Wednesday, October 13, 2010

Here's what happened: The Dramz

Thursday, 10/7: My fun taco or sausage appointment took a turn for the not-so-fun when the doctor had to come help the ultrasound tech scan Twin A's brain.  And then they Found Something Questionable and also I Will See The MFM Afterall.

And after being at the OB for nearly two hours, losing my shit for the last 20 minutes, and looking like a complete and total pistachio?  All I wanted to do was come home and play with Olivia and then bury my head under the covers and just get some sleep.

But I waited to long to eat, and then after I did finally eat I barfed it all back up.  And then I was sick and didn't sleep all night and then I had to go to work.  Isn't my blog so much fun?  It doesn't sound like as much fun as it really was.

Weekend in a nutshell: sick, woe, worry.

Monday, 10/11: Ultrasound with the MFM (Dr. Stewart, for my locals).  Ultrasound lasted about an hour and a half, and then the doctor came in.  Brains looked fine, actually.  Just fiiiiiiiine.

Howevah.

One twin weighs 13 oz, one weighs 9 oz.  OH NOES, apparently.

Identical twins are at risk for Twin To Twin Transfusion Syndrome - one baby gets too much blood, the other baby not enough.  Basically, both of them are screwed if it gets out of control.  And by screwed, I mean all sorts of things, like Probably Will Be Preemies If They Are Lucky.  And Other Very Bad Things If They Are Not Lucky.

Oh, but Dr. Stewart.  Really.  I love him and not in a naughty way.  He was genuinely kind, he explained things simply but not in a condescending way.  He really, really listened to my questions and answered them completely.  He will be my doctor for the rest of this pregnancy.

BUT.  Anyway, not to get too happy on you because DANGER AND WOE!  Dr. Stewart thinks that mah baybees have Twin To Twin Transfusion going on, and that a visit to a specialist is in order.  Because, you know, this specialist can perform a surgery in utero to help correct the problem.

Surgery.  In utero.

So I see this doctor on Monday, and it's in Columbus which is a nice 2.5 hours away from us.  And we have to be there at 7:45 a.m.   His name is Dr. O'Shaughnessy and if any of you have a rave review, please let me know.  Because I made the mistake of Googling Twin To Twin Transfusion and now I'm all kinds of worried.  Please tell me that he's the sexed-down version of Addison Montgomery Shepherd.

That's the update.  That's the reason I've been MIA.  It's just all too much right now and all I want to do is sleep and cuddle my Olivia and bury my head in the sand.  But I live in Ohio and there is no sand and so maybe I'll just stuff my face into a big bowl of cheese sauce.

--

One Year Ago: Eight Months.  And By Eight, I Mean Ate.
Two Years Ago: Please Nominate Me For What Not To Wear
THREE YEARS AGO!: Trying to Conceive: A Month-by-Month Guide



69 comments:

Crazy Sister said...

Oh, sweetie. What sucky stressy stuff.

Burying your head for a while sounds like a good thing, at least until you see Dr Shaughnessy, who will be superb and excellent, I'm sure!

Amy said...

Goodness...At my super-fun-reveal-what-you-are-having appointment, it turned bad fast. Basically we were told Baby A had all kinds of problems and probably a chromosomal abnormality. It took to fun right out of that appointment and the rest of the pregnancy. Anyway, bury your head in the sand and relax.

Bethany said...

Oh, hon', thank you so much for updating us! I know that was a hard post for you to write and we so appreciate it so we can be thinking, praying, and researching for you! I wish I could be of more help, but I don't know anything about Dr. O'Shaughnessy, but I'm sure someone does. Sleeping and cuddling with Olivia sounds like the perfect prescription until Monday - and - Look! as a side benefit you'll be following the crazy twin diet anyway!

Rachel said...

As soon as you said in utero surgery, I immediatly thought Addison Montgomery Shepherd.

krlr said...

I'm so sorry this hasn't been easily. I had my own round of perinatal centers, specialists, blah, blah... Don't you just loathe those 16 yr olds pushing babies out? Big mushy hug.

LCP said...

