Report: 01/30/07 visit to UofU Medical Center

We visited the UofU Medical Center in Salt Lake yesterday for a look-see at the twins 7 days ALS (After Laser Surgery). The results? Pretty good, as long as we operate under the assumption that the absence of bad news = good news. Our "regular" doctor (inasmuch as we can use that term: we've seen the same doctor for consecutive visits only once in the last couple of months) wasn't in, so we just had an ultrasound exam conducted to check on the "big three":

- Heart functions
- Deepest pocket
- Signs of preterm labor

HEART FUNCTIONS

Both tickers were, well, ticking right along. The rates were OK: 150-ish for Micah and 160-ish for Spencer.

DEEPEST POCKET

Measuring the "deepest pocket" (the greatest distance between any part of a twin and the nearest placental wall) is an imprecise science at best: the techs are scoping a 3D space with a 2D instrument, and the kiddos are in constant motion. That said, Micah's deepest pocket (DP) was 10-ish cm (slightly larger than last Wednesday) and Spencer's was 2.5-ish (slightly smaller than last Wednesday). On the face of it, this isn't good data. The twins seem to be moving in the wrong directions as we'd like to see Micah's DP decreasing and Spencer's increasing. Again, though, this measurement is tricky to "get right."

Here's an image that helps illustrate what they're looking for when they assess "deepest pocket." This is an image harvested from the 'net, not one of ours. We have lots, but I haven't had time to scan them and post them. I'll get on that... eventually. :-)



SIGNS OF PRETERM LABOR

The scan for indications that labor might be kicking off early yielded OK results. While one indicator pointed in the wrong direction, it wasn't too significantly bad. And the most blatant indicator--steady, regular contractions--is still absent. That's good.

TIMELINE

We'll be back at the U on Friday for another checkup. Calendar-wise, here's what we're up against:

- Twins delivered at 24 weeks have a better-than-fair chance of survival but also a higher-than-comfortable risk of complications (poor eyesight, respiratory and circulatory troubles, brain damage, etc.). We'll hit 24 weeks on February 4th.
- Twins delivered at 28 weeks have an excellent chance of survival and a minimal risk of complications. We'll reach 28 weeks on March 4th.
- Twins delivered at 32 weeks + are in a great place. We'll hit this magic number on April 1st.

Surgery completed, now what?

Hi everyone,

I just typed up a great long paragraph about everything, and was then informed by Seth that he had already updated the blog....he said about everything that I was going to say. Oh well, it was a nice thought.

We will continued to be monitored by the doctors at the UofU until the babies are born, and will most likely deliver there. (our first appointment will be Monday afternoon)

For the next 2-3 weeks (after returning home) I will be on a modified bed rest, because pre-term labor can be triggered by the surgery and not happend until weeks after. Our church relief society will be bringing in meals twice a week (the boys won't eat much of it and they always bring a lot so twice a week should feed Seth and I quite nicely). Along with meals being brought in, Seth's company is paying for us to get some help around the house, so we'll have someone coming in three times a week to help with laundry and heavy cleaning. We also have family in the area, and they have volunteered to help with the boys, so most likely I will have someone over every afternoon. I have also been blessed with wonderful friends, so with Scotty in school and Max in preschool twice a week, I should be able to take things easy and get the reclined rest I'm supposed to. (somewhere between 2 hours morning and evening to all day).

I'd like to just reiterate again how grateful we are for all of your support, prayers and faith in behalf of our little ones and our family. We feel extremely blessed and loved, and have faith that things will continue to go well.

Follow-up report on surgery

Melissa is out of the hospital and resting at her parents' home in Sacramento. She'll fly home on Saturday afternoon. Here's the scoop on our follow-up visits with specialists at UCSF yesterday prior to Melissa's discharge.

The general ultrasound revealed that the pocket of fluid around Spencer (the donor twin) has more than doubled since the surgery (1.4 cm to something over 3.0). Further, his bladder was visible. That's good since ultrasound only picks up the bladder if there's fluid inside. Dehydration and malnutrition are Spencer's most dangerous enemies, and he seems to be in good shape on both fronts as of the moment.

