Jelani’s Story

Can you tell us about your family and first learning you were pregnant? It was the week before Thanksgiving holiday in 2004, while station at Aviano Air Base, Italy with Johnny (Jelani’s father) I started feeling sick. Went to the doctor to get check and realized that I was pregnant and was having morning sickness. But due to previous pregnancy losses, medical issues and being over 30; I was considered a critical pregnancy. On top of this we had Permanent Change of Station (PCS) orders to Langley Air Force Base, VA for January 2005.

When did you know that something in your pregnancy was not going right, did you know right away that you would have to spend time in the NICU? On March 31, 2005 I started having pelvic pressure and spotting then at work on April 5 realized that something was not right. Even supervision noticed that I did not look right and had someone to take me to the OB/Gyn clinic where Johnny met me there and that is when everything began. The doctor did an ultrasound to see what was going on. All I remember was him saying oh my and leaving the room. When he returned, he informed dad and I that I was having premature onset of labor and was being admitted into the hospital and taken to Naval Medical Center Portsmouth. On April 8th the doctor attempted a cerclage but was unsuccessful because I had dilated 8-9 cm and there was no fluid around Jelani. However, being only at 23 weeks in the pregnancy, this is when the doctors explained Jelani survival if delivered early, this when I realized that my son might spend time in the NICU. Now the waiting begun which meant that I will be on bedrest the remaining of the pregnancy. Then on April 12 at 5:17 a.m. Jelani arrived by delivery at 23 weeks and 4 days, weighing 1 pound 3 ½ ounces at 10 ¾ inches long. The one thing that I kept asking is he OK because I never heard a baby cry and did not get to see or hold him because he was immediately intubated and given chest compression then transferred to the NICU for continued care. The first image I got to see of Jelani was a polaroid picture that the nurses took for dad to bring to me. After I was stable, which was about 11:00 p.m. that night I was taken to the NICU to see my son, Jelani.

How long did Jelani spend in the NICU what was the hardest part of your time there? Jelani spent 97 days (April 12 – July 18) in the NICU. The first scariest incident of Jelani stay in the NICU was on April 15th, we had just gotten back to the hotel with my parents when we received a call to come back to the NICU. The doctor informed us that Jelani stop breathing a couple time and they had to bag him to bring him back to life. They said to get to NICU as soon as possible because he might not survive. Langley AFB hotel was 45 minutes away from the Naval NICU. All we could do was pray on the way, this had to be the longest ride I every experience. Putting everything in my faith, when we got to the NICU I requested for a minister to come and pray with us at Jelani’s incubator, then his breathing improved. Another time was when Jelani had to have heart surgery to close the PDA, he was so small and the risk was high, I was really scared, again I turned to my faith. The journey of his medical issues was changing daily from lung issues to vision problem. However, we were able to take him home on July 18th which was 18 days earlier than his due date of August 5. He came home on oxygen and pulse oximeter weighing 5 pounds 6.8 ounces at 17 ¼ inches long.

Since the holidays are happening tell us about your first Christmas with Jelani? Jelani first Christmas was a joyous occasion for us because he was 8 months old weighing 12 pounds 4 ounces, crawling and standing with assistance. Jelani is a fighter surviving 97 days in the NICU, surgeries, numerous doctor appointments, and ER visits.

How was the transition of bringing Jelani home? Were you paranoid about germs and having other people around beside the NICU doctors and nurses? Jelani’s transition home was smooth because of the discharge plan and training that the Naval Medical Center Portsmouth NICU medical staff provided. This consisted of us staying in the hospital for 2 days with Jelani learning how to administrator medications and how to use oxygen and pulse oximeter equipment. I have to say this assisted us with providing 24 hour / 7 days a week care for Jelani at home. As with any mother with a newborn, I was paranoid about germs. However, I was extremely paranoid because his lungs were not developed so he was easy to get sick. So, basically when someone came to the house, they had to wash their hand and use hand sanitizer and no smoking was allowed around the house. Also, if you had the scent of smoke or any signs of a cold, I would not let you in the house.

When did you know that Jelani would need extra therapies? While Jelani was in the NICU the Care Team explained that due to extreme prematurity and medical issues, Jelani would need extra therapies.

What therapies have really helped him? I have to say all the therapies have helped Jelani over the years from feeding, occupational, speech, physical, and ABA therapy. Each one has played a role in allowing Jelani to be where he is today with milestones in his life.

How did you hear about Bee Mighty and what made you apply? I heard about Bee Mighty from Kids with PossAbilities organization. As a single mother, I want to ensure that Jelani continues to flourish in life from therapy service programs that allows him to be an independent person. Needing financial assistance for Jelani to be in the program at Philips Academy, I applied for the Bee Mighty grant to assist with the cost.

What does a typical day with Jelani look like now? A typical day for Jelani is routine but every morning he will clarify what he has each day such as school, ABA therapy, haircut, and who is picking him up from school. Any change in routine we usual tell him in advance so that he knows. Jelani day also includes tasks to increase his independency from waking up on his on by using an alarm clock, making his bed, getting dress, eating breakfast, and putting his lunch for school together with assistance as needed.

Any advice you would give another family going through the process? Anything that really helped you get through the experience? My advice would be to stay strong in your faith and have a strong village (family/friends/doctors/therapies) that can support you during the process. I have to say my faith, family, friends, doctors, and therapies really assisted us with Jelani. Jelani’s life journey has been like Legos, his favorite toy in which you get all these pieces and put them together to create a stunning creation but sometimes there is a piece in the wrong place or missing; one just tries to figure out the problem by taking it apart and starting over; Jelani has turned out to be a miraculous creation (Lego) regardless of his medical conditions.

See Jelani at the Hornet’s game as a featured Hugo’s Little Hero!