Wednesday, August 31, 2005

my best friends

Update on Ira: He's officially off the Nitric Oxide as of this morning. It turned out that the pulmonary hypertension team moves glacially slow. Even the other docs were a bit perplexed at how slow they moved on this. He's off the NO which means Ira's pulmonary hypertension is being treated with only the Viagra. We're hoping he does well on this so that we can take out the Broviac line. He's developed an allergy to the leads that monitor his heart rate and breathing. So he's broken out all over his chest.

They've compressed his feedings again and the green light has been given to start working with the feeding specialist again. We hope Ira can learn how to eat orally but we understand it will be a long process. He is working with his OT/PT again. (All this was put on hold after his surgery.)
In other news: my sister, Jackie, from College Station, Texas is here and got oriented into our lifestyle quickly. She came straight to the hospital upon arrival and I gave her a crash course in Ira care.

Tuesday, our friends Yael and Bryan invited us to go to the Bronx Zoo and so we loaded up the car and took off while Jackie hung out with Ira. We had a blast. Sophia loved every minute of it.

The title of this post, my best friends, refers to Sophia's feelings about Yael and Bryan. You can tell from the picture below that she absolutly adores them. And who wouldn't? Yael and Bryan have gone out of their way to take care of us during this struggle with Ira.

Sunday, August 28, 2005

holding on

There is not much to report. Ira had a stable weekend. I think he will be completely weaned off the Nitric Oxide on Monday. Then he'll be given a couple of days on the Viagra alone. If he can tolerate that then they will take out the Broviac Line.

My sister, Jackie, comes tomorrow for the week. We can't wait to have her around!

In 1966, South African students heard Robert Kennedy proclaim:

Each time a person stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he or she sends forth a tiny ripple of hope.

I read this passage through lenses of one who has been given a tiny ripple of hope through your many generous acts. In order to improve our lot you have helped us spiritually, financially, emotionally and physically. For that we are grateful and we hold on to hope. Thank you.

I also read this passage through lenses of one who feels that any action I perform on behalf of a grand ideal (eliminating poverty), to improve the lot of others (starving children) or against injustice (genocide in Darfur) is insignificant.

Lord, I confess that I underestimate what you can do through me. Thank you for the countless friends and families who have helped us. May I, with your guiding, help others. Amen.

Friday, August 26, 2005

If you do nothing else this weekend pick up the latest copy of Newsweek. Not because it's cover story is about Spirituality in America: What We Believe, How We Pray, Where We Find God but because of the My Turn article on page 16. It's written by a junior in high school whose family takes care of foster children. It will move you to tears.

Thursday, August 25, 2005

Please excuse my third post today and allow me this short story that reveals much:

I had the evening/night shift with Sophia today. Because I'm worthless in the kitchen I decide that Sophia and I should go to the neighborhood diner and grab a bite to eat. We get our usual, The Lumberjack. It comes with three huge pampcakes, as Sophia calls them, four pieces of bacon, three sausage links and eggs. Sophia loves it.

So we're sitting there waiting for our food and I start talking about Ira. I'm talking about Ira being sick and how important it is to be quiet when we go to the hospital. I continue by saying that I wish Ira could come home soon when Sophia pipes up and says, "me too. I want Ira home too."

"Oh really? Why?" I ask.

"Because I really want mom home really soon," she honestly replies.

Laura and I have no idea how this is effecting Sophia but with tonight's conversation it was evident that she understands that Ira's sickness means that her parents aren't around as much as she would like.
My beloved Yankees. Why must they hate you so? Why must they call you the Evil Empire when all you have done is continue the legend that is baseball?

Could it be that they are jealous of you, my precious Yankees?

Could it be that they covet your 26 World Championships or 39 American League pennants? Could it be that you hold the club record for wins in a season at 114 in 1998? Could it be that you have 34 players in the Hall of Fame? Is it because you have retired 16 numbers - not including J. Robinson - and have Monument Park to celebrate those players? Is it that you've produced 20 MVPs, 5 Cy Youngs, 8 Rookies of the Year, 2 Triple Crowns, 11 World Series MVPs and 7 ACLS MVPs?

