Tuesday, May 31, 2005

Step One

Step One

Step One of thinking about Ira coming home is trying to make room for him in our place. And making room meant that Sophia would need to move from the crib to a "big girl bed". She's an amazing sleeper and didn't mind the transition. She loves her bed and after a couple of morning explanations, doesn't get up until we come and get her.

We're still a long way away from Ira coming home. He needs to come off the Flolan (preferably) and his heart needs to respond to the Viagra. It's happening slowly.

He then needs to come off the CPAP. It looks as if this is going to take a while. When they re-tape the CPAP and suction him they have to take the CPAP off. Ira doesn't respond well with the CPAP off. So we have a while.

He then has to learn how to eat. He's currently being fed Laura's milk 24 hours a day through a tube in his nose. That will eventually need to be compounded into regular feedings and then he'll eventually need to learn to eat through his mouth. Many CDH babies have reflux issues so for some this is a long process too.

So while we are thinking about and getting ready for Ira's trip home, we have a good while before that will happen.
Baby Alex, the CDH baby we told you about, came through her surgery beautifully. She's already been extubated and we figure she'll go home very soon. Alex's family is incredibly sweet and it's been good to get to know them. We're happy for them.

Monday, May 30, 2005

Memorial Day 2005

Ira Lester Hays. We've come to know Baby Ira for who he is: a fighter, strong-willed, courageous, tolerant, patient, beautiful, sweet. I could go on. What you may not know is that he is a reflection of the men he is named after.

Ira Miles Lambert (he was known as “Top”) was born on March 16, 1914 in Lueders, Texas. He attended Abilene Christian College where he met his future wife, Gay Nell Schultz. They married and stayed in Abilene where Top worked with his father in the construction business. When World War II rolled around the Churches of Christ found themselves debating if it was proper to go to war. The historic stance was one of pacifism. So it wasn’t a surprise when Top was shunned by some friends for enlisting in the war.

Top was old compared to most in the army and was quickly given the name Pappy. Top went overseas in 1943 and was on the 1st wave into Okinawa as captain of an artillery unit. Top was fortunate to come home and eventually retired as a major. Top was my maternal granddad and he spoiled me rotten. When I visited him in Abilene I got whatever I wanted at Athletic Supply and we always stopped by the local toy store. He later fought heart disease bouncing back many times when he wasn’t given much of a chance. Granddad passed away on November 3, 1998.

Lester Phillip Heintz was born on August 16, 1913. He was raised on a farm in St. Louis County. Lester worked on the farm into his twenties. It was during this time that he met Irene Rohmann. He and Irene eventually started a little bakery in St. Louis. Harvey, Lester’s and Irene’s only son, would never really know his father. Lester was drafted into the army and killed in action at Marigny, France on his birthday, August 16, 1944 at the age of 31. Irene said about her husband that he was out-going, friendly, easy going and always looking to strike up a conversation. Lester would agree to go and do almost anything, according to Irene. When I try to get a grasp of what Lester must have been like, I take a look at Harvey. Harvey is a giant of a man who is gentle and loving; whose soft-spoken words are full of wisdom and compassion.

Ira Lambert and Lester Heintz. These two men are not forgotten because there is one who carries their names and is in the process of becoming like them. We couldn’t ask for anything more.

Sunday, May 29, 2005

I got ups!

I got ups!

We had a good weekend. Ira did quite well on Saturday and Sunday. It's not uncommon for Ira to be visited by a doctor or nurse who took care of him the first couple of weeks of his life. Their reaction is always the same: "wow, this kid is strong!" I can't count how many times he's been called the "miracle baby" either. It's good to hear all that.

Sunday night we got out with the Brooklyn church plant, Christ's Church for Brooklyn. We met in Ft. Green Park. We ate food, tossed the hardball, played frisbee and just hung out. There was no singing, no formal praying, no sermon. And we called it church.

The pic above is testimony to my wife's leaping abilities, and in flip-flops! Laura and I were able to release a bit of tension through play and we found ourselves laughing a lot with the group.

Friday, May 27, 2005

A dear friend who is seven/eight months pregnant and has her own two year old volunteered to watch Sophia today so that Laura and I could spend time with Ira together. We owe this friend in a big way!

Ira is doing well. Laura and I, for the first time, are able to talk about a future with Ira. Things have been so tenuous that we haven't been able to see that far ahead. But now that Ira is continuing to get better Laura and I have to think about welcoming him into our home.

Besides little bootties to keep his feet warm in the hospital Laura and I have not bought a thing for Ira. No clothes, no diapers, no car seat, no toys to call his own, no nothing. Some might think this unpreparedness is a lack of faith. For Laura and me it is simply a case of only being able to think about one thing at a time.

We're not stressed about this. We still have plenty of time as one of the surgeons keeps reminding us, "we still have a long road ahead." I long for the day that he comes home.
Pray for Baby Alex on Saturday morning. She is Ira's new roommate and is having her CDH repair on Saturday morning. They are a sweet family and Baby Alex is doing quite well. Her hernia is not severe.

