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The day my daughter was born was not the most
important day of my life, it was the day my daughter came home. My husband,
Xavier, and I lived a very full, joyful, and active life. We surrounded ourselves by friends and family, were committed to
our careers, and worked diligently toward our goals. We dreamed of having a warm house and a family of our own. When we found
the perfect home, we started toward our second goal. This proved more difficult to accomplish. Xavier and I are in our early
30’s, stay away from drugs, alcohol, and smoking, and are physically fit. But, still it was difficult to conceive. Our struggle for a child is well known to many
loving couples. We scheduled the necessary exams and, then, we endured 4 years of fertility treatments. The fertility drugs,
the anticipation, and the disappointment each month was such a roller coaster to ride. But we knew there was a light at the
end of the tunnel. On Christmas Eve 2006, we were blessed with a true gift - we found out we were pregnant. I remember receiving
the phone call and the tears pouring down my face. Our hearts were overjoyed. We were incredibly grateful.
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Her arms are thinner than our
fingers.
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I
was the typical, nervous, pregnant woman. I wanted to make sure everything was perfect. I immediately turned to articles on
what to eat and made sure I got plenty of rest. My days and nights were spent dreaming about what I would do with my baby.
Every doctors visit was filled with excitement. We gazed at every sonogram picture we received. Finally, at 24 weeks, I started to relax. To prove this to my family, I went to my physician by
myself. It was then, waiting on the doctors table, that I felt something was wrong. My weight had skyrocketed 12 pounds in
a measly 4 weeks and my blood pressure was elevated. I thought to myself - something is just not quite right. I sat patiently
as the technician performed the sonogram. She spent a few minutes reviewing her measurements and the look on her face was
solemn and serious. She left without word and returned with the doctor. There was silence. I laid there, and felt the tears
welling up in my eyes. What was happening? Finally, the silence was broken. My daughter was not growing. Our baby was not receiving enough oxygen and nutrients due to an obstruction in her
placenta. She was developing, but at a slow pace. She ranked below the 10th percentile in weight and I was diagnosed
with Intrauterine growth restriction as well as severe pre-eclampsia. My heart was racing. I
was directed to the hospital where I was admitted. I remained on strict hospital bed rest for weeks. This was not what I imagined
for my pregnancy- where were the maternity cloths, the baby shower, the nursery shopping. It was surreal. The
baby and I were monitored constantly. My condition progressed, I was getting worse everyday. I gained 2-3
pounds a day in water and my blood pressure topped 180/130. And, that was when the doctors could not risk my life or the health
of the baby any longer. On June 18th, 2007, the time had come to meet our
baby girl.
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Babygirl Ross was born at 4:15pm, weighing 2 pounds and measuring 14 inches long. Xavier and I heard
her cry and caught a brief glimpse of her precious face before they wheeled her away to the NICU. She was so beautiful. Babygirl Ross was not allowed in our room to be held and fed, she was too sick. Due to my
recuperation, I didn’t get to set eyes on her again for 2 days. Xavier and my mother visited our baby and couldn’t
bring themselves to describe her. They said she was beautiful. On June 20th, I entered room 351 and
was not prepared for what I saw. It took my breath away. In a brightly lit room, there were 6 incubators. Each one attached
to numerous alarms and monitors. Nurses and doctors scurried about. My husband directed me to our incubator where I saw a
slight, miniature baby. She was perfect in every way, but she was one quarter the size of anything we had ever seen before.
She was attached to a ventilator, the tube went into her mouth, IV‘s adorned her body, EKG leads were placed on her
chest, and there were bandages on her legs. Her eyes looked at us and we saw pain. She was so delicate and fragile. And so
very far away. How could I do such a thing to my own daughter? How could I give birth so early and make her suffer? I looked
at her and kept my hands on the glass. This was our baby girl and this was our experience to face. We named her Daisy, the happiest name we could think of. We could only see Daisy through the incubator
glass and there was no thought of holding her. We could not stay with her around the clock due to strict visiting hours. Can
you believe it? We couldn‘t see our child whenever we wanted.
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Baby Daisy back on Oscillator after heart surgery.
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Daisy on at home, 10 weeks old. On the Nasal Canula.
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The next few months changed
Xavier and I beyond what we could imagine. We became different people as we cared for our baby through the glass. Daisy suffered
tremendously. She has lung disease and was always on respiratory assistance. She endured a brain bleed (IVH Level III) and
had to undergo PDA surgery to correct the blood flow from her heart. She tolerated many infections and had at least 5 blood
transfusions. After weeks of treatment, she still remained 2 pounds and a few ounces. We decided to have her baptized. We
called every morning before we went to see her and every night before we went to bed. I dreaded the phone calls. I was frightened
at what might have happened while I was away. My husband and I had so many emotions stirring inside of us. Each day
my body would go through anger, frustration, happiness, and sadness. My tears never
seemed to stop and I felt so very alone. Xavier and I became closer to each other but more isolated from
everyone else. It was hard to speak about our days. The whole experience was foreign to anything we encountered before. I
tried to work on her baby book but the captions asked for her “first room” and her “first feeding“.
My heart sank thinking of writing the truth about a sterile incubator and feeding tubes. I would sit and cry myself to sleep.
I started
a website so I wouldn’t have to speak to anyone. (www.fireislandsalsa.com). This was my therapy.
I would update the site daily with information on Daisy’s progress and if something was too painful to share, we decided
to keep it to ourselves. Every day I would wake up with a hole in my stomach. But I would have a new message
or email from our friends and family and that love and caring is what helped me face each day.
After 2 months, it became clear that Daisy’s
lungs were not getting better. She was diagnosed with chronic lung disease. If she was discharged home, Xavier and I would
have to keep her on her pulse oximeter, monitor her vital signs, and supply her with oxygen from portable tanks. We would
have to tape the tubing onto her baby skin and make sure she was breathing strongly. We didn’t know
how to handle this equipment, but we could learn. We would do anything to have her safe at home. We waited for the doctors
decision, patiently. While waiting, I went to the cafeteria. I thought to myself of Daisy, alone in her incubator with wires hanging
from every limb and I realized it has to be difficult to think of any innocent baby in pain. It dawned on me - we weren’t
in any worse situation than any other parent of a newborn. Xavier and I don’t have it any worse or any better than anyone
else, just different. Everything is relative. What lies before us is our challenge, our experience, and it is how we face
up to the situation that matters most. I just wanted to hold Daisy and protect her like every parent would. I prayed I could
bring my baby home. In
this life, we must find the strength and hope to handle what is placed before us. We all deserve to have light shine upon
us and surround us with warmth. And, for Daisy Grace Ross, that day was August 23rd, 2007. On that very day, Daisy
took her first breath of fresh air and felt the sun shine upon her face. That was the most important day of my life. Daisy
was on her way home.
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Dedicated
to our most precious gifts...Daisy, Luke & Bo
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