Or is it that your owner loves the game so much that he'll do whatever it takes to get a win? Is it that he is unabashed in his monetary efforts to bring the best to NY? Is it that he will completely finance a new stadium effort without digging into the pockets of the taxpayers? Is it that deep down inside these mean spirited haters want an owner like you have?

Or is it that guys like A-Rod will take on a new position in the height of his career to be a part of your lore? Or a veteran like Bernie Williams will sit until he works out of his slump? Or is it that when they watch D. Jeter they get jealous of his love of the game and wish their own team's players played with that much passion day in and day out?

My beloved Yankees. Forgive the haters. It's just that they haven't quite gotten around to abiding by the 10th commandment. They covet you and in so doing, hate you. Of course who am I to tell you, my Yankees, of how to handle this hate? You've been around since 1903. You've seen worse. You've heard worse. And you continue to play right on into October with your head held high.
I'm hanging with Ira. He's in bed staring at me as I type out this post...nope, now he's asleep. The docs just rounded and the new word is that we are weaning Ira to 2.5 on the NO today and will, more than likely, keep him at that level through the weekend. Everyone is pleased with how Ira looks and how he is doing. It seems the pulmonary hypertesion team is being extra cautious when the rest of us are in "go" mode - as my wife and I like to call it. But patience is our new best friend and so we press on.

Wednesday, August 24, 2005

So here's the skinny on Ira. His pulmonary hypertension has been regulated with Viagra and Nitric Oxide through the CPAP since the mishap with his Broviac line. Monday's ECCO showed that Ira's heart's function is good and so with that, they decided to begin weaning Ira from the NO today. He went from 10 to 5 on the NO today and then they did another ECCO this evening. They will probably continue to wean tomorrow turning off the NO completely. And then they will see how Ira does over the weekend on just the Viagra and do another ECCO on Monday hoping to make a decision about the Flolan and removal of the Broviac. We want so badly for Ira not to have the Broviac.

If you can follow any of the bs above then bless you. The short of it is that we were all pleased with the outcome of Monday's ECCO and now await how Ira will do on Viagra alone.

(BTW: The proper abreviation for echocardiogram is probably "echo" but I've been influenced by Ira's charts where it is sometimes abbreviated as you see it above.)

Tuesday, August 23, 2005

I'm currently reading Gilead by Marilynne Robinson. The book is a letter from a dying Reverend to his young son. An exert:
Young people from my own flock have come home with a copy of La Nausee or L'Immoraliste, flummoxed by the possibility of unbelief, when I must have told them a thousand times that unbelief is possible. And they are attracted to it by the very books that tell them what a misery it is. And they want me to defend religion, and they want me to give them "proofs." I just won't do it. It only confirms them in their skepticism. Because nothing true can be said about God from a posture of defense.
So I ask of you the question, can anything true be said of God from a posture of defense? If not, apologetics is a wash, right? Much of our evangelism - is there much of it? - is based on apologetics and giving a defense of the Gospel and attempting to give proofs about God and his existence in this world. Could it be that this dying Reverend of the 1950s is on to something?
Ira's ECCO test went well yesterday. He remained calm through it with the help of Laura's singing. We'll find out the results of that test later today or early tomorrow.

Ira continues to sleep. Laura spent most of the day with him yesterday and he slept most of it. I went up last night and woke him at 7 PM. He was back out at 9. The night nurse said he slept most of the night too.

Sweet dreams, Ira.

Sunday, August 21, 2005

Ira is four months old today. His friend, Lily, will be five months old tomorrow. There are two other babies who are six months old. The nurses call these babies the senior citizens of the NICU and complain about how heavy they all are.

Ira's had an interesting weekend. He started sleeping on Friday and hasn't had much awake time since. When he woke on Saturday he was not too happy. We had a full week of pure joy with him so we are unsure of how to interpret these latest signs. The last time he slept this much they got neurology involved hoping to find out if anything was going on internally with the brain. We are just kinda waiting it out hoping that he'll snap out of it.

