Wednesday, November 14, 2012

Preemie Parenting is Different

I apologize in advance for the long post, but there are a lot of musings bouncing around in my brain that I want to share with the interwebs. Most of my readers outside of family looking for baby pics and updates are probably folks in the surrogacy community or looking to join. I hope that my blog is in some way helpful to you. Now that I've been kicked out of the Infertiles Club (though I did keep my gold 8-year membership card) this blog is transitioning into one of the oh so numerous Parenting Blogs. There are many out there that are far more informative and waaaaay funnier. Like, laugh out loud and try not to wet your pants funny. See . But this one is mine so my point is that those other blogs can suck it.

No really. My point is that I am going to blog not just about my babies and post pics of them, but also about my thoughts on parenting now. Perhaps some folks out there will find it interesting. I'll admit it will probably amount more to a cathartic exercise for me, but either way I enjoy putting it out there.

So. That being said...

I am tired of washing my hands all the time. As soon as I admit that to myself the newly acquired little voice in my head that shouts out "BAD MOMMY! BAD MOMMY!" goes into overdrive. I am not a germaphobic sort of gal, though my husband is slightly. I have finally been successful now in keeping my house clean and it does not cause me the same anxiety as it did in the past. But there is a difference between normal clean and sterile. It is a difference most people don't think about. But as a preemie parent it is something that you think about constantly.

My husband told me this morning he will find himself washing his hands realizing it is probably excessive, but not really able to stop himself. I find myself doing the same thing. It is a constant question of do you deal with the anxiety of thinking that in the last 30 minutes your pinkie may have accidentally brushed against your shoe when your legs were crossed and now you are about to pass on a resistant strain of e. coli that will put your baby back in the NICU, or do you just suck it up and go wash your hands AGAIN. The latter is a lot less stressful, but it does result in going through enough paper towels to destroy a forest, kill the ozone layer, and keep Costco in business. Don't let me get started on the whole "...but did I wash them long enough?" thoughts that now invade my brain. Add to all this the average person touches their face 15.7 times per hour. I am now aware of when I touch my nose or mouth and 15.7 times per hour I ask myself "Should I wash my hands or use hand sanitizer?" Welcome to my slippery slope.

Before this I was a person that followed the 5 second rule religiously. I invented that rule. There may have even been a time or two in my life where I neglected to wash my hands before leaving the restroom. *COLLECTIVE GASP* Now I am a person who by the end of the year may not have any fingerprints left and OCD is not to blame. I am now a person that sees every surface in the house as a petri dish breeding ground of death and Lysol antibacterial wipes are my salvation.

As a parent I would have to say I am pretty relaxed. I do worry about some things like a new parent does, but I think I am on the low end of the scale. I'm determined to finally get my chance to enjoy this parenting thing and am not going to be a controlling worrywart about every little thing. I've seen those kind of parents and am determined not to be a helicoptor pilot. However I'm sure people won't see me that way because of the germ factor. The key is it that it's not paranoia if your fear is rational. And with immuno-compromised twins it is rational.

I'm not one of those folks who gave birth to a 1 pound 24 or 25 weeker that try to set up their house like a NICU and don't allow the grandparents to hold them the first year. There are those folks out there, though I wonder if they actually gown and glove like I have to right now at the NICU. Frankly I wouldn't be surprised and I don't judge them for it knowing what I know now. I also am no longer judgy about people that put their kids on leashes by the way.

But I am someone who is now constantly conscious of surfaces and behaviors that could spread germs that were never even on my radar before. I am more grateful now than ever that my pediatrician spent a year specializing in infectious diseases, because I trust her explicitly to help me navigate this new world of preemie parenting and know whether I am making a rational compromise or going way overboard.

To some degree when you become a parent you become a self professed expert on all things parenting. You have joined the dark side and are now qualified to spew advice. Whether it is wanted or not... I'm sure by my behaviors, especially concerning my daughter, I'll be seen as THAT MOM that is germaphobic/OCD/paranoid. They will laugh to themselves about first time parents as they pick up a pacifier off the floor, blow on it, and then jam it into their baby's mouth.

