Ari – part two

by Sheryl Dagostino on April 10, 2013

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Being Mama full-on in a hospital environment is pretty intense.  I was grateful that Ari was admitted to a private room (we weren’t so lucky on a subsequent visit).

One of the challenges was pumping every 3-4 hours around the clock.  It was crucial to keep up my schedule in order to get Ari the nourishment he needed, still his sole nourishment, and also keep up my supply, especially given the current situation.  I didn’t want anything in Ari’s relationship to feeding to change.  At that point in time, I was pumping more than Ari actually needed in in a 24 hour feeding period and was freezing the excess.  Ron and I knew that being at the hospital, it may not be possible to freeze and/or use all the breast milk I was pumping.  We knew about the possibility of donating milk, but not the details.  Ron went about and asked the nurses and was referred to a local milk bank.  It was not possible for me to donate at that time because of the stringent and thorough review process a donor has to go through.  The milk I was pumping at the hospital would be consumed by Ari there or brought home to freeze.

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I filed the information for the milk bank away for another time.  It remained on my mind because having an infant in the hospital really opened my eyes (and Ron’s too) to all the babies and families in need who were in similar and even worse circumstances.  Indeed we saw other parents and children during Ari’s stay on the pediatric floor at MGH.  It was heart-wrenching to see and hear some of the children.  And they were all so beautiful and brave.  I cried a lot while we were there.  Emotions were all on the surface already and empathy was a big one.  I would see a child in the little playroom with her parents.  I could see the children who couldn’t walk, the child with the bandage around and eye and his little head, hear the baby crying inconsolable in a room down the hall…  I wanted to help them all.  I poured all my energies and love where it needed to go – to Ari.

Ari was waking pretty much every 3 hours for a bottle at night at this point.  In the hospital, I would pump after I fed him.  I was pumping for 30+ minutes at a time, sometimes up to 45 minutes depending on how engorged I was.  I had to be diligent about staying on my schedule because I had experienced clogged ducts from being engorged for a bit too long – not something I wished to experience on top of everything else going on.  Usually, if we were at home, Ron would feed Ari during the night feedings while I pumped, but Ron was staying at the nearby hotel.  The nights at the hospital were just Ari and me.  Of course I had the nurses to call in for general help and I had to call them in to get Ari’s milk brought in and to give them any milk I pumped to be properly labelled and stored.  They had a special locked room specifically for breast milk storage and cleaning pumping equipment.  Ron was a saint and washed all the pumping equipment and bottles before he left me and when he came back in the morning.

During Ari’s first day, we met Ari’s wonderful pediatric neurologist Dr. Thibert (along with a constant slew of residents, pediatricians, students, and nurses!) and learned about how the EEG worked.  There was a little red button that we were informed to press when we witnessed Ari having one of his episodes.  Since the EEG was going to be hooked up for at least 24 hours, this would help alert the doctors and technicians who would review the scan to when an episode was happening and look closely at the read out at the time of the witnessed seizure.  We also learned about how to read the EEG ourselves.   I am quite a sponge, especially when it comes to knowing something for my child’s benefit!  When Dr. Thibert came into the room with about 7 residents, I listened and watched while the scan was viewed and explained.  I got it.  I could see the spikes and I knew that they were NOT normal.  This was not great knowledge to have when you see those spikes regularly on the scan over and over happening in clusters every couple of hours all day long.  It was crucial that we press the button ONLY when we saw the physical seizures happening with Ari and not press the button based on the spikes showing on the scan.

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Ari was also being videoed.  We had to turn the camera if we took him out of the bed so that he was always being monitored.  It took some interesting maneuvering to turn the camera to where I would sit with him, gingerly pick him up without disturbing all the coiled wires hooked up to his head or the wire to show his oxygen levels that was connected to one of his big toes!  I also had to pick up the “bag” that all the wires connected to, then sit down and rest Ari in my arms so that, again, I was not disturbing the wires or upsetting Ari, and THEN I had to be sure I could reach the bottle to actually feed him.  I was also aware of where in the room I sat to pump breast milk as I certainly didn’t want that “on-camera”, thank you very much!

It all took a lot of organization and planning – It was just non-stop with everything honestly.

Based on the schedule of feedings, pumping, the stress, and the uncomfortable pull out chair thing, I did not get much sleep during Ari’s hospital stay, but Ari slept wonderfully so I was grateful for that.  I know he felt safe with me right next to him and he always knew I was there.  I really wished for a queen size bed so that we could snuggle up together like we would for naps at home.  I wanted to be as close to him as possible.

