Tuesday, August 4, 2009

How Did You Know???

I find myself in these past couple of weeks looking for exciting blogging goodies as our usual medical fiasco's have taken a sudden turn for the boring.

I've read many blogs of parents with Ds kids and how they first found out, and so I figured I would share my own experience.

My pregnancy with V was very unexpected to say the least.
All of my pregnancies were very unexpected, so nothing new.
My Mom used to call me "fertile Myrtle".

Anyway, all of my pregnancies have been considered "high risk" from the start due to the fact that I suffer from systemic lupus. So through them all I was poked and prodded, ultrasounded to the extreme, and generally under super human scrutiny.

Aside from some expected kidney issues and my blood platelets hovering near the critical range (the unfortunate norm for me), my last pregnancy was really my most unevenful.

I had all of the standard screening blood tests and nothing ever came back out of the ordinary. During one of my many ultrasounds his arm length showed a tiny bit short but I was told that even a few days off on the conception date could account for that, so no worries.

All was hunky dorey until my 32nd week when I showed up for work and within an hour, I knew something wasn't right.
I'd had braxton hicks contractions before and this wasn't it.
The pain was deep in my back, I had premature labor with all my kids (another gift from the lupus) but was able to control it with meds and bedrest until near term.
I wasn't panicked, I was even a bit shocked that I hadn't felt it before now.
I had to inform my boss who immediately pulled her car around to the front of the building and advised me that we were heading to the hospital NOW. I didn't argue.
She helped get me admitted and called my husband to let him know.

The nurses knew in pretty short order that I had done this in the past and we started the usual IV meds to put a stop to the contractions. It worked, and fast. Within an hour I was contraction free. They decided to monitor me for a few more hours and would then send me home to vegitate for a at least another month or more hopefully.

At around 11pm a nurse informed me that the OB doc had written my discharge orders and I was free to go.. are you kidding me???
You want my husband to wake up three little kids and come pick me up at 11:00 at night??

They took mercy on us and since the floor was pretty quiet they said I could rest for the night and he could pick me up in the morning.

Somewhere around 1am I woke up for my first trip of the night to pee.
When I was finished I stood up and suddenly felt a gush.
HOLY CRAP! I knew what that was, but in true me fashion I grabbed a towel and cleaned up my puddle before calling the nurse.
First she asked if I was certain that it wasn't urine, and then scolded me laughingly for cleaning the whole thing up since thay couldn't use my puddle to strip test for amniotic fluid.

I obliged her need and lost a little more right there in the bed.. how's that for service. I do aim to please.

Of course it was positive and since they were not prepared to handle a potential preemie delivery, I was redlighted downtown to Arnold Palmer women and childern's hospital.

During my initial admission they weren't overly conscerned, they even thought they might be able to hold me off for a while... NOT.

After more than a few failed attempts to stop my labor they realized that this baby was coming and they'd better get ready.

Moments later, as I was moved to a delivery suite, V's heart rate began to dip dangerously low with each contraction. The doc figured it to be stress from the contractions and wanted to try to replenish my amniotic fluid to give him some more cushion. An IV tube (without the needle) was gently threaded up into my uterus and each time I contracted and lost fluid, they pushed some back in. Sounded good, even worked some times. Not for me.

Still more decels in his heart rate so they decided to add a scalp monitor to the mix to get a better reading. Hint: It doesn't go on MY scalp.
One more piece of wiring up my @&$^. Needless to say I was uncomfortable. To make matters worse, I was advised that any pain meds would lower his heart rate even more so thay would not be allowed. An epidural was also out of the question in my case due to my lack of blood platelets and my low clotting factor. Yay!

A short time later they realized the situation was progressively getting worse and a C-section was going to be needed. I was given an injection to stop my contractions since there was no need to have them at this point.
It didn't work, and neither did the second one. By now I had gone from extreme discomfort to downright screaming pain.

Thank God they were able to get a surgical room quickly and gave me the gas. I've never been so happy to have a big black mask on my face EVER.

Sometime later I remember a brief passing in the hall and touching V's little hand, but I was blessedly drugged up. They had to do an "old fashioned" C-section (midline) incision instead of a small bikini line cut due to bleeding issues and I was left with quite the impressive scar and 15 staples holding my gut together.

Whoever inveted the morphine PCA pump is going to heaven. That's all I have to say about that.

The next morning I awoke in my drug induced fog to one doctor after another arriving to "prepare" me for what had taken place.
Apparently the signs of Ds were fairly apparent at birth so the array of necessary testing had already been done.

The geneticist came to tell us why she felt he needed to be tested. Outward appearance, low muscle tone, and the single crease across one palm. She said he didn't possess all the possible traits, but enough to warrant a blood test. We half heartedly agreed due to the fact that our third son also had the single palmar crease at birth and is totally "normal". She agreed that was unusual but insisted on the test anyway.

Next came the cardiologist. She was amazing. She explained that she had already done extensive echocardiograms and they all showed and ENORMOUS VSD. It was located in a odd position behind a major valve and that was the only thing slowing the shunt of blood between the ventricles. Therefore he was not currently in heart failure but he would be before too long. She calmly went over all the synptoms of CHF that we would begin to see and how to handle them. She was hopeful that with proper medication and treatment we could hold off surgery until he reached at least 10 pounds in weight and four months old. He was currently 4lbs.
She explained that at 10 lbs the mortality rate for the surgical repair he would need drops drastically, and at four months of age the brain is better developed and can more easily handle heart-lung bypass. So, that was our goal.

Stay tuned for part 2...


  1. I just found your blog through Lacey and Jaxson. What a story, I'm waiting for the rest of it

  2. I am just getting use to a new website so I still don't know an easy way to leave a comment!

  3. Wow Stephanie,
    This sounds pretty crazy. My delivery was also an emerg c section. I too had lots of medical wires and the scalp probe ect.....Look forward to reading part 2.:)

  4. Ya know, my pregnancies were all uneventful. I even danced to 8 months with my first. When I was pregnant with Jaxson, even though we didn't know anything, even heart stuff, until her was born. The whole pregnancy was horrible. and his heartrate kept dropping to. they were wheeling me out of my room for a c section when he was born. The kid was naughty from before he was ever born.
    We had the GJ tube just until they redid his nissen. I didn't like it because it was so bulky. But if it keeps him out of surgery I'll do it. I really don't think he's strong enough for surgery right now.

  5. Oooooooooo....i love all these back-stories....don't tell V., though...he'll manage to shoot some new internal organ out his nose to bring things back to the usual "today's stomach-turning finding" format.