The sky and the ocean blended in as one vast, grey blanket which threatened to engulf me. I was treading water, confused and alone, with the exception of the tiny life I held in my left arm, as my right arm struggled to keep us afloat. My new born baby and I were clearly alive in the middle of the ocean, treading water to survive. My heart racing and my pajamas drenched with sweat and breast milk, I startled awake from the nightmare. I quickly cradled my newborn daughter closer to my side as I held my breath and watched for her little chest to rise and fall.
I told myself that it was just a dream. But it was a nightmare that repeated itself over and over in those first weeks of Johanna’s life. I tried to dismiss this eerie foreboding, but coupled with the strong instincts growing within me, I felt for sure there was something wrong with my seemingly perfect newborn daughter.
Johanna was my fourth baby and like her three older siblings before her, I held her close to me, wearing my baby in a sling throughout the day and having her sleep in my arms at night. Breastfeeding was easy and on the go, as I worked hard to keep up with homeschooling my three older kids, writing, speaking and running a very busy household.
I believe it was that skin to skin contact and my mothering experience that increased my sensitivity to my baby’s body tone and changes. Johanna didn’t feel right to me; sometimes she was way too floppy and other times she seemed to stiffen, almost in pain. She also did not make strong and early eye contact as my other kids did in those first weeks of life.
At Johanna’s two month check- up, I voiced my concerns to the Pediatrician. It was noted that there was a slight head tilt, which could be tightened muscles or eye problems. Nonetheless, we were sent for a neurology consult. The day of the consult Johanna was brighter than usual and her exam was normal, except for the tilt and I was given exercises to stretch the neck muscles. The doctor asked me what I thought was going on and I told him that I knew there was something seriously wrong with my baby.
He told me, as did the Pediatrician, that they trusted mother’s instincts and that we would all watch this little one carefully, but as yet nothing seemed out of the ordinary, until Johanna was 11 weeks old.
I loved running my hands over Johanna’s soft little head as she was tightly woven around my body in the baby sling. Early one morning, I ran my hand over her soft, bald head only to feel a slight rise in the fontanel or the soft spot. Immediately, I was alarmed and once again, with my eyes closed, I ran my hand over head. There was a distinct, soft lump emerging from her soft spot. I called the doctor and they told me to bring her in to the office.
As I was packing up to go, my son, who was 9 at that time, asked if he could speak to me. It was a very special moment when my son told me that he had been reading our baby development chart posted on the bulletin board and that he was concerned that his baby sister did not seem to meeting her milestones on time. Besides that, he was an experienced big brother and recalled that all his facial tricks and cooing didn’t seem to engage this baby sister as it done for his other two sisters when they were babies. He told me that he thought Johanna needed to see a doctor soon. I thanked my son, hugging him and assuring him that I was in fact taking her in to the doctor again today to express my concerns and I would convey his as well.
My heart was in my throat as I drove, knowing that somehow my instincts were going to be proven right today. When the pediatrician examined Johanna, she confirmed that her fontanel was raised, presumably with fluid and that this warranted an immediate evaluation at Stony Brook hospital. I called my husband to meet me in the emergency room. By the time she was evaluated by a neurologist, Johanna’s eyes were pressed downward and her head had swelled to a larger size. The neurologist confirmed that clinically, it appeared that there was an increase of fluid pressure building up in Johanna’s brain, but they would need a CAT scan, the first of many, to confirm these findings. I asked the neurologist if a CAT scan could detect a brain tumor, and my husband almost fell over, as she told me it could if there was one to detect.
So, as Johanna was rolled into the CAT scan, my husband and I waited in silence in the darkened hallway. The Dr. broke the silence when he emerged with our baby in his arms. He explained that Johanna had hydrocephalus, or fluid pressing on her brain, frequently called “water on the brain”. The cause of the fluid was a very large mass which was compressing her brain stem. My husband looked like he could die of shock, but I felt relief flood through my whole body as the doctor explained she would need emergency surgery to drain the fluid and then a plan to remove the mass as soon as possible.
The first time I viewed the CAT scan and saw the vast pool of water engulfing my baby’s brain, I remembered my dreams. Surely this grey water covering her brain resembled the vast dark ocean where I had held my baby’s head up from drowning. Now it all made sense and as frightened as everyone was around me, I was deeply relieved. I knew now that I was now going to have help treading water and keeping my baby from drowning in this ocean. Everyone saw and felt what I knew was true from the beginning and the Lord had already prepared me for whatever lay ahead.
Emergency brain surgery was done that first night. An external drain was placed in Johanna’s brain. As the fluid drained, Johanna seemed to brighten, make eye contact and coo, all indicators that the pressure on her brain was being relieved. We quickly became acquainted with the Pediatric Intensive Care Unit (PICU) at Stony Brook, a floor we would soon call “home”, as the flurry of doctors, nurses and visitors came in and out. The initial assessments of the mass compressing Johanna’s brain stem were not good. There was serious concern that when it was resected, the change in the compression would immediately kill her. We brought our three other children, ages 3, 6 and 9 to visit their baby sister and to kiss her goodbye. We took pictures, not knowing if they would be our last.The doctors also strongly suspected it was a deadly cancer. But all were waiting on the opinion of the Pediatric Neurosurgeon.
We met Dr. Mike Egnor the night before Johanna was scheduled for surgery to resect the mass. He examined Johanna with the care and the concern of a professional who was first and foremost a loving husband and father. Then he took us in another room to view the scans and he began to explain why he believed that he could successfully remove this mass and begin Johanna’s healing process. After that consult, we said goodnight and agreed to meet in the early morning, back at PICU. I kissed my husband goodbye as we said a prayer over Johanna again.
When we began this journey there were no “sleeper chairs” at Stony Brook, only hard metal chairs to spend the night. I didn’t care; I wasn’t planning on sleeping. In fact, as I pressed my head against the crib to watch Johanna sleep, I heard a clear voice speak to me and I knew it to be God. He said something that I will remember for the rest of my days. God said, “I can take her now and her pain will end or she can live now, but it will be a hard road ahead for all of you. Which do you choose?”
I did not hesitate, for the Holy Spirit welling up within me gave me the answer:
“I choose the path of miracles!” I cried out loud, breaking the silence of that dark night.