Monthly Archives: July 2008

Don’t Sweat the Little Stuff

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As I begin this blog on Tuesday, there is a loud screeching noise coming from the hallway of our hotel — just one of an array of little non-medical related things that has happened ever since we hit the road for Cincy on Sunday morning. The bizarre occurrences include our car’s “service engine soon” light, which came on somewhere in West Virginia; a funnel-cloud-looking storm (which was confirmed by local news later that night to indeed have been a couple tornado sightings) that loomed nearby as we made our way through rainy northern Kentucky, across the Ohio River and into Cincinnati; and a huge thunderstorm last night, which knocked out power to large parts of the city and has had made the following items in our hotel unusable since about 3 a.m.: elevators, telephones, AC, toilets, TV, ice machines and some lights. An interesting note is that before our toilet stopped working, it kept flushing over and over for about an hour straight in the wee hours of the morning. We told ourselves it was the beautiful rhythms of the sea and somehow managed to get some shut-eye before that freakishness ceased.

Even though I’m on bed rest, Stephen and I went out for a late breakfast, since the hotel restaurant was only running on a generator. I was able to walk down the three flights of stairs to get to the car, but had to lounge on one of the lobby sofas with my massive pregnancy pillows until the elevators finally started working about a half an hour ago (it’s now 1:30 p.m.) The water pressure just now returned, so we are able to flush our toilets and wash our hands, and Stephen was able to squeeze in a quick bath. Also, the screeching alarm is now off, the fireman have returned to their station and the phone works, so Stephen is celebrating with a well-deserved Cleveland pale ale. The AC and TV are still out of commission, but hopefully those will be repaired by the time we get back from our afternoon appointment at the hospital. Breaking news: Stephen tracked down the hotel engineer, who just fixed our AC … slowly, but surely, progress is being made!

And the way I’ve been looking at these little inconveniences is that God is testing us to make sure we’re loving and capable people, worthy to blessed with the two gorgeous babies growing inside of me. Surely we can pass the test and remain a unified front, since the little stuff isn’t going to kill us. We’re more concerned with the big stuff, instead praying to God for strength in making the best decisions possible for achieving optimal health for the twins and for myself, and happy outcomes for everyone who has been touched by our situation. Plus, we figure if God didn’t want us to be looking for treatment at Cincinnati Children’s Hospital, he would’ve sucked us up in a tornado or struck us with a bolt of lightning during some of the recent severe weather here.

Okay, it’s now Wednesday. Here’s the lowdown on the medical front. Monday was a hell of a day. It didn’t go as long as we had thought, since my MRI was scheduled for 11:30 a.m., not p.m. as my itinerary had said. So, I underwent a 2-hour ultrasound in the Fetal Care Center (FCC), headed over to cardiology for an hour-long fetal echo-cardiogram, then went straight to radiology for my torturous MRI, filling out tons of paperwork in between each, biding our time in the respective waiting areas and seeing the many beautiful but sick children who are also visiting or staying at the hospital. On one hand, it’s so heartbreaking to witness the array of physical and mental ailments these kids and their families are facing. But on the other hand, I like to look at the silver lining: not only do these children have parents who love them enough to seek the best medical treatment available in the country, but we are all so blessed that Cincinnati Children’s offers such wonderful and state-of-the-art care to kids ranging from in utero babies like Gabriel and Zeke to teenagers and all children in between.

We were done with the MRI around 2 p.m. and finally given a break to eat lunch (mmmm, famous Cincy chili at Gold Star). After that, we had a consultation with FCC’s family counselor/chaplain, and then met with maternal-fetal specialist Dr. Polzin and fetal surgeon Dr. Lim. The docs did their best explaining the findings, diagnoses and treatment options, but Stephen and I were exhausted and drained from our long day of testing. It seemed as if they were speaking a foreign language at times with tons of statistics thrown in for good measure. We tried to grasp as much of the info and formulate our questions in as coherent a manner as possible, but I felt like smoke was coming out of my ears. Good news was that the boys looked fine from head to toe and didn’t seem to be in distress. They had strong hearts, good brain activity, nice physical development and only a 15% differential in overall growth (typical of stage 3 TTTS, the designation in which we now fall). The bad news is that the docs threw us a curve ball by saying that not only was laser surgery an option for me, but so was serial amnio-reductions. However, they seemed to be missing some of the info from my one and only amnio done last week, which was, of course, vital to my hometown fetal specialists referring me to Cincy in the first place and the entire reason we are here in Ohio. And to top things off, we tried to fill an Rx that Dr. Lim had prescribed, but our insurance wouldn’t cover it at the hospital pharmacy. Lovely.

