The Stockdale Paradox

With the dawn of the New Year, it’s fitting to take stock of our situation and do some assessment. So much has happened with each week; and sometimes each day has such unexpected twists and turns that, as I drove down the coast today, I tried to assess things on a larger perspective. Trish and I often find ourselves trying to give answers to general questions people naturally ask about Rudy’s condition. As natural as these questions might be, they are difficult to answer in Rudy’s case. We’re encouraged because he’s making progress so we can’t say he’s doing poorly; but is it accurate to say he’s doing “well” when he remains in an ICU facility reserved for seriously ill children.

This week, I realized the relevance of the Stockdale Paradox (Collins, Good to Great) to our situation. Admiral James Stockdale survived an extended POW ordeal while many around him perished or went insane with waiting. He credits his ability to maintain a dual mindset. First, he stoically confronted the brutal facts of his reality. Second, he held an unwavering faith that he would prevail despite the difficulties. For Stockdale, the brutal fact was that he was inhumanely imprisoned in an inescapable remote location without any assurance that his comrades even knew he was still alive. Yet, never losing site of this, he lived life with a mindset that he would one day be free. He speaks of the many who weren’t able to do this—who mistakenly thought they’d be able to escape the guards and then flee into an unknown jungle with no strength, gear or idea of which way to run; or who held forth arbitrary deadlines for release (“we’ll be home by Christmas”) only to get more demoralized as they passed with no change.

I’ve found it helpful to apply Stockdale’s mindset to our own situation. In confronting the brutal facts of our situation I don’t start with a scenario as grim as his, but we constantly keep in view the fact that Rudy is facing some very serious circumstances—just this week, HLHS claimed the life of another child here (even though he had passed through several of the milestones we haven’t even gotten to yet). It would be delusional for us to get complacent or lulled into believing that this is going to be easy: Rudy is facing something that should never be underestimated—it kills kids.

Yet, we are kept going by a sense that we will prevail over this. Everything I see the team doing is done with this in mind. There’s no trivializing what we’re up against, but every step is done because of a belief that we can prevail in the endgame—he will come off of all these machines, breathe and eat on his own and leave this hospital. We don’t know when (but do we ever wish we did!), so having had a major holiday milestone pass with us still at UCLA, we’re not going to arbitrarily hold out another. So we’ll try to keep moving forward holding an appropriate balance of realism and hope without approaching the poles of delusion or despair.

This has involved our letting go of any of our own timelines, and once we’re able to do that, we can see that Rudy has made steady progress on one of his own. Today was a great day, where I held him for two stretches of over two hours (loving those NFL playoffs). The team removed his arterial line and the Foley catheter so he only has two lines going into him (compared to something like six at one point). The team has been very slowly weaning the ventilator rate down (12 hr steps at a minimum) to where it’s currently at 20 bpm and he’s managing well. They’ve decreased his pain meds to a very small dosage, more to ease his withdrawal from them than to manage any discomfort, so he’s alert and twitching around just like a baby should. The chest Xrays are clear of fluid (we’ll see how that holds once they start feeds again). This week he weighed in at over 11lbs, which means the nutrition is doing some good—the bigger he is, the better chance he has of getting past some of these milestones.

Does this progress mean he’s clear of danger? No, but it does bring realistic hope. We’ll take it and thank God for it.

I Got MY Turn!

While my back left me a bit worse for the wear, I made the drive down here in pretty good shape and got back to the familiar surroundings of the CTICU. Great to see my wife and Rudy after the long hiatus.

I’ll skip right to the high point as nurses Aliza and Amy were very excited to give me my chance to hold Rudy. That didn’t come until after Trish left and some of his numbers got ironed out after a transfusion and a fever that needed to break. Really, really cool! Not to bemoan my lot, but in the delivery room there was only time for Rudy to rest on Trish’s chest for a few minutes before the neonatal team took him–so even with all maneuvering around tubes and wires, it was some of the best 45 minutes I can remember to hold him and let him look up at me past his chubby cheeks. Just like with Trish, he got nice and calm and I got to run my fingers all the way through his hair and feel his soft back pressing up against my hand with each breath. I’ve got pictures, but no cable–so we’ll have to post them next time Trish has the camera. She got to go first, but if all goes well I may get additional chances before the weekend is up as this could be a daily thing.

I had been prepared for Rudy’s puffy appearance from the TPN and steroids and just about every other person who comes in here assures us this will go away. He does look he’s doing that “even my dog is chubby” routine from elementary school. The docs are pleased that, since the chest tube came out on Wednesday, they did not have to replace it Thursday AM as they anticipated. So far the pleural effusions aren’t there–but Rudy’s been known to hold off a few days before on this kind of thing. The chest Xray this morning didn’t show much fluid either so, in addition to keeping the medications going, they are limiting his fluids as much as they can–the less fluid going in his body to start with, the less can accumulate on his chest. So we’re praying guardedly and fully content to let Rudy make his own slow progress, but it would be great to see this chylothorax go away without there needing to be any other chest tubes placed for drainage. Only then can we look at feeding and breathing on his own.

