Bella's Journey: Our Fight Story

I begin my daughter' s story with my own personal journey as I embarked upon having children. Right from the beginning, I had a tough ordeal with both of my pregnancies, that led to two of the most precious blessings of my life.

After five years of marriage, my husband and I decided to have children.  Shortly after making this decision, we were thrilled to find out we were expecting our first child! Tragically, my first pregnancy came to an end when I miscarried.  My husband and I were completely devastated. I went through such an emotional roller coaster that I decided not try to have anymore children. I could not bear experiencing another loss like that.  However, several months later I realized just how much my husband wanted children, so I decided to try again.  This time, we were pregnant right away with our second child.  I was extra cautious because previously suffering a miscarriage robbed me of the joys of pregnancy. I lived in fear day after day and endured a host of complications.  Finally, my pregnancy came to a screeching halt when I developed preeclampsia and my kidney function became dangerously low.  After spending a month in the hospital on bed rest, at 33 weeks, I was told they had to get my little boy out or else we could both die.  My husband faced the dreadful decision to tell the medical staff who to save–his wife or his baby? A decision that no husband or father could possibly come to terms with; so he begged them to do all they could to save us both. 

On March 10, 2008 at 10:44 pm, our precious baby boy was born weighing in at 4.8 oz.  Three days later, I was discharged to go home–but our son remained in the NICU. I felt very hallow and empty inside leaving my son and making the journey home without him.  My son spent a month in the NICU.  A month that I spent travelling back and forth to the hospital each day to be with him.  Finally we brought our little one home!  Being a preemie, he suffered respiratory challenges, and was quite fragile.  After having him, I felt that my dream of having two children couldn’t happen because my imperfect body was just not capable of bearing children safely.  I came to terms with my feelings and decided to dedicate my life to caring for my son and my husband, living grateful everyday for the family I had. 

When my son turned 4, he started to beg for a sibling.  I gave him one excuse after the other as to why that would not be possible, but of course as children do, he kept begging and praying for one anyway.  As much as I wanted to give him such a gift, I knew my pregnancy risks from my previous experience and feared leaving him without a mother.  You can imagine how surprised I felt, when three years later, we learned that we were expecting another child.  As joyous as this news was, there was a strong possibility that this could be tragic for the baby and myself. Fear began to grow inside of me, although I never expressed it. Yet, I soon found myself successfully getting through my first trimester, after which we gave the news to our son. He was quite happy–his wish was finally going to be granted. 

However, shortly thereafter, we received a phone call from my doctor stating that something was wrong.  At first, we were told that that our baby may have Down’s Syndrome.  I cried when I received the news, but I told myself that I would love my baby–no matter what.  Thankfully, a week later, I received another call confirming that my baby didn’t have Down’s Syndrome. We also got the amazing news that we were having a GIRL!  While I was in shock, my husband cried tears of joy; he always wanted a little girl! 

My pregnancy continued for another 3 weeks when I received another call from the doctor warning us that additional tests indicated the possibility that our daughter may have Spinal Bifida.  I remember laying in the bed that night–confused and in pain–trying to understand what this condition was and what I could do to help her.  About a week later after the high-risk doctor met with us and did another sonogram, he said that we had to wait a couple of more weeks to be able to look at her brain to verify this suspicion. I left that appointment without a clear answer but with a positive spirit, the same one, I had in the beginning for her, that only time would determine what was really happening and I would love her with my all heart­–no matter what. 

About a week later, I went for a blood glucose test. After taking my blood pressure, the nurses were immediately alarmed.  “What could be the problem now?,” I thought to myself. I thought I felt great … However, my body wasn’t doing great at all.  My doctor came told me to go right away to the hospital, which was a block away.  That’s when I knew something wasn’t right.  Within an hour of arriving at the hospital I was in a state of confusion as I watched the nurses run my bed down the hall yelling that they had 10 minutes to stabilize me or else they would lose me.  I was on the verge of having a stroke.  It was only after they stabilized me that I looked back and realized that I was experiencing a slow death; I could understand what dying actually felt like. The next day a group of high-risk doctors performed a different type of ultrasound after which we received the worst news; I had grown an abnormal placenta, which resulted in not enough blood or nutrients being sent to my baby.  We were told that she would not live and that unless I got rid of her, I would lose my life too. But I couldn’t do it. I have deep respect for the gift of life and according to my Bible trained conscience, I could not end my baby’s life.

