Some of you remember singing the devotional song Jesus is My Best Friend or the classic 19th century hymn What a Friend We Have in Jesus. I sang these songs many times with eyes closed and hands raised in adoration. But the truth is, I don’t know Jesus in that kind of way. I don’t know him in the “hey, buddy!” kind of way. So if I’m honest I’ll admit to you that when singing those songs with my eyes closed and hands raised it was as if I was searching for that friendly relationship that seemed so real for others.

But over the years I’ve come to the realization and understanding that friendship is not a good description of my relationship with God…and I’m okay with that.

When I think of my friends here on earth I think of my college buddies with whom I’m still in contact. We met at A&M and had much in common. We all loved sports. We loved to joke around. We didn’t take life too seriously. I was comfortable around them and they me. While we pushed each other it was always done gently never with the intention to hurt the other. And to this day when we all get together as we did the past January these elements of friendship are still at the core of our relationships. As all of us have entered into our thirty-somethings with wives and kids we still talk sports, joke around, take life a little less serious. It’s comfortable. It’s known. It’s easy.

As I read through the Bible, as I read through history and as I continue to live life I find that God is serious. He is serious about his work of redemption in this world. God is serious about me only loving him and no other. He is serious about bringing about his kingdom. And he takes it so seriously that he doesn’t mind pushing me, and pushing me hard! He knows it will hurt and he knows it will cost much and he knows it will be uncomfortable and he knows it will lead into the unknown. But he does it anyway.

So when I think about these elements of God I’m not so sure I want to be his friend. No wonder the prophets of the Old Testament didn’t want their task of prophesying. No wonder the disciples of the New Testament kept getting it wrong. God doesn’t play around.

That’s not to say that God doesn’t want me to clown around or make fake fart noises with my friends. He allows me to play around in that sense but when it comes to his kingdom work here on this earth, he isn’t too interested in who won the NBA championship or whether A&M should hype McNeal as next year’s Heisman.

The questions for me become these: Do I really want to be involved with a God who pushes so hard? Do I really want to follow this God that inevitably will call for my comfort to be made uncomfortable, my ease to be made hard, my known to be made unknown? And finally, should I choose to follow, what language shall I borrow to describe it, to describe my journey with God? Because language of friendship just doesn’t do it for me.

Today was a better day. Ira greeted his day nurse with a serene silence. She was happy for this greeting. He gladly took 30 cc of milk via bottle and even lasted an hour off the CPAP while aided by a nasal cannula. The feeding and the nasal cannula happened while Laura was on her way home to make the switch with me so neither of us got to experience it but Ira’s nurse called home (a rarity) and said, “I’ve got good news!” And it was good news. He vomited a couple of times today but wasn’t the Irritable Ira we experienced over the last two days.

Tuesday was Ira's second hard day in a row. Ira is not happy. When he gets worked up, we can't calm him down. We aren't sure if he is in pain, hungry, or just mad? He is projectile vomiting often these days which can't feel good on his throat or tummy. And our boy cries loudly. He's getting a reputation and I'm pretty sure nurses aren't too excited to be assigned to him. We took a step back on the feeding by compressing the feedings to an hour and a half instead of an hour. His nippling isn't going good either. I left the hospital last night at around 8:30 PM after having spent about 45 minutes of trying to calm him down. Those pictures I posted a couple of days ago of a peaceful, contented Ira are not the Ira we have known the past two days.

Christ's Church for Brooklyn, our church plant, will take part in the Worship in the Spirit of Justice service in Washington D.C. on July 10. We will worship near the White House with other Christians from around the nation. Nope, we're not interesting in a constitutional amendment on homosexuality or the overturning of Roe v Wade but we will be calling on President Bush "to provide moral leadership regarding Darfur. We will recall President Clinton’s words about our failure to intervene in Rwanda eleven years ago; we will challenge President Bush not to let the genocide in Darfur continue on his watch." Are you even aware of what's happening in the Darfur region of Sudan? I wasn't until a while ago so check out this site for what's going on over there. If we are going to say that Sadaam was bad for Iraq and its people then we better be ready to step up and say something about the hundreds of thousands that are being killed in Darfur.
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Can anyone stop Mo Rivera. He's the closer for the New York Yankees and while the Yanks have struggled this season, Mo has not. His ERA is 0.91. Teams have not scored a run on him in his last 18 appearances. There is nothing like him coming out of the bullpen in the top of the ninth at Yankee Stadium. The crowd goes wild at the sound of Metallica's Enter the Sandman.
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Laura just finished her first William Faulkner book. She is partaking in Oprah's Book Club this summer. They are reading three Faulkner books. Laura just finished the first, As I Lay Dying. An exert from this magnificent and monumental work:

In a strange room you must empty yourself for sleep. And before you are emptied for sleep, what are you. And when you are emptied for sleep, you are not. And when you are filled with sleep, you never were. I dont know what I am. I dont know if I am or not.

