"You're Being Too Over-Protective!"

While we had a lot of support when Isla was in hospital and at home afterwards, I got so tired of hearing this comment, or having it implied, especially when we brought her home. While the comment often stemmed from a wish that Isla was now "normal" and a "regular baby" and a belief that medicine these days "fixes" everything, their words also indicated they had absolutely no idea how many babies don't make it beyond the first year, what having a baby in hospital was like and how the parents are scarred. In addition, that person had never known anyone else, any loved one, to be in hospital for more than a few weeks at most. They could never imagine the marathon it takes to endure 3-5 months of this circus. With infection and RSV the top killers of premature babies, it's no wonder parents are "jumpy".

Having a baby, especially a premature, pre-term (these 2 words are no longer defined medically as being identical; I forget which medical journal I recently read this in) baby, in hospital is a completely different ball game than having a parent, sibling or friend in hospital. That adult, even hopped up on painkillers, is able to be somewhat of an advocate - in most cases - for him or herself and is better able to cope.

It's almost 2 years since we brought Isla home (how time flies when you're busy taking your child to follow up appointments! haha), and quite a number of Isla's 'roommates' from NICU have had to be re-hospitalized at some point or, even now at 2 years of age, have had to run into emerg with lung/breathing issues. We are not being over-protective; we are advocating in the best interests and safety of our baby, whether you believe it or not.

Below, I've included Torran's Mom's comments from her recent blog entry (Thursday, May 8), which you should read in its entirety. But I've posted part of her comments here, for those of you who may not make it there right away, because she says it so well, and I wish I could have expressed myself with such ease during "my time" instead of becoming defensive when complete strangers and (a few) loved ones alike grabbed and kissed Isla without so much as a please or thank you.

-- Susan

To read this entry in its entirety, click on my link to Torran's diary in the upper right corner.

"... So, please don't compare the premature baby to other babies. It is hard enough for mothers and fathers to avoid this, particularly when things seem not in favour of their own children.

The parents of preemies also need your patience. We're not just neurotic individuals. We have spend weeks washing our hands before every touch, dealing with someone else looking after our children (wondering whom the child thinks of as mum), staring instead of holding, and guarding against infection with heightened sensitivity. We have seen our babies stop breathing for so long that they turn blue, needing someone to take a rescue mask/bag and re-inflate them. One baby in the NICU, now 1.5 months past due, has "death spells" requiring cardiac massage (CPR) to get her breathing again. Her twin brother is at home. We have been told to expect impairments that only show up with age, and we watch agressively for that time. So if we seem more knitpicky, cautious and possessive than other new parents, we are, with some justification.

Mums and Dads have waited weeks and/or months to have a "normal" parental relationship with their premature child. Holding your baby in the NICU is wonderful, but each time an alarm goes off your eyes jump to the screens to find out if it belongs to yours. Then you wonder if you're doing something wrong to induce the alarm. One mother was afraid to breastfeed because her daughter had a spell the first time she was put to the breast. When the babies finally come home, parents need that time to adjust, like any parent of a newborn, to the baby being at home. However preemie parents have the emotional need to hold their child without the environmental intrusion of nurses and technology. It is hard to accomplish this when every other member of the family and friends are requesting their turn too. As I saw in Tuesday's meeting, parents are well aware of the desire of their friends and family to hold the new child, but sometimes they don't know how to say "please, not now", or "please, wash your hands first", especially with more assertive folks/cultural heritage. So, on behalf of the parents who can't vocalize this, I ask that you let parents guide you with respect to holding the baby - when and for how long.

As for Bruce and I, neither of us are quiet mousey individuals who would have difficulty expressing ourselves, and our circles of family and friends are very understanding. Besides, you'll know when we don't want you to hold Torran. I am going to carry a spatula in the diaper bag *whack* My baby! No touch!"

(c) Creative Nurse with a Travel Bug
www.realwomendrivestick.blogspot.com

A Mother's Day Poem

I love to write poetry but have to concede I don't have time this weekend to do it. So, I am sharing a poem by another poet for Mother's Day. Every mother is precious; every mother is their baby's best advocate; and every mother becomes stronger in many ways, just by giving birth. This poem is pertinent to all mothers, and as a mother of a premature, pre-term baby, I feel it is especially appropriate. I hope you enjoy it as much as I did. Happy Mother's Day!!!!


HOW MUCH I LOVE YOU I CAN'T SAY

How much I love you I can't say:
It's more than words can hold.
You're all at once my rich, red clay,
My potter and my mold.

Yours the words that shaped my voice,
The spirit within mine.
Yours the will that shaped my choice,
My fortune, and my sign.

How lucky I was to have had you
At the core of me!
Wise and good, you always knew
Just what I could be.

And so I came to be someone
Whom I could be proud of.
For this I give my swollen sum
Of gratitude and love.

(c) Nicholas Gordon
www.poemsforfree.com

Chiropractic Team With A Heart

Life is the sum of all your choices.
~Albert Camus

This quotation strikes home for me. Where I am today is completely due to the choices I have made. I cannot point the finger and say it's because of this circumstance or that person. It is due to every choice I have made up until today. I own up to this. It's not good or bad; this is simply the way it is.

When every parent has a child, their lives are changed forever more. No question. When every parent of a premature baby delivers that child, or children, this *reality* is true 100 times more. Ask any parent of a preemie and they will tell you 10 gut-wrenching choices they had to make every day that child was in NICU and then when he or she or they came home, that number of choices did not diminish.

One choice we made (and not every parent of a preemie chooses this, but we did in our circumstances) was not to put Isla into daycare when she came home. She was in hospital so long due to the condition of her lungs. We didn't want to mess with that, and both of us were self-employed so that made it easier to arrange in the short term. We knew at the time that this was going to cause financial stress for us. And it has. And if we had to do it all over again, we would make the same choice again.

In the latter months, we have had to make some tough financial choices in various areas of our life. One such choice is to moderate the level of chiropractic care we receive. Thankfully, I get some coverage for Jacques and I through my union benefits but it does not cover what the 3 of us require on an annual basis especially since sixteen years ago, I was in a car accident and have ongoing upper back and neck pain that needs to be managed regularly.

So, we made the decision to drastically reduce the amount of care we would receive. I had a long, heart to heart conversation with my chiropractor, who offered to extend to us, due to our circumstances and all that we have gone through these past 3 years, a very generous arrangement which would ensure we didn't have to slow down our care.

Dr. Barb told her assistant, Leslie, about the arrangement in advance of our next visit. Leslie, in turn, had a brainstorm. She came up with the idea for an event, to hold in-house, to raise funds for our care. With Dr. Barb's approval, we are moving ahead with it. I cannot tell you how deeply we are touched by this gesture. It goes beyond Leslie's job description and also beyond Dr. Barb's duty as our chiropractor. This is a miracle I didn't expect (see my April 17 posting about Miracles below)!!!!

Here's the info from their flyer (and if you have any books you'd like to donate, the contact info is posted below):

Any Bookworm’s out there with a Big Heart?

Are you looking to increase your personal

library for a Great Cause?

Book Sale and Fundraiser!

Dr Barb will be opening her personal collection

June 2nd -6^th, 2008

Bring, friends, family and anyone who loves to read.

All Proceeds made will be given to one of our very special patients and her family:

Isla Lauzon was born prematurely with an emergency c-section and has more medical tests at 2 years old then most of us have ever had! Her family has been amazing and she is a wonderful girl. Let’s help this extraordinary family with their care here in the office.

If you have a book you would like to donate, call:

(416) 944 1600
or drop off at: 43 Alvin Avenue, Toronto

(St. Clair and Yonge area)