#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