The morning of Ari’s second day in the hospital, we anxiously awaited some word on what was next.  We were told that they wanted to do an MRI.  We were also told that it may not happen for a couple of days due to scheduling.   Ari would have to be put under general anesthesia for the procedure.  I was beside myself with worry.  I, myself had never undergone surgery or anything requiring general anesthesia.  What if Ari is allergic to it?  We had to sign all these papers relinquishing the hospital of all blame in case the worst happened.  It was risky and I was a mess.  Ari was so little!  What if they overdosed him?  What if he came out of it a different baby?  We really had no choice of course.  Tests needed to happen in order to get to the bottom of what was causing the seizures.  We were informed that the seizures themselves could do harm to Ari.  Developmentally, they could have already done damage.  The activity had to be halted and in order to stop it, to treat it, a cause needed to be found for correct and effective treatment.

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The talking, the discussing, the questions, endlessly over and over, the worrying, the sometimes needless bickering and the exhaustion was overwhelming.   Above all, we tried to keep Ari’s waking moments as happy and “normal” as possible.  We played with him, letting him kick (his favorite thing in the world to do) happily while we showed him the little toys we brought from home.  We made faces at him and cooed back to him.  Ari was so easy.  He definitely made it easier on all of us by being his sweet, gentle and content self.

The MRI was green-lighted for the next day.  Ari was not allowed to feed on breast milk after four hours before the test.  He could have Pedialyte for up to two hours before the MRI, but after that, nothing until the test was over.  They scheduled the test for 11am, but of course, as things always are delayed, they didn’t show up to bring Ari down until around 1pm.  He had done okay without the feeding and had fallen peacefully asleep in my arms.  I carried him down as they led us to the elevator, down into what seemed like the bowels of this giant hospital where the imaging equipment was.  We passed through the adult waiting area for imaging and were led into an anteroom area which was outside the recovery rooms to meet the anesthesiologist/doctor who would perform the MRI.  Ari slept innocently in my arms as Ron and I sat there and unfortunately had to witness an adult male being “revived” on a gurney just feet from us.  My waterworks began again – both in feeling for the poor man and fear for my baby.  Not a pleasant experience, especially when we are about to hand our sleeping infant over for a few hours.

eli.dag_AriDay20_2011_(00001 of 00004)An attendant came over and had me sign some paperwork which would allow me to go into the imaging room until Ari was put under.  The doctor explained the procedure to us, that Ari would be put under anesthesia and then the imaging would begin.  He suggested that I NOT come into the room, that it was disturbing because some of the noises Ari might make or movements while he was being put under.  I was crying, but at that moment, I knew the doctor was probably right and I decided not to go in.  The process would be a few hours and we could see Ari in recovery.  He would definitely be hungry so I would have a bottle ready.  I handed my sleeping Ari, sucking on his pacifier, over to the doctor gently.  It was one of the hardest things in the world to do.  Up to this point, I had always been able to be with Ari, at his side, through everything.  I now wouldn’t see him for hours for the first time since he was born.

Ron and I returned to Ari’s room on the pediatric floor to wait.  They had removed Ari’s bed in order to have it ready for him down in imaging to return him to the room.  Ron and I sat anxiously in that nearly empty room for hours.  We had my parents and Patrie, who were all wonderful in getting us anything we needed and also leaving us alone when they knew we need that as well.  It was a long, difficult wait.  I had to push thoughts of losing my baby out of my mind constantly, besides the worry about what they might find inside his little brain!  We knew from Dr. Thibert that it could be any number of things causing the seizures.  It could be a tumor.  It could be a genetic disorder.  It could be epilepsy.

Now, we just had to wait…

Photo Credit – All Photos: Eli Dagostino Photography

{ 6 comments… read them below or add one }

Beth Vages April 10, 2013 at 8:29 pm

Sheryl you are an amazing mom and an amazing woman. Telling your story for everyone to see and hear brings tears to my eyes.

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Sheryl Dagostino April 21, 2013 at 10:22 am

Thanks Beth – and thank you for reading. It has been very therapeutic for me to write about the experience. I am so in love with my Ari!

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Simon April 21, 2013 at 7:30 am

Having a baby ourselves only a few months older, this story really touched us. We wish Ari all of our love, you and Ron all of our support x

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Sheryl Dagostino April 21, 2013 at 10:23 am

Thank you Simon for reading and your support. It has been quite a year and a half and there is so much to be grateful for. I sure do hope our little ones can meet some day and that we can sit back with a beer, watch and laugh together! xo

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Mary Beth May 23, 2013 at 6:50 pm

Thank you for writing beautifully about Ari and those who love and care for him.
Love and blessings to all,
Mary Beth Keenan
oh yes- and thank you for the magnificent photos which add sweetness and beauty to the story

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Sheryl Dagostino May 24, 2013 at 10:30 am

Thank you Mary Beth — so sweet to see you here!

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