Ari was a very easy newborn. He slept consistently and reliably for about 1.5-2 hours after every feeding. He would wake up happy, never the baby to wake up crying, have his milk, stare at whoever was close enough or just look around. We would then swaddle him up and he would promptly go back to sleep. The breastfeeding factor was NOT easy. After trying and TRYING, it became clear that it was just not going to happen. There are more details about that side of the story in They are just boobs… Yes, we were exhausted parents like everyone is, but the reliability factor of Ari’s sleeping and feeding kept the guesswork out of the schedule and this eased our tiredness somewhat. Ari was very content, trusting, easy-going and happy from the beginning. We counted ourselves so lucky because he was not a big crier or even a spitter-upper (is that a term?). He didn’t need a pacifier (at least not until months later!). He drank his milk, cooed, slept, pooed (although he was on the weekly schedule for that), and snuggled happily in anyone’s arms. To say he loved to be swaddled is an understatement. He relished the swaddle! He actually would begin to smile when lied down on his swaddle blankets, knowing what was to come.
I remember putting Ari in his swaddle and laying him down to sleep in his bassinet that was right next to my side of the bed – right up against the bed so I could just reach in and tap him or just rest my hand on him easily. He loved his bassinet and I could swaddle him up and lay him down fully awake and walk away. He would just go to sleep. He didn’t like the canopy top over him though. I saw early on how much he enjoyed being laid down in the middle of my bed and the sense of space above. He would fuss with the canopy on, but was fine with it down.
A little after New Years, when Ari was a couple of months old, we began to notice some strange eye movements and physicality in him at times. Ari’s eyes would jiggle back and forth and his little body would do a slight and slow reflex motion at the same time. At first, since I was the one that initially noticed and questioned, I would talk to Ron about it being a reflux problem – maybe? It happened a lot when Ari was having his bottle or when Ari was falling asleep. Ari’s two month check up was a week away when we called the doctor’s office to give them a heads-up of what was going on. They asked us to get the activity on video and bring the video to our appointment.
Of course this is about the time I began doing my own research online. You can imagine what I found out there (here?). It was terrifying to say the least. I saw many YouTube videos of babies having similar, if not the same, symptoms as Ari was having. I read endless scientific papers on babies and children with the same described symptoms. The diagnosis didn’t look promising. These babies were having infantile spasms and I was convinced that was exactly what was happening with Ari. Infantile spasms are seizures…
The worst time was about that time – when I knew what it could be, but didn’t have the solid answers. I would watch him like a hawk for an hour, two hours or check back on him in the middle of the night to see if he was experiencing the “episodes” as we began to call them. I began to recognize a slight intake of breath from Ari when it was happening. I would pop up in bed and look in on him next to me and watch helplessly as he had repeated “episodes” over and over again. I then realized that he would have them in his sleep! His eyes would open and do the jiggle thing – once… twice… three times… sometimes as many as 15 times. He would either just be back asleep after or wake up and be agitated and need some resettling. It was just awful to watch. Especially not having any real answers and feeling helpless as to what kind of damage these “episodes” could be causing Ari. I tried to hold him when it was happening to see if I could snap him out of it. It wasn’t possible to stop whatever was happening… it was devastating.
Ron and I stayed up after feedings in the middle of the night, worried, talking about all the “what ifs?”. We were beside ourselves with concern and could barely wait for Ari’s doctor appointment just a couple of days away.
By the time we showed up for Ari’s two month check-up, Dr. Goldfein could see the anxiousness on our faces. He wasted no time and watched the video footage we brought in. The first two clips were mild and it wasn’t until the third clip that he said “this one has gotten my attention.” He immediately referred us to a pediatric neurologist on the Cape for an evaluation of Ari. He reassured us gently not to worry – Ari would be okay. Our appointment with the neurologist was scheduled for two weeks from our appointment which was not good enough for us. We begged for Ari to be seen sooner and were able to get a shorter length appointment just a week later.
Our first off-island adventure with Ari was to go see the pediatric neurologist. The added commitment of pumping breast milk in a car definitely contributed to the “adventure” aspect and the stress level couldn’t have been higher. The doctor didn’t do anything special in his examination and the episodes that Ari was having did not occur at his office, which was our hope, so he could witness it firsthand. We answered a lot of questions and showed our video clips. We were sick with worry and could not focus on anything else but our baby Ari. The neurologist scheduled an EEG at Falmouth Hospital several days after our appointment with him.
An EEG? What’s going on?!
We made our second trip off-island with Ari for the EEG on a Monday. It was a tedious time for the technician to attach over 30 electrodes to our baby’s head. Ari was an incredible patient – better than I would have been! We had to keep Ari awake most of the morning before the EEG so he would sleep during the actual test. A challenging undertaking with a baby who actually likes to sleep regularly. By the time he was all swaddled and hooked up with electrodes, he was ready to go to sleep so timing was perfect. I had to sit in the corner and pump milk while Ari slept and the test ran. I remember the technician being concerned that the sound of my pump might disturb Ari’s sleep. I assured her that the sound of the pump was as familiar as my heartbeat by this point in Ari’s life and he would probably sleep sounder because of it! The technician was in the room with us, in the dark, and we could see the monitor screen. We had no idea what we were looking at. The technician would lean over and look at Ari very closely once in a while, but Ari was sleeping peacefully so we didn’t suspect anything was going on. I didn’t see him visibly have any episodes during the EEG.
