Category Archives: preemie mom

noodle magic

Posted on by
3

One thing that I have definitely learned living on preemie time with Daniel is to sometimes step away…let others step in…let him figure out…just trust.

Daniel still does not know how to swim. Being the person who (barely) learned how to swim in her Senior year because one HAD to swim the width of the pool in order to pass PE, I resolved as a mother that my kids would know how to swim…dammit! Mom is not water safe so my kids better be. Who else will save me if I were to get in the water.

Right?!

And so my girls learned. And they swim. They swim well….if they choose to. Daniel, on the other hand still can not even put his face in the water.

SIGH!

Sensory Processing Dysfunction Problems.

I can’t explain it in a way that “normal” folks can understand. Yes, we tried this…we tried that too…OMG, we did nothing but that thing all the time…and that, that was a major FAIL! In other words, the advice, well, unless you are living it, you don’t get it because if you were living it you would likely NOT offer advice.

Just saying.

Meanwhile, while Daniel does not know how to swim, he is at least water safe around a pool under our watchful eyes. He knows his limits and he would be the last kid to push those boundaries because…

put his face in the water?!

Are you freaking kidding me??!!

No.

Around a pool, I trust him, as we watch him.

While swimming this weekend with his cousin, whom he adores, my sister in law noticed Daniel’s cautiousness in the pool. He and Kaya are just a year apart in age so it is hard not to notice the difference between the two in the pool. One is a confident fish in the water and the other hangs out in the 3 foot side of the pool and rather than dive for objects picks then up with his feet. He has some mad skills but still, he is a landlubber, definitely.

Then Teri got in the pool with him with a noodle.

What mom can not do, what dad can not do, even what privately hired swim instructors could not do, Auntie Teri does.

Daniel can float around in the pool with a noodle!!! True, it is in 3-4 feet of water, but he is floating!

It’s like it is magic this noodle that makes one float like this!!!

Absolutely, positively, totally magic all in one a styrofoam noodle.

Magic!

Dudes, we are thismuchcloser to someday Daniel putting his face in the water. Such is life living on preemie time.

because he can, breaking boards for good

Posted on by

Remember six months ago when Daniel traded in that green, black striped belt for a blue belt? What an amazing day it was as we realized that it was just three years before that he had his very first tae kwon do class and learned how to break a board with his foot. I still marvel over what he has done with tae kwon do discovering his own strength, focus and determination. Whether he has ever realized it or not, these traits have always been a part of who he is ever since he was a one pound baby fighting for his life. The most willful, or feisty of micropreemies are not only the ones who drive their NICU caregivers to crazy exhaustion, but are the ones who survive AND thrive. I’ll let you in on a little secret; they are also NICU caregivers’ most favorite patients. Yes, watching Daniel practice tae kwon do I am reminded of the fact that he is part of a small community of the strongest humans on the planet. How lucky he is to put on that uniform and tie that blue belt around his waist.

With that thought in mind, Daniel and members of his martial arts studio have signed on to Martial Arts for St. Jude to break as many boards as possible next Saturday all to benefit the incredible work done at St. Jude Children’s Research Hospital. How could an amazing kid like Daniel not want to help out amazing, strong and brave kids just like himself?

Exactly.

Oh, and he gets to break boards. It’s always fun to yell real loud as you kick a board with your bare foot and break it.

Seriously.

Daniel’s goal is to raise $251, one dollar more than what he must raise to receive a silver medal. Why not go for the $500 to get the gold medal, I wonder. Well, he likes the silver.

Okay then.

If you can, won’t you help Daniel reach his goal? Your tax-deductible donation helps to ensure that families who seek treatment for their children at St. Jude Children’s Research Hospital never pay for anything as well as help fund lifesaving research that benefit not only patients at St. Jude’s but also pediatric cancer patients everywhere.

As fans of Daniel you all have always been so generous whether it be for the March of Dimes through TeamDaniel or just to help a kid out with his jog-a-thon so his special ed class can win the school ice cream party. That’s one of the many reasons why we love you all…because you care, you really care for this amazing little man of ours. So if you can…no amount ever too small…help Daniel reach his $251 fundraising goal…for the patients of St. Jude Children’s Research Hospital…for the silver medal Daniel wants to earn…for all the boards he is planning to break..

Thank you!

honor roll for the remarkable

Posted on by

What a school year it has been here under the Big Top!

Only four more days left in this school year then, oh for goodness sakes, my two youngest children will be a SENIOR and a FIFTH GRADER!!!

I’m so proud of both of these babies of mine. They both have worked hard managing more than their fair share of obstacles to persevere, grow (a lot) and accomplish much. For Daniel it is especially gratifying. Remember the beginning of this school year? How we fought so hard to keep him in the same school and found ourselves defending the special education the school district provides for him because the law demands it? Well, guess who made the honor roll?

Go ahead, guess….

I’ll wait…

Can I hear a loud “OH YEAH BABY!!!“?!

So dear Mr. Dennis Wyatt, to answer your question that you posed seven months ago: “The question that no one is asking given the budget crisis is whether we can continue to afford to support special education in K-12 at the current level. That may sound like borderline blasphemy just to ask the question, but it needs to be asked…” …

Can we afford it?

Is it really worth it?

Is it worth it spending all the money, time and energy on a child with obvious learning challenges and delays along with sensory processing dysfunctions that sometimes make it virtually impossible to focus and learn?

Oh hell yeah!!!

I can assure you that no one amongst his peers worked as hard as he did to EARN that 3.0. Truly remarkable is he, my amazing son. Again I am reminded how lucky my son is, How truly fortunate and amazing and remarkable. But today, this time I am reminded in a way that makes me so proud of him and the people who have come along side of him to support him and encourage him. This beyond the normal that we have learned to celebrate as parents of a child who was first presented little chance for survival or any kind of good quality of life. This is a feat worth celebrating…even for the normal.

OMG, my amazing baby boy made honor roll!!!!

Yeah, okay mom, enough with the pictures!

those hormones I warned y’all about

Posted on by

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

Posted on by

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.