Hi! I have a coworker that flew across country for that surgery and it was a success! She did have preemies but they were/are in perfect health. Keep positive and you are in my thoughts and prayers.

renee said...

well, you have my rave review of him. i can tell you that a cordocentesis is not as scary as in utero surgery must be, but he was amazing. crammed in the little teeny tiny room was about 25 (no joke) ppl watching him and dr mcdreamy perform this thing and he was just amazing. i am actually glad i didn't let the drugs knock me out b/c it was amazing to see him do something that would scare the bejeezus out of most ppl. and since i was awake, he was talking to me the whole time and telling me exactly what he was doing and when i got worried he was calming me down b/c there were 25 ppl between me and josh lol. anyway. he's really amazing. ok. i'm done having an old man crush on him for a minute. lol.

Julie said...

Oh! I can send you sand!

This is scary stuff and I'm so sorry you have to face it. I am hoisting a taco -- two tacos -- in your honor and hoping for the very most unequivocal best.

Blair@HeirtoBlair said...

That is scary stuff, but you are handling it beautifully. Thinking of you.

areyoukiddingme said...

So sorry you have to worry at all. You got one rave review already, so I hope the doctor lives up to that. Much luck - I'm sure twins A & B are scrappy little fighters and will be just fine.

I don't blame you at all for burying your head under the covers. And they're much softer than sand.

Anonymous said...

I can't say I blame you for wanting to hide away..scary stuff! Thinking about you guys..

Brittany said...

My friend Esther has girls that suffered from TTTS, had the in utero surgery and are now healthy happy one years olds. Check out her website and maybe drop her a line - I know she is always happy to tell her story of getting through it!
www.estherslittlewonders.blogspot.com

Thinking of you and your sweet babies!!

sheilah said...

I am keeping everything crossed for the sausages/tacos.

As for the specialist 2.5 hours away? Drive down the night before (do you have grammas/grampas/aunts/uncles/someone-you-trust close who can watch sweet Olivia for a night/day?), stay in a nice hotel and avoid the getting-up-at-3AM-get-toddler-up-dressed-and-fed-and-driving-2.5-hours. Hate that.

MFA Mama said...

Ah, shit. I'm so sorry.

JoDee Hale said...

I know when you're in the middle of worry and woe about your babies, there's not a lot that anyone can really say to comfort you... but I've seen WAY too many healthy babes born after doctors saw something worrisome on ultrasound. My dear friend Barb has 16 month old twin girls and all throughout her pregnancy she was in and out of specialists offices because one baby was much smaller than the other... and to this day she still is smaller- healthy, beautiful, energetic, perfect- just smaller. Keep your chin up.

sheilah said...

...and now I read the previous entry and learn that tacos abound in your house...

Sara B said...

I'm sorry you are going through this. Definately check out Esther's blog. She's a sweetie and has a lot of good info on her blog.

As a preemie mom, I can promise you that you are capable of getting through things you never thought you could handle.

Sending your baby girls lots of love and healthy thoughts.

Beth Rutter said...

I have heard amazing things about Dr O'Shaughnessy. I work with special needs infants and many of my mom's have had healthy, perfect babies due to his treatment. Sending you lots of good vibes!!

Rebecca said...

If it goes to surgery then you should have them take photos of the babies in your uterus...........I saw one several years ago that was either in Time or Newsweek ...one of those news magazines.

You still have a great voice here on your blog so I believe that everything will be just fine. Lots and lots of prayers for, you the babies, your family, and your doctors.

HereWeGoAJen said...

Oh no. I am sorry for the drama. My fingers are crossed for this to be EASY.

Gabrielle said...

You might already know this success story - but it might help to contact Esther as she had great results with her surgery

http://estherslittlewonders.blogspot.com/

Best wishes!!!

kate said...

Good thoughts and wishes headed your way. I'm so sorry things can't just be easy for you. I hope the doctor is amazing and the little tacos are both happy and healthy on the outside in a few months.

Mandy Hornbuckle said...

So sorry to hear about all the drama. You and the tiny people in your uterus will be in my prayers.

jen said...

All five of you are in my thoughts. I'm so sorry you're going through this. Stay strong for your girls.

Yias Yias Girl said...

Oh Jen, what news. I hope you good things this Monday.

babytears said...