They immediately recognized Laura and me because we were already in the NICU when they took their tour of the NICU five and a half weeks ago. Ira was on ECMO and the Dr. who was giving the tour pointed Ira out and the ECMO. They said that they were glad that we were still around. We are too!

Thursday, May 26, 2005

Just got home from the hospital. Ira is doing good. He had a good night and is having a good day thus far. Yesterday's ecco test showed that Ira's heart function was good but that the pressure was still a bit high. So today they are going to try a new course of action.

They are going to put Ira on an oral medication called Sildenafil. It's also called Viagra. Heard of that before? Yep, that's right, my boy is going on Viagra. Crazy, huh? Click here to read about how Viagra helps patients with pulmonary hypertension. As Ira loads up on Viagra they will start weaning him off the Flolan.

He's getting fed 20 cc of Laura's milk and he is handling it just fine. He is completely off the TPN and was weighed in at 7 pounds and 11 ounces on Tuesday.
Ira got his sixth different roommate today. I overheard the doctors and nurses saying that she is a CDH baby. Everyone was busy getting set up and then receiving the baby. I hope to meet the parent(s) soon.
"How are you and Laura doing?"

Do you really want to know? I mean, I'm sure you care and you really are concerned for us but what would you do if we told you the truth? How comfortable or uncomfortable would you be with the truth? How accepting or condemning would you be if we revealed our truest selves/feelings?

Wouldn't you rather us give you a "fine" or "okay" or a "hanging in there" kind of answer and leave it at that? Wouldn't you feel good if we quoted some feel good scripture like "we haven't been given any more than we can handle"?

Thing is, sometimes the only answer Laura and I can muster is a simple "fine" or "okay" but there are times when we have so much to say but we find it better to be somebody else for your sake.

The Dave Matthews Band says it best in their song So Much to Say:

I say my hell is the closet I'm stuck inside
can't see the light
and my heaven is a nice house in the sky
I got central heating and I'm alright
yeah yeah yeah can't see the light
keep it locked up inside don't talk about it
t-t-talk about the weather
yeah yeah yeah
open up my head and let me out little baby
'Cos here we have been standing for a long long time
can't see the light
treading trodden trails for a long long time,
time, time, time, time, time, time

I find sometimes it's easy to be myself
sometimes I find it's better to be somebody else

I see you young and soft oh little baby
little feet, little feet, little hands little baby
one year of crying and the words creep up inside
creep into your mind yeah
so much to say, so much to say, so much to say, so much to say
so much to say, so much to say, so much to say, so much to say
'Cos here we have been standing for a long long time
can't see the light
treading trodden trails for a long long time...........

I find sometimes it's easy to be myself
sometimes I find it's better to be somebody else

so much to say, so much to say, so much to say, so much to say ohh
so much to say, so much to say, so much to say, so much to say
little baby ahh
so much to say, so much to say, so much to say, so much to say
little feet little hands little baby
so much to say, so much to say, so much to say, so much to say

open up my head and let me out little baby

I've sat by Ira's bed attempting to come up with different greetings but they all fall short of the standard "how are you doing?" greeting. So please don't stop asking because Laura and I choose to believe it is a real sign of your concern. Just know that we have so much to say but find it easier, at times, to be somebody else.

Wednesday, May 25, 2005

First Family Photo

This pic was taken this morning. We get to hold him every day now and it's a pure joy. However, it's also a little nerve-wracking holding him with all the wires and tubes knowing that he could de-sat at any moment.

Interesting how Sophia is keeping her distance, huh? This was her first time to see me holding Ira and she wasn't too sure about it. Click on the picture and go to my Flickr account to see a pic of her tickling Ira's feet. It's the first time she willingly touched Ira.
Ira had a pretty hard night last night and is having a hard time resting today. He's really having to work extra hard with the CPAP. His little body just isn't used to doing this much work on its own.
So Laura was hanging out with Ira yesterday when Dr. Stolar walked around the corner with a college-aged kid with him. Turns out this kid, Brendan, is 22 years old and was the first baby at Children's Hospital of New York to be placed on ECMO. (For those of you out of the loop, ECMO is a heart-lung machine.) Brendan was the ninth in the world to be put on ECMO and only the sixth to survive it.

Dr. Stolar's words:

In 1983, ECMO was an experiment. The devices used were investigational and not approved for human use. We had experience only with lambs. In fact, we took the father to the lab to see a lamb being supported with ECMO before he would agree. We had no consent forms or approval from the human experimentation committee. We used the same equipment from the animal lab on the baby as we had none other.

Dr. Stolar and his colleague stayed with Brendan 24 hours a day taking turns doing 12-hour shifts. Brendan was fortunate to have Stolar on his side. And we are too. Ira benefited from the growth and development of the ECMO and is officially ECMO patient #317 of Children’s Hospital of New York.