Monday is a big day because they will do another ECCO. We are hoping to find the Viagra to be sufficient for controlling Ira's pulmonary hypertension which would mean we are no longer in need of the Flolan and the Broviac Line. I never thought I would want my son to do well on Viagra. It gives a whole new meaning to the phrase uttered by the doctor, "I hope Viagra works for him."

Saturday, August 20, 2005

Two weeks from today my Texas A&M Aggies will kick off their college football season against Clemson. I'm a huge fan of college basketball and believe that it doesn't get any better than March Madness but college football in the fall is a close second. Which brings me to today's Top Ten list:


1. Tradition -- Touchdown Jesus. Midnight Yell Practice at Kyle. Florida State's Tomahawk Chop. Dotting of the "i" in Ohio. Need I say more?

2. Rivalries -- Army/Navy. Alabama/Auburn. A&M/tu. Washington/Wash St. Notre Dame/USC. Harvard/Yale. NFL games like Cowboys/Redskins used to mean something. Not anymore thanks to parity and free-agency.

3. No Pre-season -- The NFL is finding a way to creep into our homes earlier and earlier every year thanks to pre-season games. And the pre-season games suck! Work your kinks out in practice. Make cuts based upon what you see in practice. In college football you better have all that worked out when you line 'em up on Saturday which leads naturally to #4...

4. Every Game Matters -- I love that college teams have to come out and play soundly from the start. Yes, college teams pad their schedules somewhat but on any given Saturday...

5. Heart -- College players still have heart. NFL? Give me a break. Sure, there are the exceptions in the NFL of guys who care and there are college players who are looking to the next level but on the whole, college football players play because they still have that pigskin passion.

6. Team Comes First -- Did you hear that Terrel Owens? Ricky Williams? Steve Spurrier attempted his hand at the NFL after incredible success at the collegiate level. He surmised what we already know: in the NFL it's all about "me" but not in college football. (See most current Sports Illustrated for interview.)

7. Overtime -- Games in college football give both teams a chance instead of allowing a coin to determine the winner. Nothing is more exciting than watching an overtime college football game live.

8. Crowd Participation -- NFL crowds are lazy. They are lethargic. I've been to a Cowboys game, Oilers game, Giants game. BORING! I'm constantly involved in the action when it comes to college football. Home field advantage counts for much more in college than it does for the pros.

9. Road Trips -- I've been to LSU, OU, BYU, tu, Tech, SMU, Houston, Baylor... Incredible. Even my most ardent NFL fan friends have never made a road trip to see their team play.

10. TEXAS A&M AGGIES -- BEAT THE HELL 'OUTTA CLEMSON! WHOOP! (It's a tradition, you wouldn't understand.)

Thursday, August 18, 2005

Watch out ladies, Ira's back on Viagra. We are going to give Ira a chance at keeping his pulmonary hypertension in check with the Viagra. This is good as Viagra is an oral medication. If it works, Ira won't need the Flolan that has to be administered through the Broviac line which, in turn, means that Ira can lose the Broviac. This would be huge as it would be one less constricting device Ira has to deal with.

Ira had a good day. He was awake all morning and afternoon with Laura and Grandma and asleep all afternoon and evening with me. I am a pretty boring guy but Ira, cut me some slack. I woke him up to change his diaper and take his temp and he was not happy about it. He gave me this pitiful look until I started fake sneezing which brought a smile to his face. What is it with fake sneezes and babies anyway?
Have you heard of the new book, My Freshman Year? Prof. Rebekah Nathan felt quite a distance between herself and her students so she enrolled as a student and lived life as a freshman. And as she did so she studied the lives of undergraduates focusing on the students’ academic lives. She came to a startling conclusion. According to the Newsweek blurb she saw “how profs’ office hours often conflicted with her other classes. Deciding which reading assignments to skip was a necessary survival tactic. She pulled mostly B’s. Now that she’s teaching again, she’s cut her students required reading by 20 percent. She now knows many students chose her class only because they needed a course at noon on Tuesdays to fit their schedules. And today, when she sees a student eating in a lecture, she knows it may be because it’s the only time he can.”

My freshman year I attended Texas A&M and did something my other sisters didn’t do: I made the Dean’s List. The Dean’s List for Academic Probation, that is.