A quick update on Ira: he started his feedings this past week. (Scroll down a bit to see Mom and Sophia feeding him his bottle.) We started by giving him one bottle a day with 5 cc of milk. Keep in mind that 30 cc is an ounce so 5 isn't much. He did great last week and the consultant said Ira should start receiving two feedings a day. The doctor checked off on it and so we started giving him a bottle twice a day starting this past Friday. Most of his feedings have been good. He still gets most of his milk via the tube in the nose that goes directly to his stomach.

They started supplementing his tube milk with formula because Ira wasn't gaining weight. If he were at home he would nurse when he was hungry and would eat until full. However, at the hospital he is much more regulated and not getting as much as he needs. Therefore, he needs more calories. That started that supplement on Friday and guess what? He started throwing up. Ugh.

In spite of that, his weekend was great. He slept hard and when he was awake he was peaceful. But today, well, today was a different story.

I have a huge headache because Ira was not in a good mood. I wanted to throw him over my shoulder and pat his back. I wanted to take him for a walk. I wanted to try anything and everything to help him but I couldn't. It was so frustrating. We couldn't figure out what was wrong but he was irritable all afternoon and evening.

This is the same old story: a couple of good days followed by a really hard day. The thing that sucks is that the good days were this weekend when his doctors were all at home. Today, they got to see the "I'm Pissed Off Ira" and I'm pretty sure they think this kid will never get well.

We checked into the Sheraton on Friday evening after having spent the morning and afternoon with Ira. We immediately got ready for our first big date. Laura looked radiant. She still, after 9 years of knowing her, has that ability to knock me off my feet. She looked hot!

We dined at Del Frisco's on Friday night. We began with Dinner Salads and then both enjoyed the 8 oz Filet Mignon with Potatoes Au Gratin and Asparagus. We attempted our hand at wine by having a glass of Cabernet Sauvignon out of California. Sorry, I’m not a wine connoisseur so I’m unsure of the actual name of the wine. We finished off our meal with Cheesecake and a Chocolate Souffle.

We then scored tix to Chicago. The woman who played Roxi lived up to the hype of her reviews. She was magnificent and sitting on the fifth row wasn’t so bad either.

We slept in on Saturday morning. Which means for us that we got to sleep until 7 a.m. It was incredible. We went to the hospital and hung with Ira that morning and afternoon.

We left the hospital and went to the spa where I was treated to a deep tissue massage and Laura a facial. I left drunk with relaxation and Laura left with a glowing, hydrated face.

We were unable to secure reservations at Babbo so we ate at ’Cesca on Saturday night. We both began with Mixed Greens salads that were much too huge. But this didn’t stop us from putting our salads away as if we had just come off a deserted island. Laura followed that with the Pasta “al Forno”, Meat Ragu & Crema di Parmigiano and I enjoyed the Grilled Lamb Loin Chop & Lamb Sausage with Cauliflower Stew & Mint.

We didn’t hang around for their dessert as we were craving some good ‘ol ice cream at Stone Cold Creamery.

We slept hard, ate good and learned how to like each other all over again. To say the least, the weekend was wonderful.

Thanks, Yael and Bryan and their friends and family, for making this happen. We are grateful.

Hi, Mom

Hi, Mom

what's up?

IMG_0762

This Broviac line kinda freaks me out. The doctor asked me questions about our lifestyle at home because the last thing Ira needs is respiratory infection of any kind. He first asked if we had kids. I told him about Sophia. He grimaced and asked if Sophia goes to daycare. I said "no" but told him that we hope to get her in one soon. He grimaced again and said we'll talk about that later. He then asked if we had people in and out of our home. I told him of our Sunday nights and how we have 15-20 people over and, yep you guessed it, he grimaced. So according to the grimaces of this doctor, we have to quarantine our family. Heck, we'll just be the "bubble family" and hopefully Seinfeld will do an episode about us.
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On another note, I think I can safely say that Laura and I are on each other's last nerve! I'm pretty sure that neither of us likes the other at the moment. Everything is so difficult these days that at the end of the day someone needs to be blamed for what we endure and so we take it out on each other.

