Saturday, November 10, 2012

Guest Post: Preemie awareness

I am really happy to have a guest poster today - she is one of my great friends, and is also a preemie mom - please welcome Lara from Parenting with Heart.


I am honored to be guest posting on Tales of Mommyhood in celebration of being the mama of a preemie!  Every November we celebrate our first born not because it’s his birthday but because he was born early, by early I mean 9 weeks.  He was born at 31 weeks 4 days gestation in December 2007.  I am the proud mama of a preemie. 

Being the mom to an early baby means your family grows tremendously in those first few hours of your new baby’s life.  This family isn’t the traditional nuclear family of relatives, grandparents, cousins, it is a village that continues to grow as you share your story and meet people who have also had early babies or kids with complex medical needs.  In those early morning hours we learned firsthand that it takes a village to raise a child. 


Lara and stinky monkey as a newborn

Our village is much different as it involved dieticians, doctors, scientists, prayer groups, online forums, preemie playgroups, regular playgroups, and HAND SANITIZER (and lots of it).  Our preemie story is a bit unique in that our little man was born with a life threatening illness and then subsequently his heart showed signs of two congenital heart defects (CHD) about 10 days after birth.  So our road and village became CHEO and services offered through CHEO, then services offered by Sick kids in Toronto and now an online community of international families with kids like our son.  It is amazing how much information and knowledge our village has given us and how much it has helped us in parenting our two healthy heart kids. 
One of the biggest “helps” we have had through the last 5 years was the Infant Stimulation Program that runs out of OCTC.  Every six months we were followed by a development specialist, in our home, who gave us tips, pointers and an ages and stages evaluation.  They also provided us with resources that helped with post-operative complications when our boy had an open-heart procedure.   Their information and support has not only reassured us that he was on target with milestones, but has increased our awareness and abilities as parents to two healthy heart kids. 

I wanted to use this blog to reflect a little bit on the hardest part of our first year with our preemie AND also that these struggles actually became our source of strength and benefits to him. 
He was a December baby so right in the middle of cold and flu season.  This meant near isolation for us when he came home from the hospital.  The immune system doesn’t fully mature until the age of 2 ½ , Preemies are at a high risk for viruses and flus, something simple like a sneeze can turn into a 48 hour+ hospital visit (thank you RSV).  Isolation meant: no playgroups, grocery stores, shopping malls, no visitors that had a cough, runny nose, or kids…all of the above were harboring terrible germs!  But this isolation also meant lots of rest, lots of cuddles and because it was an exceptionally snowy winter that was all good with this new mama! 

Once we could go to playgroups and out of the house I found it particularly hard to integrate with non-preemie babies.  I tried really hard, and the other mom’s tried just as hard.  It was important for me to be out there with our little boy so that he got to socialize and I got to make memories with him.  But I just couldn’t connect with the other mom’s; our experiences were just so very different.  I could also see how overwhelmed he would become with all the activity.  I kept it going and very quickly learned his cues for when he reached his limits and ultimately for him it was a huge benefit because he is a super social little person.   For me, it helped me learn my limits too, it helped me better understand what I needed as a mother and in terms of support for the birth story that was my first born son. 

The final thing that was a challenge in that first year was food!  Being first time parents we were so very cautious with everything, we also did everything by the book because he was preemie.  We have no solid evidence that being a preemie or being intubated for so long affected his eating or caused his reflux but we also can`t exclude it as a cause.  We had texture issues, gagging issues, vomit issues, social eating anxiety, generally it was all kinds of disastrous meal time memories!   Now, at 5 the only thing we are still somewhat challenged by is pasta…he will now (for the first time in 4 years) eat spaghetti noodles ONE at a time, thanks to his grandfather!  But for all this food stuff, he never had to increase his calorie intake to grow, once we left hospital he never had an NG tube, we have (knock on wood) never had an allergic reaction.  To be honest I have heard worse stories from mom`s with full term babes.  AND I can honestly say that because of these food issues with him lessened the stress when it came time for solids with my other two.
To conclude, this month I celebrate my preemie and all the challenges he has brought to us!  I also celebrate the fact that his early birth and subsequent health struggles have made me a better mother, more knowledgeable and generally a much more relaxed parent.  I take my kids for granted less, I enjoy the present more and most of all I enjoy each one of my three kidlets for who they are regardless of their birth story.  While I sometimes wish my village was much smaller, I am so grateful to have this large village to support us at every milestone, curve and bump in our journey!


Lara and stinky monkey this past spring

Lara is a working mom to three lovely little kidlets (almost 5, almost 3 and almost 6 months), she just reinvigorated her blog, Parenting With Heart , which focuses on staying sane, fashionable and womanly in a world with a cardiac kid and two healthy heart kids.

Read about our preemie story

14 comments:

  1. Stinky monkey :) what a fabulous knick name. Thanks for helping to bring awareness to preemies and what the whole family faces.

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  2. What a cutie! Thanks for this great story. I didn't know much about premies but I understand the feelings behind this great post. My girl has sensory processing disorder and its really hard to talked her lots of places. She finds too much sensory input overwhelming. I hear premies can be a bit like that. This is a great post. Thanks so much.

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  3. Great facts to share - thanks! I'm happy to see that he's grown into a happy & healthy little boy. :)

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  4. Beautiful story. I always love when parents of preemies share their stories. It made me smile to see pictures of your little one as he's grown into a happy and healthy little man.

    My sister was born premature and sadly God decided he had other plans for her.

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  5. Thank you Tara for sharing your special story. What a handsome looking guy.

    Jenna
    www.snymed.blogspot.ca

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  6. What a cutie. My friend's wife just gave birth this week at 32 weeks. Everyone is doing well, he is such a tiny little guy though.

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  7. Thanks for sharing - the Infant Stimulation program sounds great! Sorry to hear that your initial days were tough, but glad that you are taking away the positives from this and every experience.

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  8. Thank you for sharing this story! I was reliving our days in the NICU as I read this. Amazing how our precious little ones can have such a rough start, but look at them now! Ready to take on the world, and nothing and no one is going to stop them :)

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  9. Bringing back so many memories for me too! Your growing family is healthy and I am so happy for you! Thank you for sharing your story!

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  10. My kid were December babies too and I'd forgotten about the RSV scare. The best part, we had to go to CHEO for them to administer it. Hospital = Where all the sick people are! How fabulous that Stinky Monkey made it to the other side with shining stars.

    Thanks for sharing your story and linking up. I know how difficult it can be.

    Besos, Sarah
    Zookeeper at Journeys of The Zoo
    http://www.journeysofthezoo.com/2012/11/prematurity-awareness-30weeks-gestation.html

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  11. Boy are we similar! My third pregnancy ended in a premature birth last December... I also have a 5 year old, almost 3 year old, and an 11 month old plus one in heaven. It's nice to hear your positive spin on what anyone knows who has been there was a really sucky time!! Alexa

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  12. Thank you all for your positive comments! Stinky monkey is doing well and is considered stable at this point. Unfortunately his heart condition will always be a cause of concern and uncertainty but we have had this time with him that we never thought possible! We are so pleased to be on his journey with him. I am so lucky to get to meet so many preemie moms on forums like this and love that we can all relate to each other! Thanks for sharing your stories! Lara

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  13. Thank you for helping raise awareness about the issue of Preemies. My baby was just over a month early and we were terrified we were going to lose her. We couldn't visit her for 4 hours after she was born and we couldn't hold her for 2 days, it was heartbreaking. Now she's my little bundle of energy. She's still smaller than the other 7 month old babies. She's my little miracle.

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