In the brief time Trish and I were together today (she looked hot, by the way), we did have a meeting with Dr. David Feinberg, CEO of the Medical Center. He had introduced himself to Trish a couple of weeks ago as he regularly makes walks through the hospital to meet patients and families and wanted to hear more abour experience and any feedback we had. So we had a nice 45 minute chat where we were able to both share our high regard for the team of people caring for Rudy and also speak to some of the things he wanted to hear about improvements they might be able to make in assisting families like ours. Always places to improve, but impressive institutions have impressive leadership–many thanks, Dr. Feinberg!

As upbeat as today was, I can’t end this post without sharing one of those simultaneous contrasts that make for such a loaded experience here in the CTICU. Right around the time I was getting the chance to hold Rudy, I noticed “the vibe” descend on the unit. It’s something that you might not pick up on if you haven’t spent weeks here, but all eyes started to focus the room next door–the one with the new little girl who we also suspect was an HLHS patient. Staff began to enter and exit frequently. Nurses covered for each other in adjoining rooms so the one there could have extra assistance. I could picture the focused intensity of the doctors in the room but all I saw were the others who stood outside with expressions very different from the lightness that befits a late Friday afternoon. Equipment and carts were rolled in–the brisk cadences sometimes evolving into running steps. And then later in the hour it became quiet…the staff carefully wheeled back equipment and doctors walked away slowly saying little. Professionals all, but some sure looked like they were going back about business with moist eyes. The parents I never got to introduce myself to walked away with tears streaming from theirs with only a small collection of belongings in a pink hospital tub. The drapes in the room were drawn when I left for dinner and, when I got back it was all too clean and empty. There’s rightfully much attention paid to patient confidentiality here but even without that, I dare not ask. Is there any possible reason they could have transferred her down to the NICU? This soon after a Norwood? Prep for a transfer doesn’t look like that. Our burden may be one of indefinite waiting, but I’ll readily assume it this weekend in light of what I fear others are having to endure.

This is indeed a savage monster. Today’s simple joy is all the more precious when I realize how fortunate we are even for this. Thanks for walking with Rudy in his fight.

Homage to a Hero: Dr. Brian Reemtsen

I’m usually not at a loss for words (as this blog would indicate), yet I’ve found it very hard to compose a tribute to the key member of Rudy’s team. There’s a tinge of pathos in saying that my son has the greatest heart surgeon in the world only because it assumes as a given that his condition demands it. I am sure no one here at UCLA would be offended by my saying that I would much rather Rudy have no need of any surgeon; but as that’s not our reality, it’s difficult to express the deep gratitude we have for Dr. Brian Reemtsen.

When we first learned of Rudy’s diagnosis of Hypoplastic Left Heart Syndrome we got several recommendations to seek treatment at Children’s Hospital Los Angeles (CHLA), but we discovered our insurance network was contracted with UCLA. While we were willing to fight to any extent necessary to get Rudy the right care we also realized the wisdom in reserving our energy for the most important battles, so we decided to do some due diligence and investigate UCLA—at least to have some grounds on which to base an appeal.

As I’ve already written, the initial responsiveness of Gary Satou and Dan Levi served as a remarkable introduction to the team at UCLA. Both spoke no ill of CHLA but also laid out what UCLA could offer—most importantly an expert surgeon, Dr. Brian Reemtsen, to do this very intricate surgery. Just months before, Dr. Reemtsen had come from CHLA to build a top-notch Pediatric Cardio-Thoracic Surgery program in the new Mattel Children’s Hospital at UCLA. They had high praise and said that they would speak with Dr. Reemtsen as he would certainly want to consult with us. This willingness was driven home the next day when Susan, his assistant, called to let me know that Drs. Satou and Levi had already spoken to Dr. Reemsten and he instructed her to call immediately to again affirm that he would make time to see us whenever we could get to LA.

Our first meeting with Dr. Reemtsen in September was no let down from the hopes we had built up. He took the time for a very thorough conversation, entertained any and every question and was straightforward about the challenging diagnosis we were confronting. He was empathetic, realistic and hopeful; able to put things into understandable terms and patiently allowed us to digest information and repeated himself if we asked.

We were forewarned of some the personalities we might encounter when dealing with specialists and surgeons who deal with such complicated diagnoses. We were warned that the greater the expertise, the more aloofness one might have to contend with. We were briefed on skilled surgeons who excel in the operating room, but might be less than comforting at bedside (on the rare occasions they make an appearance). I’m not sure what experiences fed these stereotypes, but meeting with Dr. Reemtsen quickly made it clear they didn’t apply here.

I spoke of the very strong recommendations we received for CHLA and Dr. Reemtsen took no offense at this, having nothing bad to say about his former employer and even encouraging us to investigate both options. In making the case for UCLA, he held forth the promise that he would be hands-on involved in Rudy’s care from delivery to discharge. His arrangement here is such that this is his only hospital and practice so he’s here every day and can remain very involved with his cases (contrasted to a specialized surgeon who might have patients in multiple hospitals and only pass through on an occasional basis). He would be by the bed several times a day and constantly interacting with the treatment team in every development and decision. He would be honest about our circumstances, communicate clearly and not give false hope.

It was a very encouraging conversation, at the end of which he pulled out his business card, wrote his e-mail address and cell phone number on the back, and made it clear that we should have no hang-ups about using it for any reason whatsoever. No answering service. No automated phone trees. Straight to him. I never ended up calling it but remember a few worried evenings in my office, as I tried to take in all the unknowns that lay before us, where simply picking up that card and turning it over to look at that number brought a sense of comfort and reassurance. We were in good hands.