I will be praying for you every day between now and Monday. I expecting b/g twins due within a day or two of yours (feb 23 official due date) and have been following your journey since Olivia. I had a scare with high AFP numbers- dr thought one had spina bifida- had to wait 9 days to see a specialist. terrifying. All seems to be fine. Will be praying you get the best possible news on Monday and for strength throughout.

BTW, totally in love with Addison Montgomery. Watched every episode of Private Practice over the past few months. Now every Dr I see disappoints me- husband keeps telling me I can't compare real doctors to a fictional dr. Here's hoping you meet the real life equivalent of Addison!

Tara said...

I see that others have already posted Esther's blog. She's definitely one I'd recommend. I also know of this one: http://babbsbabytrail.blogspot.com/ Her girls were born early after long bedrest.

My boys had TTTS. I can't remember your due date but mine were 12oz and 8oz at 18w6d. We did not have surgery. It wasn't warranted. We moved at 24w (military) and saw some of the best MFMs in the military. They followed me/us very closely. They were concerned with B only. Monitoring 2-3x per week plus a 1h drive each way. It was nerve-wracking and I didn't blog my entire third trimester because of it.

My boys had TTTS in utero and at birth. A was the recipient, stealing nourishment from B. But at birth A got stuck (head to my side, hand up by his face, and cord around his neck) so he was the donor twin of lots of blood. A came out pale white but only needed observation. B was beat red when he appeared 5m later. He was smaller (4.15 to A's 6.5). He did go to the NICU for severe jaundice. There he developed a stage 1 NEC (probably not related to the TTTS) so he stayed for 18 days. A came home with us.

Right now they're about to turn 1. A is 95% for weight, height, head and B is 50% for weight but 90% for height and head. They have zero lasting effects from TTTS.

I will wish you luck on Monday. Congrats on 2 girls.

Amanda said...

Well shit. That really ruins the fun surprise now doesn't it. Dr. O'Shaughnessy sounds like an amazing irish doctor and as long as he is not a leprachaun, I beleive you are good.

Lots of us will be thinking about you and your taco party on Monday. Good luck. : )

ras said...

I'm so sorry. I'll be keeping you in my thoughts, hoping everything turns out ok.

k said...

Jen, I am so so very sorry... I know how tough it is to be faced with bad news after that scan. (I was a complete mess.) My heart goes out to you.
But it sounds like you have fantastic care. Try to hang in there.
And many warm hugs to you all.

Sylvia said...

I am a quiet follower but love your blog. I work at Christ Hospital in Cincinnati and Dr. O'Shaughnessy has done a few procedures here with Absolute amazing reviews. You will be in great hands!

Jennifer said...

There's no sand here in Iowa either, but I do sell Tastefully Simple, and therefore have access to some amazing cheese sauce, which I would love to send you (for free, of course, in case you were thinking I was trying to sell you something... which would be a plain disgusting thing to do.)

Anyway, you can email me your shipping address if you'd like. It's jenrusch at gmail.com. And seriously, I will ship you some cheese sauce to hide in until this yucky patch is over. :(

-Just another Jen-

Jen Nelson said...

So sorry for your woes :( That is scary. Hang in there and give Olivia lots of snuggles.

alison said...

Sorry for the woe, hoping this specialist has a plan for your babes. Will keep you in my thoughts and prayers. xo

ellie said...

aww, crap! you (and the two lil tacos) are in my thoughts and prayers.
my sister had a TTTS pregnancy so i know a lot about it. don't worry.

Kate said...

I feel for you, and am thinking good (pink!) thoughts!

DO NOT use Google on anything scary. It is the worst thing ever! If you need to talk, contact your local NICU and see if they know of a mom who can talk to you. I've been there with preemie twins. It isn't fun, it is scary, but it is a very special club and we all help each other. Lots of love to your family both in and out of utero!

Jennifer said...

I just saw a local news story about twin to twin transfusion syndrome on the tv a couple days ago. Here's the link if you're interested. I'll be praying!

http://www.newsok.com/article/3503549?searched=twin&custom_click=search

Parsing Nonsense said...

Oh dear, I'm sorry that this is happening! Hopefully you'll get some good answers at your appointment. They caught the issue early, which is always a good sign, Your little twin girls will be in good hands!