Oh, and if you are wondering what Brendan is up to these days he just graduated from Brown University - an Ivy League school - with a degree in computer engineering. Ira, no pressure or anything but...

Tuesday, May 24, 2005

The CPAP Baby

The CPAP Baby

This is Ira on the CPAP. It may not seem like it is less invasive than the ventilator but it is, trust me.

I got to hold Ira yesterday but it was before Laura and Sophia showed up with the camera.

It was a pretty long night for Ira's nurse last night. His secretions are pretty high which means he needs to be suctioned quite a bit. His gas test came back early in the morning and the CO2 intake is a bit high so they are keeping an eye on that.

Monday, May 23, 2005

Extubated! Ira’s been extubated! Or in laymen terminology Ira is now off the ventilator! They started talking “extubation” this past weekend but Laura and I didn’t get our hopes up. When I walked into the NICU this morning Ira’s neonatologist was at the bedside and told me they were going to extubate. I couldn’t believe it. They were, of course, waiting for Dr. Wung to do the procedure. Dr. Wung came in before the lunch hour and I asked him if he thought Ira was ready for extubation. Dr. Wung replied, “he can’t go to school with that thing in his nose.” And so they took him off the ventilator and put him on the CPAP. And so I heard Ira cry for the first time in his little life. And so I held Ira for the first time in my life for about an hour. And so it was a good day.
The CPAP is a device that helps Ira breath but Ira is doing most of the work on his own. It is much less invasive than the ventilator as it doesn’t require tubing down the throat; hence, hearing Ira’s voice for the first time ever.

Ira was actually having a hard time when we left this evening trying to adjust to this new device. And the ventilator has not been moved just in case he needs to go back on it. Let’s hope he can make the transition.

We were hoping to be off the Flolan today and while Ira's heart is functioning well, the high pressure is back so the Flolan keeps flowing. Ugh. But hey, we'll take our (his) victories where we can get 'em. Ira Lester is making his great-grandfathers proud.

Sunday, May 22, 2005

It's Sunday morning and Ira's doing well. He's been resting quite a bit as if recovering from all the sticking they did earlier this past week. Dr. Stolar, Ira's surgeon, stopped by on Saturday afternoon and said that Ira's heart is improving. It's not normal yet but improving. He said Ira was doing "better". We'll take it!
On another note, Laura and I were able to get out and see Episode III of Star Wars. I gotta say, we weren't as impressed as everyone else and their dog seems to be of this movie. It is by no means the equivalent of the Empire Strikes Back. I wonder if it has anything to do with the merciless Brooklyn crowd we saw it with. The crowd laughed at the love scenes between the incredibly wooden Anakin and Padme and roared in laughter when a prominent character shouted "NOOOOOOOO". I was not convinced of Anakin's turn to the Dark Side. So maybe we were influenced by the audience we saw it with but I can't get over the wooden-ness of the acting and the poor dialogue.

Saturday, May 21, 2005

Ira is one month old today. I can't believe it's already been a month. It isn't uncommon to see parties being thrown for NICU babies who reach the one month mark, two month mark, etc. We don't have a party planned but are extremely thankful that we have had this time with Ira. We pray for many more months with him.

Friday, May 20, 2005

Laura here. Ira has had a good couple of days. He has slept alot because his body is working so hard. The doctors have been able to increase his milk intake to 10cc an hour (there are 30cc in an ounce) and he is tolerating that ok. They have also decided to start turning down the Flolan very gradually as long as he can handle it. He is down from 20 to 18. The nurse on duty last night said he was awake alot so I instructed him to get his days and nights figured out before he comes home.

Sophia has spent the last couple nights out on Long Island with her cousins(Joe's sister and her family). They are moving in a couple weeks and this was her last opportunity to hang out with them. She will miss them but her mommy and daddy will miss them even more. We have been so blessed to have family an hour away.

Wednesday, May 18, 2005

Ira finally got his PICC line. Dr. Wung started working on Ira around 6 PM tonight. It took the good doc three hours to get the PICC line. It's on the left side of Ira's head. Because of its placement Ira now has a mohawk. Literally. I tried to tell Ira that mohawks went out in the '80s but it didn't change the fact that Ira looks like a white version of Mr. T.

When I went in at 9 PM to see Ira he suddenly woke up. I was able to sit at his bedside as he stared into my eyes. I told him all about Yankee baseball (more on that in a minute), sang to him and told him stories about Sophia.

At one point I began praying for him. It was the "Healing Power of Jesus Christ" prayer that I mentioned in my April 20 post. It was so serious a moment and Ira was staring intensely into my eyes. As soon as I said the last word, Ira let out a string of farts. (sorry, grandmom, for saying “farts”) I just laughed. It's the first time I've laughed at his bedside. I've smiled but never laughed.

