Wednesday, May 29, 2013

Our appointments and plan

I just updated the Heart Mamas group, so I will just copy and paste what I wrote there.  In short: good day with good doctors.  It's amazing the difference in medical advice when you have a good doctor.

Here's an update, for those that have been keeping up with us: We went for 2 appointments yesterday. One was to a genetic counselor and one was for a second opinion for HLHS found in the baby. I am now 21 weeks. 
The first appointment with the genetic counselor was really nice. They are sending us for an amniocentesis to rule out any other genetic problems that could effect the outcome of this baby. We will get all of the results in about 3 weeks.
 The second appointment with the pediatric cardiologist was incredible. We saw Professor Rein, the head of pediatric cardiology at Hadassah Ein Kerem. He was such a wonderful doctor, warm, compassionate, patient and positive. He never once mentioned termination or quality of life. He felt very positive about going through with the surgeries. However, the imaging wasn't clear but it looked like there was an obstruction in the PFO. In 3-4 weeks time, I am going to see him in the hospital and they will do another echo to see if there are fluids passing through the PFO or if there is really an obstruction. If there is an obstruction, he explained to us that there is little that can be done and we wouldn't be able to make it to the surgeries. However, if this isn't an obstruction, he felt that there was no reason not to go ahead with surgeries and felt that we should expect a good outcome. He also told us about Dr. Erez, (I heard about him from a number of you) that moved from Texas and is considered to be an incredible surgeon in dealing with HLHS. So, while we're worried about this obstruction, it was a very positive appointment. It was very informative and he stayed and answered every single question that we had. He was truly wonderful. Keep us in your prayers!

Thursday, May 23, 2013

Hope. Question Mark.

We've decided to go for a second opinon.  The doctor we saw gave us a very one sided view.  He clearly was pushing for us to terminate and when we asked any questions regarding a possible positive outcome, he was hesitant to say anything and we felt that we were prying the information out of him.  He also couldn't answer our questions properly.

We are going on Tuesday, the same day as the genetic counseling, to see Dr. Rein.  I've written down a list of questions for him. 

Here is a link to videos on youtube that are put out by the Children's Hospital of Philadelphia (CHOP).  They are considered one of the best hospitals for congenital heart defects.  These videos very clearly describe HLHS, as well as the surgeries that would be needed if we go ahead with this pregnancy.  They are also so much more positive, then the information that was provided.  It was a factor in deciding to go for a second opinion.

6 short videos about HLHS

Tuesday, May 21, 2013

Just Between Us...

This blog is a little secret, for now.  We'll see if I ever get a chance to open it to the public.  It's about a little girl, named Tehilla.  She's still a fetus right now.  That's why this has to be secret. 

Right now, I'm 20 weeks pregnant with her.  I can feel her kicks and I've seen her little heart beat on the ultrasounds.  Her heart is what has gotten me here in the first place.  It's quite unique, and special, I imagine we'll tell her when she's older.  Tehilla has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare and severe heart defect.  We just had that diagnosis confirmed yesterday.  My heart broke, as the doctor described a very sad and scary future for her. 

We've been given an unimaginable burden to decide whether to terminate this pregnancy.  We are so overwhelmed with this decision.  We have an appointment with a genetic counselor on Tuesday, to help us understand the big question of "quality of life."