Big Mistake

Somehow, I ended up on YouTube with the common keyword “TTTS” linking all the videos I was being offered the opportunity to watch. At work. Why oh why did I do that?
Don’t do that.

Columbia Visit update…

I felt really OK about my appointment at Columbia yesteday. The doctors were thorough and detailed and obviously experienced & educated in this particular disorder in a way that (it seems) the regular high risk doctors are not. I felt like they really held our hand through the process and did whatever was needed to make us feel comfortable.
Our prognosis at this point seemed pretty good, considering. Like the other doctor, they determined that everything seemed balanced and within range. Their main issue was the fluid imbalance, which was a little above 8 for baby B- Daisy, and about 3.8 for baby A, Sunshine. Technically, those levels are not even extremem enough for a Stage 1 diagnosis. He Does think it has all the warning signs and will progress, but we’re all hoping he’s wrong. They’ll continue to monitor weekly.
Thanks to everyone who has read this- friends and strangers… although I am now using this blog as a sort of diary and sounding board, I can see the visitors and appreciate every one of you for your support.

I have a gorgeous cervix.

My Gorgeous Cervix

My Gorgeous Cervix

It’s true. I do. That’s what the ultrasound technician told us anyway. See, at columbia, they test everything. They did an internal exam to determine the length of my cervix, since that is an indicator of your likelihood of early labor in TTTS. this was something that had me worried. Especially since The Kid was 3.5 weeks early, If the cervix is shorter than 2.5cm, they do this procedure where they kinda sew it closed to prevent early labor. Well, my cervix is measuring 4.9cm. and that is officially “gorgeous”. That’s not to say it can’t shrink under the weight of two happy bouncy healthy babies, but at least it’s starting at a nice place.

Daisy & Sunshine

Daisy & Sunshine

Daisy & Sunshine

My friend came over last night and I had not yet told her about any of the drama that we’ve been dealing with. She got a new car and I was asking about it’s size, and whether 2 car seats and a booster would fit in the back seat. She said “I imagine they would, so The Kid could be in the middle flanked by her two sisters, Daisy & Sunshine!”
I was like “That’s it!!” the TTTS boards suggest naming the babies so it feels more “personal” and even the drs. mentioned that the A & B can get confusing. So, from her on out, Baby A -The doner, who is smaller, weaker and takes up less space- is going to be Sunshine- big & strong, and Baby B, the recipient- who is bigger, will be Daisy- strong and vibrant but delicate. So, really the “opposite” of their status which might, in fact, get more confusing…. but I don’t care. I find it inspiring.
Will follow up more later on my appointments yesterday at Columbia. Overall, decent news…

Columbia is a Go!

Thank God- double checked my insurance and I am covered. I have an appointment tomorrow, and I am actually almost looking forward to it. I just feel like at least with these people I am being proactive.

Will follow up and let you know how it goes…

Stupid things technicians say.

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I was telling a friend about the technician and the nurse and she told me her horror story… which made me feel a little better for myself… worse for her…

At a routine ultrasound (maybe the first or second) for her first pregnancy, she’s lying on the table and the tech is doing her thing. Then the tech turned to her and says “You know, your baby has no heartbeat”

That’s how she learned she had lost the baby.

Do you have a story about a hellish ultrasound tech or nurse? They really should be muzzled.

I’m not gonna take it

The Nurse from Hell... Though she sounded older

The Nurse from Hell... Though she sounded older

I spent yesterday at my in-laws and seeing some friends and I cant get that phone call with the devil nurse out of my mind. While I am no longer a bawling mess, I’ve gotten really angry and can’t believe that woman had the Chutzpah to talk to me like that! I mean, it would have been one thing if she had said “We need to see you quickly or both your babies will die” – not that THAT would have been acceptable, but at least it indicates an intention to help me! Saying what she did- there is just no excuse. The reason the doctor was so highly recommended was because he is (supposedly) not only smart and knowledgable, but compassionate and reassuring when a patient is dealing with all the scary stuff associated with high-risk pregnancies. That damn nurse said to me she was the doctors nurse, he was out of town and she was telling me what he would tell me if I spoke to him. Somehow, I don’t believe her. I’m gonna write to her boss.She simply should not be able to talk to people like that without ANY consequences. While I can’t do anything to guarantee anything will come of my complaint- I am entitled to write one. I hope that bitch gets fired- or at least FEELS BAD!