At the outset, I don’t think I would have been able to articulate an itemized list of qualities I would want my son’s cardio-thoracic surgeon to have. As Rudy’s heart would be very small and would require very steady hands, I remember checking Dr. Reemtsen’s during that first meeting to make sure all the fingers were there and that they didn’t shake excessively. Overall, I noted no obvious involuntary ticks but did wonder if it would be possible for me to hide in his closet and jump out just to see that he didn’t startle uncontrollably. Other than that I didn’t have any sophisticated rubrics for evaluation. Other doctors spoke highly of him and we wouldn’t expect UCLA to hire anyone with blemishes on their record (but I did check), so the main criteria for us to choose our expert had little to do with an educated analysis of his skills, but simply by how we felt about him.

While arrogance is not an attractive trait, when it comes to choosing a heart surgeon neither is too much humility. You want self-confidence; a person who is well aware of their competencies and does not question them. While the general population strives for well-roundedness, I prefer my heart surgeon to be somewhat out of balance—a bit too dedicated to work, unable to thwart perfectionist drives, never able to make enough time for hobbies, incapable of leaving work on time or stay away on a weekend. Someone who will always remember that he’s dealing with MY baby—and that my world has come to a stop. Someone who realizes that my medical training ended with high school biology, but I’ll be comforted to know relevant information in language I can understand.

I trust the number of interactions with Dr. Reemtsen documented in this blog communicates implicitly what is taking me a number of passes to state explicitly. He is a person that exudes competence; who I suspect doesn’t give much time to things he can’t excel at. He is purposeful and doesn’t give indication that much time in his day gets wasted, but has time to stop and be friendly. He wears a mantel of importance, but carries himself without much fanfare. His attention to his patients knows few bounds as demonstrated by the evening and weekend visits and the late-night phone check-ins I’ve overheard.

If the guy who holds my son’s heart in his hands demanded I call him “Spartacus”, I’d have no problem doing it, yet I love the way he introduces himself as “Brian”. As isolating as life can be here in the CTICU addressing our key source of comfort as “Dr. Reemtsen” would keep him far more distant than we’d like.

I make no pretense that I’m motivated largely by my own self-interest in this whole journey. I want the best outcome. I want Rudy to have the best. But this comes at a cost, and I’d be delusional if I thought I was shouldering more than a fraction of this. In his devotion to our son, Brian has made our burden his (along with so many others here at UCLA) in ways that we never could repay. We’d like to think we know what’s best for our kids and provide everything for them, but this experience has shown our knowledge and competencies to be shockingly finite. So thank you, Brian, for having the expertise and skill we could never muster.

I also realize that others pay a cost for Brian’s round-the-clock devotion to Rudy. On several occasions, we’ve heard Brian speak of the Reemtsen ladies. As their husband’s and father’s commitment to my son undoubtedly makes for absences from them, we are so grateful. May they realize now and in the future the profound hope he brings to families like ours through what he does each day.

Homage to a Hero: Dr. Dan Levi

Another one of the people who have been such an encouragement along the way.

Upon learning of Rudy’s diagnosis, the efforts I made to research HLHS treatment at UCLA led me to the Pediatric Cardiology website. As I looked for points of contact, I came across Dan Levi’s webpage where two things caught my eye: a title listing him as Director of the Pediatric Cardiology Fellowship and an undergraduate degree from Stanford. I confess I’m not a very good alum and can’t remember a time I played the alma mater card (after all, it might not mean anything more than my dad and his writing a lot of checks to the same place 20 yrs ago), but it was worth a shot if it served to give me some leverage with someone in authority in the place my son needed treatment. So I sent an e-mail explaining our diagnosis, asked what treatment might look like at UCLA and closing by pointing out our common Stanford tie but making it clear that this didn’t imply any inappropriate obligation.

The next day, just minutes after I got a “GO CARDINAL” e-mail telling me he would be calling shortly, Dan rang me on my cell phone. Consistent with the conversation I had a day earlier with Gary Satou, I found comfort in speaking to someone knowledgeable in the scary mystery thrust on us. Dan had good information, wise counsel and, more than anything, apparently as much time as I needed to ask questions and have information repeated. He informed me of the steps UCLA had taken recently specifically in bringing on Brian Reemtsen to handle cases like ours. He made it clear that I should contact him via phone or e-mail at any time if I had need.

Rudy’s early arrival prevented any chance of us having a chance to get acquainted ahead of time, but shortly after Rudy was placed in the CTICU, I met Dan in person. I’m beginning to fear conversations with Dan as with each one we land on another common connection: Stanford, people at Stanford, his parents live in SB, I’m acquainted with his aunt and uncle, we were born in the same town in NJ…I fear we’re not far from discovering that I bullied him at summer camp or egged his car in high school.

We’ve discovered so much about each other because Dan is personable and makes a point of stopping by and checking on us about as much as he checks on Rudy. Right now, he’s not directly involved in Rudy’s care but, like most around here, seems to keep tabs on the Norwood patient. There have been a few days where he’s come by and made mention that he wasn’t actually on floor duty. Before we could compliment him on his dedication he explained, “I only come up here because the tea is free and buying it downstairs everyday would be really expensive.” Given my reputation in every place I’ve worked of making excuses to drop by offices with free coffee and tasty snacks, I applaud Dan.

