A Quiet Day

I’ve been enjoying a quiet morning here sitting with Rudy. Actually it’s now already afternoon—time kind of mashes together during this process. Yesterday evening I crashed. I think the unique patterns of sleep and stress caught up with me a bit. So, I stretched out on the chair bed at the back of Rudy’s room and checked out. Even with all the lights on and people coming regularly and having discussions about his condition, there’s a rhythmic hum from all the equipment that fades it all together and makes for a bit of sensory deprivation.

Rudy progressed well in the wake of his chest closure yesterday morning and the team has continued the ongoing balancing process making sure that blood is getting evenly distributed throughout the body, that the blood gases stay in check, that heart and breath rates are where they should be, that liquids are draining properly…so many details monitored by so many gauges and switches. I think I count ten different lines going into his body and two coming out. Throw in the harness of breathing tubes and the various wires to monitor heart rate, temperatures and oxygen saturation and it’s a very involved rigging. I’ve noticed the nurses regularly give attention to this, rerouting lines here and there and relabeling all the lines at both ends to make sure there’s no question what’s what.

This morning when we came in they had removed the headband that was monitoring fluid levels in his brain so I’m looking at a nice broad expanse of forehead. It’s got a nice warm color, but I hope there’s a chance he’ll get a bit of a wash today as I can see some tape residue from the band and he looks a bit like a middle-aged man whose comb-over is beyond help at the end of a humid day. The team has said a few times that “he’s negative” which is actually positive (we’ve learned to not get immediately panicked by anything we hear). They track all of the fluid going into his body through all these tubes and then subtract how much is coming out. If the number is negative, that’s good as it means the kidneys and other functions are performing and he isn’t retaining liquid anywhere, though looking at his little body with his long skinny arms and legs don’t give much evidence of places he would store it.

He needed a transfusion this morning as there was concern about where his blood levels were headed. His oxygen saturation was getting down into the low 70s so among other measures they increased his blood volume. The green number reads in the upper 80s now so that’s a good thing. This falls again among the many things the team does proactively to make sure balance is maintained and we continue to be grateful that his condition hasn’t taken a turn such that they need to chase after something.

Rudy’s opening his eyes wide and is looking around quite a bit today when he isn’t sleeping and every now and again starts to gnaw and try to suck on the breathing tube. They’ve got the ventilator turned down to 16 breaths per minute, but he’s getting around 45 which means that he’s breathing on his own over the ventilator. They may try to remove the ventilator as early as tomorrow, but I have to keep reminding myself that, as encouraging as progress is, this isn’t a race of any kind. Just now they rolled Rudy’s head right up and now his eyes are wide open and he’s really putting those eyes through their paces—we’ll post the picture shortly.

We just took a quick lunch break and while we were gone the number of tubes was decreased by one as they took out the chest tube that was draining fluid from his incision. Nurse Cheryl gave him some happy medicine and he’s sleeping comfortably now. So now there’s one less piece of equipment at the foot of the bed. Over the last several days, I’ve had good time to contemplate the Oasis Dry Suction Infant/Pediatric Chest Drain manufactured by the Atrium Corporation. The team would regularly come in to check the tube and how much fluid was going into the reservoir over time. Eventually the flow lessened to the point where it’s not necessary anymore, so that’s the milestone for the day. In my time of contemplation, it did strike me as odd that in addition to all the medical language and the measurement gauge on the chest drain was a prominent cartoon of two polar bears fishing on a small tropical islet complete with coconut palm. Not sure what they have to do with the device’s purpose or if some marketing team testing graphics decided that this would be a more saleable design than bunny rabbits or balloons. I was intrigued enough to ask Dr. Harrison (the attending) when he came by yesterday. He admitted that in all his years here he has never noticed the fishing bears on the chest pump, but felt that they looked more like regular brown bears. Totally unhelpful. Why are they white then? Why would they be in tropical latitudes? Why would they be fishing with bamboo poles and bobbers instead of their paws? For the first time I saw a member of the crack UCLA team stumped and I suspect he’ll think twice before offering his usual “Do you have any questions?” at the conclusion of his visits.