Why are people idiots?

Today I experienced the absolute worst encounter since this blessing / nightmare started. I thought that the original ultrasound tech who callously told me she thought she didn’t see the membrane was horrible. I should have counted my blessings.

After the original conversation with my doctor, I freaked out, cried, read a whole bunch of stuff online, and eventually decided that I was just going to hold my ground until I knew more.

The problem I was having is that I did not feel I had gotten the answers I needed from my doctor, and don’t feel he’s as concerned about “acting” upon the information he does have. I know there is only so much you can do, but I still was not happy. The idea of just “holding tight” for 2 weeks while my babies could potentially be dying, well, that just did not sit well with me.

So I started calling other High Risk MFM doctors in my area. Unfortunately, many don’t accept my insurance, are not accepting new patients, are not affiliated with good NICU hospitals, or, in some cases, are just outta town on vacation. The calls were getting exhausting.

I called a doctor that came highly recommended. Although I was pretty certain they do not accept my insurance, my in-laws had suggested that they might pay for the consult out of pocket, just so we could get peace of mind regarding all this stuff from a trusted source. After concluding that they do not in fact, accept my insurance, I was transferred to a woman who was supposed to tell me what the consult would cost if I paid out of pocket.

So, this woman gets on the phone and asks me if I have a high-risk doctor. I said yes, but that I had heard great stuff about this doctor and felt perhaps I would benefit from meeting with him and getting his input. Here is what she said to me: ” This doctor is not interested in getting into a fight with your doctor when you go back and say ‘well he said blah blah blah & you said blah blah blah.’“(Isn’t that the point of a second opinion??)  I said “OK, I was just looking to discuss my situation with someone who deals with this so I don’t feel so lost”.

She replied bluntly “Well, This Doctor does not want to see you“.

I felt like I was punched in the stomach, and felt the tears start to well up. I quitely asked “is there anyone you can recommend?”   And she said “You should call Columbia. there’s a doctor there, i forget her name, that’s who you should call.”

I said “OK- do you know anyone in NJ that deals with this?”

Her reply: “No, I don’t. You should call columbia. and you should deal with this immediatly or both of your babies are going to die.”

I was silent. Stunned. Crying in shock. She continued “I don’t have any more information for you, this doctor cannot help you. call Columbia. They deal with this. If you don’t take care of this right away, you will lose both of your babies”.

I pretty much just hung up then- though I think she may have hung up on me first (!)  And I really started crying. Did I mention I was at work? I had been holding it together so well. I run my department and didn’t wanna be having a breakdown at work, and here it was, in front of my newly hired assistant, with snot falling all over my desk.  I was just so stunned- horrified. It felt as though the devil herself had popped through the phone and stabbed me a million times with a pitchfork in the heart.

I (barely) pulled myself together and picked up the phone to call Columbia. A nice sounding woman picked up the phone. I told her who I was, and that  my doctor had detected early signs of TTTS and that’s why I was calling. Her reply “Well, you called the right place”. That was it. I lost it. I just started bawling, right into the phone. It was such a relief to hear that reassurance after all the go-nowhere phone calls I made all day- and after that woman from hell tore my heart out. I spent the next 10 minutes answering questions and giving my info though sobs and a runny nose. I felt so stupid crying, and at the same time so relieved. But she made me feel totally normal and like I was finally in good hands.

I felt so much better, and will have an appointment at Columbia next week. I just feel like this will be a much more proactive, optimistic and knowledgeable environment for me to go through this situation in. I still have to wait for them to confirm my insurance is all good- but I – and they- think it should be.

What a day. If this is just the beginning of a roller coaster ride, I’m not sure I am ready for this amusement park.