We later underwent a fetal EKG, and both babies' hearts seem fine. They're pumping as they ought (both in terms of rhythm and volume). Micah's ventricle walls are still thicker than we'd like, but that's to be expected: the overloading condition that caused them to thicken in the first place could only have improved starting yesterday. Here's an analogy to explain what's going on:

- Suppose that the average human heart works at a level equivalent to "curling" a 5 lbs. barbell constantly with one arm.
- The TTS condition placed a greater load on Micah's heart--something like swapping that 5 lbs. barbell for a 10 lbs. model. As one would expect, the muscle involved grew bigger and stronger. If you're talking about an arm, that's OK. If you're talking about the heart, not so much: flexibility is preferable to raw power where the heart is concerned.
- Yesterday's procedure returned the load on his heart to a more normal level--analogous to swapping back to the 5 lbs. barbell. Since the heart is still moving a load (albeit a smaller one), its return to normal size will be gradual in the same way that the arm would gradually return to pre-10 lbs. size.

The specialists indicated that we might consider having fetal MRI done on Micah to see if we can learn whether he sustained brain damage during the brief slowdown in his heart-rate (see post below). Since the purpose of this exercise would be informational rather than actionable (i.e. the outcomes wouldn't inform any treatment or preparatory steps by the doctors, they'd only help us prepare emotionally), we're likely going to pass over this opportunity. We'll take him any whichaway.

The lead surgeon visited us just before we checked out to express that he was very pleased with the procedure and its apparent outcomes. He feels that the odds of both babies surviving has improved from 10% (given no treatment) to 80%. Better!

Thanks for your thoughts, your help, and your well-wishes. Melissa's surgery on Tuesday went as well as we could have hoped. The doctors were able to see what they needed to see and zapped one large vein-vein connection and a few smaller ones.

There seems to have been an immediate positive effect on the "donor" twin (Spencer). He appeared better-hydrated even while Melissa was still on the table. We're cautiously optimistic.

The only complication in the procedure seems to have been that the recipient's (Micah's) heart-rate slowed to 50-75 bpm (down from 130-150 standard) for a few minutes (less than five). Some degree of brain damage might have resulted, but that's far from certain.

Otherwise, all's pretty well. It seems as though the procedure didn't trigger preterm labor. Melissa is resting comfortably. (Very comfortably: they drew off TWO LITRES [or LITERS, for those of you on this side of the pond] of fluid... between four and six pounds'-worth: yikes!).

M should be released from the hospital in the afternoon Wednesday, provided that the follow-up exams show good things. I'm catching a late flight back this evening and will see y'all bright and early tomorrow AM. Melissa will fly home on Saturday or Monday next.

Again, thanks for everything. We couldn't do it without y'all.

What did the docs say?

Hi everyone,

Sorry for the delayed update, but here it is in all of its glory.

The main tidbit of news is that I will be going in for surgery at 4:00 p.m. on Tuesday, January 23 (tomorrow). After 5+ hours of tests/consultations this seems to be the best option for us.

I spent 2 1/2 hours doing ultrasounds Friday morning (talk about uncomfortable!). They did a regular ultrasound on both babies (complete measurements to determine size, weight, due date comparison), and then the ultrasound specialist (whom we later found out is one of the best in the world) came and did the specialized ultrasound for those babies with TTTS (measuring pockets of fluid, looking at the heart, the bladders, doing doppler on the umbilical cords, and a complete look at the placenta to determine if there were any artery to artery connections). The results of the ultrasound showed that the recipients fluids had gone up, the donors fluids had gone down (below 2 this time), and the donors bladder was barely visible (meaning fluids were way down, and dehydration could start setting in. Also during the ultrasound it was determined that there were no artery to artery connections. The reason why this was important to know is because in a small sub-set of twins with TTTS if they have A -to-A connections, then the amnio-reductions seems to help things balance out, and even stop being a problem, so after 2-3 amnios, the TTTS seems to go away. The last thing noted was that my cervix is a little short (an indication of my body getting closer to going into labor-something not unusual with all of everything I'm carrying around- but not good)

