Discharged from the hospital we began our journey home. Livi needed supplemental oxygen to breathe, something as a parent of a newborn you never imagined you would have to endure. Seeing my baby with a nasal cannula to breathe hurt my heart over and over again, until it became “unseen”. It became part of Livi.
As I am driving home from Ochsners Livi is obstructing to breathe, a sound I will never forget hearing her first many months of life. As I am driving I cannot see if she has her oxygen on, but hearing the terrible sound of her breathing I am sure it had fallen off. I began trying to talk to her to wake her. No answer, no movement. I’m singing to her, no movement. I proceeded to scream her name over and over trying to wake her and make it to another exit off the interstate to put her nasal cannula back on. I was learning, this was all new to me. My husband, driving a separate vehicle, pulled off the interstate with me and secured her nasal cannula on with tape. What seemed overwhelming at the time would one day be second nature, be “easy”.
Livi was three months old at this time, I was supposed to be home in pajamas and “sleeping when the baby slept”, right? She needed oxygen when she would sleep, this task was harder than one may think. As a three month old baby, and a slow to grow one, Livi slept all of the time. My new challenge was now traveling outside the home with oxygen. Doing some of the simplest tasks was extremely time consuming. Making it to doctor appointments and school pickups on time took a lot of planning and preparation. Of course I always had family to help, I have never HAD to do this alone; but I am also a strong natured person and did not want to give up being a mom to my other daughter. I was nursing a baby to life that could not suck a bottle and breathe, also while parenting my forever sweet and understanding toddler.
The next step in our further evaluation of Livi was seeing our ENT and a pulmonologist. The first of those was the pulmonologist. She examined Livi and recommended a sleep study, we were prepared for this as they had informed us during her hospital stay that she would need a sleep study. This would be to officially diagnose her sleep apnea but also determine if it is central sleep apnea or obstructed sleep apnea. Central sleep apnea is neurological, where part of the brain is not communicating properly. Obstructed sleep apnea is just that, something is obstructing the airway.
It was time for the sleep study appointment, once we arrived they connected Livi to many monitors, and laid her down. I had brought my portable oxygen machine but was instructed that they would monitor her and intervene when needed. I laid on the couch next to her bed. She soon fell asleep and when she did immediately I had flashbacks. Her chest was not rising and falling in a normal rhythm, she would gasp for air, she was noisy breathing. All night I laid there waiting for the staff to give her oxygen, but they continued to monitor. At 4 a.m. they dismissed us and stated the doctor would call with her results.
While we waited for her sleep study results we had continual weekly weight checks with her pediatrician. Livi was not gaining sufficient weight and was now in the 0.04 percentile. We had increased the calories per bottle, and fed her every 2 hours. Still, the scale increased but at an extremely slow rate. Livi was now diagnosed with failure to thrive, global developmental delay, and GERD (gastroesophageal reflux disease.)
Before I mentioned how Livi rolled over at three weeks old, this did not continue on and was not an indication of her strength. It happened several times in one day and then never happened again. Livi is three months old and cannot reach for toys, does not babble, nor hitting any other milestone for her age. She did not track objects consistently, there was soon concern for neurological vision impairment. We were referred to a pediatric ophthalmologist. It would be several weeks until our new patient appointment, the wait continued. The Google search was endless. The frustration was daily. The cry out to God was like never before. Will Livi ever see my face, will she watch the sunset, or see the beauty of this earth?
While we waited for her ophthalmology appointment, we were given news of her sleep study. I had prepared myself that she would have sleep apnea but to what extent. AHI is a number they use to scale the severity of sleep apnea; any number under 5 is normal, 5-15 was mild, any number greater than 30 is severe sleep apnea. Livi’s AHI was 53…
She was not breathing. She was not growing. Could she see me?
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