell asleep before her Triology/CPAP could be put on- so we just winged it and let her be- back to us being dubbed as the #WingitParents because of this journey. We don’t always follow the rules or doctors’ orders every night- and just thankful today we don’t have to since Nia is a little stronger! So no machine last night but we made a pallet on the floor instead to hear her breathe and not solely rely on a machine to tell us if her oxygen saturation or heart rate dropped too low!
Our Thanksgiving Morning 2018! Pallet and Pulse Oximeter- the simple things!
Thanksgiving 2018- we are thankful for our eternal God allowing us the gift of life- birthing and parenthood experience beyond the walls of the NICU. We will never take it for granted! We are thankful for Nia’s medical equipment and devices- Infinity Feed Pump, syringes, g-tube (Mini one profile), g-tube extensions, bolus and gravity feed. Gravity feeds are lifesaver on time when we are exhausted- thank you Antoine for being risky and trusting that Nia can handle it. We are thankful for Lasix, which helps prevent fluid build up around Nia’s heart and lungs with her congenital heart defect. We are thankful to be able to continue to produce breastmilk as an exclusive pumper- 13.5 months postpartum! 💗💗💗
We are thankful for Nia’s triology/CPAP which expedited her discharge from the NICU at duPont Children’s. We are thankful for Nia’s expert medical team including the local DMV team- her pediatrician is a jewel and rockstar; duPont Children’s (NICU and Cardiac Center) and expert cardiologist in Lancaster, PA! We love you all! We are even thankful for INOVA’s NICU team for taking care of Nia for the first two months of life (despite some mishaps and frustrations along the way)! Much love to Dr. B and some of our NICU nurses- now forever friends!
We are thankful for our new family and friends we’ve made in the NICU at INOVA Fairfax and duPont Children’s Hopsital! What an awesome and amazing blessing seeing our babies a year later and watching other amazing Warrior parents in action advocating for their precious gifts too!
My emotions are raw and real and can’t help but think of the families that have lost loved ones and precious babies that may have never experienced life outside of the hospital! We love you all and truly thinking of you today! Our hearts ache for you- because we understand all too well the fragility of life! One minute things can be fine and the next minute things go south- we’ve been there- Nia coded twice right after Thanksgiving last year! Please know that your are loved and not alone! We see you and you can reach out anytime- morning, night, overnight!
All I can say is God what a difference a year makes! We couldn’t have made it without your divine intervention- God’s grace and mercy brought us through and continues to do so- even through frustration, pain and chaos! Death was for certain for our sweet Nia- #ButGod #MadeAWay
It’s not about all the food we can eat today but about the unwavering love God has shown us and the insurmountable strength He has given us along this journey! We are thankful for every single moment we get to be Nia’s parents here on this Earth!
Happy Thanksgiving! Be Thankful for the small things! #NiasJourney #ButGod
I will give thanks to the LORD with my whole heart; I will recount all of your wonderful deeds. ~Psalm 9:1
Pics from Thanksgiving 2017
Thanksgiving Morning 2018- Beautiful Nia asleep in her own bed #FearfullyandWonderfullyMade
This post is dedicated to all NICU, Cardiac ICU, and parents that have lost their sweet babies too soon! Today is not easy as you see posts of new gifts of life at home or out and about, and you are sitting in the hospital by your baby’s side instead OR having to relive the would’ve, could’ve of the life you yearned for your heavenly angel babies to be! Love you all! Sending hugs and love your way! 😘😍😍😍❤️❤️❤️
Nia has been tube fed since birth, because initially she experienced tachypnea (fast breathing), which can be typical of Ellis-van Creveld Syndrome (EVC) due to the narrowing of the rib cage. It’s been a difficult road as I continue to exclusively pump liquid gold for her! We truly believed Nia would take a bottle within the first 3 months of life- but that never came…God had other plans! At times I felt like what’s the point of pumping milk if I won’t get the nursing /bonding experience that I had yearned for… #BUTGOD…I am so thankful he instilled in me Type A characteristics because as I said before- pumping is the one thing on this journey I can control- I continue to compete with myself. As a result, Nia continues to bounce back from any sickness she encounters.
