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.
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.
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.