Thank God

According to our Cincy docs, the surgery was a success! All signs from Monday’s echo and ultrasound currently point to recovery for the boys, including improved readings for Gabriel’s heart, good Doppler readings for both babies, and more fluid in Zeke’s sac. Things seem to be evening out between the twins and the adverse effects of their previously critical state seem to be reversing. I’ll be getting weekly ultrasounds and occasional echos here at home to make sure all these trends continue, but we feel confident that the lasering of my placenta’s 39 faulty vascular connections has stopped the progression of TTTS … and just in the knick of time. Since equilibrium has hopefully been achieved, Gabriel and Zeke are on the road to better health and growth in the womb. Now all we have to do is keep them cooking in there for as long as possible. Thank God to all of you for your well wishes and prayers, and to the brilliant and caring surgeons at the Fetal Care Center of Cincinnati!

We hit the road after getting the good news yesterday afternoon, spent the night in West Virginia, and arrived home this morning. Stephen and I freaked out when we saw Houston. He was a tad apprehensive at first, probably due to my dramatic tears of joy, but quickly decided that we were cool enough to be hugged and loved. We were really getting homesick our last couple of days in Ohio, so being reunited with our happy boy for even just one day has already eased the anxiety, stress and tension we have built up over the past week and two days. This, together with the great surgery prognosis, is fueling us for what we know will be the challenging weeks and months ahead of us. Thank God we have such a loving and inspirational son, and we pray that God chooses to bless us with two more beautiful boys.

Pins & Needles

Tomorrow morning we find out if the surgery worked and if we are free to go home. I’ve been on pins and needles all weekend, stressing about every little sensation I feel in my tummy. It has been mentally draining, although I’ve mostly felt good on the inside. Those “flutters” of baby movements have returned on Gabriel’s side, and I’m not near as tender on Zeke’s side anymore. My stomach is noticeably smaller and less tight since the surgery, but is itchy and red where it had once been tautly stretched with extra amniotic fluid. All in all, my pregnancy parts are feeling all right.

The bed rest has actually been more physically challenging for me. Lying down for so much of the day makes my thighs extremely achy and sometimes prevents me from getting adequate sleep. Stephen has been rubbing my legs, easing the pain, at least for a little while, but the annoying aches make me paranoid about getting blood clots. I am on a prescription (yes, we were eventually able to get that thing filled) that promotes blood flow, which is suppose to aid in the placental recovery and promote the desired equilibrium among the sacs, so perhaps that will also help my legs. Getting comfy in the bed with my assorted pillows also makes for a frustrating experience, since I have to lie on my sides with one hip always higher than the other. Like all pregnant women, I have to urinate constantly — adding to the fact that I’m also paranoid about having a distended bladder (since that can cause contractions) — so the in-and-out-of-bed cycle is trying, to say the least. But I know I have to be tough and remain focused, since we are not yet out of the woods.

Some of the milestones for which we’re still praying:

  • A positive prognosis for tomorrow’s echo and ultrasound, affirming that the surgery was a success;
  • A safe arrival home from Cincinnati;
  • To first make it to 24 weeks (I’ll be 23 weeks on Tuesday), when the twins are considered viable and have a 50/50 chance of surviving labor and delivery;
  • Then to make it as far beyond that point in my pregnancy as possible;
  • If premature, which is likely since the average gestation for TTTS twins after successful laser surgery is 31 weeks, that the boys get the best intensive care available and quickly recover from the adverse effects typical of premature birth;
  • Gabriel and Zeke make it home safe and sound from the NICU, and remain healthy and strong for the remainder of their long lives.

A random note of interest: Dr. Lim told Stephen that during surgery, Zeke was lying on about 1/3 of the connections the docs needed to laser. So, Dr. Lim actually pushed him away from that area with the fetoscope. So, while in the womb, Gabriel has already seen amniotic needles, Zeke has seen a medical scope, and both boys have witnessed laser technology … how wild is that?!

Another mind-boggling tidbit is that this whole TTTS drama began not even a month ago. We’ve come so far since my 20-week ultrasound on July 8. Here it is not even August yet, and we’ve already undergone TTTS fetoscopic laser surgery — a procedure that wasn’t even performed till 1988 and has only been done about 1,500 times since. Stephen and I fully understand how lucky we are to have had such great care both here and back home. Any crappy doctor along the way could have impeded our quick progress in tackling this horrible disease head on. Hell, if we had had a sub-par OB, we might not have even found out that I had TTTS, and the twins would have surely died in utero (fetal mortality is almost a certainty if TTTS goes untreated).

