Finally Something To Smile About

I had my weekly ultrasound with Dr. Joy on Friday, and it was the first appointment that really made us smile since this whole TTTS craziness began because it is finally getting evident that equilibrium between the twins is being achieved. Gabriel weighs 1 pound, 4 ounces, and Zeke isn’t far behind at 1 pound, 3 ounces, and each baby has ample amniotic fluid. In fact, Zeke, who has recently given me a few hardy karate chops, showed off during the ultrasound by flipping around and sticking his butt right in Gabriel’s face. It was amazing to see the former “stuck” twin put on a show now that he actually has some room to play with his brother. Zeke’s bladder, which never showed up on ultrasounds before the surgery (a typical symptom of TTTS), is now easy to spot, as well.

Gabriel’s heart, which had showed signs of distress over the past month, is growing stronger and is beating in more normal rhythms. I had had an echo done a few days before this ultrasound, and the doc scared me by saying that the lining of Gabriel’s heart was thickening a bit. However, he was comparing that to the twins’ original echo, done all the way back on July 16, not the two subsequent echos done since then in Cincy. Dr. Joy explained that it was normal for Gabriel’s heart to have had some thickening due to the quick progression of my TTTS, but that comparing it to the more recent post-surgical data showed that his condition was getting better. That’s what Stephen and I had thought, but it was a huge relief to hear this reassuring news from our trusted doc.

Houston getting wet at Mason's birthday party in July 2008. 

Also, Zeke’s CCAM is getting less and less noticeable on ultrasound. You might be asking yourself, “What the heck is a CCAM?” and “Why haven’t we heard about this before?” Well, it is a condition we found out about while in Cincy — something that is completely random and has absolutely nothing to do with TTTS. In brief, Congenital Cystic Adenomatoid Malformation is a benign tumor that is located on the inside of a fetus’ lung. It doesn’t usually cause a problem for a developing baby, but can sometimes complicate respiratory issues for already at-risk preemies in the NICU. It can grow bigger, get smaller or sometimes even disappear. Apparently, people are born with them all the time and live happy, healthy lives, never to be bothered by their CCAM. (In fact, it only became apparent that Zeke had one because of the detail and clarity of the MRI we had in Cincy.) But other times, they have been linked to respiratory problems and even cancer for some adults. So, our course of action is to have Zeke’s removed by a pediatric surgeon some time between three and six months of life outside of the womb.

I’ve been meaning to tell y’all about this, but I just didn’t want to overwhelm everyone with more potentially tragic news. But we actually feel fortunate about the news for a few reasons: 

  • We’re lucky to have even had an MRI and found out about Zeke’s CCAM;
  • Zeke’s is small and seems to be getting smaller as he grows bigger and stronger in utero;
  • The NICU staff where I’ll be having the twins will now be better prepared to deal with any potential problems the CCAM may cause for Zeke during his first few fragile weeks of life;
  • And we have the opportunity to be proactive and just get rid of the darn thing while Zeke is an infant, avoiding any possible respiratory issues in the future.

Houston playing with the big boys at Mason's 2nd birthday party.

Last but not least on the health news, we finally found a local doctor who is willing to work with us as far as an alternative vaccination schedule goes for Houston. The policy of the practice we had been going to doesn’t even allow discussion on the matter. It’s the American Academy of Pediatrics way or the highway. Sadly, even though we loved the actually pediatrician Houston had been seeing since day one, we left that practice just before Houston’s 12-month appointment and had been trying to find a more reasonable practice in the meantime. Luckily, we finally found an open-minded pediatrician, and Houston (who now weighs 29 pounds!) finally had his one-year check up just last week. Although, Houston’s new doc may disagree with some of our opinions regarding modern vaccination schedules philosophically, he is at least willing to talk over the matter with parents and offer us what we consider a more user-friendly approach.Yep, it felt as if our family was falling apart for a while there, but we are still getting over those hurdles one by one, with last week’s positive news and accomplishments giving us the much-needed dose optimism we have so been craving. Thank God for small (and large) miracles!

And to prove that Houston is handling the major changes to his routine (namely, having a mom on bed rest and many more caregivers than he’s accustomed to) like the tough guy he is, click on the above photo to check him out at a birthday party Granny took him to a few weeks back.

Houston’s 1st Birthday

Houston having a grand time on his 1st birthday!

Finally, here are pics of our trip to the beach for our first official family vacation and for Houston’s first birthday. We went for a week in late June and had a blast. Granny and Grumps were there nearly all week, and Gramsey and Papa were present Tuesday through Friday. As you can see, Houston absolutely loved eating his chocolate cake and vanilla ice cream. Click the above photo to see all the other hysterical shots of the birthday boy letting loose on his special day.

Houston hangin' with his new pals at Sunset Beach.

As always, Houston had no problem making friends. These are three of his buddies from Ohio. The “little mothers,” as their mom called them, taught Houston the proper way to make sand castles, dig motes and write your name in the sand, as well as a bunch of other cool beach activities. (It’s funny … it seems like all of Houston’s pals are girls. Like Daddy says, he already has a way with women!) Houston immediately took to the many fun possibilities of wet sand — including throwing, eating, digging and rubbing it onto others — and it only took him a couple of times to get really comfortable with the ocean. Click the above photo to check out all of the sun, surf and sand shots.

We also spent lots of time lounging around the cottage, and going for strolls and bike rides. Currently, Houston is walking and running, barely faltering (except when he’s tired) and never crawling. But it was at the beach that our boy truly perfected his mobility skills. Click on the pic below to view these misc shots.

Family fun at Sunset Beach on Houston's birthday.

Twins update: I had an appointment with my OB, Dr. Stringer, last Thursday and an ultrasound with my fetal specialist, Dr. Joy, on Friday, and all looks well with my post-surgery progress. In fact, Dr. Joy said the babies are getting harder to tell apart — a sign that equilibrium of growth is indeed occurring. Zeke moved more than I’ve ever seen him move, and Gabriel’s heart readings are getting better, as well. I have an echo tomorrow morning, which will hopefully show more positive developments as far as the boys’ hearts go. Moreover, I will be 24 weeks on Tuesday, and so the twins will finally be “viable” — a major, life-saving milestone indeed!

As one of the Cincy docs explained it, TTTS improvements after laser surgery are like a big ship in a small harbor; yes, the boat is turning in the right direction, but it is just a slow, methodical process, requiring much patience. But Gabriel and Zeke are definitely on their way!

Off To Cincy

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!