On Wednesday 18th November, 2020 Endoawareness758 (St Lucia Endometriosis, PCOS, and Adenomyosis Support Group) featured Ms. Juanna ‘Smiley’ Holder and her daughter Jaiyanna ‘JJ’ Holder in observance of Prematurity Awareness Month.
Ms. Holder hails from the beautiful islands of St. Vincent and the Grenadines and takes us on a journey as she recounts her experience as a preemie mom, in this 4-part series.
Part 1: Introduction – The Birth
“My name is Juanna Holder. Most persons call me Smiley or Joanna. I am the mom of a beautiful blessed little girl. My daughter’s name is Jaiyanna Holder. Her names mean strength and strong entrance. Jaiyanna was born when I was 22 weeks pregnant. Yes, I still had 18 weeks to go in terms of my due date. In addition to coming too early she was also breeched. She weighed less than 2lbs. Her doctor, standing at the foot of the bed said “it was a very difficult delivery your daughter is in the NICU you can see her when you are ready”. He further explained that she had bleeding lungs. Her skin was not quite formed as yet and that I might see some marks or bruising when I see her. I waited for the magical feeling persons speak about when a baby is born but with all that going on it never came.
I finally saw her and I did not know how to touch her. She seemed so fragile. I did not know whether to feel happy or sad. Everything was just happening all at once. My daughter was born with a lung bleed. One day later I was told that she had a level 4 brain bleed which mean half of her brain was bleeding. The next day he said your daughter has a level 4 bleed on one side and a level 3 bleed on the other side and babies who have that condition don’t live pass two days. At that point in time JJ had lungs bleeding and ¾ of her brain bleeding. He said you need to prepare yourself to start saying goodbye. Having listened to those words I went blank and felt like my body was in the room but not my mind. I told him that I am not going to pull the plug and that it’s in God’s hands. I cried for a short while. Trying to console myself I said, Lord let thy will be done only according to your will. Soon after, I called upon some prayer warriors. The brain bleed stopped for two days then her head started swelling and I was told she will have to do brain surgery.
Christmas was a few days away and I held her for the first on Christmas Eve. My 1 lb. baby girl whose body was a perfect fit across my chest or between my bosom was about to do brain surgery in a few days and her nurses wanted me to have a hold of her as my gift. They had to be extra careful and though it was for a few minutes it was the best feeling ever. A fit in my bra listening to my heartbeat, my 1lb baby girl gave me a snuggle which was my magical moment. Skin to skin therapy did wonders. It regulated her heart beat and soothed her breathing.” – Juanna Holder
Part 2: JJ Journey in the NICU
” As the days turned to weeks to months in the NICU skin to skin therapy was my most favorite. It was our personal bonding time and one of the magical touches to recovery. J had 2 brain surgeries, 12 blood transfusions, a broken arm from birth that was discovered after she had her first surgery, and needed round the clock care and monitoring by her nurses, doctors and care takers. The doctors did not know what her outcome would be. They said we don’t know if she will walk, talk, survive, or even be a normal child after surgery. It was never an easy task but prayer made a difference. Her strength in the NICU encouraged me. My world changed from her first surgery and I said to myself, if a 15 day old baby could undergo brain surgery at such a tender age and a tiny body, I promise to be strong.
Every day was one day at a time by God’s grace. I learnt how to be very observant, be patient and most importantly provide care and love for her. I prayed and fasted. I had to learn to ignore negative vibes and remain focus. I had to learn to trust her doctors and nurses. They kept me informed and involved and I appreciated that. Having done my Bachelor Degree in Nursing and Healthcare, I was actually able to put my knowledge gained at school into practice. I think that prepared me and helped me cope with my everyday situations better. I clearly remember one time after her second surgery she took a turn for the worst. She started swelling and had to be placed back on the breathing tube for support. Her doctors had no idea what was going on.
For a full seven days they could not touch her. All her tests they ran came back negative. During that week I prayed and fasted and on the 7th day her tube was removed. God was doing His work. I have always given Him thanks and that’s very important.” – Juanna Holder
Part 3: JJ Graduation from the NICU
“J was finally was able to leave the NICU after 127 days. Her graduation was a bitter sweet moment for me. I was happy that my daughter was leaving the hospital meeting milestone after milestone, but the kindness bestowed unto us by her doctors and nurses, there will never be enough thanks. I will forever be thankful. They were strangers in a strange land who became family. J is their special miracle baby who will have a forever lasting bond with them.
Jaiyanna’s monitoring continued on a weekly basis. She was at home on daily breathing treatments for her lungs and other medications. It was a lot for me. New medical terms and words from the shock of spending time in the NICU (Neonatal Intensive Care Unit) and PICU (Pediatric Intensive Care Unit) Everyone who encountered J was marveled at her milestone achievements knowing her birth history. My major challenge was getting time off from work to deal with her medical issues.
Another challenge was the hospital admissions. Financial strain was of major concerns. Doctor visits and purchasing of medications, medical travel expense for flights, monitoring her before and after flights, food allergies, sensitive skin issues, breathing treatments and appliances, odd working hours, lack of sleep are just a few.
During the COVID pandemic I had to be extra careful with J because of her lungs. Raising my daughter as a single mom has its challenges. Nothing beats prayer and God always provides a way no matter the situation. My trust and faith in God has been seeing me through this journey. I spend time praying for preemie parents. My daughter has changed my career line. There are parents who just don’t know how to deal with this new world of premature births in the Caribbean and I want to work with parents in the future.” – Juanna Holder
Part 4: My Advice to others
“My advice to others is simple, never judge someone who is pregnant. Pregnancy is a life or death situation. Complications can arise leaving that person to become a whole new different individual. Persons who are parents to preemies need support physically, spiritually, financially and most importantly emotionally. The body changes after you give birth. Moms go through mental changes, so be there for them because giving birth to a premature baby and dealing with it is not an easy thing to do. They need rest. They need to keep their minds preoccupied. They also need to remain focus.
To friends, family, co-workers, bosses please be an understanding individual towards the parents or parent of that precious baby. To the parents I suggest you join supportive groups with other parents like yourself. Every second counts with your child so cherish it. Most importantly take it all one day at a time. Seek God and place it all into His hands. Love your child and create a bond with him or her. Babies feel what you feel. They may be small but they are strong. They are tiny but mighty indeed. Your presence around them makes a difference. Do as much skin to skin care as possible. The sound of your heartbeat is their music because your child or children will be the only ones that know what your heart sounds like from the inside to the outer world. Read to your child and sing also.
Respect the Doctors and Nurses. Those are the little things that will make a big difference. Even if you are a single parent like me just place it all in God’s hands and be strong for your baby. Do your part taking it one day at a time and watch the miracle milestones unfold.
I would like to thank everyone who has played a role in Jaiyanna’s life in one way or the other. Thanks for your love, care, prayers and support. Family, friends, church members, co-workers, all her doctors and nurses both in the USA and St. Vincent and the Grenadines. JJ my butterfly is flying high on wings of love because we all cared. My 1lb, baby blessing life mattered. Make a difference in the life of a premature baby today because their life matters. God bless you all.” – Juanna Holder
Breadfruit News Media Ltd wish Ms. Juanna ‘Smiley’ Holder and her beautiful daughter Jiayanna JJ Holder all the best in the future. Continue with the faith you have and we do love the spirit that JJ have. We love you.
Photo Credits and Story belongs to: Endoawareness758 (St Lucia Endometriosis, PCOS, and Adenomyosis Support Group)