Tag Archives: sIUGR

Twin Update: Welcome, Aria & Kiana

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On July 3rd at night we were able to welcome our twin girls. I was told they entered this world screaming – a positive sign for preemies.

They weighed a smashing 1300 & 1600g and from the very first day were showing the nurses and us quite some attitude given their size 😉.

The names: Nope, no game of thrones fans

The first thing people asked when they hear the names is whether we are big game of thrones fans. Their full names are Aria Eleonore and Kiana Elisabeth. We have chosen these names for two reasons: They both have Persian & European meanings and are easy to pronounce in English as well as German.

Aria means “air” in Italian, “noble” in Persian and is also used in Hindi, Hebrew and Albanian.

Kiana means “elements of nature: water, wind, earth, air” in Persian. It is also quite common in Hawai where it means “divine”.

Obviously, Pouya and I are thrilled. Both girls were in the hospital for a couple of weeks and I will write a separate blogpost on our experience in the Neonatal Intensive Care unit (NICU).

In the last two months it was our biggest goal to bring both girls to weigh more than 3Kgs (which would be normal birth weight) and we have achieved this task as of this week. They have strict eating times every four hours and Papa & Mama are getting used to not sleeping too much anymore.

As with all preemies we do not know whether they have suffered from the surgery, their feto-fetal syndrom (TTTS) or prematurity, but so far it all looks positive. The city of Munich is home to special doctors & newborn physical therapists that take excellent care of us.

For now please enjoy some pictures of the our girls. Thank You again for your messages and support, it has been wonderful to receive so much love from our friends ❤️

Twins after twin twin transfusion syndrom and intra uterine selective growth retardation

The first couple of weeks we spent kangorooing the girls in the NICU. They were not able to eat and had to be on breathing support.

They are both at home now and cannot protest yet against being put into matching outfits 😉.

Twin-Update: sIUGR – the new vocabulary to learn

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Dizzy sunrise over Kassel

It is early Tuesday morning and as I am writing this I am eagerly awaiting the doctors’ rounds in the hospital to convince them to release me today.

It is not a normal Tuesday, today my step sister is getting married which is the only reason I am in my home town Kassel. The babies gave me yet another scare and I was put on bedrest for the time being. One would think that is gets easier, but as time goes on, my tummy grows and this pregnancy wears me out more and more.

I have been receiving a lot of love and support in the last weeks and I am truly thankful for all of it. I have decided to be more open about what is happening no matter the outcome because I am hearing and seeing lots of people struggle: with getting pregnant, with complications, with loss, with postnatal issues such as career nose-dives.

And as many of you know I am not planning to become a stay-at-home mom, I am not planning to give up triathlon training and my active lifestyle, I am not planning to stay in Germany for too long. Yet, being pregnant comes with many people throwing their opinion and advice at you (or even better: German folks knowing already what I am going to do and how I am going to feel) and even without weekly visits to prenatal specialists and the constant fear of potential loss on mind I am finding myself in a mudpile of feelings questioning a lot of things, especially the role of women and family policy in Western countries.

Selective Intrauterine Growth Restriction

Before getting into that rant, however, here are the facts: I am in my 24th week of pregnancy, both girls (yes!) have active heartbeats. While we had been prepared for a complication called “Twin-twin-transfusion-syndrom” where the blood exchange between the babies is becoming one-dimensional with one baby being the donor and one the receiver, it has turned out that the babies have a very rare different condition called selective intrauterine growth restriction (sIUGR). For reasons unknown, one twin is not getting enough from the placenta, thus staying behind in development. So far we have a 28% growth discordance. Some twins are born with one being half the size of the other.

SIUGR is categorized into three different types depending on the blood flow pattern in the umbilical cord. When the minimum criteria were met for our baby to be called a growth-restricted twin the doctors were under the impression that we are dealing with type 1. Type 1 means that both babies have a good chance of survival and they can make it beyond 30 weeks of pregnancy.

Right before Easter the doctors noticed a connection between the babies that had a blood flow pattern that was all not too great. We were sent home with the option of terminating the growth-restricted twin (that’s what I mean when I talk about little scares).

One week later, after we had taken a break in Croatia, soaked in some sun and rested a lot, the little one’s heartbeat was much better.

Treatment of sIUGR

We are now doing something called “expectant management”: monitoring the babies each week, taking it day by day. The next four weeks will be critical. Technically, the babies have reached liveability, but since the little one is almost two weeks behind her chances are pretty daunting currently.

The doctors & staff at TU Munich’s hospital have been very helpful, explaining everything to us, comforting us, always making time.

I will give more updates soon.

A test of enduring uncertainty: my twin pregnancy

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TTTS, IUGR and a whole lot of waiting

It was after two hours of sonography that the prenatal specialist closed his eyes as if he was going through his knowledge, repeating the observations. He summarized his findings in a rather sobering way: “That is the shit with identical twin pregnancies, they are never just easy.”

There was a size discrepancy between the twins that was hinting at a condition called Twin-twin-transfusion syndrome.It is a rarely occurring condition where blood is transfused unequally from one twin to the other. Left untreated it is lethal in the majority of cases. Treatment, according to this doctor, was not possible for the next couple of weeks. Hence, nature was control.

One week after the initial diagnosis, I assumed the worst. On the contrary, though, things had stabilized. All of a sudden, the doctor considered another condition, the so called intrauterine growth restriction.

It has now been multiple weeks, countless specialist appointments and hours over hours of Googling. Talking about it has become easier: We simply do not know what is going to happen. It has also taken me some time to internalize that there is nothing I can do but to accept faith and to keep stay positive.

Being open about it was very hard for me at first, showing vulnerability does not come easy at all times. Once I opened up I learned from other people who had lost twins, received recommendations for other specialists and felt an abundance of wonderful, encouraging vibes coming our way.

During the ultrasounds I see two kicking and curling not so tiny fetuses. They sometimes wave, suck on their thumbs and they are definitely restless, especially when the specialist is trying to measure them. It is hard to imagine that we might have to undergo laser surgery and that we are dealing with the risk of loosing one of them.

Accepting something that is out of one’s control has so far not been my strong suit. This time that is all I can do: trying to get comfortable with uncertainty.