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Challenge: NICU Parenting

37 Days in the NICU

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*This is my story in the NICU, and although it isn't specific to PREMATURITY, I am happy to support March of Dimes and share my story.

During my first pregnancy, I lived by the books. I avoided all food and drinks I wasn't supposed to have, and I took not a single medicine even though I had major back pain and headaches. I wanted to be sure that my child would be healthy coming into this world. Despite my obsession with having the perfect pregnancy, I had no control over what would come.

The doctor discovered preeclampsia in my 37th week of pregnancy, so I was induced at 37 1/2 weeks, which was almost full term, so we were not worried. After 38 hours of labor, my beautiful baby girl, Lydia, came into this world. Struggles to cry was all we heard, and Lydia was immediately whisked over to the side of the room where doctors began examining her. As a new parent, you expect (as seen on tv) holding your baby instantly and being able to admire her, but that did not happen. Prior to holding my baby girl, doctors asked to speak with my husband and myself, sending family out of the room. My heart sank.

We were told that Lydia wasn't able to breathe due to an issue where her chin did not grow properly in-utero, so although her tongue was a normal size, it would choke her if she would lay on her back, and she also had a cleft-palette. I was able to hold my first born child for maybe 2 minutes and take a few photos before she was rushed by ambulance to Children's Hospital of Pittsburgh's NICU. My husband, although worried about me in my preeclamptic state, went with our little girl.

I was alone in my room, exhausted, left to my worries and knowing nothing about my daughter's condition. My only comfort was knowing that my husband was with her and able to stay calm and level-headed (but secretly devastated on the inside knowing all of the medical aspects of the condition) being that he was a physician himself. I wasn't able to hold her. I wasn't able to breastfeed her. My 1 1/2 days in the Postpartum ICU was agonizing.

I was finally able to join my husband and baby girl in the NICU. It took 2 weeks of teams of doctors, exams, tests, blood work, etc. to have an actual plan for my little princess, born with Pierre Robin Sequence. Two weeks of sleepless nights next to my daughter, covered in cords, with a feeding tube and oxygen attached - never leaving the NICU. Never being able to hold her further from 2 ft. from her bedside. The nurses taught me how to bathe her in her bed. I dressed her in a cute outfit everyday, trying to act as if this were a normal life. I ate 3 meals a day at the hospital. I wasn't able to breastfeed, so I pumped all day and night, finally making enough to give my daughter through her feeding tube. I talked to her, read her books, and sang her songs.

After two weeks, my daughter had her first major surgery, a mandibular distraction. My sweet baby was a little Frankenstein, with screws protruding from her jaw. Screws that I turned for an entire week while my daughter was in an induced comma. My emotions during this time are indescribable - one week of prayers, of hopes, of faith that this would work. Back into surgery she went to remove the equipment in each side of her jaw....PRAYING so hard that she would be able to breathe on her own. Knowing that if not, she would immediately have a tracheotomy. I am a strong woman, but at this point in time, I couldn't control my tears. My mother walked into the waiting room, and I lost it...I cried so hard. I was so scared. She hugged me. That's all she could do. Hours went by in silence. The plastic surgeons came out...she COULD breathe! The procedure worked. She would still have to have 2 additional major surgeries in the next 18 months, but she could BREATHE!

I lived in the NICU for 37 days. I was able to sleep by my daughter's side. Fortunately, I was able to not work during this time. This was my first child, so I didn't have other obligations. I was able to make her and the hospital my life for 5 weeks. My daughter's nurses, her plastic surgeons, her ENT doctors, and her speech pathologists saved her. They gave her the chance to breathe on her own, to be able to eat normally, and speak someday. They gave her a chance at somewhat of a normal life. They accepted me as a live-in mom. They taught me how to take care of her, feed her, and be her mom. I thank God for them.

Almost 7 years later, my beautiful girl is doing amazing. She sees her team annually for check ups, and although she has a few issues due to her condition, she is okay. She is healthy, and she is happy.



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