NL family or AL family?

For you baseball fans out there, which shall it be? Cards or Yanks? Bad guys or good guys? 9 World Championships or 27? NL or AL?

OR

Okay, let’s get real. This really isn’t up for debate but because Ira’s and Sophia’s maternal grandparents live in St. Louis, I can get behind the Cards…as long as they aren’t facing the Yanks.

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Ira's still here!

Sophia got up from her nap the other day, ran to Ira’s crib in the living room and upon arrival announced, “Ira’s still here! Hey Mom, Ira’s still here!” Our precious daughter doesn’t know what to expect from day to day. She’s feeling the effects of all this and is acting it out. I ask that you pray for her.
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Our mornings and evenings are chaotic. Ira needs quite a bit of our attention during those times. With meds to give, trach ties to change, feeding bags to switch, baths to give, throw up to clean up, and machines to maintain we can find ourselves immersed in Ira’s world. And it’s all very stressful.
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Ira is still on the same meds he’s been on since his NICU days: Viagra, Lasix, Prevacid. Along with those, Ira’s on three controlled substances: methadone, ativan, phenobarbital and two other diuretics. This past week, we’ve been tapering off the methadone and ativan. Today is his last day on those two meds. Ira’s not doing well with the wean. He’s so dependent on them. Read any account of a drug addict coming off his/her drugs and that’s a glimpse into Ira’s world. He shakes. He shakes when he sleeps. He sweats. He throws-up constantly. And he’s unhappy.
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Ira’s been out of the house twice since being home. I can’t describe to you how much stuff has to accompany Ira when he leaves the home. Someday, I’ll get someone to take a picture of Laura, Ira and me as we head out. I now know why people with special needs children have large vehicles. Ugh.
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But just in case you think I’m complaining, let me announce this alongside of Sophia: Ira’s still here!

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A Position of Privilege

Being a pastor as a profession has many privileges. This Friday night I get to take advantage of one of the great privileges of being a pastor. This Friday night I’ll officiate a wedding. But not just any wedding. The bride-to-be was one Ira’s doctors.

One of her fields of specialty is ECMO – the life support system that Ira was on for the first eight days of his life. This doctor and her team were with Ira, with our family during those eight very long and excruciating days. This doctor and her team were good about cluing Laura and me in on the intricacies of ECMO but more importantly this doctor empathized with our plight. And that’s why I gladly agreed to officiate her wedding.

Sure, there are times when my profession is full of frustrations but it’s times like these when I am reminded of the privilege it is to serve as a pastor.

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On Language

Not long ago a request was made of me to consider the language I use when writing for this blog. The one commenting noted how “shocked” he was that I use language like sucks and phrases like pissed off when writing. What was shocking to me was the person didn’t even note the title of my December 21, 2005 post!

I am a paradox when it comes to the written and spoken word. There are times when I use language flippantly tossing out overused and, therefore, meaningless phrases like pissed off or that’s hot or spare me your feeble attempt at levity. I should even admit that two weeks ago the words that’s too legit to quit could even be heard coming from my mouth. I’m well aware that when I use language in such cheeky ways the weight of consideration given to what I say is lessened.

But there are times – when I preach, teach or when I counsel – that I choose words carefully. Rarely do I preach extemporaneously for I believe that when speaking of/on/about/to God each word should be given consideration. I’m serious about the words that flow from my mouth in these moments and this is where the paradox lies. Sometimes I’m quite flippant, sometimes I’m very serious.

But ultimately the words can get in the way of what’s really going on because we have put an undue and undeserved amount of weight upon them. Ultimately language is secondary to the thing which it represents. Ultimately language recedes into the background as the thing the language describes takes front and center.

And so I’ll continue to be a paradox when using language on this blog and in my own life knowing that my language is ultimately not where judgment lies. The greatest example of what I’m talking about is the way evangelical Tony Campolo has been known to begin a sermon.

“Tens of thousands of children died last night because of poverty related issues and we don’t give a shit.”

After a brief moment of silence he continues.

“What’s disturbing to me is that just now, in that brief moment of silence, more of you were concerned with the fact that I said the word shit than with the fact that tens of thousands of children died last night.”

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Ira Turned 1!

So as most of you know, Ira turned one on Friday. I thought I would share some photos from the big day.

Sophia was very excited about the plates…as you can see.

My brother is 1!
Originally uploaded by joechays.