As Monday was a particularly rough day that left us unsettled, Trish and I were touched that he made a point of stopping in quickly just to offer some empathy stating “I don’t want to come by when things are only going well”. In the years ahead, his specialty of heart catheterization will have him involved with some of Rudy’s key procedures down the line. We’re grateful that coming back to UCLA for these will not only be a chance to receive excellent care, but a chance to see a friend.

Seeking the Good in Suffering

The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.

C.S. Lewis The Problem of Pain

In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.

I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.

The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.

In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.

As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.

Here’s the details

I don’t think five hours of sleep ever felt as good as the ones we got last night. After checking on Rudy at midnight, we came back to the room and sat on the bed for a couple of minutes and the next thing we knew it was 5am.

Aside from the circumstances of the last few days making sleep scarce, I think the main reason I was able to sleep is the fact that there are such skilled people whose eyes never leave Rudy. That chokes me up about as much as seeing him there in the ICU—there are people I’ve never met before who work day and night attentive to details that I don’t even know to look for.

Since the postings on the blog are a mainly quick bursts giving the vital details of some rather unexpected days, I thought I’d give a more complete account.

Tuesday evening, I felt done at 9pm decided to get in bed much earlier than typically of late. I see this as providence because at 3:15 Trish shook me awake and asked for help as she felt her water was starting to leak. I called the high risk OB at UCLA and he recommended we go to Cottage in Santa Barbara to have them verify this and monitor the heart before a likely transport. We both scrambled around the house and called a friend to come stay with the kids, all the while feeling a bit confounded as, even though the journey thusfar is all about things unexpected, we still cling to some odd notion of planning and scheduling. We’ve been working on the assumption that our life would be disrupted starting mid October and the weeks up until then would allow us to tie things up properly. I’m betting Rudy will be the kind of kid who wears his pants backward just because it’s different from the way everyone else would do it.

Cottage confirmed that the water had broken but since contractions hadn’t started and the fetal heartbeat looked fine, they arranged for an ambulance to take Trish to LA. We decided I would stop by the house and drive myself so we could have a car down here (which turned out to be brilliant as it hasn’t moved since we got here and is racking up tickets in the Med Center garage). I was able to see the kids quickly before they headed off to school and pack up a few things. Actually, I should clarify that it was MY stuff that needed to be packed—Trish has had a staging area ready in the corner of our room since sometime in August.

Trish’s ride to LA went quickly as they did turn on lights and siren when they needed to in the morning rush hour. I, on the other hand, had to contend with LA traffic and ended up making the decision to go PCH after reports of a major accident in the valley. Driving next to the ocean was good for me considering the circumstances, though I was probably on the phone more often than not. At 10:45, Trish called and said that since her arrival at 8:30, the doctors had decided they would move the delivery along. There was the possibility of keeping him in utero longer as being larger and healthier might give him a better chance in surgery, but with that comes an increased risk of infection, which would work against this. As she was at 36 weeks and Rudy was estimated at over six pounds, the Drs. consulted and decided that delivery was the safer option.

Courtney was one of the first angels that took care of us. Admittedly, my first thought when I arrived at the delivery room was how great it was that it was “Take Your Daughter to Work” Day at the hospital, and that sooner or later her mother, the real nurse, would make her appearance. But no, this woman blessed with looks that would likely make her a lock for queen of any Junior Prom was running the show. Wow. Attentive, knowledgeable, highly competent and pleasant the whole time. Over the course of the day, our rapport grew to a point where I kiddingly made mention to her colleague of how great it was to be Courtney’s first patients ever, to which Courtney matter-of-factly responded, “You might not be as far off as you think.” I told her she could tell me the truth later, but it doesn’t really matter. She’s a pro who made the right career choice.

We were glad that our friends, Bob and Kathy, couldn’t stay away and were with us for most of the day (Kathy all the way through delivery who had the presence of mind to take most of the pictures we’ve posted). They regularly upped Trish’s Pitosin until things started to get uncomfortable around 3pm and then really intense for the last hour. Activity started to build in the delivery room as Dr. Rachel, the attending physician started to call the shots. I’ve since been amazed at how these well-trained people remain very measured during the most intense times; going about their business in a manner that does little to increase the panic. As they had told us there would be a large number of people in the delivery room when the baby came, I started to wonder why they weren’t there and if they were all going to make it on time, but Rachel was in control and every now and again instructed Courtney to make the necessary pages. Seemingly just at the right time the right people entered the room and joined in the activity—Dr. Lu, the High-Risk OB, interns, nurses and the Neonatal Intensive Care Team. No one stood around waiting, but just quietly kept busy.

Trish was heroic and it wasn’t too long before Rudy made his appearance. He squirmed around quietly for a few moments and then started to holler. As they had briefed us, the NICU team took him right away in their corner and did their once-over, with him protesting the whole time. I hovered between Trish and Rudy’s table and my spirits lifted when I saw them swaddling him up instead of making preparations to move him out. They were clear ahead of time that being able to hold him was not something they could promise, so it was pretty emotional when they brought him over to Trish so she could hold him for about 2 minutes. He rested there quietly and opened up his eyes and looked right at Trish. We knew that once they took him away those eyes would close and holding him would not be possible for the next few weeks. So those pictures and those brief moments are precious to us.

