October 24th I gave birth to a beautiful baby girl, Lucy Rose. The whole day was a dream come true. Everything went according to plan. The moment I had prayed for had finally come. Things were falling into place just as I had hoped.
By Friday morning, our dream became a nightmare. Lucy was taken to the NICU around 2am Friday. She was exhibiting “involuntary movements.” An assortment of tests were already in the works by the time we were told what was going on.
I had sent Lucy back to the nursery around midnight so my husband and I could get some much needed rest. One of the nurses in the nursery spotted her subtle tremors. The doctor had ruled out various infections and said it was most likely something with her brain.
How could this be? Everything went perfectly. The pregnancy was perfect, the delivery, perfect. Why was this happening? Hadn’t my husband and I been tested enough? Why should this perfect little human have to go through such dread right from the start?
The morning dragged on. We weren’t allowed to see Lucy. We sat in our room with our family members. We hugged, we cried, we prayed. That is all we could do. Flashbacks of my miscarriages surged through my mind. The all too familiar feelings of guilt that I did something wrong came surging back. I felt so helpless. Our baby girl was struggling and we could do nothing but hope and pray. Word spread fast of Lucy’s struggle and family and friends from all over were praying for her. She was just two days old and she was making a huge impact within our little world.
By early afternoon, we were allowed to see her. Seeing our baby girl hooked up to machines was the hardest thing we ever experienced. She didn’t look like she did just the day before. She was puffy from IV fluids and groggy from the anti-seizure medicine. As we sat there, we saw the subtle tremors. In retrospect, we had realized she was exhibiting the seizures the day before. Newborns are so jittery in their movements we figured it was just newborn stuff. What did we know? Thank God I sent her to the nursery. Thank God for the nurses who caught it.
Lucy had an ultrasound of her brain, an MRI, and she was hooked up to an EEG machine. The ultrasound showed no bleeding in the brain. The MRI, however, showed three infarcts in the frontal lobe. Lucy had experienced oxygen deprivation to her brain and the seizures were the aftermath. They weren’t completely sure what it was and knew she needed extensive monitoring on an EEG machine.
An adult neurologist reviewed her MRI, but the NICU at Lankenau hospital told us what Lucy needed was a pediatric neurologist. They suggested she be sent to Children’s Hospital of Philadelphia to be monitored more closely. My baby’s first car ride was in an ambulance.
She was born 6:41pm Wednesday and by 7pm Friday night she was at the NICU at CHOP. Everything was moving so fast. I felt as if I was outside of myself looking down. We had no idea how long she would be at CHOP, but we figured it would at least be a week or two. When you hear your child is in the intensive care unit for a brain injury, you prepare your heart and mind for the worst case scenario.
Lucy was in CHOP NICU from Friday night until Monday night. When she arrived Friday night, the seizures already started to subside. She was on an EEG machine until Sunday afternoon with a video camera on her so the doctors had a visual account of her movements. She didn’t have any seizures. She kept getting better as the weekend progressed. She had a glowing report from the neurologists. Her diagnosis was hypoxic ischemic encephalopathy (HIE). It is caused by oxygen deprivation to the brain. At some unknown moment, her blood pressure dropped and oxygen did not reach her brain. Thankfully, the type of injury Lucy had was so mild that the doctors believe she won’t have any future effects. Children who experience Lucy’s level of brain injury turn out fine. If she does have any deficits, it may be a learning difference that can be addressed when she is older. The section of her brain that was damaged, the frontal lobe, will not affect any major functions. Her developing brain was able to recover for whatever was lost.
Moving forward, if she exhibits any seizure activity, at least we now know what to look for and how to address it. The doctors assured us that any further seizure activity is highly unlikely. All the nurses and doctors Lucy encountered were guardian angels. God bless the NICUs at Lankenau and CHOP.
At the time everything was occurring, I had no idea how I was functioning, how I was gathering strength to get through it. But I did it. My husband and I got through it. Lucy got through it. In retrospect, we got through it because we already knew how to lean on one another. We had already experienced painful moments together. We knew the power of thinking positively in a negative situation. We knew how to believe that we could survive anything together.
I now fully believe I experienced my miscarriages for a reason. My husband and I needed to learn the type of strength required for what happened with Lucy. The two pregnancies I lost strengthened our hearts and gave us perseverance. My losses gave me the ability to believe in the power of prayer, the power of faith, the power of love. They gave me the ability to believe in the power of my relationship with my husband. I needed all of these abilities to handle Lucy’s situation.
Lucy is doing well now. She is just over 6 weeks old. She hasn’t had any seizures and she is developing as she should. Every day she looks a little different and makes new strides. While I still worry, just like any new mom would, every day we have a stronger belief that whatever the next day brings, we can get through it as a family.
Lucy is such a blessing. She is a gift from a higher power. She is our rainbow baby. She is our Lucky Lucy.