Kahla said...

Wow, that is a tad scary. I was an identical twin and my mother didn't know until we were born. Katie was 5.11 and I was 6.1. No clue if we had that or not though. Sending lots of P&PT your way. I don't even have anything whitty to say because I know this must be terrifying.

Anonymous said...

http://www.illinoisrighttolife.org/TTTS_Prenatal_Treatment.htm

FSD said...

Haven't commented in a long time, but I continue to read faithfully. I'm so sorry for your scare. I will keep your sweet babies and you in my prayers. Hoping for a great update after you see the specialist.

Vaso said...

I am so sorry about your ordeal. I am sure everything will be ok... Drs like to talk about the worst case scenario and usually things are much better than initially described... I can imagine how difficult it is for you, but be positive until Monday!!!

From what I gather from your other readers, this Dr you'll be seeing is great!!!

Good luck...

Carolyn said...

Three girls! Holy crap!
Congratulations! I can only imagine the cuteness in your future!

Emily said...

Hugs and positive karma coming your way!!!

Suz said...

I'm sorry you're going through scary stuff! Hoping & praying your next appt goes great & you have a real life Addison to your rescue.

thereedfeed said...

My thoughts and prayers are with you! I cannot imagine the worry, BUT please know that one of my students' mom's went through this procedure with good results over a year ago.

Anyway- I pray you are in good hands! good thoughts and vibes coming your way!

Anonymous said...

Good luck to you and your little kidos.
Check out Ruben Quintero, M.D., at St. Joseph's Women's Hospital in Florida.
He was on Discovery Health Channel and other programs regarding TTT and the surgery.

Alexandra

Katherine said...

Good luck with your next appt. I really hope both girls are ok.
As for getting there for a 7:45 appt, an overnight in a nice hotel sounds like it would be a good idea (if your husband can come along).

Megan said...

I don't have any personal experience with TTTS, but have 2 friends who have. Neither of them needed the surgery and now have healthy twins.
Sending all the positive thoughts I can, and I agree that a bit of burying your head in the sand is in order or you will send yourself crazy.

Heather said...

So sorry things are so stressed. Hang in there. Having been close to where you are, I will say, try not to stress or think about it, and just do what the doctors tell you to do.

Sunny said...

ugh I bet your super stressed :( hoping it's not twin to twin transfusion. Sounds like you have awesome Doctors praying all goes well with your wee ones ♥ ((HUGS))

Anonymous said...

Hugs to you...good thoughts coming your way.

Take care of yourself...

Anonymous said...

Wishing you luck on Monday & a weekend that passes quickly....

Anonymous said...

Praying for you! We have some friends whose twins had TTTS and they traveled from Texas to Florida for that surgery. That was 7 or 8 years ago and everything went perfectly. Their babies are happy, healthy and growing up fast! I'm sure it's so scary, though. Will continue to pray.

Leah said...

I will say a prayer for your little girls. I hope everything goes smoothly and easily.

L said...

You've had so many great comments already, but just know you aren't alone. We went in for our big u/s and had a horrible experience-- they decided baby's nuchal fold was high and had a potential hole in his heart. We went through hell, to specialists, and finally turned down further testing because of a great OB who believed our baby was fine. In March I gave birth to a perfect, healthy baby boy. Ultrasounds piss me off, I've heard of so many people being told their baby has a zillion issues they don't have. I wish someone in the medical field would speak out on this issue, it's really terrible. Anyway, my situation is not remotely similar to yours, but I can guarantee I wish just as scared as you were. Hang in there, and don't stop writing.

Kelly said...

My boys suffered from TTTS also. They are now 3 weeks old, born on Sept 22nd 2010. I can't tell you how scared I was. I was in the same place as you are now. Just remember, they caught this early!

I met with my MFM, and he had me be seen at Boston Children's hospital. I had hours and hours of ultrasounds, echo's for the babies, and a MRI. They were looking at blood flow on both babies, making sure their hearts were functioning well. In total I think it was 12 hrs of testing in one day that I went through.
We never got to the stage that they boys needed the laser sugary, But I did have to have a amino reduction done on Baby A. My perinatologist ended up taking over a liter of fluid off of baby A. It was the scariest things that i have ever had to go through. But would do it a million times over.

