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.

A Quick Stop at Home

We are headed back to Los Angeles today after a quick visit home overnight.  Rolf and I came home yesterday to tie up some loose ends, welcome Oma and Opa who arrived Friday from Texas and attend the Rescue Mission’s annual fundraiser.  It was a full but very good day of seeing friends and storing up hugs for our week ahead.  Rolf and I, the kids and Rolf’s parents will head back down to UCLA this morning and spend the day together with Rudy before his surgery bright and early tomorrow morning.

As many of you know, my parents were planning to come and take the first “child care shift” and then the Geylings were going to relieve them in a few weeks.  Shockingly to us all, my dad was diagnosed with a brain tumor last week and has since met with various doctors in preparation for his surgery on Tuesday!!  Of course, there is great concern and disappointment on all our hearts as Gma Jo and Gpa Dick are now on their own journey of faith and recovery and none of us are able to be with each other to support and love on each other in person.  So, I ask that you add my Dad, Dick Wilson, to your prayer list…especially on Tuesday.  Again, I find myself in a place of complete dependance on God forced to approach life one day at a time.

Rudy’s surgery prep will begin tomorrow morning at 7am and Dr. Reemtsen is estimated to begin his work around 8:30.  He’s explained to us that the Norwood procedure is probably the most risky operation done at UCLA (or any hospital) and there is a critical window where Rudy will be on bypass that can’t exceed 40 minutes.  The entire procedure should last about 2 hours and Rudy should be away from us for about four.  Dr. Reemtsen has warned us that the next week will be a long series of highs and lows for Rudy so we are bracing ourselves and praying for emotional strength.

We are grateful for Rolf’s parents’ willingness to kick into action to be with the children.  We have, however, been thrust into our new lifestyle much faster than we anticipated so it has taken everyone off balance a bit…especially Olivia.  Please pray that the kids will extend an abundance of grace to one another and to Oma and Opa and that the times we do share together in the next couple of weeks will be positive and fun (interpretation: that I will refrain from filling the time with instructions for the kids and details that can wait!)  I’m definitely being challenged in the area of “letting go”.

Rest assured that all the comments on the blog are being read and the phone messages and emails from home are making their way to us eventually.  Thank you for your expressions of love and support and, although, we’re not finding time to return everyone’s calls and messages, we are blessed by them and we will be in touch.  Big hugs to you too,  Trish

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.