Of course any type of sickness for her can be deadly because of her congenital heart defect and narrow rib cage- #BUTGOD… She is truly a trooper!
My breast-milk is fortified to increase Nia’s caloric intake, with approximately 10ml of Enfamil Nutramigen concentrate formula for every 100 ml- to 22 calories an ounce. Breast-milk is only approximately 20 calories an ounce. At times we feel like dietitians, physicians, pharmacists, and any other medical specialists you want to throw in 😂😂🤣🤷🏽♀️
Back to the point about being thankful to eat food by mouth…
As a NICU baby, Nia had a Naso-gastric (NG) tube through her mouth and then nose and then back to her mouth (see pics below) and had to be changed weekly with a required x-ray to ensure tube was inserted properly in her stomach. This pomp and circumstance lasted for the first two months of her life.
NG tube in Nia’s mouth
NG Tube in nose- thank you to her amazing Neonatologist, Dr. B at INOVA Fairfax! No one else had been successful with inserting this tube in Nia’s nose
Chubby Nia- NG Tube back to Mouth after Nia’s coding episodes 😢
After Nia’s transfer to duPont Children’s she had surgery for her G-tube/Nissen fundoplication. A Nissen procedure is when a small amount of the stomach is wrapped around the bottom of the esophagus. Again I went through some pumping resentment because of the surgery, but kept producing milk for Nia in spite of these feelings. This G-Tube surgery had many pros, but seemed like more cons in the aftermath. Nia no longer needed to have a tube changed weekly, and her meds could be administered via the tube, and we didn’t have to worry about when she gets sick how to give her calories and hydration… BUT there were new issues- Retching (which we were warned about). Since Nia has a Nissen it’s almost impossible for her to vomit if needed to prevent aspiration into her lungs- which could be deadly for her. However, to watch Nia have these episodes were terrifying and heart wrenching. Just imagine gagging over and over and nothing can come up- that’s retching…for mostly every feed! We learned some tricks for relief called “venting” the tube and the Farrell bag, but neither were always that helpful.
Nia a few hours post G-Tube and Nissen surgery
Needless to say after about 6 months of this- Antoine’s engineering/mathematician light switch came on…. 🙌🏾🙌🏾🙌🏾🙌🏾. Game changer… Nia would get her full feed but broken into halves for about a 10 minute break in for “venting” to let gas/air out via the g-tube. It wasn’t her body couldn’t handle the full feed but she is always super gassy.
Venting the tube” – See air/gas bubbles in milk
Nia’s at-home feeding pump- Infinity Orange designed specifically for infusion of breastmilk
We have continued to worked with Nia alongside feeding, physical, and occupational therapists almost daily with taking a little food by mouth since she is no longer tachypnea. She initially gagged a lot because her gag reflex hadn’t been pushed further to the back of her mouth due to the lack of traditional bottle feeding. However, we gave Nia toys and she started exploring with her mouth. We continued to work on various textures and then the introduction of a spoon.
At around 9 months, Nia saw me drink water from a water bottle and wanted to try! Guess what!!! She was able to swallow water immediately without me ever practicing with her! Then on our first mommy/daughter brunch date with a sweet NICU family, Nia watched me drink out of a straw and decided she could do that too- with no previous practice!!!! Nia is a baby genius- seriously she is sharp! I think it’s the breastmilk, right????!!!! 😍😍😍🤷🏽♀️🤔😊
She does everything on her terms- doesn’t want our help! 😬😬😬
Our hard work and her retching-gagging episodes have paid off as our sweet baby is now very interested in what’s on our plates to try by mouth!!!
