Lila’s NICU Story Part II: A Pitstop, Then Home
Here is part II of Lila’s story as written by mom, Aimee. We posted Part I of this story on Thursday, you can read that post here. Today, Aimee recalls the progression Lila made while in the hospital, and the journey from hospital to home.
As much as we hoped and prayed, our little Lila wasn’t breathing when she was born. Her lungs were too underdeveloped and she needed a lot of support. The doctors had a hard time finding a breathing machine that worked for her. Their last attempt — a high-frequency jet ventilator — worked.
I don’t remember seeing Lila for the first time. I reached my hand in and touched her (thank God for pictures) but I couldn’t hold her. Once I was able to get out of bed and visit Lila’s room in the NICU, I just stared at her and put my hands on her tiny, fragile body and never wanted to leave. “Is she going to live?” That’s all I wanted to know, but the doctor couldn’t make that promise.
A few days later, Lila had stabilized and it was time for an ultrasound of her brain. Premature babies are at high risk of developing bleeding on the brain, so the NICU does the ultrasounds as a standard practice. On this day, we learned that Lila would not make it out of the hospital unscathed as a result of her prematurity and time in utero without amniotic fluid. She had developed some cystic areas on the ventricles of her brain and was diagnosed with Periventricular Leukomalacia (PVL), a type of brain injury that involves the death of small areas of brain tissue around the ventricles. We were told that PVL affects the motor abilities in children and often leads to a Cerebral Palsy diagnosis, however we were also encouraged by the hope that early intervention and therapies could give Lila a chance for a “normal” life.
With each passing day, Lila grew stronger. Finally on day 12 I was able to hold my baby girl for the first time. She was so tiny. The wires and tubes covered much of her head and face, but I could see her perfect little button nose, her sweetheart-shaped lips and her perfect almond eyes.
The days turned to weeks and the weeks to months. We celebrated every single milestone from Lila moving to an open-air crib to graduating from the NICU to the Infant Care Center and every moment in between. We made every effort to make the best of our time in the hospital, but grew weary from all of the fear and the scared nights, having to watch our daughter fight and endure with each breath, and unsure how to handle the unspeakable grief that our “perfect” child might have a different future from what we originally envisioned.
Lila’s due date passed and everyone was eager to get her home, yet she was still on oxygen and not taking enough from a bottle to grow without a feeding tube. After some back and forth, everyone decided it was time for Lila to go home, however she would continue to need oxygen and a feeding tube.
The next day, someone from Pediatric Home Service arrived to teach us how to use all of the equipment that Lila would be sent home with. I had stayed in the hospital with Lila the night before and was working on an hour or two of sleep and overwhelmed with the reality of finally taking our daughter home. As the PHS staffer went through instructions on how to use the oxygen tanks, the oxygen concentrator, the apnea monitor, and the feeding tube pump, I began to cry and doubt my abilities to handle the things the nurses had taken care of for so long. “What if I screwed something up? What if the equipment stops working?” The PHS staffer assured me that someone would be available to take my calls 24/7 and could even come to the house to check on things. She gave me the confidence I needed to do the job I was meant to do: be Lila’s mother.
After 92 days of bedrest and 69 days in the NICU, Lila finally came home on Nov. 21, one week after her original due date.Originally published: January 2, 2012