Homage to a Hero: Dr. Robert Kelly

Dr. Robert checks on Rudy
Dr. Robert checks on Rudy

I’ve written of the due diligence we did upon learning of Rudy’s diagnosis in utero.  To receive a diagnosis of Hypoplastic Left Heart Syndrome was to find ourselves in a scramble to get conversant in a world we previously knew nothing about.  Within a short time, we knew enough to understand the importance of cardiologists and cardio-thoracic surgeons, but beyond that we barely knew what questions to ask.  As we started to head in UCLA’s direction, a doctor friend here in Santa Barbara noted that it is a Level 1 Pediatric Trauma Center which means that it has the highest level of resources for dealing with kids in critical circumstances.  I didn’t think much of it at the time, figuring it would be a given that UCLA would be among the more advanced hospitals in southern California.  But beyond that, I didn’t know there were levels and that they stood for something. 
 
I didn’t know there were doctors known as “Intensivists” who specialize in the care of critically ill patients.  While Dr. Reemtsen is the quarterback of the team (Rudy is “his patient”) and he and the cardiologists track him with great care and are involved in every decision, it’s the Intensivists that never leave him.  Attending Intensivists take charge for seven days at a time and are supported by Fellows who are present around the clock to keep watchful eyes on patients whose conditions don’t distinguish between waking and sleeping hours. 
 
We’re not sure how rotations and schedules are set, but somehow Dr. Robert Kelly is one of two attendings who have pulled the majority of the shifts while Rudy has been in the CTICU.  In a place where the line between life and death is regularly skirted and parents are pitched about in the accompanying throes of emotion, Robert walks calmly and methodically; a man who’s found bedrock and, by virtue of the fact that he’s securely anchored there, can keep a steady course while we flail about.
 
On a Sunday early on we discovered a mutual love for the New York Giants which led us to discover that, we too, share roots in North Jersey.  On the surface, Robert appears a straight arrow.  I would suspect he’s always been one except that he attended the Catholic boys’ school my parents always threatened to send me to.  Maybe there’s a sinister past we don’t know about that required Benedictine reforming.
 
Among other things, Robert’s calm demeanor in the CTICU comes from a base of knowledge and competence.  A typical morning round at Rudy’s bedside is an introduction to a new language; a flood of terms, numbers and instructions (and I’m only listening to one patient’s worth).  Everyone in the huddle tracks along and I try to nod knowingly with my most intelligent expression hoping I’ll remember the big words long enough for Robert to stop by.  He understands them well enough to explain them to me and has the patience to do so multiple times if necessary.
 
Rudy’s situation is complex and patients in his condition do not follow a scripted course of treatment.  It is a journey of debate and discovery and Robert is often a central player; secure in what he knows, but welcoming of other opinions; able to draw on a wealth of personal knowledge but also willing to research diligently.  It’s navigated best by someone who is able to keep the patient clearly in view and desires to marshal any and all resources and expertise on their behalf.  I’ve come to trust that Robert tends to be right most of the time, but love the fact that he cares less about this than Rudy getting what’s right.
 
Robert seems to be very aware of Rudy’s condition whether he’s on duty or not.  More than once I’ve come across him somewhere in the hospital on an off week and it’s clear he stays as current on the charts as if he rounded with the team.  It’s not like his “weeks off” from us are devoid of intensity as he spends most of them on duty with the transport team where the next phone call could see him rushing to the helicopter to bring in a child in critical need.  
 
I’m always struck when Robert comes in to see Rudy as it’s a man about my size who fills the doorway.  While my hands have been compared to Paleolithic tools, his go very gently over Rudy’s body and navigate deftly around the wounds, wires and tubes.  The stethoscope is carefully cleaned to make sure it’s sterile, but also so it’s warmed and doesn’t startle Rudy.  As he finishes up the exam, his eyes sweep the room from monitor to monitor and pump to pump.  I’ve come to believe that he knows what just about every one of these numbers should be, but such things always bear verification.
 
It was observed that Robin Hood’s trusted sidekick, Little John, was anything but little.  Not noted for the flamboyance of his leader, John’s reputation was that of a “stout, loyal fellow”, so I draw the parallel to Robert for reasons beyond physical stature.  As a parent thrust into the world of the CTICU, flamboyance counts for very little, but stoutness and loyalty mean everything.  Robert’s steadiness and unwavering commitment to Rudy, and thereby our family, are things we will be forever grateful for.
 

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 1st.  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 21st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6th 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 21st 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.

Trish’s Update 8/17/08

Good Morning Friends!

I just wanted to thank you all for your comforting emails and phone calls.  I’m really bad at returning phone calls but your efforts in reaching us are greatly appreciated.  I also wanted to send out an update as many of you have inquired whether or not there are new developments.

First of all, my apologies to those of you who got our request for prayer and didn’t even know we were pregnant!!!  Ha Ha  Yes, well, the news of Geyling #4 coming our way came as quite a shock to us in early March.  We walked around in a daze for a few weeks but, of course, the idea of adding another to our family has grown on us and we’ve all since fallen in love with this little baby. The classic quote came from Max when we told the children I was pregnant…he burst into tears and said “I don’t mean to be offensive but I like our family just the way it is!”  Well, now he and Olivia have both eagerly offered to share their rooms with the baby and Maxi wakes up every morning, gives my big belly and hug and says “Good Morning Clinton” into my stomach because he read in my pregnancy book that the baby can hear outside sounds now!  Too cute….

Also, I’m kind of cutting and pasting my email list together as I go along so, again, please feel free to forward this on to any that might be interested and I’ve not included.

 

UPDATE:

We just returned from our trip to June Lake and we had a good time together.  Although Rolf and I were preoccupied, it really was a good time to get away and love on the kids with our undivided time and attention.  We have no new news about little Rudy’s condition but Rolf did make contact with a perinatal administrator at Children’s Hospital in LA who was very encouraging and who is helping us arrange doctor visits, etc….Right now, we are in the process of getting the appropriate referrals and figuring out insurance stuff.  Rolf has gallantly taken all that on as dealing with insurance companies has never been one of my strengths!  I go back to my primary OB for a regular appointment a week from Monday (August 25th) and, hopefully, by then we’ll have our first round of appointments scheduled in LA. 

So, for now, our focus is getting the kids ready for and settled in school.  They start in a week (Monday the 25th) and I’m compelled to pray hard for the upcoming school year as this will be a year of adjustment, possibly long stretches of separation, a string of different care-givers, their own concern for Rudy and the different ways they will process that, etc, etc…and how all of this will play out in their school experience this year.  I’m praying they have fun learning, build quality friendships and, on those days when it’s just plain hard to be at school, that they will be met with compassion and encouragement by their teachers and peers.

Please continue to pray…there are nights when Rolf and I are awake staring at the ceiling and we start to pray together but the words just don’t come…it’s hard to know where to begin!  We are definitely experiencing answers to your prayers for peace and hope and so we ask you to continue as you truly are interceding on our behalf where our prayers fall short.

It’s funny how your perspective on little things can change in an instant…this baby has been very active for several weeks and I was starting to grow weary of all the kicking but now every time he kicks my response is “Go ahead, Rudy, kick!!!!  Kick as much as you want and get as strong as you can!”.  All of a sudden, there is joy in every kick and the little annoyances in pregnancy fade away.

Anyway, I guess I’ll close for now.  Thank you, thank you dear ones!!!!!!  Big hugs to you all,  Trish and all