The Kicker- Praise Break- Moment of Triumph
About three weeks ago Nia ate 75 percent of her Earth’s Best Chicken Pot Pie Pouch- that’s her favorite! This mama had a moment…
I know this doesn’t seem like much to most but it’s everything for us! Every single milestone and breath from Nia- we literally take it all in! So you know what that means- the watershed started as I cleaned all her messiness! 😭😭😭🙌🏾🙌🏾🙌🏾
Thankful is an understatement! Still a work in progress on this feeding journey, but boy has she come so far and can work a spoon so well!
We still have five bolus feeds a day via the pump- which is work to clean and rinse tubes and feeding bags, but we will celebrate every single milestone!
Be Thankful for the small things!
I will bless the Lord at all times. His praise shall continually be in my mouth. ~Psalm 34:1
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 okay– well 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.
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! 🙂
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!
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.
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.
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.
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 withtermination. 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.
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….
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!
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.
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…
#NiasJourney has been a complete roller coaster with many tears of joy and many tears of sadness- emotions that I couldn’t ever imagine…
The second half of my pregnancy I battled un-diagnosed depression after learning that Nia wouldn’t survive beyond birth and the recommendation for termination not once but twice at 20 and 21 weeks respectively. My heart couldn’t fathom or bear such pain… thinking of the death of our baby! Thoughts of how she would be delivered- possibly already dead flooded my mind at times- yet on the outside I continued to smile through the pain.
Nia appeared in this world defining all odds- breathing and screaming!! 🙌🏾🙌🏾🙌🏾
Then the long NICU stay- two different hospitals (INOVA Fairfax and duPont Children’s Hospital) in two different states. Before the NICU transfer, Nia coded twice, and after her transfer she had g-tube surgery.
BUTTT… on January 24, 2018 Nia was discharged from duPont Children’s NICU in Wilmington, DE and the road to home began!
Nia in car ride home after being discharged from the NICU! 2 hour car ride and she did great despite missing a whole feed!
Video of Nia’s First Car Ride HOME!!!!
Life at Home
After being home for a few weeks, I became super on edge and completely overwhelmed with Nia’s care despite having home health care, my mother moving from Memphis to help us, and my awesome hubby being a team player… All those wonderful hands weren’t enough to keep the intrusive thoughts from invading my brain. I would imagine Nia’s g-tube being pulled out by moving her attached feeding cord, or her being dropped and bmleeding, or the anticipation of her being cut straight down her chest from open heart surgery. I am sure while in the NICU I was in survival mode for so long- that I didn’t have time to think.
I tried to ignore these images for months. In the midst of battling intrusive thoughts, Nia caught a respiratory infection from one of her home health providers (that’s a story for another day) late February early March 2018 and deep down I felt overwhelmed with the thought of her having to be admitted to a hospital and we just got home! Thank God for her medical team! I sent videos to her duPont care team and contacted our local pediatrician and pulmonologist. She was treated aggressively since her threshold for getting sick is low. I kept pumping her with liquid gold and Pedialyte. She felt better within a few days.
Nia’s 1st Hospitalization Post-NICU discharge
I became super snappy with my hubby and family, and then an unexpected hospitalization in April 2018 was the final straw.
Nia was admitted into the hospital for rectal bleeding completely unrelated to Ellis-van Creveld Syndrome (EVC) on Saturday, April 14, 2018. The fear of going back to INOVA Fairfax was real! The sound of the hospital emergency room monitors beeping sent me over the edge and I immediately burst into tears. I couldn’t help but think this hospital stay will be too much and the consultant model for medical specialists in the hospital is one I despised! duPont Children’s wasn’t set up that way.
Nia was hospitalized for almost a week and would’ve been longer had we not been super advocates for her!
Nia was admitted to the Pediatric Intermediate Care Step Down Unit. She was diagnosed with pneumatosis (air pockets in the small intestinal wall, likely caused by an infection). Initially the doctors thought it was Necrotizing enterocolitis or NEC, which is normally seen in premature babies. Technically Nia didn’t fit the threshold. Thank God that was not the case. Sunday the general surgeon, infectious disease doctor, and hospitalist came by at different times. I reiterated Nia must be evaluated from a holistic approach because of her complex medical condition- no decision can be made in a vaccuum.
