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My Nola Life : Teen Mother of a babygirl with hydrocephlaus

The birth of my daughter

I was finally brought onto the ward as my daughter’s daddy walked in with his best friend, they had cigars and some flowers. Why? He was four years older than me. At the time he was 20 yrs old, did not know half about having a baby either, besides creating one and being excited about having a baby. I’m convinced that young people are insane. It’s right at that stage of life; we think we know everything, but clueless.

The cigars were useless in our situation; there was no celebrating on this birthday. I was still groggy from the sedation, my mind in another world as they all left when the visiting hour’s announcement was made.

I woke up in the middle of the night, in pain and confused about my surroundings. I grabbed at my belly, trying to figure out where the pain was coming from. It hit me like a ton of bricks, as the absence of my rounded belly reminded me, that was now covered in bandages. I heard the faint cry of a newborn baby, and I let out a deep, loud moan.

There was a nurse doing rounds a few beds down, she came to my bedside and asked if I was in pain. She came back with some ice chips and IV pain medication. She needed to check my vitals, incision, and bleeding as well. I tried to sit up as she pressed on my belly to ensure my uterus and blood flow was normal. As she was maneuvering around the small space, she accidentally knocked over the one thing I had in common with the other new mothers, my flowers. My Mama put the flowers in a makeshift vase, the tan-colored plastic half-covered with white foam plastic pitcher. I didn’t care; flowers wouldn’t make my situation smell any better.

We couldn’t plan to prepare for a day like this, not even if God himself came down to make us. The birth of our daughter would forever change our lives as we knew it. We had to grow up at that very moment. No longer a know it all, irresponsible, thoughtless, careless young adults, we were parents of a premature medically fragile baby girl.

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My baby girl was 2lbs 3oz, and from the traumatic early entry into this world, she developed bleeding on the right side of her brain. She was in the NICU, on a ventilator where she would stay for the next four months. I could not see her for the first 24hrs, because I had a c-section and she certainly could not be brought down to my bedside like the rest of the newborns. If you ever watched a show about animals or had a dog that had puppies. If you attempted to take their babies from the mom, she would go ballistic, may even bite you, while knowing the love she has for you, but the love she has for her baby is something more significant. The day you separate her from her puppies by selling them, she is grief-stricken. Being separated from my baby was a pain I can not describe.

When I saw her for the first time, I was overwhelmed with guilt. It was bad. Looking back on my experience, I’m shocked that I would get pregnant soon afterward. I feel awful to this day for my immature teenage actions and have yet to forgive myself. She laid in the incubator, like some science project. She had tubes coming from everywhere, her head, naval, arms, everywhere. She looked alien-like, she came too early, she wasn’t fully developed yet. You could see her heart beating through her thin skin; she had no body fat, slick black hair on her head, but no eyebrows. Her vagina wasn’t even fully formed either. She laid there naked, with a pamper big enough for her whole body. I did this to her was all I could think while looking at her. The nurse asked me if I wanted to touch her. I wasn’t sure if I wanted to kiss her because she seemed so fragile. She opened a circular door to the incubator, told me babies fair out better from talk and touch. I reached in carefully to put my pinky finger in her hand. Her whole hand barely fit around my pinky, she squeezed it, and it was comforting, if only for that moment.

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On my third postpartum day, nurses discharged me like clockwork. I was in a lot of pain from the surgery. I had a six-inch vertical incision from my belly button to the start of my pubic hairline, kept closed by metal staples. It looked like the doctor just took a knife and cut me like a pig. In pain, barely walking and heartbroken there was nothing could or would stop me from being with my baby. I am was taken by wheelchair to the NICU to visit with my baby before I went home. It was hard thinking that I would have to live away from her. The few days of being in the hospital was a comfort, at least we were under the same roof. I told myself that there would be nothing that could keep me away from visiting her on a daily basis, not even my health.

Speaking of that my Momo had an ancient family tradition stating that a new mother could not go outside for four weeks because her womb opens as well as her pores. A new mother couldn’t leave the house, because she needed protection from the fresh air, well the germs that it carries. Like no one would bring those very germs into her home, as if outside didn’t come inside. I had a section, surgery, cut open and per the old rules, held hostage to the house for two months. I believe I was the first in my family to break that tradition. My Momo would worry about me as I went out daily to ride the bus to go to the hospital. I’m not sure how the culture came about or how much it helped with the healing process, but my healing took longer. I did catch an infection that spread to my uterus as well. Maybe, it was from something not being sterilized in surgery or just perhaps from me going out into the filthy world.
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Throughout the month, I watched my baby’s head grow bigger and bigger with agony. The illness affected the control of the fluid around her brain, resulting in the medical condition hydrocephalus. She was too small for surgery, the neurosurgeon said, she had to be at least 4lbs, before they could do surgery. The doctors removed some of the fluid off her brain via spinal tap to remove some pressure off her mind. There was only so much they could transfer if any at all. The spinal tap could not be done too often, because of the increased risk for infection and possible damage to the spinal cord. So, there she laid with the fluid accumulating around her brain, expanding her skull.
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Before the late 50-60s babies with this condition were given a cruel death sentence because the surgery was not invented yet. Babies typically died from fluid build-up until it crushes their brain, leaving them brain-dead. Thankful, I wasn’t a know it all teen in that era… The shunt, invented by a doctor who created it for his very own child with hydrocephalus. A miracle invention that allows a child the chance to have a life. I must add, although it gives the child a chance at life, there’s no certainty in knowing if it would be a quality life.
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Two months later with the help of IV lipids/fat, she successfully had the surgery. I can remember the day like yesterday because with the good news came some judgment. I was scolded for bringing a baby into the world at my age and that my actions resulted in my baby’s condition, which would be life as a “vegetable.” These words came from an old white genius neurosurgeon. The words flowed so quickly from his lips; so did my tears as I envisioned my baby girl’s life doomed to a wheelchair, ventilator, diaper changes, and tube feedings.
Another two months passed by quickly. She was ready to go home. She was discharged weighing 5lbs 5oz. The shunt is protruding from underneath her skin on the top of her bald head. Her face was thin, a deformity due to the months of her head growing at a rapid speed from the fluid. The nurses tried their best to prevent it, but she was a premature baby, whose skull was not fully formed. The best they could do was turn her head from one side to the other. She would wear bonnets, a plastic helmet-like head shaper as well as the old technique of molding her head with my hands for months.