He didn't want to go to sleep but finally did after an hour.
I've been asked about Baby Ava and Baby Lily. You might remember that Baby Ava was born two days after Ira and had a left-sided CDH like Ira's. Baby Ava went home with her parents on Tuesday. She is doing extremely well. But still keep them in your prayers as they adjust to life at home. Baby Lily bounced back from her crash. The last I talked with Lily's mom Lily was back on track with the feeding, etc. She is off the ventilator and nitric oxide and back on the CPAP. (By the way, Dr. Wung is known as the "Father" of the CPAP as he has helped refine the machine and the parts that go with it.) Lily is doing well these days. Keep Lily's mom in your prayers as she is exhausted, I'm sure.
There is question as to my Yankee allegiance. How can a West Texas boy be a Yankee fan? Blame my dad. He saw Mantle hit a homerun, Yogi catch and Whitey Ford pitch when he attended a Yankee game on his first marriage anniversary. He passed on his love of Yankee baseball to me. I started following the Yankees in the '80s as I watched Donnie Baseball, Dave Winfield and Ricky Henderson mix it up. Some would argue with me but there is no better place to watch baseball than in Yankee Stadium. I have yet to make a game this season but am dying to take Sophia soon. Even as I type the Yankee/Mariner game is on in the background and it looks like the Yanks are on to their eleventh victory in a row. [The Yanks lost late in the game due to some costly errors. But what do you expect from a team whose been on the road for the past week and a half? They are back in the Big Apple this weekend. I still claim that we're back, baby!]
Every day I update Ira on the state of the Yankees Nation. Today I'll be glad to tell him that the Yankees won their tenth straight game behind a Pavano complete shutout game. The swagger is back!

If you read my last post you know that Ira lost his PICC line on Sunday. Two resident fellows attempted for three hours to put another PICC in Ira that evening to no avail. Ira was not happy about it, was poked all over and had a hard Sunday night and Monday morning. Another resident fellow attempted on Monday to insert the PICC line, again, with no success. And yet another poke and once again, Ira was not happy about it. And when Ira is not happy he de-sats (saturation levels come down) and keeps us all very busy.

He finally calmed down late Monday night and started to rest easy. I arrived at the hospital at lunch on Tuesday. Ira had a new nurse who immediately told me that a resident fellow would be coming by to shave Ira's hair in order to insert a PICC line in his head. I immediately balked. It was the first time I got angry with the hospital staff. I did not want another resident fellow fresh out of med school attempting this procedure with my son again. I wanted Dr. Wung, the more experienced Dr., to come do it. It was evident that I was not happy about the situation as I demanded to speak with the neonatologist. The nurse was taken aback by my insistence and hesitantly said, "I'll get the doctor for you but don't be unreasonable."

ARE YOU KIDDING ME? Laura and I have been incredibly reasonable throughout the past four weeks. We haven't complained or balked or questioned decisions once. Could she not see that Ira had been stuck at least 10 times by these resident fellows? I was fuming.

I didn't wait for her to call the neonatologist. I went and found him and explained the situation. He said, "sure, let's wait until Dr. Wung gets back into town and let him do it." It was that easy. I appreciated his understanding.

So Ira continued to rest on Tuesday afternoon recovering from Sunday night's and Monday's disasters. The image of the disciples trying to heal the boy as Jesus was being transfigured came into mind the past couple of days. The disciples were unable to make it happen. Finally Jesus came down from the mountain, shoved the disciples aside and healed the boy.

Now I'm not saying Dr. Wung is Jesus but dang, the doc is amazing.

Monday, May 16, 2005

Ira's had a hard couple of days. His PICC line came out on Sunday. They worked for three hours that day trying to replace the line with no success. Ira was stuck many times. I was upset that they tried as many times as they did. He hasn't been the same sense. Another doctor gave it a go today with no success. He wasn't happy about that either. When Ira gets agitated his numbers drop and the ventilator is turned up. He hasn't rested much over the last 24 hours.
Baby Khadera's story is amazing. Her mom, Sheri, is a gospel singer. (You can find out more about her here.) She wasn't sure if she should come to NYC from her home in Memphis to do a gig being six months pregnant but decided to do it at the last minute. She did the concert on Friday night and called her husband, Dion, on Sunday to announce that she was having contractions. Dion wasn't convinced at first but soon found himself on the plane to come see his 1 pound, 10 ounce baby girl who was born three months early.

Khadera Zion ("beautiful city of God") was born on February 27 and still remains in the NICU at Children's. Sheri and Dion believe it was God's will that she be in NYC near one of the country's best NICUs in order to help Khadera through these important first few weeks and months of life.

Laura and I have been blessed to talk with Sheri and Dion and pray that they will get to take Khadera home soon. Things are looking good as Khadera now weighs over four pounds and is getting healthier and healthier every day.

Sunday, May 15, 2005

Nice scar, huh?

chillin' 2

I thought I would post this picture so that you could get a good look at that ab scar and neck scar. Pretty mean looking, huh? Did you know Ira's heart is on the right side of his chest? His chest is a little lopsided and always will be due to this abnormality.