Therefore, one of my new missions in life is to make OBs and women who are pregnant with identical twins more aware of TTTS. It’s a one-in-300 shot to even become pregnant with identical twins — or monozygotic twins, when one fertilized egg divides in half some four to eight days after conception. And then TTTS only occurs in identical twins that have a monochorionic placenta (one shared placenta). Even though stats say that the disease appears in only about 1 in 1,000 monozygotic pregnancies, with both male and females being affected at the same rate, mothers and OBs alike should automatically be on the look out for discrepancies in amniotic fluid during early ultrasounds for identical twins who share a placenta. More frequent ultrasounds should also be performed for this type of pregnancy, and OBs should be willing and able to immediately refer a possible TTTS mom to a quality maternal-fetal specialist, should abnormalities arise. If I can help spread the word, perhaps TTTS survival rates will get better and, consequently, fetal specialists will come to understand the causes of the mysterious disease.

Over One Heckuva Hurdle

Thankfully, the twins and I made it through surgery! It was such a crazy experience. I was more worried about all that could go wrong with the procedure before getting to the hospital than I was when we were actually there. Sometimes I was thinking, “Well, we’re finally here … let’s get this show on the road,” while other times I felt like it was all a dream, as if I was watching somebody else’s drama unfold before me — a weird mix of proactive relief and out-of-body experience. Stephen got to be with me for all the prep work until the team of nurses and the anesthesiologist were ready to take me back to the OR. I told the anesthesiologist to knock me out as much as possible because I didn’t want to hear all that was going on during the surgery, but she said she couldn’t totally sedate me since it would be too much of a risk to my health for this type of procedure. She said I would be more in a kind of “twilight.”

And that I was. I could open my eyes and hear people talking, but I would drift off a little here and there. The epidural only numbed me from about the bottom of my ribs to my toes, so I could feel the pressure of what the surgeons were doing, but didn’t feel any pain. After hooking me up to monitors and oxygen, getting me situated on my side on the operating table, and putting that horrible, stinging needle into my spine for the epidural, Dr. Lim made an incision through my abdomen and uterus, and then he and doctors Polzin and Crombleholme “mapped” my placenta with the fetoscope, determining which vascular connections needed to be lasered, while a nurse took notes on their findings (this took the majority of the time). There were other nurses present (I was told about 10 people total were in the room) working their respective monitors, taking fetal pictures, working the ultrasound and doing other cool stuff. Then Dr. Lim went through the same incision to selectively laser the problem-causing connections. They glued my incision (yes, they used some super-duper medical glue to seal up my tummy), unhooked all my gadgets and wheeled me out to Stephen, who says the whole thing took a little less than two hours. Amazing!

Even though the babies and I all survived the procedure, we knew that the first 24 hours post-surgery were our next hurdle. The docs drew more than 3 liters of extra amniotic fluid (about six pounds) out of Gabriel’s sac — obviously, an environmental change that is quite shocking to my boy. Dr. Lim said because of this change in amniotic pressure, as well as a change in blood flow, Gabriel’s little heart would really be put to the test during this time. Of course, an array of other very scary stuff could also happen, so we were stressed out last night to say the least. Moreover, I had a million cords and tubes hooked up to me, and my legs were throbbing from being on continued bed rest, so I was not feeling quite up to par mentally or physically. Luckily, Stephen spent the night with me in the hospital and, even though he was also wary of all the horrible scenarios we could possibly face, he remained strong and helped me get through the extremely challenging night.

This morning began with an ultrasound. Connie, the wonderful tech, notified us immediately that she spotted two heartbeats. Thank God, both Gabriel and Zeke were alive! At the end of the ultrasound, Dr. Polzin said that Gabriel’s heart rhythms seemed to be improving from some fairly typical dips they had been showing previously, Zeke’s fluid seemed to be slowly increasing, and both babies’ Doppler readings were looking good. Then Dr. Crombleholme visited me in my room and reiterated that all signs were “encouraging” thus far. Thank the Lord we made it over yet another hurdle!

We’ve been back at the hotel since a little before noon today. I’ve been chilling around the room and Stephen went down to the hotel bar for a bit to see a band doing jazz standards. So now we have to bide our time till Monday, when the babies get another echo on their hearts at Cincinnati Children’s and then another ultrasound is done with Dr. Polzin at Good Samaritan, a sister hospital specializing in OBGYN stuff. If those tests show that the surgery has indeed ceased the progression of TTTS and the boys are positively responding to their new environments, we will be heading home first thing Tuesday morning to see our other boy, who we have missed terribly.

Being away from Houston has made all this Cincy drama that much harder. We cannot wait to see him run, laugh, talk, dance, make funny signs and do all the magical things he does every day. Houston is such an amazing little human. I just hope he somehow understands that we’re away from him in an effort to keep our family intact. We know that he’ll appreciate it when Gabriel and Zeke are around to play with and/or beat up, while all three sport the Reds baseball caps Daddy bought for his boys at the game the other day. Houston’s going to be the best big brother ever … and those are the days for which we’re striving, one hurdle at a time!