SIUGR update

If you missed my original thread, it's here...

At our 20w "big" ultrasound at the peri, we found out that one of our mono/di girls has SIUGR. She was less than the 3rd percentile for where she should be and the bigger twin was around the 10th percentile. Both looked perfect on ultrasound, just small with intermittently absent end diastolic bloodflow on Baby A (the smaller one). At the time we were told that we had a 50/50 chance of having this girl as well as the chance that if she were to demise, it might cause the other one to die inutero as well or have serious neurological issues. We were offered cord ligation but opted out since both look good at this point. We were told to come back in 3 weeks to check growth.

My husband and I did our research. We got in touch with Dr. Quintero's team who does experimental surgery for this type of situation but found out we didn't qualify since the bloodflow wasn't always absent and was never reversed. As far as I'm concerned, this is a GOOD thing! But Dr. Quintero's team also said that I should be seen weekly for dopplers so bless them, they got in touch with our peri who started scheduling us weekly. Each week everything has been "stable".

Today is our 3 week growth scan. I'm so nervous!!! I've been spending the last 3 weeks eating a LOT of protein, trying to relax as much as possible (I'm not on bedrest, just at a desk job) and trying to think positively but I'm so nervous today. For Baby A to maintain the same level of growth she needs to be at least 400g (she was 202 last time) to remain at the 3% level. The doctor wasn't optimistic about it.

Last time they were 7 oz and 10 oz so now we need them to be at least 14 oz and 1 lb 1 oz. It just seems crazy for them to have been able to double their weight in 3 weeks.

I need reassurance before my appointment! I'm so nervous what they'll say!!

 

Good luck... I hope everything goes well. Please update us when you get back!

 

Praying they make up that growth and MORE!!! {{{{{{{HUGE HUGS TOO}}}}}}}

 

:hug: :hug: Good luck, I'm keeping you all in my thoughts. :hug: :hug: Please update when you can.

 

How did it go?? I'm so glad you got in touch with Dr. Q. His team is the BEST! I was enrolled in his IUGR study, but never qualified either. Hoping things went well!

 

Good luck I hope you get some wonderful news today!!! :hug:

 

Well, things remain stable. They're not better and they're not significantly worse. Baby A measures at 13 oz (365g) and Baby B measures at 1 lb 1 oz (481g). Baby A is still less than the 3rd percentile for growth.

Nothing has changed, I'm still just going to go in weekly for dopplers. I'm 9 days away from official "viability" so I guess we'll talk more about our options then.

At least they're growing, right?? This is so hard.

 

Beckylynn I am so glad nothing has changed. I have been thinking about you and your girls. I am so glad that you are having weekly dopplers, I think I wrote in your first thread that is what I have been doing ......they need to keep that close eye on to make sure they can act if little twin was going to demise. But by all acccounts they are doing great and you don't need to worry about that anymore!
At my 25 week scan, my little one was 480gms, and it sounds like you are on track to hit that too. I am nearly 27 weeks now and could possibly go as far as 32 weeks. I have been having twice weekly u/s since 26 weeks, no bedrest either.
Please take comfort in the fact we were told exactly the same things you were, and we are still going strong at 26 weeks. I am sure you will too!

 

My situation was similar - and both of mine ended up less than 3rd percentile when born. With bedrest and protein drinks, the dopplers stabilized and both babies followed their own growth curve, which is the important thing. My smaller one was several weeks behind and my larger one was also about a week behind. You can check my blog for actual weights during this time - august 07 orso. If my blog isn't in my siggy PM me and I'll give it to you!

 

QUOTE(beckylynn @ Feb 6 2009, 06:14 PM) [snapback]1179380[/snapback]
Well, things remain stable. They're not better and they're not significantly worse. Baby A measures at 13 oz (365g) and Baby B measures at 1 lb 1 oz (481g). Baby A is still less than the 3rd percentile for growth.

Nothing has changed, I'm still just going to go in weekly for dopplers. I'm 9 days away from official "viability" so I guess we'll talk more about our options then.

At least they're growing, right?? This is so hard.


I'd say that sounds pretty good! Before we were diagnosed with official TTTS (we were waiting for our donor to have even less fluid to finally qualify), Dr. Q mentioned the IUGR study, too. I'm not sure why they mentioned it when they said immediately after the statement that we don't qualify for that either, lol.

Good for you for being proactive and contacting him. Megan is right--they really are an absolutely amazing team and I wish everyone in the world could meet Dr. Q. He is so obviously caring about his patients. I'm glad that he spoke with your team to get more monitoring for your babies. You're all in my prayers :hug:

 

Stay positive - that is my best advice for you. I have been batteling severe IUGR since about week 15-16 or so and it is always a roller coaster. I am 1 week away from delivery and still my little boy is tiny (only 2lbs 14oz) and will be tiny when he is born.

You'll make it there, just stay focused, rest, eat and most of all try to enjoy being pregnant. That is my one regret, I haven't enjoyed it bc I spent all of it so afraid...

If you want to talk just PM me and I will fill you in on my whole story.....

Joanna

 

Jessy has poor to no flow at times but never reversed. She also had only 2 vessels instead of 3. Our doc told us we would be luck if she made it to birth and she did. She's my little trooper

 

I just wanted to say a bit THANK YOU to everyone for your thoughts and prayers. They really mean a lot - I get so discouraged sometimes but it really helps reading your positive stories. Joanna, I've been following your situation from the beginning and I'm so happy for you that things seem to be working out! I just pray it does for us as well.

We have an OB appointment on Wednesday (our first since the SIUGR was diagnosed 4 weeks ago) and a doppler on Thursday.