Friday, May 9, 2008

"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!

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