Ira had a good night. During the night they started feeding Ira Laura's milk (yep, she's been pumping this entire time...even in the middle of the night) via a tube through the nose that goes directly to his stomach. It's only a small bit (1 cc/hour) but he's tolerating it which is yet another good sign. Laura reported to me that Ira experienced his first tummy time this morning and didn't mind it. This too is good. It's been a good couple of days for us.
Laura's mom is leaving tomorrow, Monday, so Laura and I decided to use our last opportunity of free, convenient babysitting and went to a movie the other night. We wanted to lose ourselves in some other person's story and free our minds for a bit. What we needed was a nice, silly, entertaining flick.

So don't ask me what I was thinking when I pushed that we go see CRASH. The first indication that this movie was neither nice, silly nor entertaining should have been the title itself. The second indicator should have been the first line of the synopsis I came across which began as follows: "this controversial drama..." HELLO!

We were tense the entire time. The movie doesn't give you, the moviegoer, a break. It challenges your perception of race relations and then does it again and again and again. It probably wasn't what we needed but it did provide us with good conversation on our walk home and I haven't been able to get some of the images or issues out of my head since. It's a must see for those concerned about God's people coming together. But don't expect something nice, silly or entertaining.

Saturday, May 14, 2005

I see you

I see you
Originally uploaded by joechays.

Ira had a good night on Friday night. So good in fact that Ira's veteran nurse allowed Laura to hold Ira for about 10 minutes. It was heaven. He was alert and didn't mind it. He did mind the move from the bed to Laura's arms but once he settled in it was all good.

Ira's tolerating the absence of the nitric oxide which is good. One of the surgeons passed by and said, "looking pretty good."

Click on the pic above to see more pictures of Ira. And check out his mean abdominal scar in one of the pictures. Yeah, he's from the streets of Brooklyn.

Friday, May 13, 2005

Thursday was a difficult day to interpret. It started with a visit from Ira's neonatologist. He has held off on talking to us for quite some time giving the impression that he's not too personable or his bedside manners aren't too polished. I was relieved to hear him say that he wanted to make sure he was on the same page as Ira's surgeon before he talked with us. He went on to paint a grim picture. He wasn't optimistic in the slightest and his nonverbals spoke louder than his verbals. The summation of what he said was that Ira wasn't getting any worse but wasn't making any progress either. In lieu of that, they were going to start weaning the nitric oxide (NO) soon just to see how Ira would respond.

Just a couple of hours later Ira's blood/gas test came back with numbers we had never received. The numbers indicated that Ira was doing work on his own and probably didn't need the NO or ventilator. They immediately brought in a doctor and we started the weaning of the NO. There was an excitement in the nurse and doctor as they went to work to manipulate the machines.

It was hard to make sense of the early morning conversation and the blood/gas test that looked so good.

They turned down Ira's NO and reconfigured Ira's ventilator where Ira would be breathing on his own with help from the ventilator. I got to see Ira breathe on his own for the first time in his life. He was working so hard and working muscles and parts of his body he has never used.

Anyway, they turned off the NO tonight. Ira didn't seem to respond well but we got him calmed down. His ventilator was turned up a bit more but that was expected. This is a huge step and we're anxious to see how his night goes.

Thursday, May 12, 2005

My mom was here for Ira's birth and recently came back. She's been with us this past week. She'll leave to go home to Texas this weekend. Laura's mom will leave early this next week after having been with us for four weeks. Our dads had work to attend to and are back in their respective homes. My Texas sister had to get back to be with her family and take in another foster baby. Laura’s older brother had to get back to family while her younger brother had to contend with finals and now a short course at college. My Long Island sister is frantically getting ready to move to Atlanta. All of these family members keep asking us with nervous confusion, "Does it feel like we are abandoning you?"

And this is what is hard about our surreal situation: All around us life keeps going, moving. It doesn't stop. But for Laura and me life has stopped; life is on hold; life is mired in tar not allowing us to move at any significant or noticeable pace. As Laura and I look around we see the movement of everyone else, everything else and it looks as if it's all moving at a hurried pace while we’re stuck in slow motion.

It's hard making sense of all this. There's the selfish part of me who wants others to put their lives on hold too. I want their attention. I want their help. Really I just want them to feel what we are feeling. There's another part of me who wants to jump back into the hurried pace and get on with life and leave all this behind. I've sat at my desk at work and opened theology and church planting books hoping to get swept up again. And there is another part of me that wants to find that illusive balance I talked about in my May 4 post.

But the more time we spend in the NICU the more I realize that we are going to live for quite some time in this surreal world where for us, time has stopped and life is on hold. We often joke around with other NICU parents that we don't know what day it is as it seems like our time there is one big, long day. Time as we know it is like one breath being taken: a big, long inhale followed by a holding of the breath and then...slowly...the...exhale.

