We don’t grow when things are easy; we grow when we face challenges.
When we think back on this journey we can say that, thanks to all the staff at Cooperman Barnabas who honored our choices and provided excellent care, we were able to be part of a solid care team for our baby girl.
“We had been married for 12 years and, as parents who already experienced having a premature baby survive a one-month Neonatal Intensive Care Unit (NICU) stay, our goal was to remain a family of three. Interestingly, life had other plans for us, and we were pleasantly surprised when we found out we were pregnant with a new bundle of joy due to arrive November 2015. We were shocked, thrilled, excited, and nervous since we knew that I was considered high risk. From the start, the pregnancy brought us many uncertainties. Despite the uncertainties, we remained positive and hoped for the best outcome. As Jehovah’s Witnesses, I knew that accepting a blood transfusion was something that I would not accept as part of my care. Therefore, early on, I reached out to the Blood Management/Bloodless Medicine Team at Cooperman Barnabas for their guidance and assistance to make sure my blood levels remained normal. I also completed hospital paper work stating the non-blood treatment options I would be comfortable accepting if needed. I wanted to make sure that everything would be in place for a smooth delivery that took into account my wishes and religious beliefs.
By the time I reached around 23 weeks, I was admitted to the hospital for preeclampsia. After a few days, I was sent home only to be readmitted again due to more complications. At this point, my health and the baby’s health were in such bad shape that I asked them to please keep me until the baby could be delivered. They agreed, but there was no guarantee that I would survive this and there was little hope for our daughter. My complications continued over the next few days in the hospital and at exactly 24 weeks, they had to deliver our little girl, Isabella, via C-section. This delivery was more complicated and scarier than my first. It was a miracle that I had survived as well as our baby, although she was in critical condition. Interestingly, as scary and traumatic as it was, my husband and I were at peace, because we knew we had done what we could for her delivery. In my room “the cell saver machine” was ready, just in case, and the doctors knew according to my Advance Directive and hospital paper work what alternatives to blood transfusion I would be willing to accept. We had a solid team that knew our wishes and respected them by giving us the assurance that they would do their best.
It was a day in mid-July of 2015 when our little Isabella was born at only 12.3 ounces and 10¼ inches long. Although it was a moment of happiness and relief, I also knew that my husband and I would face many difficulties in the minutes, hours, days, months and years to come. Once again we entered the doors of the Cooperman Barnabas Medical Center NICU, but this time it was different as Isabella was labeled “unstable and critical” from the start. The roller coaster we experienced with our daughter was beyond what words can describe. There were many times where we almost lost her and to this day it’s hard to explain how this strong little girl pulled away from those near death experiences.
As Jehovah’s Witness parents, we wanted the best care for our daughter without consenting to the use of blood or blood products. The Coordinator of the Blood Management Institute, Tanisha Reid-Davis, was incredible in helping us understand NJ laws regarding minors and blood transfusions. She explained to us that that this was the best medical team in the state and they would try their best to honor our wishes. However, if a situation should arise and the medical team decided that blood transfusion was necessary to save Bella’s life or to prevent serious injury, the physicians and hospital would legally be required to give her a blood transfusion. Hearing those words was stressful and very difficult. Tanisha acknowledged our feelings and helped us understand the NICU doctors approach to care and how we could respectfully express our concerns and still work together as a team. Thanks to all those conversations, my husband and I worked very well with the NICU team and really partnered with them for the well-being of the patient, our precious Bella.
The NICU became our second home. They became our family. They understood the challenges we were facing as a family and the emotional effect it was having on every one of us. On days, when we struggled emotionally, the nurses did things to give us strength and make us smile. We were there every day and many times into the nights, doing whatever we could for Bella. We understood that this was her first home and as her family, we were right beside her to support her.
What we appreciated most about the NICU team was that when we were told how bad her outcome could be, we asked the team to please let us fight with her as long as she was willing to fight. They understood the deep love we had for our little girl and did their very best to give her the medical care she needed. We will always be thankful for this because they never gave up on our little girl. I still remember sitting in the Parent Lounge, so worried to hear Bella was in need of another surgery, as she just had surgery, and looking at Dr. Kamtorn and asking if she thought that our little Bella was strong enough for it. I can still see her face when she looked at me and said, we have to bite the bullet, then took my hand as we prayed to Jehovah to give us the wisdom to do what was best for our little girl. Her words touched me so deep and I will always be grateful for her compassion. We grew to truly appreciate all the NICU doctors. Their experience, wisdom and compassion made any hard news easier to hear.
After 243 days and several surgeries, we left the SBMC (now CBMC) NICU and went to Children’s Specialized Hospital, with a tracheostomy and a gastrostomy. We were sent there to learn how to care for Bella, begin her needed therapies, and eventually transition home. In early July 2016, after a total of 334 days of care, we finally made it home with Bella. It was the sweetest feeling for my husband and me to finally be at home with our two children at once.
When we think back on this journey we can say that, thanks to all the staff at Cooperman Barnabas who honored our choices and provided excellent care, we were able to be part of a solid care team for our baby girl. We were also able to build relationships that would last a life-time and truly understand one of my favorite quotes, “We don’t grow when things are easy; we grow when we face challenges.”
Despite the challenges we have faced, one thing we have always done is find normalcy throughout all of our circumstances and enjoy the moments making memories. Today, Isabella is a happy, active 7-year-old little girl full of personality. She loves to eat, play with her big brother, dance and sing. We look at her every day in awe and full of gratitude for the strength Jehovah gave us and for the wonderful care and understanding all of the CBMC staff gave us.”
-Liz and Pat, Bella’s Parents