From that moment on, my fight for Isabella intensified.  I was told that she could only be monitored once per shift because she wasn’t considered a “viable fetus”.  What could I do? Through the pain and sickness, I would pray and play a song for her so that she could move and let me know that she was Ok. This continued for 2 ½ weeks.  Then, at 24 weeks, and after almost having a 3rd stroke, my body had no more fight, my placenta detached and I started to bleed out.  After a night of agonizing pain, on July 22, 2015 at 2:19 pm, Bella was born weighing a mere 12.3 oz., 10 ¼ inches in length, and in very critical condition.   It was a day of pain yet at the same time of joy–because I got an opportunity to meet my daughter, the baby they said would die inside of me.  I was still alive and able to touch her, to whisper to her how much mommy loved her and how mommy would fight for her … if she fought. 

After 3 days, I was discharged once again, with the grief of not experiencing a normal childbirth.  The empty feeling that came along with not taking her home was overwhelming. I left my daughter in critical condition, I was in pain from the C-section, and I was carrying a very broken heart. I was devastated – I wanted to hold my baby girl!  I knew that this was my last opportunity for bearing children, since my doctor advised me that if I got pregnant again, there was a strong possibility that I would die.

I kept calling the hospital every 2 hours asking for an update.  I felt as if I couldn’t even exhale.  That night I decided that I would be as vulnerable as possible and love Bella without reservations and treat every moment as if it was our last moment. 

 After a month in the hospital, she developed NEC–a respiratory virus that almost killed her.  I will never forget the phone call that morning when the doctor asked us to come right away since she only had a couple hours left to live! My husband and I got to the hospital only to find them bagging my daughter to keep her alive.  The look on everyone’s face was as if to say, “I’m sorry mom this is it.”  At that point, I refused to make eye contact and I prayed heavily inside while I sang to my baby and begged her to fight with me.  After 7 hours of bagging–my daughter maintained her oxygen and heart rate while being put on an oscillator and on 100% oxygen.  I stayed at the hospital for two nights, waiting, and waiting.  Finally, on Friday morning the medical team sat with us to relay more bad news.  They needed to do exploratory surgery, yet were unsure if the surgeon would touch her since she was so critical, delicate and fragile.  They also told us that Bella would not have an easy life, that the possibilities were high for her to be blind, deaf and paralyzed.  They asked us to decide whether we wanted to just make her comfortable and let her go or for them to try with more intervention.  My husband and I pleaded with them to give her a fighting chance–if she was strong enough to fight.  My duty as her mother is to do all I can for my children. I assured the doctors that if my daughter developed special needs from all of this, I remained committed to do all I can for her, including taking her to the moon and back if I had to. 

The doctors smiled and assured us that they would put the best team in place to treat Bella.  My daughter had that surgery, spent 134 days in the hospital and after 2 more surgeries we were finally able to bring her home on oxygen!  But the roller coaster ride continued because shortly thereafter, Bella was readmitted to the NICU for respiratory distress and stayed in the hospital until about 2 weeks shy of her 1st birthday. Then, she finally came home with a tracheostomy, ventilator dependent on continuous oxygen support, with a gastrostomy tube.  

Our first-year home, was a difficult one, Bella and I were in and out of the hospital, we spent a total of 5 months that year. Our last hospital stay was for three months that ended in August of 2017.  During this time, we almost lost Bella once again.  Through all of this, my husband and I took seriously the opportunity to educate ourselves to be the best at her care and in facing our fears. I have assumed the added role to be the best nurse that Bella would ever have.  The best advocate that she will ever have, and the best mother to a daughter whom I love unconditionally. 

I say this to tell all of my fellow Special Needs Moms out there that our children are a blessing.  I’m grateful and thankful each day for my baby girl.  My son says that Bella is the best thing that’s ever happened in our lives.  We don’t live the easiest of lives–with so many doctor’s appointments, therapies, hospital stays, nursing care visits, and sleepless nights … yet just looking at her … makes it all worth it. 

Through Bella’s journey, we have met some amazing moms full of love and courage, with strong, beautiful and wonderful children.  My son couldn’t have expressed it better, when he said that the super heroes portrayed in comics and TV are not the real super heroes. He said the real Super Heroes are these children full of so much strength and love.  We celebrate life everyday and never take the little things for granted.  These are the wonderful lessons that Bella has taught our family. 

Today, Bella has been decannulated for 6 months, is crawling, is verbal, has fully developed eyes and ears and although there are so many therapies and still so much unknown. But she is our precious blessing and we are proud to have been chosen to be her family. 

 

Lizandra Vincent