Collapsed

Ira's left lung collapsed yesterday. This is one of the perils of being on the ventilator for too long. Just as too much air will burst a balloon, too much air can burst a lung. And it did with Ira. They put in a chest tube yesterday morning to rid the chest of excess air. It immediately helped Ira's CO2 output and his oxygenation. By the time I got to the hospital last night, his CO2 was back up and his oxygen back down. They did a chest x-ray to see if the chest tube was where it needed to be. It wasn't. They woke me at 1 a.m. and kicked me out to put in another chest tube. (Not sure why they didn't take out the first one?) His levels are good.

The hope is that the lung will heal itself - they usually do - and then inflate again. This process takes about a week to resolve. So not only is Ira fighting the RSV but a collapsed lung as well.

The bit of good news in all this - if there is any - is that Ira's left lung is the weakest and smallest of the two. However, it was still useful and Ira could use any help from any source be it small or large, weak or strong.

Sustained

We took Ira to LICH on Christmas Eve. He immediately tested positive for RSV. When LICH sent the official results of Ira's blood test, the RSV test came back negative. So PICU did their own test. First, negative. Then after a while, positive. Ugh.

Yesterday - the "Where is your smile?" day - was hard because Ira was not responding to any of the medical measures that were taken. His CO2 numbers were way too high. It didn't take long for the room to be filled with doctors and nurses adding meds, turning up oxygen and respirations, etc. Normal is 60 or below for someone like Ira. Ira's numbers were at 90+. At one point a nurse said to a doc, "I can't even see his chest moving." They finally got the CO2 down around 70 and they were happy about that.

Because Ira is sedated and intentionally paralyzed fluids collect in his body. It's common for RSV babies to collect their fluids in their heads. Ira is literally unrecognizable. It's really hard to see him like that.

My sister asked me the other day if we were back where we were in the first week of Ira's life. In other words, "Are we back in the position of not knowing whether Ira is going to live or die?" The answer to that is "no". While RSV is a beast and while it does claim lives, I've seen the fight in my boy and know what he is capable of. And the doctors have not given me any indication that we are to the point of worrying about life or death.

So while Laura and I are extremely saddened that Ira is having to endure this and while it pains us to see him like he is we have not at all lost hope. Once again, thanks for your prayers and thoughts. We are aware that our sustenance comes from those of you caring for us.

Where's Your Smile?

Today was one of those days. One of those days when at several different times doctors and nurses surrounded Ira's bed trying to help him over whatever hump he was up against. One of those days where our health care professionals were at a loss. One of those days when tests came back negative and then positive and then negative and then positive. One of those days when old doctors and nurses from the NICU stopped by with saddened expressions. One of those days where it was hard to look at Ira's disfigured face that was oozing fluids from all possible exits. Today was one of those days.

I came home this evening to be with Sophia. As we sat on her floor playing she finally asked, "Dad, where is your smile?"

Laura here.

I just spent the last 30 hours at Ira's bedside. He is on his tummy and has been for two days. He is so sedated he hasn't moved a muscle since Sunday morning. His face is so swollen he is unrecognizable. I am nervous. I have that feeling in my stomach and running through my blood like I get when I am about to perform in front of a crowd. But the performance never comes. And the nervous adrenaline won't subside.

He had a fairly peaceful night but I woke up to the nurse informing me that his CO2 levels and heartrate were high. His hands and feet were freezing. Adrenaline rush. She made some speculations and tried the things she knew to try to get them to come down. Eventually they came down some. And then they went back up. Up and down. Today the doctor said that Ira would probably get worse before he got better. He said he hoped it would take days rather than weeks but he couldn't say for sure. No one can say anything for sure. Nobody really knows if Ira will pull out of this one. One thing we know for sure is that if anyone can pull out of this its Ira. So, we hope, we pray, we wait...

Oh the waiting. So much waiting in 2005. I am tired of waiting.
I am home with Sophia tonight. Joe will spend the night with Ira.
I miss him already. I love you Ira.
Goodnight.

what to say?

It's Christmas day. Laura and I are sitting in Ira's PICU room at Children's. At 11 PM on Christams Eve Ira stopped breathing. It was only for five seconds but his body froze and his eyes glazed over. He's now stable after having been intubated. He's on Nitric Oxide. He doesn't look himself. He's tested positive for an RSV (google it) which is not a good thing for a baby like Ira. We'll keep you updated.

UPDATE:

Laura and I came home tonight to open presents with Sophia and to get some rest. Laura's parents, Harvey and Kay, are keeping watch of a heavily sedated Ira. Sophia asked three different times where Ira is. In her two year old way she is expressing what Laura and I feel: we are not whole without Ira.

