Week of Thankfulness… Thankful for My Sanity and the Ability to Nurture My Mental Health! 💚💚💚💚💚

#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.

The Miracle(s)

 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 bleeding, 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.

The Shift

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…

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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

Blessings,

ELS

Week of Thankfulness- Thankful to Celebrate Thanksgiving Full Circle With Nia at Home! 🙌🏾🍁🍁🍁❤️❤️❤️

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!

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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! 😘😍😍😍❤️❤️❤️

Blessings,

Erica, Antoine, and Nia

Week of Thankfulness…Thankful for the Ability to Eat By Mouth

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!

Blessings!

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

Faces of Nia enjoying her Chicken Pot Pie!!!

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 at 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…..