World Prematurity Day

Same Kid - Different Day

Same Kid – Different Day

Believe it or not the kids in that picture are one and the same.

The picture on the right is Anne Marie, September 2014, on her first day of pre-school, or spree-school as she calls it. She’s 2 1/2 years old and about 27 pounds in that shot.

On the far left is Anne Marie too. It was her first week of life, March 2012. Anne Marie was a micro-preemie, born 3 1/2 months early in week 25, she weighed 1 pound 12 ounces and was 12 inches long. If not for the doctors, nurses, and staff at the University of Tennessee, especially in the Neonatal Intensive Care Unit, she would not be alive.

Linda Clare  22 March 2012

Linda Clare 22 March 2012

Anne Marie was not alone. She has a twin sister, Linda Claire, same weight, same length. Linda Claire passed away 5 hours after birth. Thanks to the UT staff, Linda Claire also survived the birth. It was what didn’t happen in week 21, no lung development due to lack of sac fluid, that left Anne Marie to go it alone in her 5 month stay at UT Med Center.

17 November is World Prematurity Day. You know I’m not entirely sure what these “Awareness Days” accomplish, other than allowing parents like me to brag on and remember our kids. I mean, yeah I’m going to shake you down for money at the end of this, but hey I can do that any time. World Prematurity Remembrance Day might be better.

We look at Anne Marie run into her spree-school classroom and we remember the days and nights in the UT NICU wondering if she would survive. We remember the constant buzzing, beeping, and blipping of the myriad of equipment hooked to her and all the babies in the Big House, the large ward were the preemies fought their battles literally side by side. We remember the docs and nurses working tirelessly morning, noon, and night; dealing with heart monitors, feeding tubes, needles, and of course deer in the headlight parents. I even remember little George, a boy making his fight just the other side of Anne Marie. George was thriving one day and gone the next. No answers, no reason, no explantation, just gone. So we remember.

Of course every March 22nd and July 29th and Christmas we go to Linda Claire’s resting place and remember the events that altered our family forever. I remember Tracy digging deep at the moment of truth, realizing she would have to keep her head amidst the chaos of the triage room if these kids were to have any chance at all. I remember the doc who was working on Linda Claire, he just couldn’t bring himself to give up. I remember another doc, a kid really, a kid I would come to call TopGun, telling me someone had to make a decision. The someone was me, the decision was to keep going or stop extreme measures, with just a few more hours with our Linda Claire the only result, no matter the call.

I didn’t want remember any of that. But it turns out it feels good to remember, feels good to cry a little. There is some joy in the remembering, some sanctuary in the story telling. Awareness Days come with a lot of stats and facts, but Linda Claire isn’t just a statistic, she’s our story and we’re hers. Anne Marie isn’t just a fact, she’s a reality. Something she’s fond of reminding us everyday.

No, these kids aren’t stats and facts and fund raiser flyer material. They are part of who we are. They’re part of our history and thankfully, our future. They shape us, reveal things in us we might not have known about ourselves. They are our story.

Take it from me, they are a story worth telling.

 

 

If you must, here’s a link for the stats and facts: https://www.facebook.com/WorldPrematurityDay

And if your heart desires, donations can be made to:

In Memory of Linda Claire Linardo

Neonatal Intensive Care Unit at the University of Tennessee Medical Center c/o Office of Development

 2121 Medical Center Way, Suite 110, Knoxville TN, 37920

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Diary of a SAHD: One and done.

Well, getting down to it now. One small hurdle and as they say, that will be that. It’s been quite the journey. At times it seems like yesterday and then sometimes it feels like a lifetime ago. 21 months ago we were blessed with this:

From my deep sea diving collection - the latest in incubator wear.

From my deep sea diving collection – the latest in incubator wear.

a 1lb 12oz question mark.

She was a question mark because we had no idea what would happen or how to handle, of if we could handle, the whole deal. We didn’t know what to do while in the hospital for almost five months. We were clueless to what issues we would be bringing home, or if we would even get the chance to bring her home.

We were lucky by most standards. We did get to bring her home. We left the NICU with a heart monitor and zero medication. Occupational and speech therapy awaited, but again by most standards for a 1lb 12oz micro-preemie, we got off easy. The OT was in-home and at a local facility once a week, speech was in home once a week as well. Our dance card was full for sure but it was an uncomplicated two step even a rhythmless bastard like me could manage.

As the months went by we shed the heart monitor, then the RSV vaccinations. A few months ago we finished up with the out patient Occupation Therapy, leaving only the in home therapies remaining.

Or should I say therapy.

She can't say Iggles! yet, but I'm working on it.

From a question mark to a 21 month, 24.8 pound exclamation point

Today is a big milestone for us. The speech therapist discharged Anne Marie today. Usually these types of things last until the 2nd birthday, 3 months from now in our case. But after hearing Anne Marie begin to speak in sentences and refer to her breakfast as eggs and sausaeeeg, (read that with an Italian accent), the speech therapist deemed her ahead of her peers. That’s her actual age peers by the way not her adjusted age peers.