According to the doc, Ira is critically stable. The only way to treat the RSV Ira has is by giving support, hence the intubation and Nitric Oxide. In other words, it's up to Ira to beat this thing. Based upon his history, I think he has the strength to do so.

Laura's family, who's in town for X-mas, has been wonderful and helpful. It's almost 8 PM and I think Laura and I will be laying our heads down very soon.


UPDATE:

Monday morning. Ira's doing okay. He's on 50% oxygen on the vent and still on Nitric Oxide. He's completely knocked out and has been since he was admitted to the emergency room. He's on his stomach which is common for RSV patients as I guess it helps them breathe better. He's getting blood - nothing new for Ira - because his hemotocrite (sp?) is low. He's getting several antibiotics and is being sustained with fluids. His face is still swollen and puffy. Overall, hes doing much better today than yesterday. As the doc says, it's gonna be slow and steady from this point forward.

I Meant "Shoot!"

Ira's home. Once Ira stabilized, I knew it was time to get home. The PICU docs didn't feel the same way. They were worried that Ira's throwing up and his loose stools would result in dehydration. They wanted him to stay in the hospital to see if Ira could tolerate his feeds. What I couldn't get through to them was that Ira always has a little bit of reflux. I lobbied hard and got our other docs on the case. Ira's pulmonologist, surgeon and pulmonary hypertension doc all cleared Ira to go home. So it happened. Ira and I got home about 7:30 PM after being in traffic for a little more than two hours. We're glad to be home. Thanks for all your prayers.

SHIT!

Sorry for the title but that's about the only word I can come up with at the moment. I rode with Ira in the back of an ambulance last night at 2 a.m. His sats were bad and he was having a hard time breathing. He's been admitted to the PICU of the Brooklyn Hospital and is waiting for a transport team to take him to Children's where he was in NICU. He'll be in their PICU upon admission. I'm home now with Sophia who is sick and Laura is with Ira. He's in stable condition but he's not himself.

It should take us about 10 minutes to get to Brooklyn Hospital but it took Laura 30 minutes this morning. I don't even want to guess how long it will take the transport team to get Ira into Manhattan. Merry Christmas, MTA!

I'm hoping they'll keep Ira 24-48 hours, get him stabilized and send us home. Your thoughts and prayers are appreciated.

UPDATE at 5 PM

Ira's been transported successfully to Children's in Manhattan. He was admitted into the PICU. Because he's stable they are now waiting for availability of a bed on the regular pediatric floor. This is a good thing.

He'll go through a battery of tests tomorrow with his regular docs to get an idea of what is going on. He's still having periods where his sats aren't good and it's evident that he's in pain but for the most part, he's stable.

Updates with a Smile

In my September 14 post I talked about being a part of the NICU club. What I didn't realize was that the club continues to exist well past the NICU experience. And I'm glad that it does. Below are some of Ira's CDH friends. Okay, I'll admit it, I call them Ira's girlfriends.
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Alix is the youngest of the crew...and the healthiest. She eats well. She breathes well. And that's all that matters! Her parents kept us in stitches as they relayed stories of getting in trouble by the head nurse of the NICU. Alix's dad and I are eerily similiar in our tastes. Go Duke!


Alix
Originally uploaded by joechays.

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Lily is the oldest of the crew. She was born five weeks before Ira and left the hospital about five weeks before Ira. Her journey was very similar to Ira's journey. Lily's mom used to say that when we parents went home at night, the babies got out of the cribs and played. It was nice to have that image in my head as I attempted to sleep at night.


Lily
Originally uploaded by joechays.

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Ava was born two days after Ira. Because Ava and Ira were new to the NICU we parents often compared notes. Ava's mom and Laura shared pumping woes with each other while dad and I talked baseball. We shared in each other's exhaustion. We didn't have to say much to each other to know exactly how the other was feeling.


Ava
Originally uploaded by joechays.

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With the exception of Alix who is doing wonderfully, all our children still have issues. You can see that Lily is still in need of oxygen and Ava is fighting feeding issues. But no matter what the case, we are all overwhelmed by the examples of strength our children have provided us.

Families of Alix, Lily and Ava, may your holiday season be filled with joy as you spend it with Ira's girlfri...I mean, your precious, precious girls.

Stuck Like Chuck

They did it. The MTA (subways and busses) went on strike today. And in so doing, they closed down the city. Over 7 million people use NYC's transit system a day so you can imagine the inconvenience this is for us.