We did have an amazing Resident doctor who we didn’t realize was a resident because guess what- He actually listened!
By Monday though, I was fed up with the communication disconnect between specialists, so during rounds I informed the team they all have to get on the same page- a conference needed to happen via phone or in-person. I also advised that the hospialist speak with Nia’s expert cardiologist (she is located in Pennsylvania- but part of her EVC care team at duPont).
We were initially advised everyone was so busy- I don’t care if the specialists are consultants of the hospital and are busy- you are a physician first so you take care of the sick! This half communication and care isn’t going to work! The team said ooookay! Then the social worker asked did we want a family meeting, and I informed her we didn’t need a family meeting. The medical team needed the meeting (See NICU journey about thoughts on family meetings) I know what family meetings mean at this hospital and I want nothing to do with it- can’t just appease us with words! We had actually considered transferring Nia to duPont after talking to her expert cardiologist.
I understood what was happening very well, and the team was not on the same page.
Nia was placed on bile rest meaning no food only IV Fluids and antibiotics. She is a trooper and didn’t get pissed about not having food until Tuesday night. Then she was hangry!
Vasovagal- WHAT’s THAT??
The Resident did contact Nia’s cardiologist in PA, and had an at length conversation. He was really impressed with her level of knowledge beyond just understanding the heart. There was discussion on what would happen next for Nia’s care during rounds Wednesday morning, and it eventually became too much for Antoine- he started to feel lightheaded and started sweating as were talking to the medical team. He had to be wheeled over to the emergency room and was diagnosed with vasovagal, which is when your body reacts to certain triggers of emotional distress and the hospital was one of them for Antoine on #Niasjourney.
Fast Forward- The team wanted to be conservative on re-introducing her feeds but she hadn’t passed blood in her stool since that Sunday. There was discussion of PICC line and then a central line because she might need to TPN… well we said absolutely not to a central line. This procedure is simple until it’s not! Nia’s expert cardiologist agreed…
Within 24 hours Nia was on pedialyte to get her GI system moving again… The team talked about the slow re-introduction of food and stated it might be Monday or Tuesday of the next week before we could go home! Then I became even more assertive! No we aren’t staying til Monday we are totally capable of taking care of Nia at home. We had already spent 118 days in the NICU and are young professionals. Yes we want the best for Nia but she is a trooper and can pass any test. So we requested the doctors test her on milk sooner rather than later.
Antoine and I informed the team Nia would get a introduction of milk by Friday and if she did well she would get two Bolus feeds Saturday morning via her G-tube and that’s it! Going HOME! That’s exactly what happened! Nia responded totally fine!
This hopsital won’t continue to add up $$$$ when its not necessary. I get being conservative about preventing re-admission but also it’s important to really understand our capability to take of care of our daughter and honestly all we’ve had to endure!
Back at Home after 1st Hospitalization- My Emotions
Post this hospitalization I would continue to have moments where I cried full of sorrow for Nia and our circumstance. I was angry at God at how it was completely unfair that we had to endure this journey and even more so Nia having to deal with so much. It had become too much! I wanted a normal baby like everyone else I knew. This was not the parenthood journey we imagined at all- tube feedings, home ventilator, and home health care. I would cry anticipating the day someone would tease Nia for being a little person. I understand being teased all to well. I am not a little person but folks always loved to joke about my height and it gets old. My heart ached on so many levels because I wanted to protect my baby and just wanted a sense of normalcy.
Accountability for Mental Health Help
My best friend/sorority sister/linesister could hear through our phone conversations I wasn’t myself and she challenged me to seek professional help. She held me accountable and gave me certain deadlines to make an appointment to see a therapist. I discussed with my hubby, mom, and baby sister some of my mental and emotional thoughts/feelings and they totally supported me! In the midst of these conversations, I also chatted with my girlfriend who is a psychiatrist. She was truly heaven sent on helping me navigate this process. It’s okay to not be okay….