We felt defeated and beaten down when we left the hospital. It was really the first time we had actually been faced with a choice; prior to this cross roads, it always seemed so clear cut what had to be done at every point since we found out I had TTTS. We decided to read the massive amounts of medical literature given to us by the docs, talk with our families, pray for guidance and get some much-needed rest. By the morning, Stephen and I were both leaning heavily toward the laser surgery. We tried to call our specialist back home, Dr. Joy, just to confirm what we had understood as being a pretty failed first amnio. Unfortunately, he’s on vacation, but I at least made sure they re-faxed all the important amnio info up here and left a message for one of the other specialists to call me back. I went ahead and called FCC to schedule the laser surgery for first thing tomorrow morning, knowing that I could still cancel it at any time, if we should change our minds. Before heading over to FCC for my pre-op history and physical, Dr. Mertz returned our call and confirmed that it was of her and Dr. Joy’s opinion that serial amnio was not the way for me due to the limited effectiveness of my last one. She also confirmed that our interpretation (that the Cincy docs had to present us with the two treatment options due to both legalities and ethics, my current stage-3 status, as well as the fact that they had been lacking data from the first amnio) was correct.

Now well rested and better able to verbalize our thoughts and questions, we got to chat with Dr. Lim again about the laser surgery, its risks, stats and ultimate outcomes for FCC cases. It was amazing … we totally understood everything he was saying this time around and came out of that meeting feeling confident that our pro-surgery gut feelings were right on. Plus, it’s so great that even though health care is expensive and medical insurance sucks, Stephen and I ultimately had the final decision in choosing the best course of action for our babies — not the Cincy docs, not our hometown specialists, not my OB and not some government pencil-pusher in Washington (can you guess my view on socialized medicine?). Moreover, I now find solace in the fact that the Cincy docs didn’t push me toward surgery over amnio. I’m sure Dr. Lim loves cutting people open and using his fancy lasers; he’s a surgeon, after all, and that’s his passion. But I like him all the more for making us feel like Gabriel and Zeke are living humans, not statistics or guinea pigs.

We have to be over at the hospital at 5:45 a.m. tomorrow … gotta love the efficiency of private medicine! They’ll prep me for surgery, put me under with anesthesia, make two incisions through my stomach and uterus (one for the fetoscope and one for the laser), and spend the majority of the time getting the lay of the land (my placenta), and locating and determining which vascular connections are causing the problems. Then they’ll laser those connections, go ahead and draw some extra fluid out of Gabriel’s sac, do a micro-septostomy to further help restore the amniotic fluid dynamics between the twins, sew me back up and then awaken me to tell me that both Gabriel and Zeke came through the surgery with flying colors!

Today, I’m vegging at the hotel and Stephen went to see the Reds play the Padres. He’ll be sure to keep y’all posted on how things pan out. But in the mean time, please keep up those prayers, positive thoughts and good vibes. Lord knows they’ve helped. Thanks a million!

Off To Cincy

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With the help of Wi-Fi Internet, a laptop and lots of pillows, I am able to blog while on bed-rest. Well, Stephen and I (and the twins, of course) are off to Cincinnati tomorrow morning. We’ll be taking our time while driving up, stopping for my many pee breaks, and to stretch out and get the blood flowing (on doctor’s orders so that I don’t form any blood clots). It’s about 7 and a 1/2 hours without stops, so that shouldn’t be too bad.