So, we’re grateful for the peace of this day. The kids check in regularly by phone and we are so grateful for Oma and Opa as well as the La Patera school community embracing them. We’re making plans for them to come visit this weekend and stay the night. Trish is on the other side of Rudy’s bed addressing birth announcements and I would suspect will have them in the mail by the weekend. After arriving in the room this morning, she divulged to me that she wished she brought along her Swiffer as the smudges on the floor are really bugging her. I’m wondering if a stop on the Psychiatric Unit downstairs might be in order…

Another Milestone Surpassed!

Well, it is almost 4pm here on the west coast and I’m wondering where in the world today has gone. We left Rudy’s room around 11:30am so they could start the “closing up” procedure and Dr. Reemtsen met us in the waiting room about an hour later to let us know he was done. All remains stable so far…although Rudy is going pee pee, his kidney function right now is still cause for concern but all the really smart people around here seem to think that it is just a matter of time.

So now we pray against any infection from preventing his healing and we begin to pray for the next hurdle…getting him off the ventilator and breathing on his own. Once that is accomplished then he needs to start learning how to eat. He’ll be given my milk through a feeding tube at first, then gradually work his way up to learning how to nurse (we pray!!!) – not an easy process from what I understand. But that’s work left for another day…today we are just sitting and resting with Rudy and enjoying looking into his eyes every now and again when they open.

The Most Intense Day of Our Lives

Thanks so much for all the prayer on our behalf today. I don’t think I’ve had a more loaded day. It’s 11:15 and we just got back to the Tiverton guest house after spending some time with Rudy. The team is very pleased with his status. It was good to see him back in the room, albeit unsettling. Trish was pretty wiped out after all of this and we decided she would go back to the room for a rest. I stretched out on the fold-out chair at the back of Rudy’s room and dozed off intermittently while different members of the team regularly checked on him and made small adjustments here and there. The rarity of this condition was underscored by how many doctors were coming by to take a look–a Norwood procedure is a big deal. Even before we were able to get up to see Rudy, I ran into Dr. Satou in the lunchroom and he was well apprised that the procedure was completed–word travels fast.

It was pretty easy to overlook me behind all the equipment so I picked up a few comments from other doctors lauding Dr. Reemtsen’s skills and was comforted to see him stop in about every 30 minutes to check on things. The nurse told me later that the last time he came by was about 8pm–he had promised us in our initial meeting that he would be closely supervising Rudy’s care and he is certainly making good on that. Throughout the afternoon the reports remained consistent–the vital signs and the labs were all coming back right where they wanted them to be. The one detail of concern is that he isn’t urinating as much as they’d like (indicating that the kidneys have kicked in), so that’s one thing they’re working on. It really is an incredibly disruptive operation–the body gets chilled down to a point of suspended animation and then put on a bypass machine to circulate blood without using the heart. It’s not like they can just flip a switch and have everything come on again, so these next two days are very critical as they slowly bring things up to speed together. One doctor likened it to a tightrope walk, but they liked my own analogy of trying to balance a scale on a wobbly table. Rudy’s situation both before and after surgery has been one of critical balance, but the team doesn’t feel like they ever had to chase after him because he got so far out of allowable tolerances. Praise God.

This day had a comforting ending. I went back to the Tiverton to check on Trish and checked in with the kids by phone on the way. Poor Olivia is having problems holding it together and was begging us to come home. Trish was tired and worn down. Not only was it an exhausting day, but this is about the time postpartum hormonal stuff should be happening on top of it. We decided to go out and get a quick dinner and then say good night to Rudy up at the hospital. We ended up spending over an hour up there as the room was so peaceful. Rudy progress is a comfort, but more than that was the time we were able to sit and visit with Nita, the Cardiologist who will be watching over Rudy tonight. Another super-gifted doctor and a gracious warm-hearted person who served as a very friendly debrief to our day. She’s one of many who are patient with repeated questions and her knowledge of what we’re facing puts her in a position to offer unique comfort. She again reiterated that this is the time for us to sleep–they’ll be in there with Rudy almost non-stop tonight, so we can rest easy and leave him in her and Nurse Monina’s hands.

Thanks again for praying us through the day.