What would a birthday be without a Jeter jersey and a Yankees hat?

IMG_1525
Originally uploaded by joechays.

To say the least, this is one very happy family!

We are all so very happy
Originally uploaded by joechays.

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A Year Ago, Part Three

The night after Laura gave birth to Ira was hellish. We attempted to sleep that night. Who were we kidding? Even after being exhausted from giving birth, Laura still found herself awake wondering about Ira. I made the trek to his bedside a couple of different times that night. Laura was always waiting for me: waiting for a word, the word, any word.

After what seemed like the longest night, Friday morning came. Early that morning the doctors decided that Ira needed more help. He needed a life support system known as ECMO. It didn’t take long for them to rally the surgical team and the ECMO specialists. And in the blink of an eye, we were asked to leave Ira’s bedside.

It seemed so wrong to leave him when in fact, it was in this moment that he needed us most.

For the next eight days Ira lived on the machine that our surgeon described as “a human without a personality.” The machine drew Ira’s blood out of his body. It then acted as Ira’s lungs and heart. Then it pumped Ira’s blood back into his body. Over the next eight days we couldn’t touch Ira and were instructed to be quiet around him. For eight days, not only was a nurse attending to Ira but also an ECMO specialist. For eight days, we waited.

It was also during these eight days that I had two conversations with two different doctors in which they both communicated doubt as to Ira’s prognosis. I will never, never, forget the faces of those doctors when they spoke those words. These doctors were compassionate. They were sincere in that they didn’t want to have to say what they were saying. They grieved the words they were speaking. Meanwhile, I felt like I was being punched in the gut over and over and over again. It hurt. Even as I type this I feel just a bit of that pain again.

But here we are. A year and a day later Ira is sleeping in his bed, in his home. Lord, grant him peace.

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A Year Ago Today, Part Two

A year ago today, Ira was born into this world. Before I recap what I remember from that day let me first say that Laura and I keep saying over and over this morning, “Can you believe it’s been a year?” We’re a little stunned today. A little emotional. There were many times this past year that we didn’t think we would make it to this day with Ira.

At this point last year, I turned over the blogging responsibility to my friend and colleague, Jason. He did a great job of keeping everyone up to speed this time last year. For the details of the day, go back and read this post and others on April 21, 2005.
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My memory is that the action started around 4 a.m. The doctors came to remind us of what the birthing process would be like. We knew this was not going to be the kind of birth we wanted. With Sophia Laura worked hard to have her without meds of any kind (finally, after 14 hours of intense labor, she got a little relief – then 14 hours later, Sophia popped out). We had a midwife instead of a doctor for Sophia’s birth. Not this time around and when the doctors came in at 4 a.m. the realization of our situation came to life. This birth was scripted from the beginning and dictated by medicine.

They started the patosin (sp?) at 4 a.m. and later in the morning Laura got an epidural. Several friends and family trickled in and out of the room that morning but then were kicked out when the doctors broke Laura’s water at 10 a.m. She labored for some time but it was evident that this would not take 28 hours as it did with Sophia. Five hours and 20 minutes later Ira was born at 3:20 PM.

We thought we would get to take a good look at him before the three doctors standing by whisked him away. But they wasted no time. As soon as he came out and as soon as they cut the cord, the three docs took him and rushed him to the transition room. I remember the look on Laura’s face. She was exhausted but also heartbroken that she didn’t get to take a good look at Ira. We were both in shock.

I went out to the waiting room where many friends and family waited. I announced Ira’s birth and then broke down in my mom’s arms. There wasn’t much more to say.

An hour later they allowed Laura and I into the transition room. Ira didn’t look good. He was not stable. One of our hero’s, Dr. Wang, was working his magic trying anything to stabilize Ira. They allowed us in there for only a few minutes. We couldn’t touch Ira. I felt limp all over.

They moved him to the NICU floor after a couple of hours. It was then that they decided to put Ira on the oscillator. We were warned about what the oscillator does to a baby. It’s a very intense ventilation machine that makes a baby’s body shake profusely. The next time we saw Ira he was on that machine and sure enough, his body was shaking.

Laura was moved to another floor. The nurses there were a little annoyed because we spent our time on the NICU floor. They needed to do all their post-birthing work on Laura but she was never there. We were with Ira.