Wednesday, May 11, 2005

Ira's surgery went well. It was pretty routine which is what you want to hear as a parent. There was question of whether Ira would have the surgery or not because of his hard day yesterday but he was pretty stable throughout the night and this morning. They finally got to him around 1:15 PM. It took about two hours. Ira is sleeping pretty hard from the sedation.

You might remember my May 7 reference to Noah Whaley. His Uncle Steve is a good friend of mine who came from Houston to be here for Ira's birth and first few days. Steve went home in time to witness the birth of his nephew in Houston. It was discovered quickly that Noah had problems. Through the blog world we connected with Ethan and Julie, Noah's parents, and shared our NICU experiences. Steve called us tonight to let us know that Noah passed away today, May 11. Keep the Whaley and Eller families in your prayers.
Ira is scheduled for surgery at 10 a.m. this morning. They will attempt to remove the patch on his abdomen and pull the skin together. According to the doctor, this is no small surgery as it carries high risk. When they pull that skin together they will have to make sure those newly placed parts - the stomach, spleen, intestines, etc - don't start creating more pressure on the lungs and hearts and cause Ira to crash. Even the physical movement of Ira from his present location to the operating room carries risks because they have to transport his nitric oxide tanks, his ventilator and his flolan. So the joke, "how many doctors does it take to move a baby?" is no joke. We watched them move him for his CDH repair and it's incredibly tense. Ugh.

To top it off, Ira had a hard day yesterday afternoon. They tried to go down again on his nitric oxide and he didn't respond well. It was a hard afternoon yesterday. I didn't want to leave last night.

Tuesday, May 10, 2005

I spent a good amount of time on Saturday afternoon talking with a couple of NICU nurses. They asked me the following: "After being in this environment for two weeks and taking it all in, don't you think this is a strange place?" I chose my words carefully. If I said, "yes, this is a strange place," then it could have been interpreted by the nurses that their own selves contributed to the strangeness; therefore, making them strange. If I answered, "no, this isn't so strange," then there was the possibility that I was somehow lessening their work experience equating it with other mundane professions. Okay so I was overanalyzing the question but this is what came out of my mouth: "it's strange in that it is so intense. There aren't many jobs out there that require this much attention and deal so heavily in the realm of life and death."

One nurse liked the answer and direction of the conversation and added: "this job has changed my perspective on life. I don't worry if my son comes home with a 'B' in math or if I get a bigger house with more space or a nicer car because I'm just so happy that my family is alive and healthy. That's what matters. That's what this job has taught me."
Some observations I've made while "living" in the NICU:

1) Reality! Not all these babies go home. I was talking with the dad who has been here for three months and counting. He's seen babies who have not made it. I have yet to see that but I know of families who are having to make very difficult decisions. This reality makes church conversations about whether or not we should use instrumental music or who's in and who's out seem ridiculous. The reality of NICU is that these innocent beings are struggling for life. Some make it and some don't.

2) Shhh! The nurses take their jobs seriously and have high ethical standards they observe. I learned quickly not to ask the nurses about other patients as they will not say a word. I'm pretty sure they would withstand interrogations of the worst kind without forfeiting any information. Those of us in counseling positions should learn from this group of nurses about what confidentiality means.

3) Amen! You've heard it said that there are no atheists in foxholes at wartime? The same could be said of parents in the NICU. In the many conversations I've had with other parents God comes up every time (and most don't know that I'm a pastor). And these parents are genuine. They aren't faking it. It's not that it's convenient because I'm pretty sure they are as pissed as I am that their babies are struggling. It's just that while the technology is incredible and our health care professionals are outstanding there is an assumption that there has to be more at work here to get these babies better.

Monday, May 09, 2005

Ira is pretty stable these days. Nothing really changed over the weekend. Weekends in NICU (and probably other hospital departments too) are pretty slow. That's nice because things are a bit quieter but a little nerve-wracking since your favorite docs aren't around. Here is where Ira stands as of today:

He is still ventilated. He isn't using nearly as much of the machine as he was a week ago. Instead of hovering around the 70-80% mark he is using around 40-50% of the machine. That's pretty good. He is still being medicated with nitric oxide and flolan (prostacyclin) but has been weaned from the milrinone. All these medicines treat Ira's pulmonary hypertension...which is still an issue. I talked with Dr. Stolar today and he said Ira's heart is still a concern. It's still working pretty hard and this is obviously not ideal.

The ECMO machine required that two significantly sized cannulas be placed in Ira's neck. (You can kinda see those cannulas in the pic on Apr 25 and the bandage on Apr 30.) They took those out recently and closed the area with stitches. They took the stitches out this past Friday. Ira will have a mean looking scar on his neck.

The surgery to repair Ira's hernia required an incision right below the left rib cage. They then were able to pull down the stomach, spleen, intestines, etc and put them into their respective places in the abdomen area. However, the skin in that area wasn't enough to close the incision so they patched Ira temporarily with a goretex patch. (Did you know goretex had so many uses?) So he has this goretex patch that will be removed and the incision closed up within the next couple of days.