On a brighter note, I took my week 16 pics… now I just have to fix my computer and get it up here… hopefully before week 17!

more later…

sucks. sad.

So, we went for the ultrasound this morning. Since we’re now 16 weeks, it’s standard to start going for ultrasounds every 2 weeks to monitor growth and development and make sure the babies are not showing signs of Twin to Twin Transfusion syndrome. When I was first told we were having twins, the technician, who was an idiot, told me she could not see the membrane. So i freaked out and came home and started reading everything I could find on TTTS. It was not pretty. I spent a couple of days in front of the computer crying as i read stories about babies who have suffered from this. I even contacted the founder of the TTTS Foundation to find out if there were doctors in my area they recommended. Finaly, The Hubbo, in all his brilliance, said “Enough. You must stop reading this. They will see the membrane at the next ultrasound and all will be fine”. So, feeling educated enough to put my mind at rest, I stopped reading and started focusing on the good stuff about being preggo and having beautiful identical babies.

My next few ultrasounds were great- babies were the same size, heartbeats good, and the membrane is totally there.

So today, i walked into the doctors office with no concerns. They were going to tell me the gender, (girls— which I kinda already knew), measure the babies and send me on my way.

The technician was great- joking with us, showing us the different parts of each baby. At one point i was looking at the legs of one when a leg of the other shot in between and kiced the first kids legs apart. It was amazing. At another point, baby B was leaning back on it’s back, and baby A had her head on baby B’s belly like it was a cozy pillow. It was so amazing.

After the ultrasound, i waited in the doctors office so he could talk to me and just confirm everything looked great. It was a while before he got there and I was getting antsy. Finally, he showed up and toldme that he was gonna cut straight to the point. He is already seeing signs of TTTS. The bladder of baby B is a lot smaller than baby a- and baby a is larger than it should be.  He is not ready to declare that it is , in fact, TTTS, because these are just signs… but they ae bad signs. especially this early. TTTS can show up anywhere from 16 weeks through birth, but if it’s gonna show up, it’s better to happen later, so they can just work to stretch your pregnancy till delivery. When it starts to show this early- it’s bad. if it does progress, the likelyhood that my babies will make it to delivery, even a early one, are slim. And the path to get there is not an easy one.

As he talked to me, I really didn’t even have that many questions. because I HAD read so much, I understood just about everything he was saying. There was really not much that went through my mind. I kind of just stared into the corner. On a positive note, they are still measuring the same size. I don’t know how much comfort there is there, but I’ll try to find some.

So now, we wait. there is nothing that can be done except that I can try to intake as much protein as possible. I am scheduled to go back in two weeks for another ultrasound to monitor their progress.

Absolute best case scenario: everything is looking fine. The readings today were just ‘todays’ stautus, and in two weeks their bladders are more balanced. That, it seems is unlikely.

Next best Case scenario: Things look the same. Both babies are still growing the same and their bladders appear the same “off” as they do this week, in which case, he will not declare that I have developed TTTS, and we will wait another two weeks.

Not so great case scenario: It’s worse. They measure off, bladders are worse…. he declares TTTS. Then we decide the next step. (amnio to remove excess fluid from one… I think)

Worst case scenario: I am not thinking about that. It’s not an option.

I really wanted to take my 16 week pic when I got back from the doctor. i never had a chance to do the 15 week – sorry- but now I have been crying for the last few hours and look like crap. Also, my mac is broken so I can’t even do my nice little graphic displays I like to do. I’ve been blogging on my husbands PC and and the only thing good about that is I can do it in front of the TV cuz it’s a laptop. Even though the TV’s not on.

Gonna go have me a protein shake and feed my little girls.

Week 16 ultrasound

So, I’ve been stressed about the possibility of twin twin transfusion syndrome since I first learned about the twins and what TTTS is. So, 16 weeks is really the earliest they could look and see signs of that if it’s happening, so I’m really anxious about the appointment tomorrow- though I’m sure everything will be fine.

After 16 weeks, they’ll be giving me ultrasounds every other week to monitor their growth and amniotic sacks and heartbeats. They better not charge me copays at every visit!!!