Words of advise that you should start doing now no matter what anyone says. Start drink BOOST high protein drinks now. And drink 3 daily. You need all the protein you can get. I don't know what it is that helps but trust me it does. I started drinking these at about 22 weeks right after I had the amino reduction and it helped stabilize my fluid levels. My OB thought I was crazy for even say that, but it worked. There was one week that I decided that i was only going to drink 2 drinks daily and my fluid levels went off again. They remained "normal" as normal for us could be when I went back to the 3 a day. I did end up gaining a little extra weight from the drinks, they are loaded with vitamins, minerals, and high amounts of protein. Oh yea and fat. lots of it. But I SWEAR it works.

After my amino reduction, I was seen by my specialist every week for ultrasounds. They measured fluid levels on both babies. When looking at each baby, they were looking for full bladders,stomachs,
kidneys, and always hearts. They major things that they looked at besides the heart and kidney like I said was the bladder and stomach. That was to me one of the most important things (along with the fluid levels). As long as they were filling their bladders and emptying them that's a great sign. In the end, I think I had over 50+ ultrasounds and have over 300 pics of the boys.

I know personally what you are going through. And I can't and wont tell you that it gets any easier. Every week was torture to me. Not knowing what was going on. But knowing that I was being treated by the best doctor that I could find and that I trusted more than anything Made it all so much better. We actually ended up naming our baby B after him. Seeing as though he saved them.
I know you don't know me, but I am here if you need anything. Or you have any questions on anything.
Like I said before my boys are 3 weeks old as of yesterday. My MFM took them by c-section at 35 weeks 4 days. Finnigan (Baby A recipient) was 5 lbs 1 oz and Benjamin (Baby B and Donor) was 5 lbs 6 oz and both 18 inches. They stayed in the NICU for 24 hrs just for observation. Both came home with us. please please email me if you need to talk to someone that just went through this. I didn't have anyone to talk to when all of this was going on with me. I know just having someone to hear me would have helped me so much. My email is cran110378@yahoo.com
You and your babies are in my thoughts and prayers. Remember you are a strong woman. Keep your head up.
Kelly

Kelly said...

My boys suffered from TTTS also. They are now 3 weeks old, born on Sept 22nd 2010. I can't tell you how scared I was. I was in the same place as you are now. Just remember, they caught this early!

I met with my MFM, and he had me be seen at Boston Children's hospital. I had hours and hours of ultrasounds, echo's for the babies, and a MRI. They were looking at blood flow on both babies, making sure their hearts were functioning well. In total I think it was 12 hrs of testing in one day that I went through.
We never got to the stage that they boys needed the laser sugary, But I did have to have a amino reduction done on Baby A. My perinatologist ended up taking over a liter of fluid off of baby A. It was the scariest things that i have ever had to go through. But would do it a million times over.

Words of advise that you should start doing now no matter what anyone says. Start drink BOOST high protein drinks now. And drink 3 daily. You need all the protein you can get. I don't know what it is that helps but trust me it does. I started drinking these at about 22 weeks right after I had the amino reduction and it helped stabilize my fluid levels. My OB thought I was crazy for even say that, but it worked. There was one week that I decided that i was only going to drink 2 drinks daily and my fluid levels went off again. They remained "normal" as normal for us could be when I went back to the 3 a day. I did end up gaining a little extra weight from the drinks, they are loaded with vitamins, minerals, and high amounts of protein. Oh yea and fat. lots of it. But I SWEAR it works.

After my amino reduction, I was seen by my specialist every week for ultrasounds. They measured fluid levels on both babies. When looking at each baby, they were looking for full bladders,stomachs,
kidneys, and always hearts. They major things that they looked at besides the heart and kidney like I said was the bladder and stomach. That was to me one of the most important things (along with the fluid levels). As long as they were filling their bladders and emptying them that's a great sign. In the end, I think I had over 50+ ultrasounds and have over 300 pics of the boys.