Don't worry though. We aren't rushing out to find the nearest divorce lawyer. It's not come to that and it won't.

There are times when we are good about taking the heat from each other. Either Laura is aware that I need to be mad and she allows that process to happen or I am aware that Laura is frustrated and I allow that process to happen. But then there are times when our reservoir of grace seems empty. My anger is met with defensiveness or her frustration is met with hostility. It's been like that over the last couple of days.

We seem to be coming out of this recent funk slowly but surely. We are both more than excited about this "weekend getaway" that I blogged about yesterday. And we are hoping that it will allow our reservoirs of grace to be refilled. And maybe, just maybe by the end of the weekend we’ll like each other again.

I usually don't read forwarded, non-personal e-mail. In fact, I usually don't even open them. However, I was bored this morning and because the friend who sent it rarely ever sends me e-mail (Katy H!), I opened it up and read it. Here is what I found:

You're from Texas if...........
1. You can properly pronounce Corsicana, Palestine, Decatur, Wichita Falls, San Antonio, Mexia, Waco, and Amarillo.
2. A tornado warning siren is your signal to go out in the yard and look for a funnel.
3. Your idea of a traffic jam is ten cars waiting to pass a tractor on the highway.
4. You know that the true value of a parking space is not determined by the distance to the door, but by the availability of shade.
5. You measure distance in minutes.
6. You go to the lake because you think it is like going to the ocean.
7. You know cowpies are not made of beef.
8. Someone you know has used a football schedule to plan their wedding date.
9. You aren't surprised to find movie rentals, ammunition, and bait all in the same store.
10. You know everything goes better with Ranch.
Finally, you are 100% Texan if you have ever heard this conversation:
"You wanna coke?"
"Yeah."
"What kind?"
"Dr. Pepper."

I miss home.

"TGIF!" That phrase for many is a welcomed relief from the craziness and chaos that is work. Friday nights are much more relaxing than Monday nights. Saturdays are about what you want to do when Wednesdays are about what your boss wants you to do. More times than not, weekends are yours.

Laura and I haven't had that sensation for a couple of months. Our Fridays are no different from Mondays and our Saturdays are no different from Wednesdays. We are required to perform the same functions every day: be with Ira, take care of Sophia and attempt to get work done for the church plant. And so Friday night has lost its edge, its fun. Saturdays, the "catch up" day, are no longer used to play around in the city. Besides a few functions during the week our days aren't that different from each other.

But not this weekend! You might remember the comment my upstairs neighbor, Yael, posted on June 11. She asked the following question of us and anyone else on blog land:

"what do you do when you're afraid you'll bother someone, in crisis, by asking too much if they need help? should one err on the side of more or less?"

I never responded to that question. So one day Laura came home to find an envelop at our doorstep. Inside was a note that read as follows:

Dear Joe and Laura,

We reached out to our closest friends and family (many who have been following your story with us), and we are very excited to present to you a "weekend away in NYC". We know that your daily commute is just one of the many, many life changes and challenges as of late. We are hoping to alleviate that for just one weekend. Through the generosity of those closest to us, we are so happy to give you:

• 2 weekend nights in the Sheraton New York Hotel and Towers on the Upper West Side
• 2 nice dinners out in the city -- Del Frisco's Double Eagle Steak House and Babbo
• Massage at your hotel
• extra for subway and cabs

Pick a weekend as soon as you want, we're ready! We will book everything. We also would love to watch Sophia and Jersey [our dog] for the weekend. Or of course, it if is better for you...pick a weekend when you have someone who can care for Sophia (but we swear we can do it too!).

We are grateful to have you as neighbors, so enriched by having you in our lives. We know 116 Hoyt St. is missing just one thing, Ira. And we look forward to his homecoming.

Love Bryan & Yael

Laura and I were (and still are) blown away by this generosity. Bryan and Yael had about 30 of their friends and family members respond to their request. We haven't met most of these people but they felt compelled to give, to help. And Laura and I finally have a weekend to look forward to.

Thank you to Bryan and Yael and all their friends and family for this coming weekend. I'll be sure to report how the weekend goes.