Seeking Professional Help
I decided to see my original therapist from my pregnancy. After seeing her for a month she officially diagnosed me with Postpartum Anxiety and Post-Traumatic Stress Disorder (PTSD) due to always being on edge, intrusive thoughts, and certain sounds causing such an emotional reaction. She recommended I see a psychiatrist as well that specialized in complex pregnancies, and postpartum anxiety due to extended NICU stays.
I saw her for a couple of months and realized I was getting anxiety just trying to make my appointments because she could only meet during core business hours- no evening or weekend appointments. It’s not easy getting around the DC area while working full time. She had provided me a therapist that oversaw a postpartum peer group.
I reached out to this therapist and she actually saw clients late evenings and weekends 🙌🏾🙌🏾🙌🏾 and on top of that she allows postpartum women to pay what they can afford for a year!! 💗💗💗🙌🏾🙌🏾 In between changing therapists, I met with a psychiatrist as well! What a blessing!
The psychiatrist recommended psychosomatic therapy (seeing a therapist- which I was already doing) plus pharmaceutical intervention. What a blessing. I was prescribed a medication to help with my postpartum anxiety and PTSD! The psychiatrist also provided a ton of research articles since I am still breastfeeding! The medicine is/was considered safe for lactating moms! 🙌🏾🙌🏾🙏🏾🙏🏾
After leaving my first psychiatric appointment I felt relief, yet guilty and ashamed that I had to turn to a psychiatrist for help with coping with my new normal. The stigma around seeking mental health help is real in the minority community, but I quickly got over that.
Antoine started to notice a positive change in my behavior and I had a little more energy. I could bare our journey so much better. The Lord must’ve known prayer alone wouldn’t be enough on this journey for me because He always aligned the right people when I/we needed them.
Mental Health Balanced, Coping With More Unexpected Hospitalizations
Since seeking professional help, I’ve been able to cope with 3 additional unexpected emergency room visits with 2 ending in hospitalizations for Nia- they didn’t fully break me this time!
The month of September was a month of milestones and celebration of Nia’s 1st year of life including a one year photo shoot! September also included an unexpected 6-day hospitalization for Nia. This mama didn’t feel like the world was crumbling around her for a change. We sent Nia’s expert cardiologist videos of what was happening- Nia was having involuntary left eye closure. It was very concerning. She advised us to drive 2 hours to duPont immediately and Nia would be admitted to the Cardiac Center because of her CHD. When we arrived the staff had already been put on notice we were en route.
The hospital stay was longer than we expected, but the team was amazing! Nia was assigned to the Cardiac Center stepdown because her expert team understood that although she wasn’t hospitalized necessarily for her heart condition she needed to be monitored by a team that is equipped to handle any surprises! The team over-communicated- from the hospitalists, neurologist, neurosurgeon ophthamologist, and cardiac anesthesiologist. It sucked to be back in the hospital but the team was exceptional. The hospitalist and resident came to see us early in the morning like clock work (between 7:30am and 8am everyday) and end of the shift so that we fully understood Nia’s plan of care and if there were any changes set to be made for the evening. We rounded with the team everyday, and I articulated the expectation of care for Nia and educated the team further on our baby and advocated for her to not be evaluated solely in textbook form. The team appreciated my advocacy and knowledge- even joked can we add you to team lol!
There were no major concerns that came back from Nia’s 24 hour EEG or MRI/MRA. The team was stomped on the cause of these involuntary eye closures and decided that ear nose and throat (ENT) doctors should weigh in. The ENT team decided to put tubes in her ears. Nia was discharged from the hospital with new tubes and one anti-seizure medication to ensure that the team wasn’t missing small seizure activity that wasn’t showing on CT, EEG, or MRI tests. Nia was discharged that same evening after tubes were placed.
