Follow-up to our TTTS Laser Surgery

adacopeach

So, we are 6 days post-op from the laser surgery in Houston. Camden (recipient) was super active all week long and Chase (donor) only ever so often.  We had our follow-up with my MFM and Camden weighed 18 oz and Chase 13oz at 23 weeks.  Also, we could see all of the major organs on both boys.  However, the blood flow to Chase's cerebral artery was very limited, showing signs that he has anemia.  We go back for a follow-up on Tuesday and if his condition has worsened then it looks like we'll head back to Houston for a intrauterine blood transfusion.  Has anyone gone through a fetal blood transfuion that is as a result of the TTTS or any other type of condition?  Being a mommy is SO hard and my little guys haven't even made it here yet

caitdana

No advice but as a TTTS survival MoM, I wanted to say that you guys will be in my throughts and prayers. It is so hard to be in that position of the unknown and I from 16 weeks on, that is what it was. We werent candiates for the laser surgery and told me it was not that bad yet. I had my girls 3 weeks later.  If you ever need a listening ear, I am here!

ougrad1

Good luck hon....

CourtneySue

I just wanted to wish you all the best!

carriestwins

I wanted to say the same!  My thoughts and prayers are with you!

 

Temp6313048411121614

So sorry you're going through this, hoepfully things turn around soon.  The mommy worry starts as soon as 2 lines show up and I don't think it ever goes away.  When I was pg with DS1 I thought I'd worry less once he was born but it was just the opposite.  T&P's to you.

megs_glo

I just wanted to say good luck, and my thoughts and prayers are with you.

kmb585

Sorry I don't have any advice for you but just wanted to say that I love the names (DS#1 is Camden ). I hope everything turns out ok for you and those little guys will be big, healthy boys!

moisemom

Hi there!

I am wondering how you are doing.... I am the TTTS RN for the Texas Fetal Center, and we have the states most experience in TTTS and complicated twins...

we have moved hospitals and I am wondering if you went to the one your doctor referred you to?

 I see that several of our moms that we treated have also contacted you?

The condition you are describing is called TAPS, and may mean that a blood vessle has been left open.

We have performed close to 400 hundred lasers and I think we have excellant outcomes...

I fear that moms are getting treated by less experencied hands and this condition requires expereince...

 

littlewonders

Thanks for the update. I've been wondering how you were doing. 

I was admitted at 23 weeks (3 weeks post-surgery) because the cerebral artery pressure in the former recipient was high, indicating a low blood supply. She'd also lost all of her amniotic fluid. I'm not sure if that is in any way related to what you were describing. (Here's the blog post from back then: https://estherslittlewonders.blogspot.com/2009/03/please-pray-for-our-girls.html) They told us that if the problem worsened, the only option would be to deliver right away.

 Where exactly did you go in Houston for your surgery? It sounds from moisemom's (who I know in person and who is fabulous!!) that you maybe weren't treated at the Texas Fetal Center? There are all sorts of places offering laser surgery now, but we did a lot of research when we were diagnosed, and few have the experience and success rate that Texas Fetal Center does. We flew all the way from Minnesota to Houston to be treated there (even though our peri in Msp had started performing the surgery) and I don't regret the expense of that decision for a moment. So if for whatever reason you weren't seen by them, go there for a 2nd opinion right away. Moisemom will make sure you are seen tomorrow if you want to

Also, I would spent some time researching the best NICU's in your area. Just like with the laser ablation, there are HUGE differences in NICU outcomes, especially when it comes to micro-preemies. When it looked like we might have to deliver our girls in the 23-24 week range, we were lucky enough to be close to one of the best NICU's in the country in regards to saving babies born that early. Of course, I will keep my fingers crossed and hope those boys can hang in there just a little longer. But you are just about to viability now, and that's huge. If you can make it to 26 weeks, they can have a real chance, and 28 would be even better. Keep us posted!