Made it to UCLA. They’ve started Pitosin to induce labor. We’ve been briefed by the neo natal team and they will be standing by at delivery. They’ve prepared us for a big crew to be here at delivery and what the different scenarios might be–likely Rudy will be taken to NICU for 2 hrs while they assess.
As long as Rudy isn’t stressed, the plan is for a normal delivery. We’re at 3cm 50% effaced as of 11am.
More when we know it.
Trish’s water broke and we came to Cottage at 4am. We are going to be ambulanced to UCLA shortly. No active contractions at this point so the team in LA will assess and decide whether to deliver or take steps to hold off.
Trish is well. Just anxious. Rudy seems to like doing things with his own flair.
It’s hard to believe that the first day of school was almost a month ago. Wilson, Max and Olivia have made the transition quite well and I find myself very grateful for our situation at La Patera Elementary. Great teachers, great families and great friends—all which combine to make getting up and going to school remarkably painless. During these weeks, we have been doing what we can to give the kids extra attention before our focus shifts to Rudy.
More than classes started on the first day of school. We also experienced what has since become the more regular occurrence of watching people stumble for words. As we walked the kids to their classrooms in their new clothes and snapped pictures, we greeted families we hadn’t seen over the summer who, understandably, commented on Trish’s pregnant appearance. It was easy to exchange pleasantries with those who smiled and made a quick comment as they hurried on to their classrooms, but more difficult when people took more of an interest and asked the usual questions of a woman obviously close to delivery. The more a conversation turned to due dates and the baby’s gender and how Trish is doing, the more a sense of dread built inside me. Not because I resented the person asking, but more out of a sense of compassion that the kind-hearted person didn’t know what they were walking into. The longer a conversation progressed the more disingenuous it felt to withhold the reality of how we were really doing and what we were actually facing.
So, as I shared our story, I watched as their countenances became distressed and I ended up feeling a bit sorry for the people who had to experience that kind of turn in the conversation. Here they were just being friendly and wanting to join in the joyful anticipation only to get blindsided by some information that left them awkwardly grasping for a response. It isn’t what one expects—conversations with a woman in her seventh month of pregnancy are supposed to be about excitement and encouragement of what’s to come. It’s understandable that being thrown such a curveball means the interactions don’t wrap up smoothly—it is a rare person that is able to react quickly and find the words that bring comfort and communicate the empathy one sees in the eyes.
But there was one person who didn’t seem to struggle for words—one of Livy’s classmates who came rushing through the schoolyard just before the bell. She hollered out to Trish and held her arms out for a big hug and got one. After the quick greeting and a pat on the head, she hesitated briefly and then came back in close and in a soft earnest tone said, “I hope your baby doesn’t die.”
As she turned and scampered off to class, her simple words stayed with us as we walked back home. I realize that every mother of a first grade girl at La Patera reading this might be horrified and hoping this wasn’t their daughter, but the simplicity of her statement hit the mark. While adults struggled for more eloquent ways to phrase it, this was the message they wanted to convey. It’s what we want to, so I’m grateful for a forthright messenger who expressed it so plainly.
I’m fairly certain my big sister Andrea desires to meet every person in the world and subsequently remain in contact with them. Not sure how close she is to fulfilling her dream, but I am amazed at her ability to maintain relationships over time and distance. To this day, her closest circle of friends includes people she went to elementary school with even though no one lives anywhere near the town we grew up.
I remember one of her best friends, Lisa, who I think she met in nursery school. I can remember tumbling around the back seat of the car in the cul-de-sac at dusk outside Lisa’s house as Mom tooted the horn to get the girls’ attention. The front door would open with wave of acknowledgement and then we would watch for heads moving around in the windows as Andi gathered up her stuff. Being that there was usually an important conversation to finish, I can remember Lisa walking her out to the car just to squeeze in a bit more before the inevitable “Call me’s” were exchanged. It was 35 years ago, but I can picture Lisa and Andi in their first communion dresses and maybe even in Brownie uniforms. I remember tagging along with them to high school football games and them posing for prom pictures at our house with dates in brown and powder-blue tuxedos.
Given the fact that I lost contact with most of my elementary school classmates before I finished my sophomore year in high school, I marvel at the fact that Andi and Lisa have not only kept in touch, but remained close. Lisa’s married and living in Los Angeles so we’ve had passing contact over the years whenever Andrea comes to town; the most recent being just days before Rudy’s diagnosis. I imagine a couple things must have changed over the years, but she still looks remarkably the same and, to my ear, the timbre of her voice sounds just the same as it did back in New Jersey. Now this relationship is one of those evidences of God’s grace because Lisa is a nurse at the UCLA Medical Center.
Part of surviving a severe diagnosis seems to lie in making human contact within an involved medical institution. We’ve learned we need to become known to people so we can advocate for good care, but on an emotional level it as much for the comfort of making friends that remind us that we are not interacting with a “Medical Center”, but with people who have incredible expertise and incredible concern for Rudy. So early into this, as I was still navigating my way through referrals and clerical channels, I took the step of e-mailing Lisa and she put us in touch with her friend Joyce who has worked in the NICU for 31 years. In just a couple of e-mails, Joyce has provided a very comforting perspective on UCLA and the team there. She even told us that she would request to be Rudy’s nurse when the time comes. The waiting game we’re in right now during these weeks can become wearisome, but it feels good to say that “Joyce” will be watching out for Rudy instead of some nameless NICU staff. Can’t wait to meet her in person…
So thanks, Andi! If you ever need money for stamps or your phone bill let me know because I just don’t know when another one of your friends will prove helpful to me. And thanks, Lisa, for being one of an emerging group of caring people at UCLA. While I don’t think I’ll ever be glad for Rudy’s circumstances, within them there are already such evidences of God’s grace to us. I think clinging to those is what will get us through.
Max had a great day. Many people were touched by his precious response to not being able to play in a sports league this fall and several called to see if they could help out with rides, coaching and practices. The main reason we didn’t feel like we could do this was the weekend commitments as the kids will likely be coming to LA regularly to see Trish and Rudy during the stay in ICU. Then, our kind-hearted friends Jamie and Scott invited him to play on their flag football team whose games and practices are all on weekdays (who knew there were still youth sports leagues out there that didn’t require you to sign away your weekends?). Max had his first practice yesterday and, even though I wasn’t able to be there, his unabridged recounting probably ended up taking longer than the practice itself. Scott will have to explain to me what smelling your teammate’s armpit has to do with football, but Max sure thought that was cool. He came out of his room multiple times after bedtime tonight to tell me one more detail about practice (each of which I had heard twice already). At some point the rising sternness of my tone and his own tiredness got him to stay put but on my last check in, he drowsily lifted his eyelids and said, “Dad…I just wish I could have football practice everyday…”
Thanks, Jamie and Scott, for including Max and thanks to the many others who express concern for and extend compassion to our kids. As focused as we are on Rudy, our prayers are also for Wilson (11), Max (9) and Olivia (6) and how all this affects them. We appreciate your including them in your prayers as well.
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.
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.
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.
Rudy's Beat 