where I find myself aware of premature bed bugs


Eeeeekkkk! There is a bed bug in my new bed!

Obviously he seems to like my new mattress almost as much as I do. OMG! People, I can’t begin to tell you how great I have been sleeping since this mattress was set up under the Big Top. Is it the mattress? Is it the (finally) newly decorated boudoir that lulls me into such sweet, sweet slumber…oh who the heck cares, I am getting some restful sleep and in my world that is all that matters.

Looking at that happy smile on my beautiful bed bug just melts my heart. He is so amazing and he is mine. It also reminds me what a miracle he is. Miracles happen everyday all around us if we just take the time to look closely but I would say that my little man being a miracle pretty much is a gimmee and that reminds me that November is not only Adoption Awareness Month but also Prematurity Awareness Month and that reminds me that I need to quit procrastinating and prepare my presentation to the March of Dimes California Valley division’s board of directors’ meeting this Wednesday on the topic of Life with the Older Preemie. I know what I want to say…

sort of, kind of.

Really.

It is all right here in that dead speace between my ears and some of it is in this rambling reflection of my favorite bed bug.
In all seriousness, it goes without sayting that Daniel truly is one of the lucky ones. Not a day goes by where I don’t appreciate that. Still even the lucky former micropreemies have their struggles and their bad days. Honestly, the bad days SUCK!

He is free of that gastrostomy tube in his stomach but we now struggle with maintaining his caloric intake as well as insuring that it is nutritious. I’m, not even factoring in introducing new foods here. Silly boy believes that man does solely live by ketchup, salad, chicken nuggets, fries and the marshmallows picked from his bowl of Lucky Charms cereal. So we struggle to round out the staples in his diet without threatening too much the return of the g-tube. He manipulates and sneaks…so do we. It’s a fun dance show for your dining pleasure.

He is a very active, sometimes loud and (rarely) obnoxious little boy still he just can’t handle most external sights, sounds, smells and touches beyond his body and brain’s strict terms. This means our lives are often thought out and planned as well as the lives of Jon and Kate Plus 8. The sad thing is all of this is for the sake of one, one child rather than 8. But we have learned to accept his large personal bubble. The reward is this amazing, sweet, loving boy who warms your heart and keeps you laughing.

We still stress about his lungs and his airway. It took his lifetime to get to a p[lace where he is functioning with (mostly) healthy lungs. Still something as simple as a bad cold can set him back…waaaa-aaaaayy back. Purel, flu shots for everyone and the mommy-evil-eye directed at anyone hacking up a lung or sucking snot in a 25 foot radius is still very much our reality. Of course, just for farts and giggles, we break out the nebulizer treatments. Fun times. But the good news is the fear of frantic runs to the ER are a (somewhat) distant memory.

Over all growth and development remains and, I imagine, will always be a part of our day to day lives. He is a “normal” five year old boy but he is not without his challenges. Potty training remains a big challenge. Full bladder continence is pretty much there in spite of his obvious fear of any public toilet (remember that big insulated bubble he has) but we have yet to poopin the potty. Being veterans of four kids who successfully poop in the potty, we have tried everything imagineable to make this happen only to realize again that we continue to live on preemie time.

Then there is school where we are just learning to write our name when our peers are writing simple sentences. Oh and then there is encounters with  peers (and parents) like this.

The alarms, beeps and buzzes may not be a part of the reality of raising our son but life after the NICU (even for the lucky one) proves to continue to be a big challenge.

Regrets?

Absolutely not.

Guilt?

Oh yeah. But then again I feel guilt for the “normal” full term babies of mine. It’s my job because I am the mommy.

I know, accept and live with the fact that life after discharge from the NICU does not mean that we all live happily ever after. I wish it did. But then again I wish it for all my children. It’s hard work raising this boy….and his sisters. Don’t worry, I love a challenge and work best under pressure. So do my kids. All of them. Even my amazing, miraclulous, fabulous little man who is living happily ever after (with A LOT of work) here under the Big Top.