Monday, October 21, 2013

October, 2011 Down Syndrome Awareness Month... Day 24

A matter of the heart…

“Approximately 50% of all babies born with Down Syndrome also have a heart defect”, the nurse explained as she tried to straighten my room that morning. We weren’t even over hearing the Down Syndrome diagnosis when they told us they believed this was the reason that he was a lovely shade of bluish purple… just like a little grape.

Immediately following his delivery, the room became strangely quiet. He was my 4th baby… I was quite familiar with the usual excitement following the announcement of whether or not it’s a boy or girl. We had no idea (NO idea) that our lives were about to be turned upside down and inside out.

It’s funny the things you remember…

I remember Jon was filming (I made him promise he would because we had nothing from the older boy’s births, and just a snippet of a screaming Abby from her birth). When we watch it now, all we can hear is Jon repeating the same phrase… “he doesn’t look like the other kids, Susan”… almost like he didn’t know what else to say.

The nurse continued on in silence, aggressively rubbing his chest in hopes to stimulate him. Finally, I think she felt the need to quiet my husband. She told him… “he is his OWN little man daddy, and it’s OKAY that he doesn’t look like the others.”

And yes, the words ‘own’ and ‘okay’ were capitalized in her voice too.
She was very professional and quiet and compassionate and never stopped working on my baby… trying to get him to breath and cough and live. I think she knew we had a problem…

The pediatric cardiologist was soon called in. What an intimidating title... “pediatric cardiologist”… but let me just tell you, she was the kindest, sweetest woman. She pencil sketched so many human hearts that morning, never losing her patience with us or becoming at all annoyed with our barrage of questions. She drew it every way imaginable. And then drew it again.

Finally, at 3 months of age (3 of the fastest, busiest, craziest months of my life), Josh was admitted to Boston Children’s Hospital. He had been sick for the entire 3 months and now required oxygen at home full time. Our local pediatricians didn’t see a huge urgency and told me “he’s just a wheezy baby”.

Um… really? I knew better… it’s true what they say about a mama’s gut instinct.

Josh was quite ill when we arrived in Boston… so much so that the pulmonologist told us he wasn’t sure what was going to happen. It was no good. It was scary.

He was immediately started on antibiotics and fluid pills. A feeding tube was inserted past his stomach to his jejunum (didn’t know you’d be getting a crash course in medical terminology today, did you? Lol) and we waited. We waited for improvement. We waited
for him to stabilize. He didn’t. He continued to stump everyone. Nothing they tried seemed to make any difference in his breathing, in his lung sounds, or in that lovely grape-like skin tone.

I remember how hard that time was, but yet peaceful. I was away from the kids, alone with Josh, he was a mess, but I wasn’t.

As I sang “He’s got the whole world, in His hands” over and over (and over!), God gave peace beyond all possible understanding. I cried… sure I cried… but I wasn’t distraught or anxious. I was calm. Yes, I know that makes absolutely no sense. I can only say that it was real… real peace… real God given peace.

The cardiac surgeon came in one night and explained that there was nothing more they could do… they were going to operate the next morning.


He explained that Josh was very sick and not really stable enough to operate, but there was nothing else they could do.


I wonder how many times he said that… “nothing more we can do.” Looking back, I can clearly see he was trying to convince himself as much as me.

For whatever reason, I agreed. I signed the papers that said Josh might not live and I had real peace.

And it worked! The surgery worked! The hole was much larger than anyone had anticipated and, once repaired, Josh immediately began to improve… and flirt with the Cardiac ICU nurses. He was off oxygen within a week… and we went home within two.

We were discharged with warnings however… warnings that he would be very sickly, warnings that he would most likely have numerous hospitalizations during that winter, warnings about the fragile condition of his now damaged lungs… and instructions. They instructed me on what to watch for, when to take him to the doctor, when to get him to hospital immediately.

Guess what?

God knew better…

Josh has never been hospitalized for an illness since (only operations… not sickness). He has had colds turn to pneumonia many times, doctor visits, ER visits and chest x-rays… but no hospitalizations. The kid is amazing. And strong. And healthy.

We serve a Great Big Wonderful (and capable) God.

Today's picture is shocking, I apologize. But, I love to show it. I love to show it because it shows God's power in such a mighty way. God fixed Josh's heart and did a great big work in mine.

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