We were able to say a quick prayer over him and tell him we loved him before the team had to take him off. The team let me trail them into the NICU so I could see where they were taking him (Pod 3, Bed 9—I hear it’s a good one) before I had to excuse myself. While the OB team attended to Trish, I tried to figure out how to send the picture from the cell phone out by e-mail and before too long was listening to the Blackberry hum.

They prepared us for Rudy to be getting set up in the NICU for about three hours. It turned out to be more than four, but we weren’t particularly nervous as we were still coming down from the birth process and getting Trish settled into a maternity room. As they finished, different doctors came in and gave their report. A cardiologist finished her echocardiogram and confirmed the HLHS diagnosis, but said that none of the major secondary complications (that really increase the risk) could be seen. Dr. Devaskar, the NICU Chief, reported that the vital signs were good and that the team was making good progress setting up catheters, IVs, etc. He said Rudy was very vigorous and screamed quite a bit during the process (which made it easy to determine that his lungs were completely formed). Dr. Reemtsen, the surgeon, came by and was very upbeat and congratulatory. He said we make good-looking babies and said he was very pleased with the birth weight of 6.5 lbs (less than 6 increases the risk factor significantly). He’s scheduling the surgery for Monday morning right within the optimal 4-6 day window. They don’t like to operate too soon as it gives the baby time to settle (layman’s terms), but if need be they will go in more quickly if they feel like it’s a critical situation. So praise God they don’t see anything that would necessitate this.

After about four hours of waiting, we couldn’t take it anymore and wandered down to the NICU, thinking maybe they forgot to call us, but the two attending physicians on the floor were still working to place the catheters in Rudy’s navel. They were understanding and pleasant and, as we’ve come to see from most people around here, recognized us as the parents, stopped to talk and gave us a brief update before assuring us it would only be a bit longer. They were right, and 30 minutes later we got to go in and see him.

Even with all the tubes, hoses, blinking and beeping, he was absolutely beautiful. He lay there peacefully with his chest moving up and down regularly thanks to the ventilator, long skinny arms at his sides and a big mass of dark hair. His nurse, Dara, and her assistant, Lindsay, hovered quietly around him watching all the screens, arranging tubes and attending to all kinds of details. For the rest of the night, we were in the maternity room exhausted, but with too much adrenaline to sleep. Every couple of hours I would get up and go into the ward just to see him for a few minutes. Around 3am, Lindsay gave him his first bath and he looked even more handsome with his hair all combed.

Around 9am Thursday, I went to check on him and got a bit of a scare as I came upon the pod and saw about 12 people around him. I was quickly noticed and told that Rudy was being moved to the CTICU (Cardio Thoracic ICU), something we had been told was going to happen prior to surgery but a bit sooner than we expected. Dr. Reemtsen said he wanted Rudy there so that they could monitor him closely leading up to surgery. So I followed the transport as they moved from one unit to the next. It’s a unique sight to watch a dozen people moving this small baby surrounded by carts of equipment. I’d seen these kind of processions before in the last couple of days, but this time it was my kid. A nurse escort in front and in the rear makes eye contact with everyone in the hallway and in response to a clear hand gesture they pull over and stand against the wall. There are looks of empathy and understanding from parents who I suspect have made the walk I’m making and looks of compassionate distress from those they pray they’ll never have to. I make the random observation to myself that there’s not a seam anywhere on this floor that would jostle the precious cargo as we move from one hallway into the next. We move in slow and quiet precision—everyone knows their role and watches their part. When moments of concern arise, voices aren’t raised but very direct and measured instructions given. No excuses, no joking, no small talk. And it’s all focused on my son. One of many times a day that tears well up. God bless these people and what they do every day.

The NICU is excellent care in a cozy package; a kind of community feel as four babies are together in a pod with nurses working together from a shared table in the middle, holding babies in rockers in the soft light. The CTICU is a place of precision and focused attention. Rudy has a room bigger than any he’ll ever have in our house with wide doors and a big glass front. Big arms come down from the ceiling where all the equipment gets arrayed symmetrically, the tubes and lines are all ordered together and displays are prominent so that numbers and electronic waves can be scrutinized. The place is well lit when they need it to be without a shadow anywhere.

The next set of heroes goes to work here, Gina during the day and Jamie at night as our first dedicated nurses. They chart from a computer on counter just outside where the big window lets them see everything. More often than not, they’re out of their chair and in there taking care of something. Dr. Federman (clearly expecting her own baby) and Dr. Reardon keep an eye on everything during their respective day and night shifts. They go about fine-tuning things constantly to keep everything in balance. I compare it to tuning a Ferrari—they watch carefully and keep adjusting medications, breathing, blood pressure and oxygen in the blood. The last two days, we’ve been stopping by every couple hours while getting Trish ready to leave the hospital—I have to remind myself every now and again that she just delivered a baby.

