Parent Stories
I was nearly 26 weeks pregnant when the truck going 70 mph rear-ended us. The driver had been texting while driving and did not notice that we’d come to a full stop. Our car flipped over the side of the highway. I suffered 4 broken ribs, damage to my lungs and spleen, and internal bleeding. The doctors had no choice but to do an emergency C-section to save the life of my baby. Prior to this moment, my pregnancy had been normal. After the delivery, my baby was air-lifted to Houston, two hours away, for specialized care, while I remained hospitalized closer to the site of the accident. Separated from my new baby, I begged the doctors to discharge me early so that I could be with her. They told me that if I could walk one full round down the hall and back, they would allow me to be discharged. I gathered all the strength I could find, and despite my broken ribs and the unbelievable pain pulsing through me, I accomplished the walk on day 7 of my hospital stay! It was time for me to meet my daughter, Kira.
At first sight, I was shocked at how small she looked. She resembled a frail little baby bird who had fallen from its nest. She weighed only 1 lb 15 oz and was 13 inches long. Kira was in the neonatal intensive care unit (NICU) for 129 days. She had high bilirubin levels, anemia, patent ductus arteriosus, and retinopathy of prematurity. She had to be mechanically ventilated for 2 months due to her underdeveloped lungs, moved onto CPAP for a month, and then moved to nasal cannula. Most significantly though, she suffered a grade 3/4 brain hemorrhage and periventricular leukomalacia, a brain injury common to premature infants. Luckily, she never experienced hydrocephalus. It was terrifying being in the NICU and not knowing what other complications might sprout up. Toward the end of her NICU stay, it was discovered that she had auditory neuropathy and was deaf.
The one thing that kept me sane throughout this whole stress-filled ordeal was being able to provide Kira with my milk. I pumped religiously, every 3 hours, around the clock, every single day she was in the NICU. Before my milk came in, she was given donor milk through a nasogastric tube, which she initially rejected. Once we began giving her my milk, she suddenly began to thrive. Within a few days of her birth, my breast milk was fortified with Prolact+ H2MF, the only 100% human milk-based fortifier, and Kira began gaining weight.
By the end of her stay, she had morphed from a tiny baby bird into a plump little baby hippo at 9.5 lbs! As she came closer to being discharged, the nurses tried to give Kira cow-based formula, along with my breast milk, but it made her vomit. We experimented with various formulas at home in order to add calories to her milk, but she was too sensitive for anything except breast milk. To this day, at the age of 21 months, she still relies on breast milk as her main nutrition. I'm happy to report that she's only a little bit smaller than a baby who falls in the average percentile for her corrected age!
Kira came home on oxygen, and after only one month, she graduated to room air. Initially, she was very delayed in her gross motor skills. She had trouble lifting her head and using the right side of her body. However, with lots and lots of physical therapy, she’s developed her gross motor skills normally and has begun walking at 21 months. I’m unbelievably proud of her, and I’m so excited to see her run!
She’s a curious and adventurous little girl. She's nearly caught up with her peers in terms of developmental milestones, except for her speech, which is delayed due to her deafness. However, I’m happy to report that Kira will be undergoing cochlear implant surgery next month, and we're thrilled to see how her verbal skills will take off once she gains the gift of hearing. She knows over 80 word signs and is already highly communicative, and our family is eager for this next stage in Kira's development.
Kira going home from the hospital!
Kira today at 21 months!
Kira underwent surgery for a cochlear implant on her right ear in March of 2018. She was amazed to hear my voice for the first time! She went from saying two words to now being able to say up to 50 words! Kira loves to hear the sound of herself chewing (especially crunchy things) and the sound she can make with her xylophone. She's still bright, happy and goofy and delights in hamming it up and being the center of attention. She's currently obsessed with Japanese crackers, beds, and ducklings!
I’d highly suggest choosing primary nurses with whom you have a good connection. Everything in the NICU is so foreign, so it’s to your benefit to form strong bonds with the staff, who can keep you informed. We’re beyond grateful for Kira’s primary nurses, who watched her around the clock and kept her safe and loved. I felt as though she was in the best hands when we weren’t able to be there, and that was a huge relief.
Another thing I’d recommend to parents who find themselves in the NICU is to practice “kangaroo care.” It can be heartbreaking to hold such a tiny, medically frail creature, but research has shown that it helps enhance emotional bonds with the baby, as well as stabilizing the baby’s temperature, heartbeat, and breathing. And finally, don’t feel guilty engaging in some self-care, and above all, take it one day at a time!