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.



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

Trish’s First E-mail (8/8/08)

Hi my dear friends!

I haven’t been very good about keeping in touch lately but I do think of you often and miss you all…we have had a very lazy summer up until this week and have enjoyed taking the time to get to know our new community better.  It is hard to believe it has been a year since our move from L.A.!!!!!

I’m writing this morning with a deep need for prayer for our precious little baby.  I went for my routine ultrasound on Thursday and the attending doctor detected what he believed to be a congenital heart condition known as Hypoplastic Left Heart Ventricle – a serious condition found in 3 or 4 babies out of 10,000.  Rolf and I saw a pediatric cardiologist yesterday who, essentially, confirmed Thursdays diagnosis.  Unfortunately, his diagnosis was expanded a bit to Hypoplastic Left Heart Syndrome as the entire left side of the heart is severely underdeveloped (not just the ventricle).  As far as we understand at this point, the baby’s entire left side is not functioning at all and so the right side has grown bigger than normal to compensate.  The baby can survive and grow and thrive inside the womb because it has the support of the placenta, etc but life is not sustainable outside the womb without intervention.  The most common treatment is a series of 3 open heart surgeries after delivery…one at birth, one at 4-6 months and one at 2-4 years provided there are no other chromozomal  abnormalities and the right side of the heart remains healthy/functioning.  The treatment doesn’t correct or cure the left side…it reroutes the plumbing of the heart so the right side can do what both sides should do together.   So, that means this little one can certainly live an active life but will be under the lifelong care of a cardiologist and will need heart medications, etc.

Things being what they are and so we can pray specifically, we abandoned our usual practice of not finding out gender and are very pleased that we have a boy named Clinton Rudolf Geyling, a name chosen not out of political leanings, but for his maternal great-grandfather (Clinton) and for his paternal great-great grandfather (Rudolf).  We’ll use the full name when he’s in trouble, but otherwise “Rudy” fits the bill. J

Right now, everything else looks fine.  He is big for his age and is seemingly healthy in all other areas.  There is no known reason why Rudy won’t develop safely to term and be delivered naturally.  If the first surgery is successful, his stay at the hospital is expected to be 4-6 weeks at the least.  Unfortunately, none of this can be done in Santa Barbara so the doctors here are recommending we gather a team in Los Angeles (most likely at Children’s Hospital in downtown LA) that will include a pediatric cardiologist, surgeon and OB.  I’ll have to meet with them a couple of times before delivery to establish a plan as well as continue to see the team up here so they can monitor the baby’s condition and make sure the right side of his heart remains healthy enough for the procedure.  I won’t be able to deliver at Children’s so, for now, the plan is to deliver at another LA hospital and they’ll transport Rudy to Children’s.

Obviously, there are a ton of unknowns and with this being unchartered waters for me and Rolf, we feel a bit lost and scattered.  We are, however, absolutely confident that God’s hand is on this and though our hearts are grieving and our bodies won’t seem to let us sleep, we are at peace.  What we need now is prayer so please feel free to forward this on as we want to get the word out but find it overwhelming to contact everyone ourselves.  The children know as they were with us at the first ultrasound appt so they could see the baby and they are all processing it in their own, unique way…I think at this point everyone is wondering how life will look the next few months and concerned about how it is going to effect them and our life here at home which is totally understandable.  Provided we get that far in the process, I know I’m wondering how I’ll even be able to stand being away from home for the 4-6 weeks minimum the baby will need to recover after birth…it’s all a little scary for all of us.

We have plans for a little vacation for a week starting Sunday up at June Lake near Mammoth and from there we’ll start contacting doctors in LA and setting up a plan.  I’m due November 2nd so we have a little less than 3 months to prepare.  We are just taking things one hour at a time and sure appreciate your prayers and love.  I’ll keep you posted!!!!  Love you all so dearly,  Trish