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UMass Memorial Neonatal unit turns 40

Telegram & Gazette Sept 14, 2014

Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit's 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)
Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit’s 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)

By Michael Gelbwasser CORRESPONDENT

WORCESTER — Aaron Bissell spent his infancy fighting for survival in the UMass Memorial Neonatal Intensive Care Unit. Now, 21 years later, “I’m well. I’m doing a lot of writing. And I take singing lessons. I pretty much do a lot of creative stuff,” said Mr. Bissell, of Grafton.

The neonatal intensive care unit’s 40th birthday was celebrated Saturday at the UMass Memorial Medical Center — University Campus, 55 Lake Ave. North. Numerous former patients of all ages gathered for a group photo on the front lawn.

The festivities celebrated “all the families that were able to have their children come home with them,” to remember the children “that left this world, frankly, too soon,” and to thank the families for letting the doctors and nurses “care for their children,” said Dr. Alan Picarillo, the UMass Memorial Medical Center’s chief of neonatology.

“It was a total privilege of caring for these children,” he said. “These families would leave them with us for long periods of time.”

The unit has cared for more than 20,000 infants since opening in 1974 with six beds, hospital officials said. The program now has 49 beds. Aaron Bissell and his twin brother Eric, born at 26 weeks, were treated “at the old NICU, over at Memorial Hospital,” in 1993, according to their mother, Cynthia.

“I can tell you, the first couple of years, both of the boys were very medically fragile. It was totally scary,” she said. “I’m a nurse, so I knew the risks involved in twins being born 3 1/2 months too soon.”

“I really came here today to thank some of the doctors. I remember all of them,” Mrs. Bissell added.

Dr. Picarillo said “the caring of the front-line staff” has been the one constant during the unit’s 40-year history.

“The amount of time they spend with the families, comforting them, encouraging them, empowering them. That’s what hasn’t changed,” he said.

Dr. Picarillo noted that infants brought to the unit are living longer than ever.

“In 1974, typically under 28 weeks wouldn’t survive at all. Now, we routinely save babies with 23 weeks,” he said.

Triplets Jameson, Payton and Callie Kaska of Northbridge are now 3 years old, said their mother, Lindsay. Their earliest days were “an emotional roller-coaster ride, living day to day,” Mrs. Kaska said. Now, the kids “are amazing. They’re right on target. They’re healthy,” she said.

Many families and staff reconnected on Saturday. Nurse Christina Evans was especially proud of Edward Parker Gagne, 4, of Holden.

“This little guy was one of my first babies I cared for,” said Ms. Evans, who has worked in the unit for 14 years. “To see him where he is today brings tears to my eyes.”

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Happy Birthday Anthony!

Anthony is 19 years old today. This is the earliest photo we have of him. He joined our family when he was 6 years old and no photos came with him. His social worker gave me this photo from his file when we adopted him. I love this photo. I bet he was an adorable baby too!

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Bitter/Sweat Birthday

The twins turned 18 on the 28th of July. Yesterday, we celebrated their birthday with a small family gathering. Birthdays are always a bit emotional, both happy and sad at the same time. For typical kids, families celebrate the anniversary of the birth of a child and it is a time to marvel at how much a child has grown and developed. For the twins – and many other children with special needs – the birth date was not a happy time, but a very traumatic and scary time. When the twins were born three and a half months too soon we didn’t even know if they would live or die. At that time we were only thinking in black and white terms, would they live or die. Of course, few things in life are that simple. As we’ve learned, survival was only the first of many challenges we would face.

The 18th birthday is a big milestone for all kids; the boys are now technically/legally adults. We been busy with mountains of paperwork including guardianship, SSI, DDS, ACF to name just a few of the alphabet soup services we need to deal with. For kids with special needs, moving from children’s services into the adult system is a lot of work and red tape, and we have three kids transitioning at the same time. Anthony also turned 18 on May 1st. All three will remain in public school until their 22nd birthday, then we’ll have our next big transition. But these transitions are very different from typical kids; graduating from high school, going off to college, and hopefully becoming independent, productive adults. At least we will never have to worry about “empty nest” syndrome. The biggest worry for us and most parents of kids with disabilities is “what will happen to my child when I’m gone?” syndrome.

On the bright side, the twins are doing amazingly well in spite of their challenges. They are happy, healthy kids who love life. And really, what is more important than health and happiness?

Here is a little birthday party video:

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Time Flies When You’re Having Fun!

Man, I must be having a blast!

This past Wednesday I celebrated my 52nd birthday. ‘Celebrated’ is probably not the right word. These days, birthdays tend to be more of a time for reflection, rather than party-time. Where have I been, where am I going and how the heck did I get to be 52 years old? I’ve also been thinking about time recently. It is commonly recognized that the older we get, the faster times seems to fly, whether we are having fun or not. Why is it that when I was a kid, summer vacations seem to last forever. This past summer I blinked and it was gone. Birthdays are coming at me way too fast now and there is never enough precious time in a day.

I did a bit of research and came up with an interesting answer for this phenomenon. The speed of life has to do with proportion; percentage and time. For example, When you’re five years old, a year is 1/5 of your life, but when you are 50 years old a year is only 1/50! I never did like fractions in school… In other words, when a year is 50% of your life, it seems to lasts much longer than a year that is only 1% of your life.

Anticipation may also come into play here to help slow things down for children. Kids have a lot to look forward to, they have their whole lives ahead of them. They look forward to Christmas, birthdays, graduations, going to college and on and on. When you can’t wait to get a drivers license, it seems to take forever to get to that 16th birthday. On the other hand, adults inevitably have to deal with more responsibilities, job, family, housework, etc. that takes up our time and can suck the fun out of life.

Is their anything we can do to slow down time? Maybe. Focusing more on the moments seems to slow time down a bit. The more we are unaware of time – as if asleep or living towards the weekend – the faster time seems to pass. Of course, the clock never changes, but the passage of time can be subjective.

From a Buddhist perspective, being conscious of every moment and by choosing our actions with mindfulness, we can break old habits. When we allow all our activities to run together into one big routine, it is extremely easy to get caught up in our habitual thoughts and actions, because we haven’t given any direct instructions to our mind. “Mindfulness” is about experiencing every moment with an attitude of openness and freshness. Buddha felt that it was imperative to cultivate mindfulness for all aspects of life or in other words, to “stop and smell the roses.”

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In The News

Here is a scan from this weeks Grafton News. Hard to believe the twins are 16 years old. I think they were about 18 months old in this photo.

16 years and we are still wondering what their full potentials will be. I guess that is true for all parents, although the expectations and possibilities are quite different. That said, parents of children with special needs usually learn early on that as long as their children are healthy and happy, the rest is just icing on the birthday cake.

16 years ago the twins were born on July 28, 1993; three and a half months too soon. Their due date was October 31, so more of a trick than a treat for their parents. But still amazing how far they have come. Had they been born just 10 years earlier, they would have been a miscarriage, so I suppose whatever they accomplish in their lives is just more frosting. But for myself, I would have missed out on so many valuable lessons. My life would be very different now and quite dull, I’m sure.

We took the twins to Six Flags for their birthday. Cousin Nick came along too and we had a fun time. Happy Birthday Eric and Aaron!

Six Flags New England
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