A Belated Father's Day Greeting
(this was written on Father's Day)

I'm sitting by Ira's bed. I'm having a hard time having a "happy father's day"! I had no idea that fatherhood was this hard. That it cost this much in emotional currency. That I would be asked to put away selfish desires for the sake of my daughter or son. I had no idea what I was getting into.

Being a father to Sophia and Ira has changed everything for me. It's changed how I look at this world. It's changed how I love. It's changed my perspective on what's important and what's not important.

And because all this happening within me as I mature as a father it makes me appreciate you even more, dad. I'm beginning to see you have spent much in emotional currency on behalf of us, your kids. You have put away selfish desires for us. I can see how it has changed your outlook on the world. You have changed how you love. You have a healthy view of what's important and what's not. I love you. Thanks for being my dad.

Laura here...

Ira's surgury went well. In order to anestithize him, he had to be intubated back onto the ventilator. However the nurse hopes to extubate him some time during the night when the anesthesia wears off and he wakes up. What a day - three IVs, removal of the PICC line and a new broviac catheter. I'm tired. I can't imagine how he feels.

It's Tuesday at noon and I'm sitting by Ira's bed typing on the computer that I'm not supposed to be on. Rules are meant to be broken, right?

It's been a hard couple of days. We were told yesterday that Ira was scheduled for surgery on Wednesday to insert a Broviac catheter. This was news to us so we asked to see all the appropriate doctors. They came by one by one and we were able to clear up some of the confusion.

Today Ira's PICC line, which administers the Flolan, started giving him trouble. It didn't take long for Ira's bed to be surrounded by six or seven doctors and nurses trying to save the PICC line. The flow of the Flolan is essential and can't be interrupted. They were unable to save the PICC line so they tried several times to get a regular IV line. It took several sticks by several different people.

They are hoping that Ira will go in for surgery this afternoon for the insertion of the Broviac line.

Other Ira news: his first feeding on Monday went well. Our consultant is amazing. She's sweet, gentle and knows what she is doing. Ira took his whole 5 cc which isn't much when you consider that 30 cc is an ounce. But it's a start. Because he is going in for surgery today she put off his next feeding for a couple of days.

Please pray for Ira as he goes in for his fifth surgery. We'll let you know how it all goes.

And by the way, Ira is two months old today. Surgery, what a gift!

If Ira could speak, he would say...

My Daddy is the best Daddy in the whole world. He holds me so gently and knows just how to pat my chest to calm me down. He is always ready to share the Yankee scores from the night before (Jeter hit his first grandslam!) and tell me how much he loves me. Even though I have stuff all across my face, my Daddy can still find places to give me lots of kisses. He just loves to give me kisses. My Daddy has been by my bed every day of my life. He makes sure my mobile has batteries and that my nurse is on top of my oxygen. Plus, he is the best swaddle-er ever (sometimes I fling my arms and grab my CPAP - not good!) One of my favorite things my Daddy does is sing to me. He is always singing this song about how much Jesus loves me. He says Jesus loves me even more than he does. Wow, I am one lucky 8 week old. I love you Daddy.

(interpreted by his mommy)

The NICU physical therapist approached the surgical team to ask if she could start working with Ira. The surgeon responded by saying, "you do know that Ira de-sats when he has gas?" In other words, "this kid is still labile and you want to do physical therapy?" The PT pushed for it and the surgeon gave in. So Ira had his first session on Thursday. It was really no big deal as the therapist re-positioned Ira and moved his arms and legs around. And no, Ira did not de-sat.

One of our nurses approached the surgical team and asked if Ira could start nippling. We requested this a couple of weeks ago and the idea didn't go over so well. This time around the nurse, like the PT, pushed hard enough and got the okay. So Ira will attempt to nipple (taking a bottle) with the feeding specialist on Monday.

We wanted Ira to tolerate 28% on the CPAP by the end of this week and it happened. He stays on 28% continuously and sometimes rests on 25%.

The fits of pain that Ira was experiencing seem not to be as often these days. It's either because they figured out the dosages of meds or the Mylicon drops that he gets every so often.

In any event, we are taking small steps forward and for that we are thankful.

What to say about Ira? He slept most of the day on Tuesday. He still has moments of what we think is pain. When he is given Tylenol he seems to calm down a bit. His feedings are compressed to where he is getting 2 hours on and 1 hour off. They will continue to compress those feedings to a point where he eventually eats as a newborn does. He is doing well at around 28-29% on the CPAP but de-sats when he gets uncomfortable. He is still on Flolan and Viagra to treat his pulmonary hypertension.