They aren't letting cars in the city (we Brooklyn folk call Manhattan "the city") unless they have four people in them. It's chaos. I'm fortunate to have a job where I can stay home and get work done. But most New Yorkers are not so fortunate.

I want to sympathize with the MTA but their average worker (if a subway operator - $62,400) makes more than a New York City school teacher ($43,000 with a Masters degree) so that makes it hard. I know the negotiations are much more nuanced than this but the MTA has just effectively shut down NYC five days before Christmas. It's hard not to be mad about that.

Who Will It Be?

My friend, Anthony Lewis, just made his decision about where he'll play college ball. When I talked with Anthony's mom this morning I asked her, "Are you guys excited or what?" She responded, "we're relieved."

She went on to describe what it's been like for 17-year-old Anthony over the past couple of years as college football programs have vied for his attention and commitment. I can't imagine what kind of pressure Anthony faced but I hope he can rest easy this Christmas knowing coaches and internet recruiting hounds won't be calling every day of the week.

Congrats, Anthony. May you experience peace in your decision and may you be blessed in it. Oh, and one more thing: WHOOP!

Ira, Sophia and the MTA

After such a serious post yesterday I had to post these pics of my kids. I will expound upon my view of the death penalty from a theological standpoint in the days to come. It's a serious topic that those of us who are Christians should have much to say.

On another note, we commuters here in NYC are glad the MTA (subways and buses) did not strike. They were threatening and still are. It was an odd thing this morning in the gym when all of us stopped our workouts to crowd around the TV in order to hear the latest news concerning the possible strike. Should the MTA do it, it would paralyze over 7 million people who use the transit system each day.

So without further ado, your Friday viewing pleasure:


Ira being silly
Originally uploaded by joechays.

I'm important
Originally uploaded by joechays.

How the USA is like Iraq and Iran...

This past November, Kenneth Boyd became the 1,000th person to be executed in the USA. It baffles me that the loudest supporters of the death penalty are Christians. There are tons of sociological reasons why the death penalty is wrong not to mention theological reasons. A few sociological reasons:

1) Capital punishment does not deter crime. Many studies have been done and they continue to show that the death penalty fails to deter people from committing crimes.

2) An execution cost more for taxpayers than life in prison without parole. How much more? Each death penalty case costs 1.25 million dollars more than an average life without parole case.

3) Race is an important factor in determining who is sentenced to die. In 1990 a report from the General Accounting Office concluded that "in 82 percent of the studies [reviewed], race of the victim was found to influence the likelihood of being charged with capital murder or receiving the death penalty, i.e. those who murdered whites were more likely to be sentenced to death than those who murdered blacks."

3) We are unable to prevent accidental execution of innocent people. Since the reinstatement of the death penalty, 119 men/women have been released from Death Row. Some just minutes before their execution. Imagine how many have died that were innocent.

4) USA is in good company with notorious human rights abusers. The vast majority of countries in Western Europe, North America and South America - more than 117 nations worldwide - have abandoned capital punishment in law or in practice. The United States remains in the same company as Iraq, Iran and China as one of the major advocates and users of capital punishment.

Wow, huh? So why is it that some of the most adamantnt supporters of the death penalty is the Christian right? Why, after the words of Jesus in Matthew 6, would Christians continue to rally behind an archaic notion of an eye for eye? Are you pro-life or not?

Wanna explore the issue a bit more? Go here to learn more and join the effort in ending a practice that goes against the will of God.

Person of the Year?

My friend, Chris Ewing, has an interesting post over at his blog, The Counterpoint. I urge you to check it out. After you get through reading his post, come back here and leave comments on what you think about it.

Thanks, Chris, for honoring Ira as you have.

Random News and Notes

Christmas Vacation is by far my favorite holiday season movie.

Clark: Since this is Aunt Bethany's 80th Christmas, I think she should lead us in the saying of Grace.
Aunt Bethany: What dear?
Nora: Grace!
Aunt Bethany: Grace? She passed away thirty years ago.
Uncle Lewis: They want you to say grace. The BLESSING!
Aunt Bethany: I pledge allegiance to the flag of the United States of America and to the republic for which it stands, one nation, under God, indivisible, with liberty and justice for all.
Clark: Amen.
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A Christmas Together by John Denver and The Muppets is by far my favorite holiday season album. From Ms. Piggy's rendition of Christmas is Coming:

Ms. Piggy: Scooter?
Scooter: Yes Ma'am
Ms. Piggy: Gonzo?
Gonzo: Check
Ms. Piggy: Robin?
Robin: Yes Ms. Piggy.
Ms. Piggy: This is what we are going to sing. Ahem.
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If you are tired of the traditional holiday flicks then do yourself a favor and add Mad Hot Ballroom to your Netflix queue along with March of the Penguins and watch them with your family this season.