Parents, even first time parents, have a lot of luxuries they take for granted. They may worry about their children, but their worry does not go as in depth as a preemie parent who has risk factors they have never had to consider. There are so many things they have the luxury of not thinking about. When you child is immuno-compromised and has BPD and feeding issues and almost died things that would be innocuous with a full term baby take on a whole new meaning. If she coughs or grunts during a bottle feeding it is not a cough or a grunt. It is a potential aspiration that could cause a viral infection and now you have to watch her even closer than you did before for those oh so subtle signs that occur before they turn on a dime and OMG you are back in the NICU. If they breathe fast for a little while it could be tachypnea signaling a reflux aspiration or another infection. With a full term baby it would likely be dismissed as being excited or hungry.

My son was up crying way more than usual last night with gas and perhaps our introduction to the wonderful world of colic. He slept like a rock all day and only ate 3/4 of his usual bottle for 4 feedings because "I'm full enough now thank you and wanna sleep so I'm spitting this mouthful at you to drive that point home." Being really tired makes a lot of sense. But listlessness and a few hours of feeding disinterest was the only identifiable symptom before I had to give CPR to my daughter. In an adult to identify the priority symptom of decreased level of consciousness you simply nudge and tell them to communicate with you what day it is or other info that tells you they have normal mental status. An infant sleeps so much and responds in such a subtle way that it's almost as if a decreased level of consciousness is a normal state and it makes it harder to detect a problem.

So even though I know Vivek is probably just tired from making my poor husband pull an all nighter, I'm studying and counting his breathing and picking him up unnecessarily to make sure he is not limp and messing with him a bit to make sure he seems appropriately annoyed. My point is there are so many things that babies do that in a full term baby can be easily dismissed but in a preemie become potential symptoms with a high penalty for failure if your decision is wrong.

That is why I cried this morning from gratitude that I lucked out by marrying a man that turns out to be such an incredible father and husband. More than I ever knew he would be. He searched for hours on the internet for affordable pulse ox monitors that were approved for neonates and they arrived yesterday to my suprise. I realized that helps to eliminate this "am I being paranoid?" guessing game that we have to do with our babies. I won't have any doubt now that it is time to call a doctor or take them to an ER. An apnea alarm is great, but cannot detect an irregular breathing pattern that is resulting in hypoxia for an extended time. A pulse ox monitor will let us know if her breathing is being compromised long before the point where symptoms are more readily identifiable.

It's the same reason I was overjoyed to find a brand new $60 digital baby scale at a thrift store for $5. Worried they aren't gaining enough weight and the routine doctor appointment is in 3 weeks? No worries. Just pop them on the scale and breathe easy.

I've had some folks be judgmental towards us about the scale and the monitors and make some comments I did not appreciate. I think it is because they need to judge me as overcautious because otherwise to them it would mean they are not being cautious enough. I don't judge folks for not going to the same lengths we are at all. Everyone has different experiences, and we have additional risks and have seen things go really, really wrong so we have good reason for our cautious approach. And keep in mind that for 12 years I have worked at 911. I work at "Bad Things Happen to Good People" Central Station. What some people see as being overcautious is me managing risks based on over a decade of information on what actually happens to people everday that most folks don't hear about. Some of the worst stuff happens to great parents who never thought anything like that could happen to them.

I guess what I'm realizing about this parenting thing is that just like most things in life, you have to do what you know is the right thing and not worry so much about what other folks think of you. I would give anything if my babies could have been born full term without having their health compromised and so that I could exist in blissful ignorance of such complications. But this is my reality, and I have to accept that we share more risks and there are certain things we cannot do. So I guess that means no pictures of my babies on Santa's lap screaming in terror this year. Maybe next year I can traumatize them.

Preemie parenting is different.

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