According to Prof. Nathan, we should cut freshmen some slack. So Mom and Dad, I’m awaiting an apology for giving me such a hard time after that first semester! (Kidding, Mom and Dad. Thanks for your patience.)

Are we asking too much from our undergraduates or has our work ethic shifted so significantly that our undergraduates don't know how to work hard? Or both? Bueller? Anyone? Bueller?

Wednesday, August 17, 2005

We just got home from the hospital. Ira looked great. So great, in fact, that I thought I would share some pics we took of him tonight.

Here's Ira hanging out in my lap. He was pretty comfortable like this for about 15 minutes and then decided that it was time to change positions. That darn CPAP is one annoying device! You can see that I'm having to hold up his tubes so that he doesn't feel the pull of them or else he extends. Ira's PT and OT get on to us about him extending.

Sitting up
Originally uploaded by joechays.

Ira is sitting in his Tumble Form. It's an occupational therapy chair that fits right in his crib. It helps him work on his core muscles. Can I get a work-out for my core muscles by just sitting? I love the eye contact between Ira and Laura. And yes, Ira is constantly playing with his CPAP. He often pulls it out and makes himself mad.

Mommy is so pretty
Originally uploaded by joechays.

And finally, here's a shot of the famed mohawk. Ira's had IVs in his head and each time they do it, they shave a bit more hair off his head. Laura and I are unsure as to what we will do with his hair but as you can imagine, it's the least of our worries. For now, we get a good laugh at his hairdo.

Nice Mohawk
Originally uploaded by joechays.

Click on any of the above pictures to go to my Flickr account to see more pics of Ira and Sophia.
I've delayed writing this post because it's hard for even me to follow. Here goes: Ira needed two IVs coming out of surgery. One IV was used to feed him his TPN. The other IV was kept as a back-up because Ira is a notoriously hard stick -- meaning, they have a hard time finding veins good enough for IV use. Since coming out of surgery, Ira has gone through several different IVs. The best nurses, technicians and doctors have worked on getting a IVs for Ira.

When we left Ira on Monday night everything was as it should be: Flolan through the Broviac, TPN through the IV in the head, an extra IV in his foot, CPAP, the G-tube in place but not in use yet...

We called on Tuesday morning to see how Ira was doing and the report we got was disturbing. The Broviac line clotted and both IVs were lost at some point in the night. So for some time Ira was neither getting his Flolan to control his pulmonary hypertension nor was he getting fed. Doctors rushed to the scene because of Flolan's short half-life and made some very big decisions.

They got the Broviac unclotted. They then began discussing what they should do next: get the Flolan going or get Ira fed. To get Ira fed - the surgical team was still not comfortable using the G-tube just yet - they would need to stick Ira again for an IV to give him his TPN. They decided to feed Ira through the Broviac line and to forgo the Flolan. Instead they gave him Nitric Oxide through the CPAP to hopefully control the pulmonary hypertension.

And that's how we found him on Tuesday morning. Our attending was incredibly apologetic that we were not called when all this went down. We weren't too happy either.

There are quite a few questions about what to do next for Ira. Does Ira really need the Flolan? Could it be that Ira could take something orally for his pulmonary hypertension like Viagra? We tried it once, could we try it again?

They did all kinds of tests yesterday to make sure everything is okay. They did an ECCO to make sure the heart was still functioning properly and they did a culture on the Broviac to see if the line was infected in any way. If the line is infected this could be very serious and the ECCO test showed that the artery the Broviac is in is constricted somewhat. We are anxiously awaiting the culture test as the implications are huge.

But in the midst of all this (and you should picture me whispering at this point with a very cautious look on my face) Ira looks good. His oxygen is still at around 23-25% and Ira generally looks more comfortable and happy then before his surgery. The doctors are kinda baffled as they didn't expect much change for Ira coming out of surgery but it's evident that life for Ira is much the moment.

Monday, August 15, 2005

Ira had a good day. He slept quite a bit but had some good awake time. We have yet to start feeding him Laura's milk via the G-tube. He is being fed through the IV with TPN. The good news is that Ira's rate of oxygen is pretty low at 23-25%. Ira was hovering around 30% before the surgery. We are cautiously optimistic.