Late Night Check In

It’s 1am and I was just able to pull myself away from Rudy. Sat by his bedside praying, reading Psalms and just looking him. Nurse Debbie is a pro and has his oxygen saturation pegged right where it needs to be. They adjusted the ventilator a bit as he was getting too much oxygen because he was battling it and taking breaths on his own–medically not what we need, but there’s some paternal pride swelling in me to know he’s spunky and fighting. We visit a bit every now and again as she comes in to check or adjust something. They have him back on the paralytic, but it’s not totally working. Twice he struggles and opens his eyes a bit. As I let go of his foot after holding it awhile, he gives a small kick. Debbie thinks he knows I’m there because his heart rate jumped significantly after I sat down next to him. I spend a lot of time looking at his chest going up and down. It’s warm, smooth and perfect. I can feel the heart beating away inside there–to every appearence a perfect and beautiful boy. And in just a few hours this perfect chest is going to start carrying a scar that will be there for the rest of his life. I don’t like that but it has to happen. I grieve the scar, but I also pray I’ll be able to see it when he’s jumping into the pool or running in the breakers at the beach. I pray my grandkids will groan as they have to listen once more to daddy’s retelling of the “heart operation story”. Sleep well, Rudy, it’s gonna be quite a day…

Feelin’ Sophie’s Pain…

Today was a bit of a whirlwind as we once again woke up in Santa Barbara and are going to sleep in LA (or getting into bed and trying to). It’s a day that leaves us really torn between the needs of Rudy and the needs of Wilson, Max and Olivia. We envisioned getting up early, taking care of logistics around the house, packing up and getting in the car to LA around ten. But between the list of chores being a bit too long and the kids deserving a bit more of our attention, we were finally rolling just after noon in two cars so that Oma and Opa could drive on home with the kids after a visit with Rudy.

We kept abreast of Rudy’s condition through calls to his nurse during each shift. He has remained relatively stable since we left Yesterday. I’ve noticed that no one uses generic terms to describe his status. “He’s doing fine”, “He’s doing well.” or “He’s doing great.” are generalizations that just don’t work considering the larger realities. So, instead we get the information we need in clinical language. He is in a very delicate and critical place, so he’s not fine well or great. But his body continues to waver within acceptable tolerances for the dozens of things the team is keeping an eye on. I ask questions and have received patient explanations for the same things multiple times and am amazed at how many different ways the team employs to try to keep things in balance—oxygen, nitrogen, drugs with names I can’t pronounce, a transfusion, slowing down his breathing, speeding up his breathing, raising his blood pressure, lowering his blood pressure… I liken it to a very delicately balanced scale where small weights are added and taken away from each side to try to maintain equilibrium—only the scale is on a table with a short leg so it takes constant adjustment to keep everything where it needs to be.

I didn’t believe Maria, our nurse, when she told us that Rudy had opened his eyes today as she was changing his diaper. But she said they had scaled back the drug that was paralyzing him because…oh heck, I don’t know why—guess I’ll have to ask again. I think they wanted him to be able to be a bit more responsive. But she showed us how his foot would recoil just a bit when you tickle the bottom of it. Today they have his right foot clear, so we’ve had fun holding on to that little ankle and rubbing those little toes. Seems like a good match for the left, but we haven’t been able to see them next to each other yet.

The kids and Oma and Opa came in after Trish and I had a chance to check in. This time, they knew the routine and lined up like junior surgeons at the sink to wash their hands before they went in. Maria cautioned us that she didn’t want Rudy to get agitated as his signs were all stable, so the kids did their best to touch gently and speak softly. Shortly into this, Rudy surprised us all by giving a quick shudder with his arms and legs—the most we’ve seen him move since he was hooked up to all these tubes. So much for not agitating him, but Maria was cool with it. Maybe Rudy just wanted to get up and play with his siblings.

Wilson took quite an interest and sat there watching Rudy and asking various questions about all the gauges and tubes. I answered what I could and lied about the rest. Olivia and Max wrote on the white board and also discovered that the windows looking into the unit can be used as dry erase boards too (but we wouldn’t let them—the stuff written there by the staff seems important). After 30 minutes, Trish and the kids went out into a waiting room while I sat there with my parents for another 30 before we all headed for dinner, leaving Mom behind as she wanted to stay with Rudy.

The kids wanted to say goodbye to Rudy after dinner so we returned and were just about through the hand washing ritual when Trish waved me over to the bed. As we all stood there, Rudy had his eyes open halfway for just a few seconds while tears welled up in ours. Just as quickly his were closed, but there was a big crocodile tear right below them. The nurses tell us this happens. Even though an infant may be paralyzed, they do sometimes shed tears, which can indicate they are in pain. One of those heavy moments that drops on you in the middle of something like this. I pray his eyes were just watering because I hate the thought of being so close and having to watch him cry.