Both documentaries are inspiring and uplifting. In Mad Hot Ballroom you'll witness how a dance competition in New York City can inspire fifth graders that otherwise would be written off by society. And in March of the Penguins you'll be moved by the selflessness of the Emperor penguin.
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3rd Sunday of Advent
Theme: Joy

In the midst of waiting for Christ to come, we are reminded that joy is given to us now. Tonight, at Christ's Church for Brooklyn, we all shared moments in our lives when we have experienced pure, unfettered joy. It was incredible to hear the stories of others and to see their faces light up as they remembered joyful events.
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Ira is still sick. I think he is getting better but he's still congested and having a hard time breathing. His cough is still deep but not as often. To top things off, I think he's getting more teeth. (Have I mentioned that he has two teeth?) Poor kid can't catch a break. Thank you for your thoughts and prayers over the weekend.

A Year Ago Today

It was a year ago today that Laura and I innocently walked into the exam room for a routine twenty-week sonogram. It was a year ago today that we heard the dreaded words from the sonographer's mouth, "excuse me while I go get the doctor." It was a year ago today that we began a journey that has forever changed us. So where do we stand today, a year later? I'll let Laura speak for the both of us:

I do not believe Ira was healed because of my prayers although I do believe God heard them.

Nor do I believe he has survived because of all the other people praying for him although I believe their prayers gave Joe and I encouragement and strength to carry on. Their prayers also moved them to provide us with food, donate money and support us financially, send care-packages and cards and so many other acts of love and kindness.

I also do not believe his being here today is a result of a miracle per se otherwise he wouldn't have had to suffer all that he did. I do believe God has given humankind a magnificent organ called a brain that allowed the doctors to perform miraculous surgeries. In that sense Ira is a "miracle baby."

The anger I have carried and brewed for nearly a year is beginning to simmer. I am so happy to have Ira home. However, God is not off the hook. I can not stop thinking about all the babies in the NICU: those that will never go home and those that are yet to be born that may be sick and have to endure so much. I am slowly being able to read my Bible again, pray and sing. This is all part of the healing process. I must trust that God loves me, Ira, my family, despite the injustices I see all around me. I will forever have a very tender spot in my heart for parents with sick and deceased children. There is no tying a pretty bow around this part of my life and moving on. It will be a part of every day that I have remaining and it will color the decisions I make and the way I live the rest of my days. I do not thank God for this leg of the journey but I do thank God for God's faithfulness on it.

Ugh

We're about to take Ira to his pediatrician because we think Ira has a cold. He's coughing, sneezing and his lung is not sounding so great.

UPDATE: Ira's pediatrician put Ira on a nebulizer. This morning she called Ira's pulmonologist who immediately put Ira on a steroid. (If you're keeping track, yes, Ira is now on Viagra and 'Roids.) If it's not cleared up after the weekend we are to go in and get a chest x-ray and the works. I've been walking in fear all day. I so don't want him back in the hospital.

A&P

Sophia, Laura and I were laying on the bed yesterday talking and playing. Out of the blue Sophia began this conversation:

"Daddy, are you a boy?"
"Yes, I am," I replied.
"Mommy, are you a girl like me?"
"Yes," Laura said.

I saw the teaching moment unfold and continued the dialogue:

"Sophia. Boys have ..."
"Penis!" she exclaimed.
"That's right. And girls have ..."
"Toots!" she proudly announced.

And then she doubled over in laughter. As did we.

Wise

Ira had an appointment with the neonatology department at Children's this past Friday. We couldn't find a convenient sitter for Sophia so she went with us. Laura had the following exchange with Sophia on the way to the hospital:

Sophia: Where are we going?
Laura: To see Ira's doctor at the hospital.
Sophia: Will Ira get to come home with us when we leave the hospital?
Laura: Yes, Ira will get to come home with us after we're done. I promise.
Sophia: Okay.

She is much more perceptive, much wiser than we know. And she kinda likes her baby brother.

Ira's First Subway Ride

Ira's first subway ride was during the Thanksgiving holiday season. We all went to Grand Central Terminal for the lazer show and train exhibit. Ira did wonderfully. And no, I didn't let Ira touch the germ infested poles on the subway.


First Subway Ride
Originally uploaded by joechays.