After having a healthy full-term pregnancy with zero complications, everything changed when Amelia was born via emergency c-section. It all started when I woke up one Saturday morning (April 15, 2017) and noticed that baby wasn't moving around as much. I drank some juice to help wake her up and still felt nothing. So I called my doctor and was told to go to the hospital.
When I arrived they did a standard NST (non stress test) to monitor her vitals. They immediately found the baby's heartbeat and we breathed a huge sigh of relief. I sat there for a couple more hours as they continued to run more tests. But after an electric vibration test, the baby was not responding and so they prepped me for an emergency c-section. I don't know why but at the time I still didn't think anything was wrong. Maybe it’s because no one could expect what was about to happen...
When Amelia was born, she was taken to the side of the surgery room and swarmed by doctors and nurses. We waited to hear her cry but she never did. Through the chaos, my husband was reassuring me that everything was okay, that she was okay. But I knew something was terribly terribly wrong. I was finally able to get a glimpse of her little leg and it was so pale, limp and not moving at all. They told me she needed to be rushed to the NICU because she wasn’t breathing and asked if my husband should stay with me or go with the baby. Of course I told him to go with our baby.
Amelia suffered from feto maternal hemmorrhage, an extremely rare occurrence where her blood spontaneously went back into me during the pregnancy. There is no known cause and most incidences unfortunately result in stillbirth. She had about 90% blood loss, ghostly white, severely anemic, extreme acidosis (dangerously high blood pH levels), needed to be intubated and had three blood transfusions. And later that night, she started having seizures and was given phenobarbital to suppress them. They hooked her up to a video EEG and scheduled her for an MRI.
On day 7, we were given the results from her neurologist. They brought us into a conference room and we knew immediately that it was the bad news room. The neurologist started to speak: Your daughter suffered a stroke in utero, we don't know when. She had an hypoxic ischemic encephalopathic (HIE) event to her brain, which basically means there was a lack of oxygen to her brain, and as a result her brain was damaged. We broke down in tears. I asked the neurologist: Will she be normal? Will she be able to walk or talk? We were told that we will have to wait and see as she develops. To be very honest, I didn’t want a handicapped or disabled baby. I didn’t want the hardships that come with a special needs baby both for her and us. But the brain has the ability to rewire itself called neuroplasticity and therapy can give Amelia her best potential.
And she was showing us that she was truly a miracle baby. For one, she survived a huge trauma. I believe it was her will and determination that helped her recover so quickly. And we were surprisingly getting ready for discharge after only 10 days in the NICU. But then one of the nurses noticed she was desatting (oxygen levels dropping) while asleep.
During sleep, Amelia forgets to breathe or doesn't breathe sometimes. Yes, this is normal and happens to some babies a few times a night. But Amelia had 283 apnea episodes during her sleep study and her oxygen levels dropped down to 60%, dangerously low; she should be around the high 90s. She was diagnosed with both central sleep apnea (brain) and obstructive sleep apnea (body). She was put back on oxygen via nasal cannula and given caffeine to treat. And again we were told, we don’t know why this is happening. It could be from her brain injury. It could be that since she has lower muscle tone (again because of her brain injury) that she might have trouble breathing. They needed to conduct more tests with pulmonogy and ENT to see.
The next few weeks the doctors did more sleep studies and although she was improving with her apneic episodes she still needed respiratory support. But we were told we would be discharged soon and most likely would go home on oxygen. Not the news we were hoping for (and the months after I cried way too many times dealing with the stress of having a newborn baby on oxygen and tethered to machines at home).
After nearly a month in the NICU (and two days before Mother’s Day) we were being discharged! We were given a notebook of information for follow-up tests, appointments and proper medication procedures for her seizures and sleep apnea. We knew that this was going to be our new normal and we had a long journey ahead of us. But we were taking our miracle baby home. The unknown terrifies me and keeps me insanely worried at all times but she has already come so far. She really is a miracle.