The silver lining of it all Nia did not have to spend her 1st year birthday in the hospital! 🙌🏾🙌🏾🙌🏾
Another Emergency Room Visit for Nia- Deep Sigh
Fast forward two weeks later Nia fell down the stairs with one of her home health nurses. I had literally just missed the accident. I walked in our home from work at 7pm and all I heard was my baby screaming at the top of her lungs. This lasted 25 minutes straight! I literally think therapy and my meds keep me from losing my sh$$ to be quite frank!
I took her to the emergency room at INOVA Fairfax for evaluation. There were so many sick people- coughing and all. We stayed outside until it was time to be seen- couldn’t risk any additional sickness. Nia checked out fine but was completely startled and didn’t want to be put down- which was understandable. We were able to go home the same night. Thank God! The home health nurse was very apologetic, but apologies don’t help dead babies- my exact words!
Nia’s 2nd Post Hospitalization- Follow Up Appointments
The next week, Tuesday, October 9th, we traveled back to duPont for Nia’s post hospital stay follow up appointments. We saw the neurologist, neurosurgeon, ENT, ophthalmologist. Nia’s pulmonologist briefly stopped by to check on her and warned us to lay low while visiting the hospital because adenovirus and some other respiratory virus had already been going around. We followed his guidance, but apparently that wasn’t enough.
Nia’s 3rd Hospitalization- yes third!!!
By Wednesday night Nia had a low grade fever and by Thursday morning her temperature was 101. I was at a local conference for work and Antoine was at work so my mom took Nia to the pediatrician! Well the pediatrician advised that Nia needed to be taken to the emergency room because she was working harder to breathe. By the time my mom made it to the emergency room, Nia’s fever was 105. On this day- I did break down and cry- I was tired and exhausted! My baby couldn’t catch a break and we as her parents couldn’t either! We really try to take all precautions because of her heart but still wanting to live and do day to day things- it’s so hard!!! More than likely she picked up something while at duPont for follow-ups.
Nia was admitted for overnight observation.
My mom was super helpful and went home to pack our overnight bag for us so we could be with Nia. The next morning I showered at the hospital and went to work while Antoine and my mom held down the fort. It was so difficult leaving Nia behind for work- really hate feeling like I have to balance being a professional and a mom- especially with complex needs! I am an awesome professional but a little more flexibility would be definitely beneficial. Despite having to be a supermom/superwoman, I am so thankful for an amazing support system. Nia was discharged while I was at work, but then I received another call on my way home that my niece had been rushed to the hospital so I had to leave work and rush to the hospital to check on her- WHEW!
In the midst of the hospitalizations, I am truly thankful I have my sanity and awesome behavioral health support system too.
Challenge to Family and Friends of New Mothers
It’s so important to really check on your family and friends beyond the one or two months postpartum because postpartum anxiety and depression are real. It’s even more important when your friends are NICU Warrior Mamas and/or Daddies! I challenge all family and friends check on those that may suffer from any tough times in life or mental health issues- encourage them to seek the help that’s need and help them to realize it’s okay to ask for professional assistance.
The pics below are what Postpartum Anxiety and PTSD look like…
A Mended Broken Heart
Moral of the story: there is not always a certain look- broken and hurting people can clean up very well… The smile you see in these pics are genuine and pure- but my heart has been crushed along this journey! I am thankful for a mended broken heart, mind, and spirit!
I am so grateful for my hubby, mom, sisters, bffs, prayer warriors and strangers that think of us and pour out love across the globe! It is much appreciated!
I am a better version of me because I realized (and so did others) I was not myself- which is normally a person that sees life as a glass half full. My glass felt half empty at times despite the blessing that God bestowed upon us on September 27, 2017.
God’s provision for my life and purpose for me and my family continued to prosper in spite of the emotional and mental struggle at times of #Niasjourney… which could’ve broken me forever- but I choose life and positivity and all the blessings my God has for us on this path!
God has truly blessed me (us) in my/our brokenness 🙏🏾🙌🏾🙌🏾🙌🏾🙌🏾💗💗💗💗
No Weapons Formed Against Me Shall Prosper. ~Isaiah 54:17
I Can Do All Things Through Christ, Which Strengthens Me. ~Phil 4:13