The doctors tell us that they want to get him off the CPAP and on a bottle for feeding before they do anything with his meds. When they get him off the CPAP and when Ira starts to eat out of a bottle then they will reassess his meds. They are talking that it's likely Ira will go home on the Flolan. This is a big deal because Flolan can only be administered through a line while Viagra can be taken orally. They would do a surgical procedure on Ira to insert a Broviac catheter. That catheter would administer the Flolan. It is a bit more stable and less likely to get an infection. It's scary to think about but if that's the worst case scenario...

So I’m reading this book The Sparrow written by Mary Doria Russell. The main character is a priest named Emilio Sandoz. He makes friends with an older couple, Anne and George, who are agnostic. They and others make a trip to a planet where life is detected.

Another priest, Alan, has already died on the new-found planet and two other crew members are missing. The below is a portion of dialogue between the priest, Emilio, and the agnostic, Anne, as they sort through the missing of the two crew members:

“D.W. will never forgive himself if anything’s happened to those two.”

“They’ll be back.”

“What makes you so certain, hotshot?”

He spoke from his heart and from Deuteronomy. “ ‘You have seen with your own eyes what the Lord your God has done.’ ”

“I’ve seen what human beings can do--”

“You’ve seen what,” Emilio conceded, “but not why! That’s where God is, Anne. In the why of it—in the meaning.” He looked at Anne and understood the skepticism and the doubt. There had been so much joy, such a flowering within him… “All right,” he said, “try this: the poetry is in the why.”

“And if Sofia and Marc are lying in a heap of wreckages right now?” Anne demanded. “Where would God’s poetry be then? Where was the poetry in Alan’s death, Emilio?”

“God knows,” he said, and there was in his tone both an admission of defeat and a statement of faith.

“See, that’s where it falls apart for me!” Anne cried. “What sticks in my throat is that God gets the credit but never the blame. I just can’t swallow that kind of theological candy. Either God’s in charge or He’s not. What did you do when the babies died, Emilio?”

“I cried,” he admitted. “I think sometimes that God needs us to cry His tears.” There was a long silence. “And I tried to understand.”

“And now? Do you understand?” There was, almost, a note of pleading in her voice. If he told her he did, she’d have believed him. Anne wished that someone could explain this to her and if anyone she knew could understand such things, it might be Emilio Sandoz. “Can you find any poetry in babies dying now?”

“No,” he said at last.
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The baby across from Ira's room died last night.

America is one of the richest countries in the world. And yet we give less than 1% of our budget to help those countries in extreme poverty.

UK's Tony Blair is pushing Bush to change that at the G8 conference in Scotland this July. Blair is asking Bush to stand behind a formula that will forgive the debt of the world's poorest countries to international lenders.

You too can ask Bush to consider debt relief by signing a worthy pledge at one.org.
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Ira's day was okay. He spent the morning with Laura. He was awake much of the time and Laura held him for several hours. He of course fell asleep as soon as I got there and slept most of the afternoon and evening away. However, he was really fussy at different points and it was hard to calm him down. This is wearing me out.
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Laura saw Katie Couric several times this morning as The Today Show did their bit. The segment is on preemies and how well this particular NICU does with premature babies. Check it out on Thursday (I think) and you'll get to see what our NICU looks like.

There's Always Someone Cooler Than You

In Jr. High One Act Play I got the role every guy wanted: playing the boyfriend of Jennie Wells. Jennie was a year older than me and one of the finest (we said "finest" in those days) girls in school. I thought I was cool until I realized that outside of the play Jennie hardly knew who I was.

My sophomore year I sank a crucial three-pointer and made some clutch free throws to beat New Deal High School. I thought I was cool until I realized a couple of years later that my basketball skills were laughable compared to those of collegiate players.

Upon graduating from college I was accepted into graduate school. I thought I was cool until I sat down with a fellow graduate school classmate to study and realized that his ability to learn was much more advanced than mine.

The musical artist, Ben Folds, says it best on the track There's Always Someone Cooler Than You from his Sunny 16 EP:

Make me feel tiny if it makes you feel tall
But there’s always someone cooler than you
Yeah, you’re the s***
But you won’t be it for long
Oh, there’s always someone cooler than you
Yeah, there’s always someone cooler than you

Could it be that Ben Folds is saying what Paul was saying in Philippians 2? Paul said:

Do nothing from selfish ambition or conceit, but in humility regard others as better than yourselves. Let each of you look not to your own interests, but to the interests of others.