We finally did get back to Laura’s room that Thursday night. Ira was still not stable. It would be the first of many nights that we would cry ourselves to sleep…

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A Year Ago Today, Part One

Over the next three days, I’m going to – to the best of my ability – recall the days surrounding Ira’s birth and his actual birthday.
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Because Ira stopped taking in any of Laura’s fluids in utero, Laura’s amniotic fluid was high. Dangerously high. Ira wasn’t supposed to be born until early May but Laura’s high-risk pregnancy doc said Laura needed to be induced early. Ira was to be born on April 20 but then our doc decided that all of Ira’s necessary docs would be in place on April 21. So the plan was to go in on the night of April 20, get settled in and have Ira on April 21.

Before we went in on the night of April 20, there was much to be done. I needed to get some last minute laundry done and run a couple of errands. I went upstairs to start the laundry. In order to speed the process of getting the washer’s water hot, I turned on the kitchen sink faucet. After I got the laundry started, I needed to hop in the car and run a couple of places and pick up a couple of things. The car wouldn’t start. If finally did but it was laboring. Scrap running errands. Dad and I took the car to the shop and spent most of our morning there. On the way back from the shop, I got a call.

“Um, Joe, the brownstone is flooding. It’s coming from upstairs.”

It was at that moment that I realized I never turned the kitchen sink faucet off. And the plug was in the drain. I flooded the brownstone. It was turned on for hours. I felt horrible. Our landlords were more than gracious. Jack put his hand on my shoulder and said, “You’ve got enough to think about today. This is nothing. We got it under control.”

The day was not at all going as planned. I wanted it to be a non-stressful day for Laura but with the car and the flooding, um, well, let’s just say I was proving to be quite incompetent as a husband.

Later that afternoon we got loaded up and took Sophia to Amy’s house. Amy kept Sophia for a couple of days and Sophia loved every minute of it. While we were glad that Sophia was in good hands, we so desperately needed her smile and playful spirit. We cried when we left her there.

We headed over to where our family was staying. Brothers and sisters, moms and dads. They were all here staying in a hotel near the hospital. We went and ate a big meal with them. Upon leaving them that night, we all had a good cry as we all thought about the unknown of the next couple of days.

Laura and I checked in at the hospital at 8 PM. Laura was not laboring at all. They gave her an IV and decided to let her sleep. I too laid down. As I peered out of the window onto the Manhattan skyline where so many people were dreaming of the future, I too was wondering what the future held for us, for Ira…

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Christmas in April

Sister helping me out
Originally uploaded by joechays.

Ira was taken by ambulance to the nearest emergency room on December 24. He never got a chance to open his X-mas presents. It never seemed right for us to open them up after he left. So they’ve sat in the corner of the living room unopened for the past four months.

Today, Ira came home and got to open his Christmas presents. To say that we are elated to have him home is a gross understatement.

Every so often Sophia goes over to Ira and says, “You’re home!”

He is indeed and this little family in this large city couldn’t be happier!

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Happy Easter?

With Easter comes hope and the promise of new life.

This morning I popped down to the NICU floor of the hospital. Parents, grandparents and friends were huddled around small cribs. Some looked tired. Some looked nervous. Some looked pissed off. Some of those parents were simply expressionless. The only difference on the PICU floor was that the beds were bigger but the same expressions could be seen: tired, nervous, pissed off…

It’s hard to feel the joy of Easter in the hospital. It’s hard to comprehend hope when your daughter is back in the PICU for the fourth time in two years as is the case for one of the mothers near Ira’s room. It’s hard to comprehend the promise of new life when your newborn is hooked up to machines bigger than the nursery that awaits them at home.

We want hope now. We want new life now. Not in the future. Not in the age to come. Now. Is it too much to ask? Is it too selfish a request?

And yet our requests for the immediate are not met with the replies we desire. And so while we’re dissatisfied with God is good all the time kind of theology, those of us who have stared death in the eyes now understand Easter like never before. A glimmer of hope and the promise of new life make their home in us and in our kids.
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Today, we were able to take Ira out to the garden. We hid eggs so that Sophia could hunt them. It was a good time and a bit overwhelming. What you don’t see in this picture is Ira’s ventilation machine and pulse-ox. ugh! What you do see is Ira wearing his brand new Yankees hat.

the sun is bright
Originally uploaded by joechays.

The only reason Ira’s still in the hospital is because of Medicaid. We’re waiting for the paperwork to go through so that we can get our nursing in place and get Ira home. Paperwork. Yep, that’s what’s keeping Ira in the hospital.

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