The next steps are these: Ira needs to be weaned from the nitric oxide and then the ventilator. The flolan might be something Ira goes home with. Finally, Ira will need to learn how to eat. Let me give you an example: our friend, Baby Ava, has made significant strides. She is learning how to eat but because she didn't develop that naturally upon birth she doesn't know how. The first time she was given a bottle, she got some of the milk in her mouth and just kept it there. She didn't know what to do with it. Wow, huh?

And just when you think things are going good things turn. Our friend, Baby Lily, "crashed" this weekend. Whereas she too was making significant strides one of her lungs collapsed this weekend and was immediately back on the oscillator, nitric oxide and milranone. (Lily's mom does not mind me sharing this and would appreciate your thoughts/prayers.) Lily's been in the NICU for six weeks and counting. Lily's mom is one of the strongest and most determined people I know. Laura and I have learned much from her.

Saturday, May 07, 2005

Click this link for a great story about two CDH babies in Boston. It might help you understand CDHs a bit more and it's a feel good story. By now, don't we all need a little feel good in our lives?

We're back to the waiting game. Whereas there was a lot of action the first week of Ira's birth we are now at a point of just waiting to see how these medicines work. Therefore, there isn't much to report. Thanks for your prayers.

Some of you know that I had a friend from Houston come up and spend a few days with the Hays/Heintz family during Ira's birth. It was a great thing to have him around. My friend returned home to Houston and a few days later his sister gave birth to a baby boy, Noah. It was decided quickly that something wasn't right with Noah and they weren't sure Noah would make it. (You might have read Noah's mom's comments on yesterday's post.) Check out their blog and when you pray for Ira, lift Noah up too.

Thursday, May 05, 2005

Not much to say about Ira's day today. The pediatric cardiologist is excited about Ira's numbers and wanted me to tell Laura that it "looks great". Then the surgeons came by and were much more somber and cautious. I even confronted them about the difference in their attitude and the cardiologist's attitude. They said that when a CDH baby gets this far and is still this dependent then the results are mixed; therefore, they felt it was honest to be guarded and concerned. Ugh.

Laura wrote the following and wanted to share it:

I put mascara on today. I think it was my way of saying that today was going to be a good day; that I wasn’t going to cry to the point that it would all run down my face. It’s the end of the day and I still have it on. I guess its been a “good” day, for me anyway.

I walked with Sophia to the park this afternoon and all I could think about was that I should have two kids with me now. There is a certain void everywhere I go that will only be filled when and if Ira comes home. I was telling Joe a couple days ago how weird it is to go from being pregnant to not. To go from everyone staring at me (I was just so big) and giving me their seats on the subway (most of the time) to becoming just another face in the crowd. Usually new moms have their baby in tow like a trophy they can show off to those around them of what they’ve been through. I have nothing. I walk around knowing I had a baby two weeks ago but nobody else knows. It makes me wonder what burdens those around me are secretly carrying in their heart that nobody knows about.

Ira is so beautiful. I love the smell of his skin. I love to stroke his black hair. I love to kiss his cheek and let his little fingers wrap around my one. I long for the day when I will get to hold him, when my touch won’t cause him to de-sat (de-sat = fits = plummeting stats). I wait for the time when his cry will no longer be silenced by tubes but will be heard by everyone around.

Wednesday, May 04, 2005

Laura and I are trying to figure out our new norm. We're attempting to figure out how to balance family life at home, time with Ira and my work. It's hard to know what's right because nothing feels right.

It doesn't feel right to leave Sophia in the morning even though she is in great hands with her grandmother. It doesn't feel right to leave Ira in the afternoon to come home even though he is in great hands with the world's best nurses (I truly believe that). It doesn't feel right to neglect the Brooklyn church plant, Christ's Church for Brooklyn, even though there are quality leaders taking over and pushing forward. I guess this is the new norm Laura and I are trying to settle into...but it just doesn't feel right.
Ira had a good day. "Good" has been re-defined by us. It now means this when applied to Ira: he was peaceful most of the day without too many instances of de-satting (de-saturation) and generally stayed stable most of the day. I was able to be hands-on again this morning changing his diaper, taking his temperature and helping turn his head. We turned his head and it was the first time we got to see the left side of his head. It was flat as a pancake and Ira wasn't sure about it to begin with but soon went to sleep. He laid for 12 days on the left side of his head so this has got to feel different for him.
I mentioned that Sophia was begin taken care of by her grandmother. I can't express to you how nice it's been to have Laura's mom here willing to do just about anything we ask of her. I'm sure Kay is missing home (St. Louis), her husband (Harvey) and her church family (Mid-County Church of Christ). I'm sure she is tired of chasing a very active two year old around. I'm sure she is tired of her annoying son-in-law. I'm sure she longs for some time to herself. But she just keeps pressin' on. God bless her.

Tuesday, May 03, 2005

Yankee Fans!

