Diagnosis Confirmed

>> Wednesday, January 21, 2009

It's weird how three weeks of waiting seems like a lifetime and each day you wish the wait would be over. Once it does get here though, you wish it wasn't actually here. There was a part of us that hoped it was all just a weird angle on the ultrasound when they found it originally on Dec 29th. We both knew in our heart that wasn't going to be the case, but you still hang on to that small hope and pray for a miracle.

It is amazing to see how much they have grown in just 3 weeks. So much so that you don't need to be an ultrasound technician to identify the head, arms, legs, etc. We already knew that one of them was a girl, but the other twin has been incredibly shy in previous ultrasounds. Just a few minutes into the ultrasound we heard that we are indeed having two girls. We were thrilled to finally have that mystery solved and even more thrilled to know that both are girls. Girls are fighters and we need that!

They did their usual measurements and both twins are growing at the perfect rate. They both are actually measuring the same as if this was a single pregnancy. Heart beats were around 143 and measured 16 weeks 3 days.

Each time we heard good measurements, we braced a little more for what we knew was coming. Not long after they started looking at Twin A, it was confirmed. Our little girl has a Congenital Diaphramatic Hernia on the left side which is the most common location. The fact that we had prepared for this outcome definitely took some of the sting away and put us into fact finding mode. We had plenty of questions. Unfortunately, answers were not as plentiful as we had hoped. What we do know is the stomach and intestines are in the chest cavity. The heart is pushed slightly to the right side of where it should be. What we don't know is if the liver is in the cavity or not. This is critical to the outcome of this condition. The problem with CDH is that the organs prevent the lungs from developing. The intestines and stomach are both fairly soft and they give which still allows the lung to develop to some extent. If we find out down the road that only these two organs are in the cavity, the prognosis for survival is better than 75%. If we find out that the liver is in the cavity, then we have a different ballgame entirely. The liver is much more firm than the other organs and it doesn't give when the lungs try to grow and push against it. The prognosis for this situation is not nearly as bright. Fortunately, the doctor didn't see the liver in the chest cavity, but his words were followed by a phrase I am getting tired of hearing...... "but, it's still early".

There is a slightly higher chance that this will be accompanied by chromosomal abnormalities like Down's. The only way to confirm this is to do an amnio. Unfortunately, that raises concerns and risks to both twins. Our decision on this will come over the next few weeks after a lot of prayer and discussion.

Our next step is to wait 4 weeks to see the pediatric cardiologist to check her heart to see if there are any issues there. We will also get another ultrasound to see if they can see anything else. After that it is 6 more weeks of waiting until we go for the MRI which will really tell us the full story of what we are dealing with.

Thanks again for all of your thoughts and prayers. We will post the ultrasound pics this weekend and we will continue to keep everyone updated.



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