In the midst of all our activity, Rudy lays there serenely in the middle of it all. He’s being kept alive right now by a drug called Prostoglandin which prevents the duct that joins the right and left sides of the fetal heart from closing as it usually would in the first days of life. If it did, the fact that the left side of his heart is non-functional would mean no blood could flow to his arteries. He’s been chemically paralyzed so that he can’t move around and disrupt things. The idea is to take all of the other muscles out of action so that the team can focus on his inner organs and what they’re doing. He’s on a ventilator to slow his breathing down so that the team can have very precise control over the oxygen saturation in his blood. The major balance is trying to keep the blood distributed around the body, so they are trying to keep a balance between his blood pressure and his oxygen saturation as this indicates the extent that blood is making it to the lungs and the rest of the body. That’s been the major concern, but it’s not beyond the scope of what they expect.

This afternoon, we met with Dr. Reemtsen for a briefing on the surgery. He did let on that there was some concern about how Rudy was stabilizing early on, but now he felt like Rudy was strong and looking good for surgery. He went into detail with pictures and made sketches of what he would be doing and humored all of our questions. He would place Rudy among the most favorable success rates (about 15% mortality) as he doesn’t see any of about four major issues that would cause him to be more concerned. There are still many variables involved, but that’s the way it looks now. I probably should reserve comment until after the surgery, but I’m so grateful to be in this man’s care. Clearly a gifted man with much to do, but never rushed when he’s with us.

So now, it’s time to get some rest. Trish was discharged from the hospital and we’re moved into the guest house just up the street from the hospital. We’re headed home to Santa Barbara tomorrow to get a few things in order as we weren’t planning for such a quick departure and also to attend the Rescue Mission’s annual benefit. As we’ve felt such love and support from the community there during these days, it will be good to be together. The CTICU team strongly encouraged us to get away while we can. Rudy is in good hands and things will get more intense from hereon in.

Thanks for praying and walking with us. Sorry for the long post, but hopefully I’ve given more of the details people have said they were eager to hear.

Rudy’s Letters

This has been a good weekend. Fun times with the kids (probably some of the last pool weather we’ll have), and we also made progress on a number of house projects we wanted to get to before our attention shifts to LA. Trish is displaying her usual organizational flair, trying to address details that may not get attention between now and January 1^st. I’ve been humming Christmas carols today—probably because of the notes I had to write so that she could mail all of the family Christmas packages. Rudy isn’t the only sick person in our family.

I bought a kayak last week so I could sleep better. A few dear friends have been concerned about my restless nights and suggest exercise. Going to the gym or riding my bike in traffic are not peaceful environments, so I figured getting out on the water would be more tranquil. So Saturday morning I tooled around the waters of Isla Vista with the sea lions until I couldn’t resist the call of the oil platform “Holly”. Made it all the way out and got to scrub off crude from bow to stern as my reward. Still slept lousy by the way, but nice to have some time for personal therapy, prayer and reflection.

”Hypoplastic Left Heart Syndrome” is a mouthful. Whether I’m typing it or saying it, it’s cumbersome; if not for reasons of syntax then for the weight the words have come to carry. Understandably, it is more efficient to reduce them to an acronym but it seems that the medical community doesn’t have consensus on this. “HLHS” is simple enough, but I’ve seen variants of “HPLHS” (long, but since the first word has five syllables, maybe it deserves two letters) and “HPHS” (as hypoplasts can only occur on left side, perhaps the “L” would be redundant).

HLHS. The first thing I think of are the gray t-shirts of apathetic teenagers chugging out laps in a high school gym class somewhere (“Highland Lake High School”? “Heartland Lutheran High School”?).

HLHS. A good acronym is one that requires no explanation (when did you ever have to explain ASAP, UCLA or IRS?). This is where HLHS really bogs down. Other than specialized realms of the medical community, I’ve never tossed out Rudy’s acronym in conversation without having to spell out the whole term to the puzzled looks I get. Not like “Hypoplastic Left Heart Syndrome” does that much for anyone; I usually need to include one of my layman’s definitions (my baby has half a heart) to see an expression of understanding that quickly changes to a look of compassionate concern.

HLHS. For some reason the whole acronym is taking some getting used to for me. Rudy isn’t born yet. I don’t know if his hair is straight or curly, I don’t know if his eyes will be the same piercing blue of his brothers and sister, yet I feel like he’s been branded with an ominous moniker—HLHS. These letters will be a big part of his life and a large part of our focus, but I pray they define him only in part and not in totality.

Trish’s Update 9/11/08

Good Morning Dear Friends,

A big thank you goes out to all for your continued prayers and messages of love and concern. So many have asked how the insurance stuff is going and I held off sending another update on that until we had more concrete information to share…It looks like we are moving ahead on treatment and care so here is the latest:

After the request for care at Children’s Hospital LA was denied, Rolf and a bunch of other dear souls (including our agent who set up the coverage) got to work on an appeal. In the meantime, the insurance company redirected us to UCLA because they are within our “network” and we felt it would be important to do our “due diligence” and get to know the UCLA team and their facility as best we could so we could make informed decisions…

Although we have not found the administrative system at UCLA to be as “user friendly” as Children’s, we have been very impressed with the medical team that will care for Rudy. When making initial contact with the doctors we were authorized to go to required numerous phone calls with no results, Rolf finally looked up the head doctors of each department on the hospital website, found email addresses, and emailed them directly explaining our situation. Within hours he heard back from each of them either by phone call or email!!!! They all insisted on seeing us personally and had their “people” rearrange their schedules so we could stack them all on one day. Once we bypassed the hospital’s system and got on the doctors’ radars, we’ve been in close contact with them.

