Category Archives: preemie mom

those hormones I warned y’all about

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Oh dear glob they are bubbling up…and they ain’t no female, pms-y kind of hormones either!

My sweet boy, my beautiful son is 11 years old and the hormones are starting to bubble up. No, they aren’t a raging, rolling boil…yet. But they are just at the boiling point and…

I’m not liking it.

Not.

One.

Bit.

I have survived four girls through the transition of child to stinky pre-teen to raging adolescence. This can not possibly be hard for me anymore.

No way!

I’ve got this.

Totally.

I believed that.

I truly did.

I thought wrong.

Oh my goodness! My sweet little boy suddenly is one big gloomy, grumpy, irritated, annoyed person and he is directing that flood of emotions at me…complete with heavy sighs and eye rolls.

WHAT?!?

What indeed, son. We both are wondering what right now. Although I have to confess that my “what” is actually a three word “what“.

Then this comes on.

Oh my darling boy! Not a day goes by where I am not reminded just how fortunate, how so damn lucky we are…

you are.

Yesterday was one of those days. My heart breaks for another family, another amazing, brave and strong one like you. So I close my eyes and cry hot tears while I offer up a quick thanks for you…and say a prayer for the other. Then I say thank you for these hormones that are just beginning to bubble up to a boil because I get to experience them…again…with you.

not missed

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At work the other night I find that I have a little bit of time on my hands…

No! Goodness, no it is not that word that is the opposite of fast or busy and it isn’t that word that starts with the letter “q” either.

SSSHHHH!!!!

Nurses do not say such things out loud unless they are naive, newbies, desperate for more hours and time away from bathroom breaks, meal breaks, family time, sleep…or are eager to help move things along for a patient who might have been  maybe laboring all day.

Don’t say those words out loud.

Please.

Trust me in my unit we have plenty to keep us occupied and working hard…very hard…all the time. But the other night I found time on my hands…down time…and with down time we try to catch up. I chose to stock supplies; supplies that when I am slammed with patient care find that I do not have close at hand to help me deliver the kind of patient care that I expect to deliver….

EKG leads…feeding tubes…syringes…kleenex…lancets…heel warmers…gloves…IV tubing…baby wipes…diapers…4x4s…and on and on and on.

I pulled these things (and more) from the stock room with the intent that the next time we get slammed, when I am there, these things will be right where I expect them to be when I need them.

I can be very selfish when I am stocking the patient care areas that I am working in. Then again, I do it for my tiny patients too.

You are welcome tiny patients! Love you beautiful babies!!

So while gathering feeding supplies for gavage feedings because I do a lot of gavage feedings on any given 12 hour shift, I came across this.

Oh you 14 French MIC-Key gastrostomy feeding tube…you were such a HUGE part of my life for such a long time…a HUGE part of my son’s life and his father’s life and his sisters’ lives…until you were replaced by a Bard gastrostomy tube that had to be surgically placed and then, years later, surgically removed. I hated you and I hated the Bard too. Then again, I valued you, grew to rely on you…a lot. It is because of you I often questioned my own ability to care for my child, to nurture him, to feed him. But at the same time I was thankful that you were there poking out of my little boy’s abdominal wall because without you how else would I be able to feed my little boy for so many years?

Oh little 14 French MIC-Key gastrostomy feeding tube, we don’t see you very often here in our NICU but you are here tucked in that drawer in the stock room where we keep all the tube feeding supplies just in case. That is indeed a good thing because what if we did need you at say 0200? There you are, in that drawer. Waiting. Ready.

I close the drawer which you are stored in and sigh. No one needs you tonight or any time soon. Thank goodness. I don’t miss seeing you little 14 French MIC-Key gastrostomy feeding tube. I don’t miss you at all.

a better day thanks to sparkles

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Have you ever noticed how much better things are when there is a shiny disco ball spinning and catching all kinds of sparkly light?

No really. It is better. Inspiring too. I actually had the energy (and time) to clean Daniel’s room a little and get rid of old, broken-down, forgotten toys…actually a kid like Daniel doesn’t forget any of the contents of his room including what is in the dark recesses of the toy box in the closet.

Trust me.

But with the sparkles floating through the room reflecting off the spinning disco ball on his dresser, I was confident that all would be well. I even got real industrious and re-arranged the furniture a little.

Yeah I was feeling bold because what could possibly go wrong?

It was the disco lights, I swear. They were all shiny and made me feel all sparkly.

Fortunately, for me, the disco lights had a similar affect on Daniel as he walked into his clean room and carefully inspected his Hot Wheels collection and other treasures.

“I like it! Thanks Mom!”

WIN!!!

Then as he hugged me, he told me that he was going to go through his toys in the closet tomorrow.