More tears started flowing pretty soon as we started to go. Wilson, having the most understanding of what’s going to happen tomorrow, understood the chance of how final this goodbye might be and quietly tried to hold it together as he walked away from the bed. Pretty soon Max and Livy joined in, but we think their tears were more over the fact that we were having to say good bye for the week. We hugged as long as we could at the car amidst pleas to not close the door, but finally we had to and stood there watching the van pull away. Trish and I walked away torn and I thought how unfair my parting words of “be good at school this week” were. I’m able to take tomorrow off because I’d be useless and without any ability focus, yet here I was telling them to stick with the routine despite all the thoughts and feelings going around in their hearts and heads. Trish dropped notes to their teachers in all their bags so they’d be forewarned if anything seemed amiss. We promised to call the school to get a message to them once Rudy was done as they wanted to know right away. It’s our own little version of Sophie’s choice—I don’t want to leave Rudy, but it kills me to see my kids go through a week this loaded and not be with them.

Rudy’s first up for surgery in the morning. They’ll come to get him about seven, so we’ll go at six to sit and pray with him. Now it’s 11pm and we’re settled in our room, but I’m going to walk over to the hospital after posting this just to be him for a little bit. I don’t need sleep right now—I’m just going to be sitting around tomorrow, but I do pray that Dr. Reemtsen and everyone in the operating room is getting plenty. Lord, be with us all tomorrow.

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.

My Sister’s Small World

I’m fairly certain my big sister Andrea desires to meet every person in the world and subsequently remain in contact with them. Not sure how close she is to fulfilling her dream, but I am amazed at her ability to maintain relationships over time and distance. To this day, her closest circle of friends includes people she went to elementary school with even though no one lives anywhere near the town we grew up.

I remember one of her best friends, Lisa, who I think she met in nursery school. I can remember tumbling around the back seat of the car in the cul-de-sac at dusk outside Lisa’s house as Mom tooted the horn to get the girls’ attention. The front door would open with wave of acknowledgement and then we would watch for heads moving around in the windows as Andi gathered up her stuff. Being that there was usually an important conversation to finish, I can remember Lisa walking her out to the car just to squeeze in a bit more before the inevitable “Call me’s” were exchanged. It was 35 years ago, but I can picture Lisa and Andi in their first communion dresses and maybe even in Brownie uniforms. I remember tagging along with them to high school football games and them posing for prom pictures at our house with dates in brown and powder-blue tuxedos.

Given the fact that I lost contact with most of my elementary school classmates before I finished my sophomore year in high school, I marvel at the fact that Andi and Lisa have not only kept in touch, but remained close. Lisa’s married and living in Los Angeles so we’ve had passing contact over the years whenever Andrea comes to town; the most recent being just days before Rudy’s diagnosis. I imagine a couple things must have changed over the years, but she still looks remarkably the same and, to my ear, the timbre of her voice sounds just the same as it did back in New Jersey. Now this relationship is one of those evidences of God’s grace because Lisa is a nurse at the UCLA Medical Center.

Part of surviving a severe diagnosis seems to lie in making human contact within an involved medical institution. We’ve learned we need to become known to people so we can advocate for good care, but on an emotional level it as much for the comfort of making friends that remind us that we are not interacting with a “Medical Center”, but with people who have incredible expertise and incredible concern for Rudy. So early into this, as I was still navigating my way through referrals and clerical channels, I took the step of e-mailing Lisa and she put us in touch with her friend Joyce who has worked in the NICU for 31 years. In just a couple of e-mails, Joyce has provided a very comforting perspective on UCLA and the team there. She even told us that she would request to be Rudy’s nurse when the time comes. The waiting game we’re in right now during these weeks can become wearisome, but it feels good to say that “Joyce” will be watching out for Rudy instead of some nameless NICU staff. Can’t wait to meet her in person…

So thanks, Andi! If you ever need money for stamps or your phone bill let me know because I just don’t know when another one of your friends will prove helpful to me. And thanks, Lisa, for being one of an emerging group of caring people at UCLA. While I don’t think I’ll ever be glad for Rudy’s circumstances, within them there are already such evidences of God’s grace to us. I think clinging to those is what will get us through.