Born @ 27 weeks
2lbs 7oz

Sunday, July 30, 2017

Please Lord, Not Again

At times, Shaw's prematurity feels like a distant memory.
Sure, we talk about it on occasion - how he was sick, how he has scars and doctor appointments... but Shaw just completed his first year of Kindergarten!

We've been on the lookout for cognitive and of course addressed physical delays for years; but clearing Kinder with his peers - that has been one hell of a milestone.

Bee Mighty has shifted so much from Shaw to all the families we are helping, that I rarely talk about Shaw and how his prematurity is impacting his life today because everything feels so much like a blessing. We are so far from the fear and tears we shed for so many years.

Until yesterday.

Let me back up.

Shaw was intubated (on life support) at birth until he became strong enough to breathe with less support; however, that was far from the last time Shaw was intubated. After each surgery in the NICU, he returned to the ventilator. Then, the first year he was home with us, there were a handful of times he would become sick with the common cold and his airway would begin to close. We would readily land in the PICU (Pediatric Intensive Care Unit) on the ventilator again.

We learned quickly that all of these intubations were causing scarring on Shaw's airway, further narrowing the passage, thus exacerbating the breathing challenges.

We ventured into a few surgeries with Shaw as an infant to open his airway. Each time the ENT would go in, he would snip off some of the scar tissue allowing for additional airflow.

Unfortunately, after each surgery those first three years, the tissue kept coming back. After much consideration and prayers, we agreed to an exploratory surgery where we would place a form of chemo on Shaw's airway, with the hope of killing that extra scar tissue and opening his airway permanently.

Whether Shaw's airway grew with his little body or the chemo  worked, we have been ventilator and ICU free for the last three years!

When Shaw started Kindergarten this year, I naturally needed to explain his shunt (which is so awkward by the way.... I start by saying "Shaw has this device in his brain..."  and the color drains from the person's face I'm speaking to, while their mouth visibly gapes open).

Anyway, I also very plainly say, "Shaw also has narrow airway disease, so if you notice he is having trouble breathing, pulling (I demonstrate to give a visual) or becomes striderous (I start breathing like a cow for some fodder), then please call 911 and I'll meet the ambulance wherever he is."

It's really very matter of fact.

Well, it turns out, that is a lot of responsibility to put on a school nurse. It wasn't long after school started that the calls began, "Um, Ms. Richter. I have Shaw in the office. He was running on the playground and is having a hard time catching his breath."  (Thank God they do this!)

I would race down to school, validate he just needed to calm down and he and I both would be on our way. All of us involved comforted and appreciative we had done the right thing.

After a couple months, I bought the school and oximeter. This reads Shaw's O2. So, when in doubt (PE, the playground, etc), school can read his stats immediately and know if he is getting enough air. This gave both comfort to the school, to Shaw and myself and worked for the remainder of the year.

Here is what you don't know. Shaw is a heavy breather. He mouth breathes, snores, is a restless sleeper. The list goes on. We have a Pulmonologist that cleared him from asthma. We have been to the Aerodigestive Clinic at Children's, completed sleep studies to prove he has mild apnea, but nothing that has warranted any action.

Late last Spring, I had a couple people ask me, "Is Shaw okay?" as he raced from the playground after a long day at school. I replied, "Yes. That is just his baseline." or "He is such a heavy breather. He's fine."

This summer, I had two Moms say to Shaw (in front of me - at different times), "Shaw, do you want to sit down and rest a minute." (My antennas became acutely aware that more people are pointing out this difference - but he has always been this way). 

We would pause and catch our breaths and off again.

Even more recently, Shaw has vehemently said he doesn't like tennis.
He doesn't want to play soccer.
He hates swimming and skiing....
The list goes on and on...

But he likes acting and guitar. (Wahoo! We have an artist! What a gift!) 

Well, you may be reading this list of red flags thinking, "WTF, lady!? Your son can't breathe!"

I just missed it.

I honestly am so used to his raspy breath and high level of activity that I assumed this is our norm.

Now, on the inside, I'm screaming, "My God, our child can't breathe!"

I'm trying to grapple with the fact that our son will be having surgery on his airway in the next two weeks. 

Dr. Chan says he just doesn't know what he is going to do until he sees what he is dealing with, when he gets in there. (There being Shaw's airway).

We have been through plenty of surgeries. I know the drill. It's not easy, but this isn't our first rodeo.

What makes it so different is the ambush.
I just didn't go into that appointment yesterday with the thought of a hospital stay with our six year old, within the month.

Worse, Shaw is going into first grade. I can't just hold him and rock him to sleep like I have in the past (none of which he remembers).

This time, he KNOWS. He is fearful. He will remember.

Right or wrong, I've told him while this may be scary, he will feel better /  breathe better.
Can you imagine not being able to breathe?
Right or wrong, I also have promised limitless ice cream, movies for days and lego sets only kings dream of.... (I don't know. I panicked).

So.... here we go again.

Damn you, prematurity! You haunted us for years, left us for others and now are back rearing your evil head again!

But really, will it ever really be over?

Prematurity has left it's mark on Shaw and so many of his friends out there - even six years later, we are still in therapy. We are still needing surgery.

The babies Bee Mighty is helping today, often are just beginning their long journey. They have no idea what is ahead.

This also reinforces to me so much what we do with Bee Mighty. It just doesn't end and families continue to pay. Our annual fundraiser is coming up - Bee Something for Bee Mighty on October 14th in Charlotte, NC. It is such a fabulous event and is the major fundraiser that provides money for the year to fund all the families we help. If you are in Charlotte, please come. It makes such a tremendous impact in our community with families just like ours. Today, more than ever... it just doesn't end.

Back to the concern at hand...
Long disappointed sigh.

Here we go again.

Our sweet Avery Shaw Richter.
He put the Avery in BrAVERY.
(Why did it take me six years to think of that?)

Note the immense enthusiasm

Dragonfly larvae from Creek Adventures

Urban summer nights

A visit from Nana

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