Yankee Fans!

This is our first evening at home as a family since Ira's birth. I thought it would be great for Sophia to try on her new Yankee hat. The hat is compliments of her Gram and Granddad. She loves it. When you ask Sophia who her favorite team is she responds with incredible enthusiasm and her arm lifted high, "YANKEES!"

Ira had a good day. Ira's nurse invited us to be hands-on today and so we jumped at the opportunity. We stroked his hair when he got upset at the poking and prodding; wiped his slobber; and helped change his different wirings, etc.

We'll know more tomorrow about the effects (if it's working or not) of this new medicine. We are quite sad these days but we're hoping that being with Sophia tonight will lift our spirits. You can probably tell from the pic above that my smile is forced but we're working on it.

Monday, May 02, 2005

Ira's surgeon's words were these tonight: "I told you I would let you know when I'm worried: I'm worried.

You already know that Ira has had difficulty being weaned from the ventilator. And you know that they began treating Ira with nitric oxide hoping that it would help the flow of blood. They put him on a second med last night called milrinone hoping that it too would help the flow of blood and loosen things up a bit. But all of this resulted in no change in Ira. His pulmonary hypertension is our main worry. Ira's heart is working extra hard to force the flow of blood and if it continues to work this hard, Ira's heart will fail. Tonight they introduced yet another drug via IV called prostacyclin. Normally prostacyclin is used in adults and at times in infants but hardly ever in CDH babies. Ira's surgeon, Dr. Stolar, said they have gone to this measure only four or five times with CDH babies. The outcome? One baby went on to do well.
Laura and I live on the second floor of a brownstone in Brooklyn. Our landlords live on the first and fourth floors.

Jack and Delores are not your regular retirees. They didn’t move from the city to the suburbs for more land and more space after retiring; they moved from the spacious suburbs back to the crowded city. They both were born and raised in Brooklyn. Jack remembers Jackie Robinson breaking baseball’s color barrier for the Brooklyn Dodgers and Delores remembers the good ‘ol days when Brooklyn was more intimate and not so chic. Jack is a retired fire fighter of the FDNY whose ears perk every time a siren is heard and tears up when talking about 9/11. They claim they moved back into Brooklyn to stay young, informed and within reach of museums and shows.

They live on the first floor and bought the brownstone with their son Erik who lives on the fourth floor. Erik was a member out at my sister’s and her husband’s church in West Islip. Erik is the neighborhood historian who can tell you, in detail, the history of Boerum Hill, the neighborhood in which we live. He is now part of the Brooklyn church plant, Christ’s Church for Brooklyn.

I can’t even begin to tell you about Jack’s, Delores’s and Erik’s generosity and kindness. They have been more than our landlords. Delores has watched Sophia for us and Jack is quick to help us carry in groceries when we have a big haul. Erik allows us to use his washer/dryer free of charge and has even done some of our laundry during this journey with Ira. It’s not unusual to get a card from Delores or a knock on the door from Jack seeing if everything in the apartment is working correctly.

And as if that isn’t enough on the third floor lives the other renters, Yael and Bryan. They too are filled with graciousness and kindness. Yael is a third year law student and Bryan is in a MBA program at NYU. They have watched Sophia, walked our dog, baked us cookies, loaned us books and DVDs and are just about willing to do anything we ask of them.

Through this journey with Ira it’s nice to know that good people who genuinely care about us and our well-being surround us. It’s good to know that when we come home at night after a long day at the hospital friendly faces will greet us. We are blessed to have these people in our lives.
Ira had a hard morning on Sunday. It wasn't a surprise as Saturday was a hard day for him. In spite of his stats (or numbers) being low he spent a good thirty minutes wide awake this Sunday morning. Laura and I stood there with him holding his hands and singing to him. I was relieved to tell him of the win the Yankees finally experienced on Saturday. We taped a picture of Sophia to his bed.

After lunch the neonatologist came to me and told me that he was "concerned" about Ira.

Ira was heavily relying on the ventilator and wasn't making any progress in being weaned from it. In fact, the opposite was happening. While the nitric oxide gas was helping a bit, it wasn't enough. The morning x-ray showed that Ira had collected too much fluid in the chest and the neonatologist was suggesting to the surgical team that some of the chest fluid be drained. The second problem was that Ira's right ventricle in his heart was not fully working. Because of the pulmonary hypertension the right side of Ira's heart was not being able to do the work necessary. He suggested that Ira go on another medicine along with the nitric oxide to help that problem out.

If these two measures (draining and the added medicine) didn't help they would have to put Ira on the oscillator (another type of ventilator). If that didn't work, the doctor said, there was nothing else that could be done.

The surgical team did drain the fluid in his chest and they immediately saw good numbers. The use of the ventilator came down significantly this evening and Ira's stats were pretty good; not great, but good. For now they are not using the extra meds.

This roller coaster is quite ride. I'm a fan of most roller coasters but definitely not this one.