Laura and I are trying to recover from the weekend. Between Ira's surgery, the wedding and church, we're whipped. Have I said lately how thankful I am that Laura's mom is here? She was to leave on Tuesday but asked if she could hang around a bit longer. I hope Laura and I didn't look too desperate when we said, "PLEASE DO!"
I have a good friend in Sugar Land, TX named Steve. I mentioned Steve in my May 7 post. He came to be with us and our family when Ira was born. He returned home in time to be with his family as his sister gave birth to Noah. Noah lived eight days before going home to be with God.

Laura and I have become e-friends (is there such a thing?) with Steve's sister and brother-in-law through sharing our NICU experiences. We have grieved heavily the loss of Noah even though we never met him and don't know his parents. Their faith through this struggle is a testament to Laura and me. Take the time to go over to their blog to hear some of their latest thoughts on the life of Noah.

Steve woke up the other morning at 4 a.m. with Ira on his mind and heart. He hopped out of bed and went to work. He created this page where people could help out tangibly. And on behalf of Noah Whaley, they purchased 500 bracelets with Ira's name on them and are hoping to sell them. More information to come.

Thanks, Steve and thanks, Noah.

Saturday, August 13, 2005

Much to our relief, Ira was extubated this evening. Ira made it known that he was ready to be extubated and didn't care for an MRI, thank you very much. Once he was back on the familiar CPAP he went right to sleep. We're all home tonight hoping to get some rest.

3 Generations of Hayses

3 Generations of Hayses
Originally uploaded by joechays.

This is the night before surgery. My dad flew in on Thursday night, came straight to the hospital and we handed him Ira. It was a sweet moment.
Laura spent the night at the hospital last night. (Notice that I didn't say that Laura slept at the hospital last night.)

Ira started to wake from his deep slumber yesterday afternoon while Laura and I were at the wedding rehearsal. It wasn't a pleasant scene from what we understand.

He makes the face of one crying - a face we've gotten to know well - but he can't be heard because of being intubated.

He's incredibly swollen. They gave him so much fluid during the surgery that he doesn't look like himself.

They're keeping him intubated because they're hoping to get an MRI done but there are no guarantees. We could start working toward extubation today if we weren't holding out for the MRI. In the meantime, we dope him up to keep Ira from extubating himself by pulling out the vent tubes. Laura and I aren't too happy with this but are trying to be patient.

Again, thanks for the prayers, notes, thoughts and encouragement.

Friday, August 12, 2005

Laura here...
Ira's surgery lasted 3 hours and 45 minutes. The last 45 minutes felt like years. Everything went well. Ira's gortex diaphram had pulled away from the muscle allowing the colon and some small intestines to creep back up into the chest. The surgeons were able to pull those organs back down and add another piece of gortex to fill in the gap. They were also able to put in the G-tube. Ira came back to the NICU on the vent and completely sedated. They will continue to sedate him so that he won't pull out the vent. The neonatologists are hoping to get the MRI completed while Ira is ventilated so that should happen today or tomorrow. Overall, we are relieved and are hoping and praying for a quick recovery.

Meanwhile, Joe is performing a wedding ceremony tomorrow so he and I have slipped away from the hospital for a couple hours to attend the rehersal. Granddad (Joe's dad) and KK (my mom) are keeping Ira company. Thanks to all of you for covering us in prayer.

Thursday, August 11, 2005

We're on for 8 a.m. The surgery for 8 a.m. was cancelled so Ira was bumped up. He'll go in at 7:30 and the procedure will begin at 8.

They will correct the re-herniation, put in a G-tube and possibly do two different procedures to the stomach to help him with his food intake. They'll decide about the stomach procedures when they actually open him up.

He's sound asleep at the moment. Don't think I'll be going home tonight.
My favorite musical by far is Les Miserables. And one of the most moving songs in that musical is a song I can't get out of my head today, Bring Him Home.

God on high
Hear my prayer
In my need
You have always been there

He is young
He's afraid
Let him rest
Heaven blessed.
Bring him home
Bring him home
Bring him home.

He's like the son I might have known
If God had granted me a son.
The summers die
One by one
How soon they fly
On and on
And I am old
And will be gone.

