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…

 

Torn Between Three Loves…

We slept last night like we haven’t in awhile.  We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school.  I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.

 

Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case.  Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable.  After the way last night ended with Livy begging us to come home, it added another place to those we wish to be:  with Rudy, with our other kids, and now in Kansas with Trish’s family.  Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.

 

The hospital staff quickly became aware and though we got quite a bit of empathy and kindness.  It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them?  It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown.  You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what.  There are powerful emotions on this journey.  Trying to stuff them could likely make you crazy.

 

In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff.  Maggie the Cardiology Fellow likes to give a “Rud-ee!  Rud-ee! Rud-ee!” cheer when she comes in to see him.  Everybody thinks he’s really handsome and the medical folks say he’s a model patient.  His vital signs continue to be perfect and every set of labs is progress in the right direction.  The big concern today continued to be that he would start peeing regularly.  Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk.  The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing).  Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door.  Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.

 

We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold.  He’s got them on now and we’re torn as to whether his feet are cuter with them or without them.  They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue.  Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case.  Especially now that he’s peeing, he looks leaner than he did in the birth pictures.  Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down.  Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA.  It’s not as bad as one might think, though Trish hasn’t been curious enough to look.  There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.

 

The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit.  When we come close, hold his forehead and start talking they slowly open up to about halfway.  If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue.  I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff.  It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.

 

It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night.  Monina is tonight’s angel so we’ll rest easy.  Thanks, Jesus, for guiding our little boy today.  As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.

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.

Okay, today was tough…

Hello dear ones, 

How wonderful it has been to read all the comments made on Rudy’s Beat the past couple of days…it feels like we’ve been on this really wild ride but in slow motion since early Wednesday morning when I realized Rudy was on his way!  We’ve had 3 days of some amazing ups and downs and we’ve really only just begun this journey!  Your continued prayers and comments on the blog have been such an encouragement and fun distraction. 

Today, I admit, was the toughest so far.  Today was discharge day and even though I’ve known for quite some time that getting discharged with Rudy in arm was not going to be our reality, when the time came to officially “leave” the hospital without him, I was overwhelmed with grief.  I was given a mountain of pamphlets and brochures in my “postpartum packet” that didn’t apply to my situation and a sweet little diaper bag that was quickly emptied of all baby stuff by the lactation nurse and promptly filled with breast pump supplies and storage bottles.  Not that I blame the staff for doing their normal discharge routine, but every step of the procedure was a heavy reminder of the fact we weren’t going home but to a hotel room and we weren’t going home with Rudy.

Instead, I walked the long corridor from the maternity unit to the CTICU with my bags in hand to “set up shop” in Rudy’s room.  A bright spot in my day was getting to hold Rudy’s sweet little left foot that was now free of a monitor and tape.   Another truly bright spot was seeing Wilson, Max and Olivia who took a day off from school to meet their brother!  Their hugs never felt better and although seeing Rudy for the first time was a bit disturbing, they quickly warmed up to him and had a nice visit. 

And so, we enter a new phase in this journey…it’s a little hard to process it all right now so I’ll wait to share some of the details of Rudy’s condition and upcoming surgery on Monday at a later time but even in the midst of the grief and exhaustion, we continue to experience God’s amazing grace and are so grateful for His presence with us. 

This made my day!

In case you didn’t pick this up from my comment entry, we’ve formed a unique friendship thanks to the blogosphere.  Check it out… http://katiemanning.wordpress.com/ entry for October 2nd.  We are so glad for Alan and Vickie and the way their courage and candor give us a model to emulate.  Please pray for Katie as you pray for Rudy.

I’ll write more of an update later… Trish is taking care of some photos on her laptop right now.  It’s 10pm and we’ve had a low-key day here at the hospital.  They moved Rudy from the NICU to the CTICU (ha, I know more acronyms than you do)–that’s from the newborn ICU to the Cardio-Thoracic ICU, so the surgery team can monitor him over the weekend.  Surgery is scheduled for Monday morning.  Trish is doing well after delivery and was able to move more freely as the day went on.  We’re pretty tired, but still too much adrenaline to sleep.  The kids were pretty excited to have a new baby brother, but also thought the milestone deserved a day off of school.  We’re making it up for them tomorrow as they’ll get to come to LA and see Rudy.  The Drs. say that things look as good as they can, but as we get closer to surgery on Monday, things could get a bit more difficult for Rudy as his half a heart can only go so long.  Right now he’s got a good number of tubes in him, but looks cute as a bug’s ear, so we’d love for the kids to see him sooner rather than later.  Thanks for reading and for not letting us walk this one alone.