Right after the ultrasound (read that walk directly to the next office, do not pass go, do not stop for lunch) we had our appointment for the fetal echo-cardiogram, which is basically another way to say a "glorified ultra-sound focusing on the hearts of the babies". Again, talk about uncomfortable (a lady who feels like she is 8 1/2 months pregnant can only lie on her back in one position for so long). Going on; the results of this test indicated that the donor baby's heart is perfectly fine so far, but the recipient's heart was starting to show some warning signs. The cardiologist told us that the heart itself is doing great, pumping, holding, releasing fluid the way it is supposed to, no defects to be seen. However, the walls of the ventricals (the things that bring into, and take out of the heart) are starting to thicken (not a good thing).

Given all of these things put together, along with the fact that I am already out here, the fetal surgeon recommended that we go ahead with the surgery. It so happened that our consensus agreed with his.

Here are the things we learned so far about the surgery itself. They will most likely give me an epidural, and (I'm guessing) sedate me after that. They don't want to put me completely under because that is more dangerous for both me and the babies. After which they will stick a "needle" the size of a pencil into my abdomen, and into the sack of the recipient baby (more fluid, easier to move around etc.) It is realy important that the amniotic fluid at this point is clear, not murkey or foggy, because they then thread a microscopic camera into the needle, and into me, through which they find all of the veins and arteries that are being shared by the babies. The way doctor Lee put it (the fetal surgeon) they look "back and forth, back and forth, back and forth" between the two little ones. After they have done this for a long time, they "map"(?) the placenta, and determine exactly where and what they will cut/cauterize/sever using a microscopic laser. They then proceed to cut/cauterize/sever each vein and artery they think the two are sharing. The hopeful outcome of all of this is that since the two are no longer sharing anything, they will each receive the right amount of and nutrients that allows them to grow and progress without getting too much, or too little. And then, if that happens, the hope is that Mom's body will be able to hold onto them long enough that when the time comes for them to be born they will be big enough, and strong enough, and developed enough that they will survive (hopefully without any more complications).

I will be kept overnight in the hospital, and released either Wednesday or Thursday depending on things go. After I am released I will go back to Sacramento with my mom where I will recuperate for another day or two before being able to fly home to my family.

Seth is flying out tonight (monday) to join me, and will stay with me until Wednesday evening, where he gets to fly home, and take care of the boys....again. I think he probably has gotten the worst of things this past week. The boys have been sick, so he has been playing Mommy and Daddy, and trying to work (which hasn't happened very well) and taking care of sick kids, while I've been here in CA lying around relaxing and letting my mom and brothers take care of me. I'm truly appreciative of all of his sacrifices in behalf of our family. His Mom will be staying with the boys in Logan while he is gone. We felt like routine is important for them right now, plus Scotty is in school, so we are very grateful to her for doing that. My brother Aaron and his wife Stephanie, who live in Logan, have also been a great help to us-watching the boys when needed and shuttling Scotty to and from school each day. the boys just love them, and their little Mckensey, so knowing that my boys have family that loves them around, while I am not, has given me a lot of peace.

I guess that is it up to this point. We'll try to let everyone know how things go on Tuesday, but I can't make any promises as to when! Thank you again for you prayers and support, it means much to all of us!

Learn about TTTS services at UCSF

You can learn more about the center Melissa will visit tomorrow here...

The UCSF Fetal Medicine Website

Melissa by the Bay

Melissa took an afternoon flight to San Francisco today and will meet with specialists at UCSF tomorrow. It sounds like she'll have a full day of medical fun. Her ticket out was of the one-way variety--something I never thought I'd experience in our marriage. It isn't a good feeling. :-) But it does give us flexibility to adapt to whatever the docs tell her tomorrow. If they recommend that she undergoes the fetalscopic laser procedure immediately, she can delay her return accordingly. If they recommend no action at this point, she can come home on Saturday or Sunday.

We'll post a full report after M's exams tomorrow.