Our “adventure” at the Fetal Care Center begins on Monday at 7:30 a.m. and ends with an appointment scheduled for 11:30 p.m. The day consists of another ultrasound and echo-cardiogram, individual and then family consultation, a team meeting with the surgical staff, and then an oh-so-fun MRI. Our hope is that our fetoscopic laser surgery will be fast-tracked for Tuesday due to what the findings were at our Friday ultrasound here with the local maternal fetal care specialists. Similar to the findings of my last ultrasound on Wednesday, things weren’t horrible, but the amnio-reduction really only bought us some extra time. In short, Zeke still wasn’t “stuck” nor was he exhibiting signs of distress — his sac had some fluid, he moved around a bit, his heart rate was strong, and he and Gabriel’s condition was still somewhere between a stage 1 and 2 — but the equalizing we had hoped for just hadn’t occurred. We knew the chances of that happening were slim, so this didn’t really come as a shock. Dr. Joy informed us that another amnio wouldn’t be necessary (music to my ears!), since the first outcome wasn’t that effective overall. Moreover, it could possibly hold us up from our Cincy plans, should I have to be readmitted to the hospital for observations post-amnio. Therefore, we’re taking the bull by the horns and going for the laser surgery — the closest thing to a cure that exists for TTTS.

Here’s the gist of the surgery: since the twins have an unequal sharing of blood to their separate sacs via their one placenta, the doctors will locate the vascular connections that are creating these “miscommunications” (presumably via the MRI) and “photocoagulate” (or destroy) them with the laser. This will even out the amniotic fluid in each baby’s sac, and in turn, create a more stable environment for normal physical, mental and physiological growth, while also greatly reducing the chances of an extremely premature birth.

Sure, there are innate risks with such an invasive surgery. But with the way my TTTS is progressing, the chances of one or both twins dying before they’re even viable for emergency c-section at 24 weeks, or at the very least, developing severe physical and/or neurological defects should they miraculously survive beyond that point are both likely if nothing more is done. So, we see this as a no-brainer. We’ll be sure to keep y’all posted from Cincy when we can. Keep up those prayers and just know that spirits are high with Clan Dillingham!

A quickie Houston update … we’ve been trying to keep his routine as uninterrupted as possible. While Gramsey was here, she took Houston on two play dates: one with Dixie and one with Gracie, his two best home girls. And then today, Granny took him to the birthday party of Mason, my old co-worker’s two-year-old boy. Plus, Houston has had plenty of people to take him on his walks and play with him outside, not to mention the fact that he has just been digging the extra time with Daddy, Granny, Grumps, Gramsey and Papa. He’s loving it!

Yesterday & Tomorrow

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Yesterday started off with Rebecca getting an ultrasound with the specialist. Things on that front were good but were only a band-aid to the syndrome. Zeke was not stuck again and the docs were finally able to view his bladder (a big deal when dealing with TTTS), but ultimately, something will probably need to be done soon. Therefore, we’ve started the ball rolling with all of our local team and the Fetal Care Center in Cincinnati, Ohio.

But we also had a lot of positive news yesterday, too: the chromosomal fish study came back negative, the echo-cardiogram didn’t show any abnormalities, and Rebecca got discharged from the hospital. She’s doing fine and has stopped having contractions. She’s glad to be back home where she can see Houston, relax uninterrupted, and exist peacefully, unencumbered by the degrees of medical hoo-ha she was plugged up to.

Tomorrow we have another ultrasound with the specialists in the morning. We are hoping and praying for a miracle and planning for otherwise. If the condition has indeed worsened enough to the point where action needs to be taken, we will be going to Cincinnati. My dad might be coming along as our backup. We would start the process early Monday morning, meeting with the remote team and figuring out the game plan for the week. The process is called fetoscopic laser surgery. It’s goal is to correct the blood-flow coming from the placenta, so that both babies have an equal share.

Many have been asking, “who is taking care of Houston?” Well, let’s give a hearty shout-out to grandmothers, or abuelitas, as some may call them. They rock. Especially when the come to take care of your children and cook you food. Houston has been in very good and loving hands and has been up to the following:

  • He’s doing the more sign (we think)
  • The daddy (or hat) sign
  • The dog sign
  • The abuelitas report that he’s saying “Dixie” and “uh-oh”
  • He’s giving hugs to his friends
  • Dancing to music
  • Walking confidently
  • Even running, says Gramsy

Rebecca is currently still on bed-rest at home, drinking high-protein shakes throughout the day, laying on her sides, pretty much only getting up to “take care of business.” She’s still is in high spirits and has a positive attitude about the whole thing. We ask that you continue to pray for us and we thank everyone for all their help. Most especially, we thank God, who has given us the strength to get through this thus far. Keep watching the blog for periodic updates.