We walked into the pediatric emergency room in a little bit of a daze. I sat down in the waiting room while my husband went to park the car. By the time he came back, they were ready for us. We were whisked into a room and suddenly surrounded by what seemed like a hundred people all asking questions. Then Oliver started twitching. More people ran into the room. They told us he was definitely having seizures. We were scared and overwhelmed. Oliver started crying because he was hungry. I needed to feed him. I needed to. They told me I couldn't breastfeed him before the MRI because they would have to give him general anesthesia and if he spit up he could aspirate. What did all this stuff mean?! I just wanted to feed my baby...let me feed my baby!
They gave him medicine to stop the seizures. A nurse finally took pity on me and let me breastfeed for a few minutes. He spit it all back up when I burped him. The nurse said it was probably better that way and took him back from me. At some point I ended up in a wheel chair. I had just had a c-section 5 days ago and I had edema so bad I could barely walk.
I honestly can't recall everything that happened. The next thing I knew, we were watching a nurse wheel him into the MRI room on a stretcher. He looked smaller than ever and so helpless. I was more scared than I ever remember being. They had explained all the risks of a newborn being under general anesthesia. What ifs raced through my brain. I said goodbye and was terrified that he would die in there.
The waiting was torture. When he came out of the MRI, he was in recovery until the anesthesia wore off. Again I was told I couldn't feed him. We were brought up to the Pediatric Intensive Care Unit (pICU). We still had no idea what was going on. At some point we had called our parents and they were now in the room with us, waiting to find out what the MRI showed. My husband and I just cried. We were convinced that we broke our baby. What had we done wrong? We went over every detail of the last five days. Finally a neurologist and a group of other doctors and nurses arrived to give us the diagnosis.
My newborn son had suffered a stroke.
The world stopped. My heart stopped. Every mouth in the room was hanging open. Someone asked the question that was in all our minds. HOW? How could a five day old baby have a stroke? None of us knew it was even possible.
The neurologist explained that he did not specialize in pediatrics and that another doctor would be there shortly to take over and give explanations. A resident neurologist answered some of our questions but basically told us that the tests they use on stroke victims are either unreliable or not able to be used on a patient so young. They couldn't tell us exactly when the stroke happened. They couldn't tell us exactly why it happened. He left the room, leaving us more confused than ever.
At some point, the EEG techs came in and hooked Oliver up to the monitor. He had wires stuck all over his head and a few on his chest and back. They wrapped his head in gauze so they would stay in place. We looked down at our son, helpless, scared and confused.
I don't know how long it was that Oliver went without eating. Every time I asked, I was told not yet. Breastfeeding was out of the question now that he was attached to machines. He still had an IV and now the EEG was monitoring his brain waves. A camera watched his every move so if he did have a seizure, the doctor would see it.
The initial dose of anti-seizure medication that he was given in the ER wore off, and someone had neglected to order his next dose. Oliver had another seizure. He had to be given another big starter dose of the medication, and I was told once more that I could not feed him.
I can't explain the feeling when I was finally allowed to pick up my son and give him formula. I'd spent hours begging and pleading someone to let me feed my baby.
We spent the next four days living at the hospital. Our parents brought us clothes and personal items from our apartment. We slept by Oliver's side in lumpy chairs, we took turns showering and napping in the family facilities down the hall. There was always a family member sitting next to Oliver's bed. We were able to hold him for small amounts of time by sitting in a chair placed very close to the bed and making sure we stayed in front of the camera that was monitoring his seizure activity.
Since I couldn't breastfeed, I started making regular visits to the next floor where they had two breast pumps available. Between the stress, not being near my baby, and my physical condition, I usually ended up only pumping an ounce or less. Every drop was given to him through a bottle, along with formula that the nurses provided for us. No matter who it was that told me I was doing a great job, being a great mom, it wasn't our fault, we did everything we could...the horrific guilt was building up in my heart. It would form a boulder sized lump that I'm still chipping away at more than two years later.
After a couple days we were moved from the pICU to the Pediatric unit. The room was a little bigger and a little more comfortable. The biggest difference for me was the relief of not having to walk through the pICU every time I had to use the bathroom or the breast pump. Every room in the pICU was full of horror and pain. Children and parents suffering all manners of awful things. The immediacy and intensity was suffocating, even though I was one of them. The Pediatric unit was quieter. The parents in the rooms next to us knew their kids were going to survive, it wasn't a question of if they would be going home, but when.
Oliver's face swelled up after being wrapped in gauze for so long. The nurses in both units were checking his vitals every few hours, poking and prodding 24 hours a day. It seemed like they had to draw blood from him several times a day, and every time was a struggle. Many of them had never drawn blood or replaced an IV in a baby so small. Several times they called in nurses from the Neonatal ICU to help. I absolutely could not stand watching them stick him with needles over and over while he screamed. At one point my mother actually kicked a nurse out of the room after she kept trying over and over unsuccessfully.
At first we didn't even think to take pictures of what was happening. But after the initial scare was over, my husband and I decided that we needed to document this for Oliver so we could explain it to him when he gets a little older. This is how he started his life, and good or bad, he needs to understand what happened to him. In the last couple days before we left the hospital, we were even able to find a few moments for smiles and laughter. When Oliver pooped all over my mother as she was changing his diaper, we wrote "poop on Grandma" on the whiteboard's to do list and checked it off. When Oliver's EEG contacts were removed and reapplied, the tech wrapped his gauze a little different, reminding us of something from a Dr. Seuss story, so we started calling it his "Who Helmet". My husband took a shower and came back with a towel on his head...a matching Who Helmet.
On Saturday we brought our baby home from the hospital for the second time in two weeks. Oliver was on anti-seizure medication, a vitamin to help his brain heal, and aspirin to thin his blood. They still couldn't tell us what caused the stroke. The discharge instructions were pages long and we already had several scheduled follow up appointments with specialists. The doctors assured us that because of his age, Oliver's brain was still developing and would be able to recover from the stroke in ways that older patients were unable to do. The stroke was in the left side of his brain, in the area that controls right side motor functions. That was why the seizures showed up as a twitch in his arm and leg on his right side. They could not tell us how he would be affected long term. He might grow up normal, or he might never be able to walk...there was no way to know. We left with just as many questions and uncertainties as we had arrived with.
Thus began a new journey full of doctor appointments, tests, expensive medicines and just trying to learn how to be parents. Eventually, many of our questions were answered, but as Oliver continues to develop, the questions and uncertainties don't disappear, only change. He struggles with things and we can never be sure if it's because of his stroke or if it's just part of normal development. He has overcome and adapted without seeming to notice the need to do so. Even now I'm not sure if I'm fully ready to accept that my son has a disability.
Because to me, he is nothing short of a superhero.
Cassandra Zingaro - photographer, mom, wife, owner of HeartStrings Photography and first time blogger