Born @ 27 weeks
2lbs 7oz

Saturday, January 5, 2013

Just When You Have It Figured Out

January. A new year. A chance to look back at the year before and see (and celebrate) how far we have come. A chance to look ahead and anticipate what is to come.

One of my favorite things to do after the first of the year is to sit down with my husband and discuss our accomplishments from the year, as well as look to the year ahead. We open a bottle of wine, tune out the rest of the world and discuss our goals, hopes and dreams for the year. We talk about what we personally would like to achieve. We talk about what we hope to do for our children and most importantly we talk about our goals as a family. They range from spiritual to professional, financial to educational, health to recreational.

For the last two years, 100% of our goals turned toward our children. Michael and I made many sacrifices (which we would gladly do again) to ensure our boys were safe and had everything they NEEDED.

This year, I have been drumming up goals about ME - and really excited to do so. Selfishly, I want to make some time for myself to keep my head in the right place. I strongly feel it is better for my kids, husband and family, when I am taking care of myself. I have been looking forward to making this a reality, when we physically write it down on our list for 2013.

That said, in the blink of an eye, that goal quickly fades into a tail spin of worry and a reshifting of priorities.

The last three days, Shaw has been extrememly clingy. As a Mom with a little guy like Shaw, you naturally ask yourself: 1) Is he sick? 2) Is he REALLY sick (ie shunt malfunction) or 3) Is he going through a very normal stage of a toddler?

I struggle the variables of situations like these at great length.

FACT: We do not want to treat our children differently (discipline, opportunities, challenges, encouragement).
FACT: Our children ARE very different.

There is always a looming question of 'is this related to his prematurity, sickness, diagnosis?' And no matter how hard we try to block that out, ... Uncertainty and second guessing is always lurking in the darkness.

For instance, Shaw is a screamer. S C R E A M E R - when he wakes up in the middle of the night, when he is mad, when he is in the car seat, when he is playing with his brother, when we are cooking dinner, when we are eating. He lets out these shrills that can make the hair on the back of your neck stand up.

I have a therapist in one ear saying, "His brain is ahead of his speech. He wants to communicate to you, but is having trouble, so he expresses frustration through screaming." On the other hand, another doctor has said to me, "You don't want a spoiled child on your hands. This is a behavioral issue."

Which do you believe?

Well, we tend to take all of the opinions and use our best judgement. Basically, we do the best we can.

This Saturday morning, we had plans to get to the park and nature museum just after breakfast; however, I noticed Shaw acting peculiar. He raised his right hand and it seemed frozen, as he twitched slightly.

I rushed Michael to the kitchen, in fear Shaw was having his first seizure. Michael caught just the end, but we exchanged a glance that read each other's minds, as if we had spoken our concerns aloud. Just as quickly as it happened, Shaw's personality resumed with a big smile as he screamed, "E A T!" He didn't seemed phased, but we were.

We continued to watch him, while simultaneously back-tracking the last few days. Could this be a side effect from his monthly synigis shots? Is this why he has been so clingy? He has taken some major falls lately... in fact (mind now racing), at least one big fall every day for the last three days. His teeth burst his lip, as he tripped into a wooden bench. His brother breezed past him and just the wind alone blew him over to nail his head on the corner of the wall. His brother slammed the door with just the right amount of effort to catch the side of Shaw's head. Just this morning, Shaw's feet seemed to tangle in space and he went down in the bathroom, again leaving his head black and blue.

As my mind began adding up the balance AND potential seizure (sheesh and potential head trauma!) it was time to call the doctor.

As we waited on hold for a recommendation from our doctors, Shaw's temp had spiked to 102. Michael was out the door with Shaw in hand.

Now, the questions continue to haunt: Is this a bug (like every toddler this time of year?) or Could this be a shunt malfunction?

A Shunt malfunction is very common and requires immediate brain surgery to stop the blockage, replace the catheter or prevent the CSF infection in the brain. We have been INCREDIBLY FORTUNATE to have not had a malfunction to date... but we silently wait.

Shaw was rushed to the top of the list, seen within minutes. We cling to every word the doctor is saying...

It is 2pm now. Shaw is resting. Nash is sleeping. We are readjusting our plans to stand watch. The doctor assured us this is a virus and not a malfunction.


The balance and twitching could be associated with his fever. We have been instructed to watch him the next few days and determine if he continues to be symptamatic.

Prayers answered. (My worry has gone from a 10 to a....7.) We wait.

Just when we thought we had everything figured out!

The good news is (implied sarcasm) by January 3rd, we have already met our $2,500 insurance deductible for 2013 from Shaw's monthly synigis shots, so at least we know we are covered for the rest of the year for hospitalizations and doctor visits. :|

Just when you think you have it all figured out, life throws you a curve ball. Thankfully, this wasn't a huge one - but it was a humbling reminder of how quickly things can change.

***Prayers please for a dear friend of Shaw's, Pierce. Pierce is an amazing 23 weeker that continues to defy all odds. His mother has been a Godsend to me as she and I navigate shunts, hydrocephalous, isolation, Neurosurgeons, non profits, therapy, insurance and our faith. They learned this week that their son may need ANOTHER shunt in his brain's 4th ventricle. Please pray for wisdom as they make decisions for their son, as well as peace and strength for the entire family.***

Thank you.

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