As it stands now, I believe the appeal is still in the works but, at this point, we have run out of time and although we wish we could go to Children’s and take advantage of all their amenities and resources, we are convinced after being at UCLA that the care Rudy will receive is comparable and that is what is most important.

Rolf and I spent all day at UCLA on Monday…it was very strange to be back there as we had all of our kids at the old UCLA Med. Center…the high risk OB that will take over our case is even in the same office as my old OB (who, sadly, isn’t there anymore as I was hoping to have her involved in this delivery as well). The Mattel Children’s Hospital at UCLA is located in the brand new Ronald Reagan Medical Center – they just moved in a month ago – and it is beautiful. We met with the surgeon who will do Rudy’s procedure, the head pediatric cardiologist, the head neonatal pediatrician, and the high risk OB…they ran a battery of comprehensive tests and were very generous with their time…the surgeon himself sat with us for an hour explaining the procedure and answering our questions!!! Physically it was exhausting, emotionally it was heart-wrenching but, bottom-line, we felt our prayers for peace of mind about UCLA had been answered. The reality important for us to remember is that we had a choice between two good medical facilities when so many families in rural parts of our country don’t have any options at all! God is so much bigger than all the confusion and clerical mistakes between the various insurance parties that held this whole process up for us…and we feel, now, that we can rest in where we have landed.

What to expect AND how to pray…

So, now, the next phase of this journey begins! Although we don’t have HARD dates on the calendar yet, it looks like they will induce labor the week of October 21^st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6^th in case I go into premature labor. This is much earlier than I was planning to go down and has put me in a bit of an emotional frenzy…I just don’t want to be away from home/family that long. I’m still weighing that decision very carefully. If Rudy remains strong, we are going to try and deliver naturally. Once Rudy is delivered, he will undergo a bunch of tests in preparation for surgery which will take place 2-5 days after delivery. During that time, the children will be able to see him and hold his little hand but they won’t be able to hold him as I had hoped. I also won’t be able to nurse him right away…they won’t let him eat for 2 weeks! This is a BIG prayer request as many babies with HLHS have problems eating and end up with long-term digestive problems. The team is very supportive of me nursing him when he is finally able to eat so I will work at getting my milk to flow and keeping it flowing the first few weeks. Please pray that he’ll smoothly latch on when the time comes!!!

Speed and accuracy are essential to the success of Rudy’s open heart surgery…the whole procedure should only last 2 hours and the work on the heart a mere 40 minutes but a lot of really important stuff happens in that time and a lot of really bad things can go wrong in that time! Rudy will be in an extremely critical state (I’ll spare you the gruesome details) for a couple of days after surgery. At that point, he will be moved back to the NICU where he will stay until he is discharged. If all goes perfect, we could bring him home as early as 21 days after surgery…this would put us home right before Thanksgiving!

To be honest, emotionally it is hard because I want to do whatever it takes to give my baby a chance at life here on earth and yet I hate the thought of him going through what has to be done – with no guarantees! I’m reading a book right now by a mother who lost her son to HLHS and she writes, “Two of the most primal parental instincts are to keep your child alive and to protect your child from pain. Those instincts usually do not collide. With our baby, they did.” IT IS SO TRUE! I so understand this conflict of interest and it literally breaks my heart. So, we move forward continuing to pray for peace and God’s direction as we choose to pursue life for this baby. The practical and emotional impact all this will have on our family is starting to weigh heavy on me but then we have an interaction with one of the kids that reminds me that we are starting off on a firm foundation of love and compassion. i.e. Rolf and I had to sit Max down a few days ago to tell him that we couldn’t let him do sports again this fall – something we denied him last fall because we just moved into our house and we wanted to get everyone settled. We were bracing ourselves for a strong reaction from him as all he talked about ALL SUMMER was how much he was looking forward to either football or soccer this fall. After we explained to him that we just couldn’t commit to it this fall, he thought for a minute and said with disappointment but calmly, “I guess that’s okay. I’d rather have a baby brother than play sports anyway”. The children are doing fantastic but I continue to pray for them fervently as the sacrifices and stress will start to affect them more directly as time goes on.

And so, I humbly ask you to keep praying…the prayer needs are so numerous I can’t even begin to list them all so I trust the Spirit will guide you specifically as you pray. I’m still praying for a miracle – that the left side of his heart will begin to develop and, also, that the right side of his heart will continue to stay strong even though it has to work so hard.

With much love and gratitude, Trish

One Book I’ll Never Read…8/9/08

Given the amount of effort it can take to see a doctor for a simple checkup, the severity of a diagnosis is often made clear when the sea of referrals, answering exchanges and lunch breaks suddenly parts for an immediate appointment. As surreal as our emotions were in the wake of the discovery at the ultrasound, their reality was underscored by the chain of events that was instantly set in motion. I barely got back to my office when my cell phone rang with word that we were to meet the Pediatric Cardiologist first thing in the morning before he flew to Europe. While comforting to receive such immediate and thorough attention from a specialist, in the back of my mind I realize that speed and ease of scheduling is linked to the severity of the diagnosis.