I know personally what you are going through. And I can't and wont tell you that it gets any easier. Every week was torture to me. Not knowing what was going on. But knowing that I was being treated by the best doctor that I could find and that I trusted more than anything Made it all so much better. We actually ended up naming our baby B after him. Seeing as though he saved them.
I know you don't know me, but I am here if you need anything. Or you have any questions on anything.
Like I said before my boys are 3 weeks old as of yesterday. My MFM took them by c-section at 35 weeks 4 days. Finnigan (Baby A recipient) was 5 lbs 1 oz and Benjamin (Baby B and Donor) was 5 lbs 6 oz and both 18 inches. They stayed in the NICU for 24 hrs just for observation. Both came home with us. please please email me if you need to talk to someone that just went through this. I didn't have anyone to talk to when all of this was going on with me. I know just having someone to hear me would have helped me so much. My email is cran110378@yahoo.com
You and your babies are in my thoughts and prayers. Remember you are a strong woman. Keep your head up.
Kelly

Kelly said...

Sorry it posted twice

Laura said...

Don't have any experience, but I wanted to say I'm sorry to hear about the drama the girls are causing already! I am hoping for the best outcome for you and your GIRLS! Congratulations!

Pyjammy Pam said...

Oh man, that sucks. :( I read this blog:
http://miraclesofmultiples.blogspot.com

good luck and keep us posted!

Anonymous said...

sending positive vibes your way!

Poppy said...

Well darn had I known you were in need of sand to stick your head in I would've had my daughter bring some from Wilmington, NC where she lives. She flew in today..alas, sandless.

Anyway it's been a long, long time since I've commented on your blog but I am a faithful reader. I have a friend who saw Dr. O'S. She loved him. He saw her through a difficult pregnancy and I do believe she worships the ground he walks on.

I'll say lots of prayers for you and the babes. Hang in there! I'll be thinking of you.

By the way...I live in a suburb SE of Columbus *waves to fellow Buckeye!*

Hilary said...

Congrats on the tacos by the way. I am due in December with a singleton boy. This is my first and I can only imagine how scary this must be. I am sure this Dr. can perform the surgery and it will be a great success!! He probably does this type of thing all the time. I have seen Dr.Stewart myself, by the way, I love your comments about him! :) Good luck, and I am thinking good thoughts for you!

Amy said...

This is really all just routine. I was threatened with "OMG! The transfusion is eminent!" throughout the entire pregnancy and my IVF twins were just fine. They were born - and remain to this day - separated by 1.75 lbs.

Bekah said...

My mother in law had a set of identical girl twins in 1988. Thanks to the wonderful medical care military preggos tend to receive in army hospitals (and I hope you sense my sarcasm), she never had an ultrasound, and the doctor dismissed her when she told her she thought she might have twins in there. MIL was told that maybe she should "stop dipping into the twinkies". So, twins were born (at! 41! weeks!), and the nurse that was left to deliver the placenta was all sorts of freaked out and rushing for a doctor when another baby started coming out. There was around a two pound difference between the two of them. In spite of that, they were both healthy, no nicu time. They've never had any problems aside from being occasionally annoying. They were also known to fight as teenagers by calling each other ugly and genuinely not catching the irony in the statement.
It's good that you have doctors who are taking your situation seriously, even if nothing ever comes of it. Your babies will definitely be taken care of. :) (Also, I really hate ending sentences in prepositions, but I'm also too lazy to do anything about it. It's a curse.)

Rebecca said...

Have you found your local twins club yet? If not take a look at:

http://www.nomotc.org/index.php?option=com_clubsearch&Itemid=43

You should definitely join for many many reasons but for the immediate I'm sure you find lots of support and probably some other women who have been through the same thing.

Baby Bloch said...

I found your blog through noswimmers. Just briefly scanned your story. I myself suffered three years of infertility and one miscarriage before having my daughter 2 1/2 years ago. We still plan to have another someday so I am not sure the battle is over yet. I wish you the best of luck with your surgery and hope everything works out.

ferfischer said...

My girls had TTTS too - diagnosed at 17 weeks. I spent 21 weeks on bedrest, drinking 3 Boost drinks per day, and the TTTS stabilized and we didn't need surgery. I have plenty of friends who had the surgery though! We got very, very, very lucky, and I know it every day. They were full-term, healthy - at 38w4d and came home with us. Our story doesn't stop there, but TTTS was only the first part! Hang in there!