Or in other words, "You're cool but so are other people. Pay attention to them. Listen to them. Care for them."

That's one of the things I love about New York City. There is always another story to hear or putting it more plainly, there's always someone cooler than you.

Ira's doing okay. Nothing new to report really except that after seven weeks in the same locatoin Ira's been moved into his own room. That happened on Friday night. We weren't prepared for that move. It's funny how little things like that can throw you off.

Ira slept most of the weekend away. It's like he is making up for those restless days earlier this week when he was in pain.

By the end of the week the doctors want to wean Ira to where he can tolerate 25-28% oxygen from the CPAP. He does well on 30% and at times needs a bit more than that. So that is the tangible thing we're looking for this week.

I'm fully aware that most of you come here to check on the status of Ira. I'm aware that when I venture into other realms such as politics, religion, pop culture and the like that I lose you. I lose you because either you don't care about these subjects or - and this is much more likely - you don't give a flip what I have to say about these subjects. And who could blame you? "Just stick to news about Ira, darnit!" (I so wanted to use the more provocative synonym for "darnit" just now!)

So until Ira gets to come home I'll continue to post on his progress. And as he is weaned from the medicine and machines, you too will be weaned from this blog I'm sure. But I ask that you be patient with me for there are other things I want to say: feelings not associated with Ira I want to share, questions I have to ask, thoughts I want to express.

I've wanted to write about how one makes plural a proper noun like "Hays" that ends with "s" and how one makes it possessive.

I've wanted to write about my daily one hour subway commute to and from the house and hospital.

I've wanted to express my angst about living in New York City and the financial toll it takes on the average family.

I've wanted to discuss common misconceptions of prayer.

I've wanted to ask for advice as to what I should put on my iPod workout playlist.

I've wanted to reveal that when I sneeze I sound just like my dad and that I'm afraid I'm balding just like my dad too.

So I hope that you'll be patient with me if every now and then I slip in something that is not Ira related.

Consent forms. You know how many consent forms Laura and I have filled out since this journey began? Consent for a blood transfusion; consent for the ECMO; consent for the surgery; consent for the study...

But the consent form Laura had to sign yesterday was a bit different. The Today Show is going to do a segment on the NICU of the Children's Hospital where we are located. They are specifically going to interview Ira's roommate's parents. They had Laura sign a consent form just in case Ira's mug got caught in the action.

The segment will be taped on Monday and will air on Thursday, July 16. Tape it, TiVo it or watch it live (does anyone do that anymore?) and you'll get a feel for what our NICU is like.
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We are looking forward to Laura's mom coming in this afternoon. We are at a point where we need the help with Sophia. We find ourselves exhausted all the time. In fact, we are learning to function exhausted but it's taking its toll on us. Kay, as I've mentioned before, is a huge help. We are extremely grateful to a friend in the D/FW area who gave us her frequent flier miles in order for Laura's mom to make the trip.
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Have I mentioned lately the ways that Laura and I are being taken care of by our friends and family?

Just a couple of days ago a family in Nashville sent my entire family packages containing gifts for the kids and snacks for Laura and me to munch on as we sit at the hospital all day.

A teenager from church is taking care of Sophia today. She graduated from high school this past week and has every right to sleep in and do a whole lotta nothing. And a couple of days ago we had a some help with Sophia from friends who are working full-time jobs.

My grandmother in Abilene sent us money not long ago that paid for another monthly subway card. And my mom made sure we had a enough money for gas and parking for those days that we drive.

We continue to be lifted up by the cards we receive from all over and the comments made on this blog.

And the Manhattan Church of Christ and Christ's Church for Brooklyn continue to make sure that there is not a day that goes by that we don't have a meal prepared for us.

And there's more. I could go on.

You who are helping us are like the friends of Mark 2. They lowered their paralyzed friend through the roof in order to get to Jesus. Upon seeing the faith of the friends, Jesus healed the paralyzed man.

In so many ways, our family feels paralyzed. But because you have cared for us and lowered us through the roof to Jesus, we are being healed.

For that we are grateful.

It was Wednesday morning. Laura and I were rushing around getting ready for the day. I was going to work and Laura was headed to the hospital and a babysitter was on her way over to take care of Sophia.