We were told that the neurologist wouldn’t read the results of the EEG until Thursday that week. I received a call on Wednesday at around noon. Ron had to be in Boston for a work conference for a few nights and he was there when I received the call at home. I was just about to put Ari in for a nap and saw who was calling. I put Ari on my bed and answered the phone.
The neurologist was very blunt. He told me that Ari’s EEG was “disturbing” (yes, he used that exact word) and that Ari had to be admitted to Massachusetts General Hospital immediately. I could barely breathe. I tried to hold myself together as I explained we lived on an island and I knew that the earliest I could get Ari there (without Ron’s help since he was already in Boston!) was that night. I didn’t even know how I was going to get through any of it. I told the doctor to expect us to check in first thing the next morning. I hung up the phone and basically lost it. I was alone in the house with Ari who was kicking happily on my bed and I just cried. I called my friend and neighbor Helen — I needed someone there with me and she was someone I could trust and knew what had been going on already. Eli was at school. Helen came over and held me, listened and helped with Ari as I frantically began to gather what we would need for Ari to be admitted in the hospital. I had no idea how long they would have him there! The doctor said he could be there for up to a week! I just blindly began gathering things crying and saying “my baby. my baby. my baby.” over and over again.
I called my dear friend Patrie. After hearing the situation, knowing that Ron was in Boston waiting for us, she offered to drive Ari, Eli and I all to Boston in our car. She knew I was in no state to drive. Eli came home from school to a house all a flurry in preparation to admit his baby brother to the hospital in Boston. After getting packed up, making sure I had all of my pumping gear together for days of being away – this was our first ever overnight trip – all of Ari’s bottle accessories, clothing and blankets for him, some little toys, whatever I could put together for my own needs, casual clothing for Ron since he was now leaving the business conference he was attending, we headed to the boat. Eli and Patrie had arranged our boat ticket so we could get off that late afternoon.
This was Ari’s longest car trip yet. We did have to pull over off the highway once because he was not happy and needed to be held and fed. I don’t blame the little guy. It was a very stressful trip to say the least. We had arranged to meet Ron at his hotel just outside the city and stay there for a night and then all head in to the hospital in the morning. I had been in touch with my second cousin, Andy, who is a pediatrician west of Boston. We had been emailing and talking on the phone about Ari’s symptoms since we noticed them and had been seeking advice. Andy had arranged to come see us at the hotel later that night after work and talk to us about what we should expect at the hospital and explain how the system works – big hospital/big system, all things we were not really familiar with. It was the first time we were seeing him in many years and it was his first meeting with Ari. We were so grateful for his help and support at that time and I will never forget it — he had connections to the hospital and even called that evening to make sure Ari was expected in the morning in hopes of making the process a bit easier on us.
The next morning, we had to go through a whole rigamarole of waiting in admissions and triage and paperwork… about a million people saw us and asked the same questions over and over again. Andy had warned us about this part of the process, explaining that MGH is a teaching hospital and so we would be seeing and talking to many people about Ari’s symptoms. Although we arrived at MGH at 9am in the morning, Ari wasn’t assigned and settled into a room until around 2pm in the afternoon. My parents made the trip up to Boston to meet us at the hospital and spend a night or two while we all tried to learn what was going on with our Ari. Having them there was a huge support for all of us. I felt like a lost little girl again, but I was completely and utterly depended upon by me little guy. It was the most disjointed emotional place I think I’ve ever been in.
Once Ari was checked into his room, things moved more swiftly. He was hooked up to a more sophisticated EEG. They were going to do a 24 hour EEG with video to see the activity both physically happening and also his brain scan readout. Ari was an amazing trooper through all of this. He seemed to enjoy all the different faces and wasn’t fearful of anything. All the poking and prodding, the picking up and standing him on his feet – he was only 2 and a half months old! It seemed that everyone who came in the room took his vitals! He would be napping and be woken up for an examination. We weren’t even there a whole day and it felt like a week already! But Ari just smiled at the nurses and the doctors and residents. He pretty much charmed anyone who came into his room! Although I was so worried and anxious, I was so very proud and full of love for Ari as I watched the way he was taking all of this in stride – at only two and half months.
Meanwhile, Eli and my dad share a similar trait. They are both really NOT into hospitals or anything medical related. I was so grateful to have them both there knowing how they felt. Eli being there with his camera was pretty amazing. It was such an intense time and I remember just snippets of moments – Patrie bringing me goodies from Whole Foods and sharing encouraging and supportive words of wisdom all along the way. Dining with my mom in Ari’s room on Italian take-out while Ari slept and everyone else was out to dinner together. Having another meal alone with Ron in the “parent’s room” down the hall while my parents sat with Ari, and getting interrupted because Ari was crying and needed me — then me running down the hall to just hold him and reassure him that I was there, that I wasn’t ever far away!
I tried to learn from Ari’s young bravery, however hard it was, and reminded myself that he was the one going through all of the testing and he just needed his mama.
That was my place, first and foremost, now more than EVER – Mama.
There is more to share and I will. It has taken me over a year to get to the point of feeling fully comfortable sharing these events this way. I will definitely be back to continue and get us here to the present.
This present life is a year+ different…
Photo Credit – All Photos: Eli Dagostino Photography