Bring him peace
Bring him joy
He is young
He is only a boy.

You can take
You can give
Let him be
Let him live.
If I die, let me die
Let him live, bring him home
Bring him home
Bring him home.
They are gonig to intubate Ira on Friday morning. You might remember that neurology got involved in Ira's life in early July. They did an EEG and wanted to perform an MRI to make sure Ira didn't have a stroke or something of that nature. They did the EEG but never did the MRI. So they'll take advantage of Ira being intubated and do the MRI on Friday morning. He'll be sedated for that procedure. And then we'll all wait for the surgery on Friday night where Ira will once again be sedated.

I can't really explain it but it's different this time around. In the beginning when everything was happening so quickly we didn't really have time to catch our breath and because it was all a matter of life and death we didn't think twice about what was going on and what Ira was being put through. But now our little guy is almost four months old. He is has a personality. He communicates with us with grunts and gurgles and smiles at us. We know him much better and he knows us much better.

I remember my mom and dad having a hard time when I was a teen and had three heart procedures. I now know their feeling of absolute fear. I'm scared.

Wednesday, August 10, 2005

We are an add-on to Friday's OR schedule. So Ira will be going in late on Friday night.

Tuesday, August 09, 2005

No news just yet about when the surgery will be. Probably Friday or Saturday. Ira had a good day. Thank you for all your prayers. We feel covered. And we are.

Monday, August 08, 2005

So Ira's surgeon walks in. We think he's come to tell us about inserting a G-tube - a feeding tube that goes directly into the stomach. So it was a surprise to us when he said that Ira has a "recurrent diaphragmatic hernia."

Turns out that 15% of CDH babies that had ECMO support experience a recurrent hernia. You might remember that they built a diaphragm for Ira out of goretex. Ira's goretex diaphragm pulled away from the skin and the stomach, intestines, and possibly more started inching their way up again.

I asked the surgeon if this could explain Ira's inability to make strides with his breathing. The surgeon wasn't sure but did say it could explain Ira's pissy mood.

So Ira will go in for his sixth surgery sometime this week. It will be a difficult surgery that will take about three hours. Ira will be re-intubated which means he'll go back on the ventilator.

All this is a significant step back.

We're horrible parents!

As if bringing a portable DVD player to Ira's room to pacify our daughter wasn't bad enough, we yet again showed our incredible parenting skills by taking our sensitive two year old to Sesame Place so that she could spend the day crying. She cried with Oscar. She cried with Grover. She cried with Bert. She didn't want to get in the water.

We decided to take a day trip into Pennsylvania with Sophia needing desperately to get away from the city. We drove to the hospital early on Friday morning to see Ira and headed to Sesame Place. The trip was fun in spite of Sophia being miserable. It was good to get away and Ira was in good hands with his Grandma Kay Kay.

Sunday, August 07, 2005

While Ira sleeps...

Originally uploaded by joechays.'s movie time!

Originally uploaded by joechays.

Saturday, August 06, 2005

The antibiotics are working. Ira is doing much better and in much better spirits. His week will be busy this week. Many tests and a possible surgery to put in the G-tube. More later...

Friday, August 05, 2005

Ira's sick. Not "lung collapse" kind of sick which is what all of us with CDH babies worry about but something's up. His day yesterday was horrible. He had two friends visit him, Derrick and Bethany, and he didn't put on a good show at all. He cried most of the day and the tears were tears of pain, hurt and exhaustion. The last two nights have been the same. We called the night nurse first thing this morning and she sounded wiped out. Something is going around. They did a culture on his eye and it came back positive and the culture around his Broviac line came back positive, too. They put an IV in last night and are pumping him with antibiotics.

The baby across from us is the oldest in the NICU at six months. She was due to go home but got sick and her lung collapsed. She is re-intubated and on Nitric Oxide. Ugh. It's not a pretty scene around the NICU right now...but is it ever?

Thursday, August 04, 2005

Jim Wallis is an evangelical. He's a minister. And he's a Democrat. Some of you are laughing to yourself thinking that an "evangelical Democrat" is an oxymoron. Maybe. But consider his op-ed piece in the New York Times about how Democrats need to change their message in five distinct areas: the poor, the environment, abortion, family values, and national security.