Uh-oh…

lazy, lazy hypothalamus and pituitary

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Look! My babies!!!

Oh my god…the cute that they are! That is my first thought when I look at this shot. Would you believe that they are five years apart in age…looking at this picture? That’s the second thought that crosses my mind. Jodie is currently the same height as I am; which is absolutely awesome because she is determined to be a Rockette someday and is now definitely tall enough.

SQUEEEEE!!!!!

Daniel is currently only 3 feet 9 inches tall. When Jodie and her sisters were around Daniel’s age, they were more than a foot taller than he is now! So I look at this picture and I find myself again stressing over the fact that my little boy is not…has not been growing normally….then I look at the picture on that link and really see that OH MY GOD MY BOY HAS HARDLY GROWN AT ALL IN THE LAST TWO AND A HALF YEARS!!! Of course I already know this because he hasn’t outgrown clothes and shoes and we are carefully tracking his height and weight and we see him standing next to his classmates and see just how small he is. Perhaps I think about this a lot…

all the time…

okay, not all the time but pretty often….

pretty much since he was a baby.

Seriously.

As an infant, it was clear that he was not growing the way that he should have been. True, he did start life out weighing only 1 pound 6 ounces, but most micro-preemies actually do catch up with their peers.

Most.

Not my son.

Of course he had some issues related to eating, or actually, not eating. But even once he had his gastrostomy tube placed and he was being stuffed and stuffed with more calories than the average healthy adult takes in, he was still not growing. There had to be another reason. So he was referred to an endocrinologist who drew his blood every three months and kept telling me that he might benefit from Human Growth Hormone therapy…maybe, maybe not. Frustrated with her indecisiveness, we stopped seeing her. But we never did stop obsessing and worrying and stressing over the fact that Daniel was not growing. Thankfully, neither did his current pediatrician, who insisted that we get another endocrinologist’s opinion. Two-plus years of trips down to Children’s Hospital Central California in Madera for exams, a growth hormone stimulation test and then, another, we have definitively proved that Daniel is not growing, has not been growing normally because of his lazy, lazy hypothalamus and pituitary gland….or as Daniel understands it to be because his hypothalamus and pituitary gland are busy playing video games instead of working.

Yes, my son said that.

He’s right.

So now we know.

And so do the insurance gods who wanted proof before they would approve human growth hormone therapy because that shit is expensive and does he, like, REALLY need this…REALLY??!!

YES, you dorky insurance gods, he DOES need human growth hormone therapy!!!

YES!!

Two more tests are needed checking his thyroid and his adrenals and are to be done in the next few weeks and then we are getting this growing adventure started.

YES!!!

I’m excited…I’m elated…I’m relieved. Oh and I’m feeling guilty…and frustrated…and a little angry. I think of how long it took to get to this point, this diagnosis and well…oh mommy-guilt.

At least I can now obsess about something other than why is Daniel not growing.

because we are friends

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Here we are, gathered together…moms, waiting on our kids and doing what we do when we gather together for the sake of our children and all the things they make us juggle. We are talking.

We talk about those cute boots you just picked up…or that recipe I just saw on Pinterest and served for dinner to an epic fail…or Christmas shopping and how you are all done…or anything else that comes to mind.

You come in and sit down across from me and say hello to me and my child, who barely looks up because he is so focused on his Nintendo 3DS. Then you begin to share your latest adventure and frustration with one of your in-laws and…OMG…he is so RETARDED. I get your frustration with the situation that you had to deal with and can imagine how crazy he drove you that afternoon but just because he is so dang old and set in his ways it does not sound to me like he is intellectually disabled. Actually having met your in-law one time and sharing a conversation with him, I could say that I doubt that he is actually “mentally retarded”. But you go on with your epic story, occasionally looking me in the eye and even meeting my child’s gaze as you continue to describe your family member as a stupid, dumb retard because he is so retarded sometimes and how it drives you crazy when he acts so much like a retard.

http://farm9.staticflickr.com/8483/8242503656_6b53365a98.jpgMy kid turns off his Nintendo, hands it to me and quietly asks if he can leave the room where we all are sitting together. I hug him and encourage him to go ahead and join his sister outside.hanging out with her friends.

And you, my friend, the person who knows me, knows my children seem to have no clue whatsoever that you have hurt him…which of course hurts me.

Honestly, if you are my friend you would have the sensitivity and empathy to know that at least in my presence or in the presence of my family that word is so hurtful, so offensive; and, if you truly are my friend, you would have the intelligence, the creativity, the sensitivity to consider using so many other much more descriptive adjectives. Wouldn’t you? Of course you would. That is why we are friends.

Perhaps I will get you a dictionary for Christmas…you know, because we are friends.