Laura and I ended up in the bathroom at the same time with Sophia nowhere to be found. Laura left the bathroom and came back a few minutes later to tell me that she found Sophia in our bedroom with our cell phone having a conversation with someone.

Sophia apparently pushed and held the number three which is the speed dial to Ira's nurse. The nurse was quite confused and handed the phone to another nurse saying, "I think this is some kid?!"

The other nurse, Perlita, happens to be a big fan of Sophia's and Sophia is a big fan of hers. So through a series of questions Perlita learned that the kid on the other end of the line was Sophia.

Perlita asked Sophia if she has a baby brother or sister in the hospital. Sophia answered affirmatively saying something about a "baby brudder." "What is your brother's name?" Perlita asked. "Ira!" Perlita knew then that it was Sophia and started talking as if they were old friends.

Laura interrupted the conversation and had a good laugh with Perlita. We later got to the NICU and shared more laughs with many of the nurses on the floor. They were quite impressed with Sophia's phone abilities.

To say the least, it was hard to discipline Sophia because it was so darn cute but we did our best to keep a straight face as we explained to her that the phone is not for children.
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Ira had a good Tuesday and Wednesday. Nonthing new to report other than the usual: he's hovering around 30% oxygen, still getting Viagra and on 10 nm of Flolan an hour.

I guess the big news to report is that they have compressed his feedings. He is no longer being continuously fed 24 hours a day. He is starting to eat in regular intervals. This is good. The last couple of nurses really believe Ira could start nippling and being fed through the mouth. Ira's good at sucking on the pacifier and holds his milk down well so it would seem that a natural next step would be to try to feed him orally.

The nurses have pushed the doctors on this but the doctors didn't take. I really do think it is only a matter of days before the docs give in and we move forward on the feeding.

And I think it would do wonders for Ira if this were the case.

my new digs

my new digs, part 2

Ira moved into his new digs - different bed - this past weekend. Pretty cool, huh? (As always, you can click on the picture above and be taken to my flickr.com account where you can view more pics that we took today.) We were able to get him a mobile that keeps him entertained when we aren't around.

He had a good day today. Much more peaceful than Sunday and Monday. We held him all morning long.

Today was the first time someone indicated how long we might be around the NICU. The nurse attending Ira told us that pulmonary hypertension keeps babies in for months. She's been around for 25+ years and we trust this nurse. While she didn't get more specific than that it was enough for me to take in the reality of how long our road ahead might be.

It's not that I've had my hopes up for going home soon. All you have to do is see Ira off the CPAP to know that it's not time but I haven't adjusted my mindset to being in this for a long time either.

I had two immediate reactions to this news from the nurse: first, I had a sense of buckling down, digging in and going forward one day at a time. Second, I wanted to take a nap.

So Ira is back on the Flolan. There was an ECCO done today to see if his pressure was any better but I left before we got the results.

Here's the thing about Flolan. When they tried using Flolan on children it was reported that the children suffered headaches and severe gaseous pains. You might remember that I posted once that Flolan is very experimental with infants. There are times when Ira screams at the top of us under-developed lungs and the only thing the nurses can surmise from this is that Ira is having headaches or severe gas. He turns three different shades of red and there is nothing, nothing, we can do to calm him down.

I just talked with Laura who is at the hospital. Ira just had one of the these episodes. She was exhausted from trying to help him out.
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After meeting for a month in the home of R and T the Brooklyn church plant, Christ's Church for Brooklyn, is meeting back in our home. We kicked that off last night. It was good to have everyone back. A little overwhelming after a day at the hospital, but good.

I'm so impressed with the group of people who have committed themselves to this effort. They knew early on that it was going to be unstable due to my family's situation but they hung around and hung on.

People stepped up to continue the progress during our time away. I'm thankful for these sisters and brothers who have a desire to step out of their comfort zones to try this new thing despite the uncertainty of the road ahead.

I ask that you pray for Christ's Church for Brooklyn as it continues to search for its purpose here.
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Finally, I want to thank all of you for logging in and commenting on Laura's post yesterday. I appreciate your willingness to step out on a limb and admit your uncertainties about God's work in this world.

Many of you know Laura personally and know that she is a giant woman of faith. Many of you know Laura personally and look up to her for her authenticity and genuineness. Many of you know Laura personally and realize that Laura will come out of the experience with much to say about God and God's work in this broken world.

So again, I thank you for testifying through your comments of Laura's faith. But if you haven't yet done so and you know Laura and have experienced Laura's personhood then leave a comment for I'm sure she could use the edification.