Registration is free for the NY Times online and they won't send you spam so sign up, read the article and tell me what you think.

Tuesday, August 02, 2005

(From Laura)

Musings of a NICU mommy

1) My son has clothes he is outgrowing - some of which I’ve never seen adorn his body but have only folded in the laundry.

2) My new community of friends consists of Tyisha and Tracy at the front desk along with the 20 or so nurses I know on a first name basis.

3) My daughter now has a “chicken ‘mugget’ and chocolate milk” dance she does at the mere suggestion of going to Wendy’s across the street from the hospital. (Ok, the frosties are pretty good but how many #6 meal deals can one mother eat?)

4) When a nurse directs the phrase “got milk?” in my direction it takes on a whole new meaning.

5) Everyday I must pass mothers with their new babies waiting to go home. I want to scream at them and remind them how lucky they are…but I pass by quietly instead. To some, I suppose I am lucky. My boy is still alive.

6) Is it really August already? I know its hot outside but other than that there are none of the other usual signs of summer. Everyday looks pretty much the same. Thank you God (and Joe’s family) for the trip to Isla Mujeres back in February!

7) Although I hate saying goodbye to my son everyday, I am thankful for the quality of care he is receiving when his parents are not around! Thank you Janet, Secora, Sandra, Pat and so many more!

Monday, August 01, 2005

Ira's still sleeping. It's too dark in the room to read. I attempted to nap along with Ira but my mind is racing. So let's talk summer jobs.

The summer before my senior year in high school I worked for the local grocery store. (Notice the use of "the". Yes, we only had one grocery store where I grew up.) I worked for my dad, a CPA, after I graduated from high school. I'm not sure what I did for him which probably means I did a whole lotta nothing. (Sorry, Dad.) I worked as a YMCA counselor in Abilene, Texas after my freshman year of college and lived with my grandparents. I wouldn't trade that intimate time with my grandmom and granddad for anything. I was a counselor at an inner city kids camp and worked as an intern at a couple of different churches during other summers.

But my first summer job ever was spraying weeds for a couple of farmers in Tahoka. I did it for two or three summers starting at the age of 13. The farmers, Maurice and Mike, were intimidating. They both talked with thick Texas drawls. They had the hands of men who worked hard. Cotton farming was a demanding business and so they took their work seriously. They were professionals and expected their farm hands to be professionals as well. I worked with Pancho, Jackson and Mike's two daughters, Betsy and Katy.

Okay, so at 13 I didn't know exactly what it meant to be a professional and so maybe Betsy, Katy and I goofed around a bit by spraying each other and driving recklessly on the rigs but I learned much during those summers of spraying.

I learned from Maurice and Mike that while they could be hard, intimidating men, they were incredibly compassionate Christians to their core. I learned from Pancho that it was necessary to approach a rattlesnake with no fear as you went to chop it's head off with a hoe or else the rattlesnake would sense your fear. I learned Spanish cuss words from some of the other workers and that came in handy around my parents. I learned how to jack-knife a truck and trailer and how to make Mike laugh about it even though he was seething inside. Most importantly I learned that there is no job too small. Pancho, Jackson and some of the other adults made it their life work to be farm hands. That's not an admired profession but they approached their work with dignity and pride. And I watched as Maurice and Mike treated them with respect and kindness.

Just as I would never trade that summer living with my grandparents in Abilene, I would never trade the summers of spraying.

What summer jobs do you remember and what did you learn from them?
It's Monday afternoon. We just finished a feeding session. It wore Ira out and he is fast asleep. Ira is refusing the bottle. He will have none of it. He doesn't mind eating rice cereal from a spoon but 10 cc of that stuff doesn't get you very far so it looks as if Ira will be on a feeding tube for quite some time. Now we have to start thinking about what kind of tube we want Ira to be fed through: a NG tube which is what he has now through the nose or a G tube which is a surgically placed tube? We'll make it through the rest of this week and then have a meeting with Ira's neonatologist about all this.

Laura's mom flies in tomorrow. Not soon enough!