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She came home with a shunt that my 16-year-old self-had to manually pump, press twice a week, Tuesday and Thursday. I would know it was working because the soft spot area in the top of her head would sink to where I could sit two fingers inside of it.

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I certainly did not have the teen mom life I envisioned, full of dressing my baby up in the latest fashions, baby pageants, etc. The reality of having a medically fragile daughter required me to bypass all that. Life as I knew it was over, as well as time for me.

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She had appointments once a week for the first couple of months at Charity Hospital. My boyfriend’s mother allowed him to use her car for our baby’s medical appointments only. Outside of that, my baby and I would buy it, without him. We didn’t do much outside of the house, especially not around strangers. People were rude; I’m not sure if they were staring at me for being a young or if they were looking at my baby’s misshapen head or both.. I felt most comfortable when we were at the hospital; with other families who related to our life. For the most part, my family was great in accepting and supportive with my baby and her disability, but some had issues with me being a teen mom.

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I was adapting to being the teen mom to a particular need baby as best I could with the help of my mother of course. Her daddy was involved when he wasn’t working. He spoiled both of us on his budget and new-found knowledge of credit. Our relationship wasn’t as fun as it was with our new responsibilities. I can’t recall that crazed teen I’m in love feeling after we had her. It didn’t matter if we were in love or not, we were soon engaged via shotgun proposal without the gun.

A native of New Orleans, who left her beloved New Orleans to spend twenty years of living in the land of Minnesota Not So Nice. Minnesota was full of opportunities but would learn that the soul of the state and the people who made it was just as icy cold as the temperatures. After the years and my 40th birthday flew by, I decided it was time to pack up my youngest child and come back to my roots, my birthplace the city that not only birthed me but gave me life. I would not be who I am without my New Orleans beginnings. I am all things that would challenge the belief of growing up in New Orleans. I was a 16yr old teen mother of a premature baby born with a severe medical disability. And only With the help of my mother, was it possible for me to BE! I was able to endure and survive the obstacles laid before my child and me. In a city that was built by my family, but did not allow for us to reap the benefits I overcame. Charity Hospital was my second home — a building filled with miracle workers who made it possible for my daughter to have life. I have lived a life of rainy days with peeks of sunshine, that are my children, including those not of my womb. I'm the proud mother of three and a grandmother of three. My dream was to live the life of the nursery rhyme of ”The Old Lady Who lived in a shoe,” and for the most part, I did. I cared for several children over the years as a special needs foster parent. I would learn that my love was not enough for some children, but I loved them through their pain. I'm not sure if I ever had a case of true love or came close to what love looks like on television, but I had my share of men and the mirage of love. I survived two abusive marriages. Though I longed to return to New Orleans on a daily bases, I must admit my move was one of the best decisions made for me. I am a college graduate; I was a successful entrepreneur. I coowned a soul food restaurant and catering company in Minnesota for 12 years. I developed the talent of creating custom cakes after the murder of my beloved cousin Melvin Paul. He survived Katrina only to go to Minneapolis six months later to be murdered over a parking spot dispute. But with the challenge of creating a simple wedding cake, I was able to find healing. I created the House of Cakes in honor of him. Minnesota life had me pretty materialistic. I worked to the point I do not remember much, but work and handing my children love money. I thought by having the big house on the hill, a husband, having a family, the ultimate provider and being involved in all things that matter, plus having the funds to match would cure me of what I was told was a generational curse of lack of everything from money, love to even self-love. But for the most part, that life poisoned my heart and soul. I was blinded by visions fed to me by the media. I was told I wasn't anything unless I was better than the Jones's. I lived being ok with a broken, bleeding heart. Life like this did not exist in my family while living in New Orleans from what I viewed with my eyes and soul. We may not have had all the things I acquired over the years, but we were happy, we were together. Family outside of New Orleans wasn't family anymore. We lived separate lives and had awkward moments when we bumped into each other in public. I hated living in Minnesota even though life their helped me in so many ways. I felt deep down the only way to repair it was to get back to my roots, my soul, my home, myself, my New Orleans. I'm here, and I love it. Even being in the so-called Blighted Area of New Orleans and not having all the financial and material security, I'm happy. I am determined that She, yes, New Orleans is a woman is just like me; together, we will overcome and will rise from all that tried to kill our spirit. Nothing like starting from the bottom and making your way back up!. I just know in my heart that New Orleans will provide for me. There's a bank account with funds in it owed to me by way of back pay for my ancestors. And I will receive my inheritance, and I will continue the traditions and customs of the old to keep the heartbeat of New Orleans beating. I'm down in the boot, living the life that feels right to me awaiting my destiny...

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