My (Laura) thoughts on the train this morning...

Why do you let your hand slip when forming some babies in the womb?
They are not perfectly made and thus enter a life of suffering - one that is no fault of their own.
I do not understand. I do not understand.

Why do you allow the wind and waves, fire and rain to cause such devastation?
Do they not listen to you? So much death, so many tears.
I do not understand. I do not understand.

Why do you let cancer consume the bodies of those you love?
Day and night they fight to live while those around them are forced to wait and wonder.
I do not understand. I do not understand.

Where is the hope and future you have promised for these, O God?

The only thing I know to do is trust in your name with all of my heart.
I shall not rely on what I understand for I do not understand. I do not understand.

Ugh. Ira's pulmonary pressure hasn't gotten any better so they put him back on Flolan yesterday evening. Too much high pressure over time leads to the heart working harder which leads to an overworked heart which leads to...

We had a good couple of weeks where progress seemed to be the only way ahead. This step back knocked the breath out of us. It was hard to take.

So thanks for the song suggestions. We will make a playlist for our iPod of some (sorry, folks, not all) of your submissions so that our trip on the A train will be somewhat tolerable.

Ira went off Flolan on Thursday morning and they turned his CPAP oxygen to 25%. Like the ventilator 21% is room-air and the lowest setting. However, Ira didn't agree with all the changes and de-satted quite a bit yesterday and today. They did an ECCO today and the cardiologist said that Ira's heart pressure was still high and was cause for concern but that his function was good.

We'll just keep plugging along on this long, long road. Does anyone know a good song we could sing as we travel down this road? Something smooth. Not too fast (no energy for that), not too slow (we gotta get somewhere), not too preachy (not in the mood). Can you help us out with some suggestions?

June 1, 05

Ira @ Six Weeks

I took this shot before Ira's nurse re-taped his CPAP. The tube in his nose is filled with Laura's milk and goes directly to his stomach. It's a 24 hour continuous feed. You can see on his upper lip the effects of the all the tape he endures.

He's pretty cute, huh? He looks a little stressed and it's because he is. He doesn't like to go too long without the CPAP. His nose/nostrils are pretty big. They call that a "CPAP Nose". Some say that his nose will go back to its normal size after a while but some say you could forever be stuck with a CPAP Nose. That is the least of our concerns.

He hasn't completely gone off the Flolan medicine. His breathing was rapid a couple of different times yesterday and his heartrate a bit abnormal so they decided to wait to turn the Flolan off. He had a good afternoon yesterday and a good night last night so I imagine he will be off the Flolan today. Let's hope his heart and body agree with that decision.
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Updates on Other Babies:
I told Baby Khadera's story on my May 16 post. It's worth a read or re-read because it's an amazing story. Anyway, after being in the NICU since late February, Baby Khadera began her trek home to Memphis, TN yesterday. I met one proud granddad and the other granddad was on his way to help them with the 17 hour trip home. We are thrilled for them.

Baby Lily (a CDH baby) is doing well. I first spoke of Lily in my April 29 post. She's been here since Easter (10 weeks now). Her mom is so ready to have Lily home. Lily is also on the CPAP but can spend significant amounts of time off the CPAP. She is learning to eat. Let's hope that Lily gets to go home within the next one or two weeks.

I also spoke of Baby Ava (a CDH baby) in my April 29 post. They are at home and doing well. I've e-mailed with Ava's dad and he told me of the joy and anxiety that comes with having Ava home. It's hard for them to discern what's normal from Ava and what may be an after effect of her CDH, etc.

Ira's current roommate, Baby Alix, is doing great. Laura and I think Alix will get to go home next week sometime (as if we are experts on the matter) because she is flying over the hurdles.

We never mentioned Baby Jasper who was our roommate before Alix. (Ira's been in the same place in the NICU but has shared it with five different babies.) Jasper had heart issues. The surgery was a success and they are now home. His parents were incredibly sweet and invited Sophia over to have playdates with their two year old. Their graciousness was/is an example to Laura and me.

There are other babies that we have come to know: Baby Jime (pronounced hi-may), Baby Nelson, Twins Antonio and John.

There are 60 beds in this NICU and it's always full. There are the same amount of beds on the 6th floor which houses the PICU.

Laura and I will never be the same and I'm praying to God that Jesus' words in Matthew 5:4 are true:

Blessed are those who mourn, for they will be comforted.