Dr. De Lia

I got the chance to talk on the phone to Dr. De Lia. What a nice man!!! I have nothing but good things to say about him.

I sent him copies of all my reports so far. He immediately said I needed to be on bedrest and drinking 3-4 Ensure/Boost drinks a day. He also joked and said we’d have a basketball player and a soccer player!

He can’t really recommend anything else right now. I don’t have TTTS, so don’t qualify for laser surgery, and we just have to wait. I can’t help but think back to my original ob who said there wasn’t anything we could do, we’d just have to let it play out. In one regard she was right. But I’d rather be in the position we’re in, where we know what’s happening, we can prepare.

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18 weeks

Another appointment in Baltimore. Babies are still both growing and healthy.

I saw the head doctor at Baltimore yesterday, and there hasn’t been much change in the last two weeks. The smaller baby is 34% smaller (up from 38% smaller) — but that number is still in the margin of error, so I’m not holding my breath. All functions for both babies are good, but the smaller baby did have a slightly elevated blood doppler. Right now it’s not a concern, but next week they’ll see if there’s any difference. It could also be b/c they couldn’t get any good measurements on him b/c the boy wouldn’t stop moving! It was so funny to see, and I was secretly pleased. B/c if he’s that active, that’s good, right? The bigger baby is all stretched out though, straightening his legs, etc. The smaller one is in a tight ball, completely curled up.
One thing I hated about yesterday was that the doctor, after looking at the ultrasound and redoing a lot of stuff, said I have a ‘challenging and complicated situation’ — great. Anyway, I’ll be going up to Baltimore for the weekly monitoring for the next two weeks before I start rotating between there and Fairfax. If something does change, he did mention cord occulation –something we won’t even consider unless the smaller baby has absolutely no chance, which he doesn’t right now. This is the procedure where the go in and clamp his cord and he dies in utero. Um, no thank you. He also talked about delivering as early as 30 weeks…once I looked at the calendar later, I panicked! That’s mid February!!!!
So we’re at the same point we were two weeks ago. Still don’t know anything, can’t do anything but wait and monitor. But that’s the best scenario and what we’re wanting.

I’ve decided to call Dr. Julian De Lia. He pioneered the laser surgery used now for TTTS. He’s a huge believer in aggressive nutritional therapy and bed rest.

I’ve been working to mentally prepare myself for all scenarios — including that we have to let the smaller baby die….via laser surgery. It kills me to think about it, but it’s a possibility, so I have to consider what would happen.

First Appointment in Baltimore

We got up at the crack of dawn and drove to Baltimore. The previous evening we were debating: do we get up ridiculously early and drive from West Virginia, or do we go into town and leave from there. We drove into town, finally crashed around 1am.

In Baltimore we got another in depth sonogram. This was actually Scott’s first time to see the babies!!!! This sonogram confirmed the results of the previous one. [insert data].

We talked to Dr. Harmon at length, and he told us that most likely we were dealing with selective intra-uterine growth restriction (IUGR). We were just happy it wasn’t TTTS, though sIUGR can turn into TTTS at any time. He told us that there were several courses of action.

There’s an obvious growth difference in the babies. One is measuring 38% larger than the other. The good news is that everything for the small baby is currently normal, it’s just really, really small.

He told us that there are several things that could happen:
1. Things progress as they are and both babies develop at the same rate, one will just always be small, but everything  is fine
2. The big baby keeps developing normally, but the smaller baby starts to fail. In this scenario, they’ll first determine how many weeks along I am.
2a. If less than 24 weeks, they’ll have to do a laser procedure to separate the connections between the babies. The big baby will grow normally, but the small baby will die.
2b. If more than 24 weeks, theyll deliver me and the babies will be in NICU for a long time, but both should make it.
3. Finally the full blown TTTS could develop

According to the doctor, both babies are healthy. He thinks there’s a 50% chance for option #1 and the other 50% is divided between the other options.

So we wait and see. I’ll have to have weekly ultrasounds, but I’m going to try to alternate them between Baltimore and Fairfax so that we don’t have to drive as much. Also if option #1, I’ll be delivering by c-section around 32-34 weeks. There’s about a 50-50 chance I’ll be delivered at Baltimore too since their NICU is one of the best- a top 5 pediatric cardiology unit. If delivering in Fairfax, I’ll still deliver at a different hospital than originally planned because now a very good NICU will be really important.

What this also means is that I’m officially leaving my ob! But now I’ve got to find someone who will take a high-risk patient this late in the game….

Research continues

By the time I got home, Scott had looked up the Baltimore center, saw it was one of the recommended facilities from the TTTS Foundation. He had been reading online, gathering data.

I called Mary at the Foundation, and she was wonderful! She went through all the TTTS-specific questions with me, suggested I call the doctor back and get the answers to the questions — she said knowing the answers would give me more information.

Once I got all the data points from the doctor, we realized that I didn’t fall into the parameters for TTTS. We were close with Baby B because he had low fluid, but his fluid was still in the normal range.

I spent the rest of the day googling. Google can be your best friend, and it can also be your worst enemy. Just when I’d stop crying, I’d read something that got me started again. Even stories with positive outcomes made me tear up, tears roll. Scott then banned me from Google, from the computer for the rest of the weekend. That was the best thing he could have done!

16 Weeks

I made my peri appointment for the day after my 16w appointment with the OB. I wanted to tell her about it and get her opinion. She actually tried to talk me out of going! Said that the babies would be too small to determine anything, nothing could be done, I’d be wasting my time.

So then I was filled with overwhelming doubt. Do I go, do I not, what do I do??? I even went as far as going over to the peri’s office (it was just across the hall from my ob) to talk to them, get their opinion again. No one was in the lobby or the front desk — it was lunchtime. So I left, spent the rest of the day debating.

Finally I just said, ‘it’s not going to cost me anything to go so I might as well.’

The next morning, I go. I immediately get an ultrasound, get to see the babies. I’m so excited to see them again, but can immediately see the size difference. This time they were about 3 weeks apart and about 34% different in size. The peri came in, voiced his concern, mentioned TTTS again, said he was referring me to the specialists in Baltimore. The tears just started rolling. I couldn’t hold them back anymore.

After my appointment was made for the next day, I drove home just bawling the entire way. I called Scott on the way, he was concerned about the extreme opinions — my doctor not wanting to do anything, the new doctor talking TTTS and specialists. I sent him the information for the place we’d be going to, and he was able to research it while I finished the drive.

The online multiples community

The first advice I was given when we found out we were having twins was to find the local Moms of Multiples group and join. So I did. The Northern VA area actually has two. And then I started looking primarily at multiples-specific forums on various other websites. These forums have been invaluable. And the people I’ve ‘met’ online have been the most friendly, most kind people. I guess with multiples, it’s such a unique experience that everyone who’s been there is more than willing to help someone else.

From there, I learned that most women with multiples start to get monitored on a much more frequent basis. Much sooner than my current ob would have me. I called, but she still wasn’t going to order another ultrasound until 20 weeks, 18 at the very earliest.  I posted this on a couple of the boards, and on every single one women told me I should be monitored sooner, that waiting till 18 weeks was just too long.

But who am I to argue with my doctor? I haven’t had the schooling she’s had. But my gut….

I kept seeing the same group of perinatologists mentioned on the DC-area forums, so I decided to call and plead my case. Without a referral, they wouldn’t take me.  Well crap. So I kept searching for more recommendations and found someone else. They would take me as a self-referral. I made my first appointment for the day after my 16w appointment.