The exam was thorough and the Dr. took great time to explain the details of Hypoplastic Left Heart Syndrome, describe treatment options and answered as many questions as we could come up with as our minds were racing. Even in his experienced and expert position, I have to imagine there’s got to be a yearning to not send away people in our position empty-handed, which explains why I have a pamphlet from the American Heart Association entitled “If Your Child has a Congenital Heart Defect”.

I hate this book. I’ll never read it. There’s so much wrong with it.

The bold type is theirs (not mine). Glad they highlighted YOUR in the title. Like any parent would ever pick this thing up if it wasn’t their kid.

I wonder why they didn’t bother to highlight the most startling word in the title—DEFECT. It’s already screaming out at me and doesn’t require any further intensification. I can’t believe they use that word to describe any child. Summoning all the objectivity I can muster, I understand that “defect” describes when things are less than they normally should be, but in how many other contexts have we hesitated to use relatively benign objective descriptions because they might carry some offensive connotation. I recently was party to a civic panel endeavoring to examine the situation of the homeless in our city, but prior to any substantive discourse there was a discussion worthy of documentation in the minutes as to whether we could use some term other than “homeless” to discuss the population at hand. Referring to someone who “does not have a home” simply as “home-less” is viewed as a pejorative, yet no one’s screaming that my son is being deemed defective.

I’m stuck at the cover. The art is really bugging me. There’s a smiling couple cuddling their toddler with the sun in their faces and the wind in their hair. Would they really be smiling like that if they knew the words “Congenital” and “Defect” were stamped across Mom’s forehead? They look nice enough. They even look happy enough. But I think they resemble people who would be on a “So your fertility treatments worked…” brochure. Maybe they were supposed to be on an Infamil pamphlet as the right mix of baby formula and nutrition could make them look that happy, but they aren’t selling me that their baby has a congenital heart defect and all they can think to do is bundle up in sweaters and walk on the beach.

I’m sure this brochure is intended to inform me, give me hope and maybe even assure me that everything’s going to be OK. If it can do the latter in 69 pages (OK, I peeked at the table of contents), I can assure you there wouldn’t be stacks of this thing there for the taking in the waiting room of a Pediatric Cardiologist’s office. In the 17 sleepless hours since first learning about this diagnosis, I’m certain the web has provided me with much more comprehensive information than could be found in the two pages this booklet devotes to Hypoplastic Left Heart Syndrome. Clicking on a web page feels like a detached activity, but there’s something about picking up a booklet like this and cracking the spine that signifies entrance and membership into a club I never wanted to join. I don’t dismiss the very real situation my child is in, but I refuse to read their handbook.

Somewhere behind this, I suspect there’s a frustrated individual with a degree in English Composition. She dreamt of changing the world and capturing people with her prose. I wonder is that dream still there, or was signing the contract to write “If Your Child Has a Congenital Heart Defect” a final indicator that she’s given up hope that people like me will ever read the stuff she really wanted to write. I feel sorry for her, because I’m not going to read this either.

Something Doesn’t Look Right…8/6/08

It was supposed to be a totally different afternoon. While the surprise of this pregnancy was still fresh with us (still not sure how it happened), we’d been moving to embrace it with laughter and lightness. There was a temptation to brood about how this wasn’t part of our plans, but we also know that it involved a new member of our family who, once introduced, will quickly make us wonder how we ever imagine life without them. We were still chuckling at our totalitarian resolve about 6 months prior when we cleared the house of any and all baby gear and where that left us now—nary a onesie in the joint.

As part of our “embracing with laughter” approach, we met at the 25 week ultrasound appointment and Trish brought all the kids along. Coming from a sunny summer afternoon into the small air-conditioned, dimly lit room had an anesthetizing effect on the kids. They took turns on the one chair and otherwise went limp against the walls as they filled the room with the smells of a great summer day: chlorine, saltwater and sunscreen. The doctor came in and revved up the machine and started taking measurements, snapping pictures and quietly checking off items from a memorized list—looks good… looks good…looks good… As we were able, Trish and I gave a more kid-friendly, but certainly less-informed narration—Look, there’s a hand! Or a foot?! Wait, you missed it. Pay attention kids!

While the doctor quietly humored this display of 21^st century parenting, I wonder if he longingly wondered about the way this same exam might have looked 30 yrs ago. If a dad even came, he probably stayed in the waiting room and certainly didn’t lead in the impromptu Science Camp field trip that the exam room was hosting now. While he seemed to speak up as he saw things, I wonder if his eye caught something troubling early on and then gave thought to whether he should clear the young bystanders before needing to get clinical. Not sure any amount of orchestration or reconvening in another office would have prepared us for the “Hmmmm. Something doesn’t look right here.”

While I did everything I could to match his matter-of-fact tone, I suddenly felt that the room could not be air conditioned enough. While trying to come up with intelligent questions and being introduced to a brand new vocabulary I’ve since grown to be fluent in (hypoplasts, ventricles), I broke out in sweat and began to see spots before my eyes. I remember Max looking up at me from the chair with a whimper and a furrowed brow. I realized I wasn’t going to be able to stand much longer and quickly told him it was my turn for the chair.