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Momo Fali's: Continuity of Care

Wednesday, March 10, 2010

Continuity of Care

This is the day that I often refer to as my daughter's adjusted birthday. Today was her due date. Unfortunately, she decided to arrive in December.

She was in the hospital for 35 days while she grew from just over two pounds to just over four. Believe it or not, I look back at her days in the NICU as a beautiful time. She had amazing care and the nurses encouraged our bonding. She rested, she ate, she snuggled against my bare chest and we became a family.

Best of all, we had primary care nurses, also known as having, "continuity of care". That means that we had the same two or three nurses all the time. The hospital ensured that there would be a solid relationship built between the caregivers and the patients. Those nurses knew us, they knew our daughter and they became part of our family.

When my son was born seven weeks early, he was too sick to stay in the NICU at the hospital where he was delivered. He was immediately swept away, across town, to Children's Hospital...just in case he needed emergency heart surgery.

In that NICU, they had recently done away with the use of primary care nurses. Apparently, the bonding that was going on between the patients and the nurses became too hard if the sick, little babies would pass away. I can understand that. I have watched a baby die. It is unbearably painful.

But, there is stark contrast between the memories of my daughter's infancy and my son's. I couldn't help but feel that there were complete strangers caring for him. Because there were. Every single time I walked in, there was someone new. They didn't know me, they didn't know my baby, they didn't build any kind of relationship with him whatsoever.

There was no bonding. We were not a family.

And I hated it.

During that painful time, I could have never anticipated where we would be nearly eight years later. My tiny daughter has grown into a typical eleven year old and my medically fragile son has come farther that we ever thought possible.

Because, in addition to a lot of work at home and in therapy sessions, there has been something even more meaningful to their development.

There has been continuity of care.

My children attend a very small school. There is one class per grade and every teacher knows every student. The vast majority of parents know each other and I would venture to say that just about everyone who enters that building knows my son.

I am working at the school so that I can be there for my boy if he should need me, but I am certainly not the only one looking after him. Day in and day out, there are many parents, teachers, aides and even students, who watch out for him as well. That stability and the formation of these strong relationships have helped my kids excel.

There are more bonds than I can count. We are a family.

And I love it.

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I think that this is the reason people really miss the old neighborhood schools over the big consolidated places.
We share so many values. There is something to be said for that continuity of care and that family outside of the blood that we have.
It takes a village.
I love this and I too am so happy to have found a great network of new friends who are more like family :) Thanks for sharing.
My sister, Judy was six weeks early in 1940, and born at home in the cold Virginia Mountainous Winter. She weighed 2.5lbs. The Dr. said, "Wrap that baby up and hold her, she's not going to make it." Grandma replied, "There's never been one to die in this house, and there won't be." They wrapped her in a blanket, put her in the seat of a rocking chair by the fire, and Grandpa rocked it with his foot.
She turned 70 on Valentine's Day this year. Mother talks about this often, and Grandma referred to her as the tiny one all her life.

We have a small community school and I know for a fact that it is exponentially better for my kids than a big city school.

I'm glad you've found the support you guys need.
This is a wonderful site. I (a 58 young grandma expecting our 13 in a few days) also had a premature baby born back in 1969. There was no community. I was young 18 and felt soo scared...Thank GOD somethings have changed and our little boy lived and has always been the healthiest one we have. Thanks for a new online family also.
Gone is the family doctor, the one you had from birth on...

Maybe our ancestors had it right, the one room school house. Your kids are very lucky to have teachers who care so much for them.
You are super super lucky to have a small school for your kids.

They are super super lucky to have you as their mama.
Oh. You are truly blessed. TRULY blessed. All of you. And reading this post just makes my heart sing.
Continuity of care should be a priority in any hospital unit, especially ICUs, and even more so NICUs.
I'm glad you have it now!
I didn't realise what a double miracle you were blessed with - must have been hard to have two premmie babies. I love the way you describe your school. Sounds so comfy and homey.

What a great post. I love how you tie your children's NICU situations in to your school experience.

I have always been a big proponent of small schools. Being in a huge public school system, I jys have no idea how they can really "bond" and care for our children.

I miss the small local school days.

small schools are the best
I just can't imagine anyone not falling head over heels for your kids immediately. It just doesn't compute.
Lord knows I fell for them.
I love it too Momo! xoxo
The second hospital got it so wrong, and I want to send Rachel Remen's "Kitchen Table Wisdom" (she was offered head of pediatrics at Stanford) to them. One of her points is, those in medicine (and anyone else) who try to protect themselves from being hurt for one another shield themselves from being able to feel joy--they are flip sides of the same coin.

Of course there will be grieving when they lose a patient. That grieving must be acknowledged and supported, not made to feel like an enemy, not by dehumanizing the caregivers in trying to protect them from caring.
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