Even looking at the pictures now it’s hard to believe that any of it happened. That’s the lifetime ago part. To see her at 1lb just doesn’t compute with what we see now. Just the other day I scolded her for throwing everything off the kitchen table. I never thought I would get to the point of scolding that little kid with all the tubes up her nose.  This kid we thought might be fragile, have development issues, be lagging behind her peers, yeah not hardly. Go back through the archives and read some of the stuff this kid has pulled, the weird pain threshold she has, it’s bizarre.

We knew Frank would be in for a surprise when Anne Marie came home, turns out we all were surprised.

The big one came when the speech therapist said it was time to discharge her. I was more ready than Tracy, but still it seemed very early for that. Liz, the speech lady said “Yeah it is, but she’s past all the goals of a 21 month old, we’re working on 24-28 month old stuff now and she’s doing that too.

Yeah I’m bragging, sue me.

Looks like her mother, but "The Look" she gets from me.

Looks like her mother, but “The Look” she gets from me.

So 21 months later we say goodbye to Liz the speech lady and thank her for her service.

Here is the extremely talented Ms Liz and her star pupil.

Another bonus for me, no frantic cleaning of the house on Tuesday mornings so Liz doesn’t find out we live like animals most of the time. Anyway, she was great. Again we were fortunate to get one of the best in the business to help our little pistol named Anne Marie.

I get that this may seem minor to y’all. In reality it probably is. However, one thing we learned, one thing that was ingrained in us during our time in the NICU; celebrate every step forward. Every ounce of weight gain, every ounce of milk from a bottle instead of the feeding tube, every hour without a heart or breathing failure, celebrate these things.

James said “Whereas ye know not what shall be on the morrow.” The morrow? Bro we didn’t know where we might be by the next minute.

A new minute has arrived. So we celebrate.

Sue me.

Diary of a Stay At Home Dad: “She is very soft.”

“She is very soft daddy.”

That was Frank’s first proclamation when he came down stairs the day after we brought her home and realized his sister was here to stay.

It’s been a while.  This may be the longest break I’ve taken from Frank’s Place since this all started last November.   To say we have been tinkering with a workable sleeping schedule would be an understatement.  Currently I have the 11pm and 2am feedings while Tracy gets the 5am and any crying or heart alarms that occur after 3am.  So far so good I think.

When we had Frank it was a little easier.  We followed the advice of some wise veterans, and we let him cry for ten minutes to see if he would go back to sleep.  At first we thought this was a little barbaric, until I started clocking the average time it took him to stop crying and actually go back to sleep.  He never got past 3 minutes.  So we were able to shoehorn him to a sleeping schedule.

Amongst the metric ton of unsolicited advice we received after Frank’s birth, this little needle in a haystack of expertise was the best, partly because we asked and mostly because it worked like a champ.

So there are a few things going on now that make this shoehorning a little less doable with Anne Marie.  First and foremost, she’s a micro-premmie, meaning her birth weight was less than 3 pounds.  We feel like we shouldn’t let her cry very long.  I mean she’s ten pounds now so I’m not sure why her birth weight makes us hesitate or abandon the experiences we gained with Frank, but it does.

The other issue is Frank of course.  He feels the need to be on her every moment, except when he is sleeping of course.  And the kid can sleep the hell out of his bed.  Those of you out there who have babysat Frank know his legendary relationship he has with mattress and pillow.  Four hour naps and 12 hour sleepathons through the night are the standard.  The only deviation is when he naps for five hours or goes 13-14 hours dusk to dawn.  Plus he can sleep through anything from tornadoes to vicious thunderstorms to smoke alarms and now his sisters crying and heart monitor alarms.

But when he is awake he feels everyone should be awake, including his sister.

Man he was a psycho the day we brought her home.  He was never more than 1 inch from her face the entire day.  I wasn’t sure wether to tranquilize him or blast him with a water cannon normally used for riot suppression.  He has calmed down a bit, but he still wants to “soft her”.  That’s his way of saying he wants to touch her head.  Anytime he does someone will always say, Frank do it softly.  So now that’s what he calls touching his sister, softing her.

Frank has also proclaimed that Anne Marie is a very cute baby, a very small baby, and he alerts us, at the top of his lungs, whenever she is sleeping.  Whenever she makes eye contact with him he says “Anne Marie likes me.”

Enjoy it while it lasts Frank, enjoy it while it lasts.

 

Here of some shots of the only Anne Marie in captivity settling in to her new surounds.

Frank violating AM’s personal space, again.

Hanging with Gobby (my mom)

Trying out the accessories

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This last one I should have done with time lapse.  It took her about ten minutes to migrate from the middle of the cushion to the crevice between the two cushions until she was comfortable and finally fell asleep for good.  She never made a sound, just kept adjusting until she got to where she is in this picture.

Favorite new sleeping space

 

 

 

Here’s hoping we have another sleeper on our hands.