Aorta

We went for a followup appointment tonight with our pediatric cardiologist, Professor Rein.  All looked the same, and good, considering the heart defect.  There is one thing that came up.  They are monitoring the development of the heart.  One of the criteria for the baby to be able to have the heart surgeries, with as few complications as possible, is the size of the aorta. 

Unfortunately, since our last appointment, 6 weeks ago, the aorta hasn't grown and is "incredibly small".  This isn't unexpected given the HLHS, but there is a minimum that they are looking for, to insure better results.  We aren't at that minimum.

We will be seeing Professor Rein again in 6 weeks and meeting with our surgeon in the next few weeks.

Day by Day

I reached out to my fellow Heart Mamas.  I had been having a hard time coping with the unknown and fear of what might happen.  The best advice I was given by all of them, was to live day by day.  Right now, the baby is healthy inside of me.  Right now, I am home with my two wonderful kids.  Each day will bring what it brings, but I need to live in the day and enjoy what I have right now.

It doesn't make the future any less unpredictable, but it gives me the opportunity to breathe and relax.

Meanwhile, Tehilla's kicks are strong and growing stronger every day.  I never experienced the kind of kicks that I am experiencing with her, with my other pregnancies.  It's as if she is letting me know that she is strong and a fighter.  She will need it, to overcome what is in store for her.

The Waiting Game

I'm now 28 weeks pregnant and working hard to get things organized and taken care of before this baby comes. It's been an emotional roller coaster ride this entire time, but this waiting period seems to be extremely difficult.  It just feels like we are waiting for disaster to strike.  Keeping organized and busying myself with tasks helps in some way to feel like I'm productive.  It's still not easy.

We've now told many of our friends and family.  Thankfully, everyone has responded with a desire to help. 

Next appointment with Professor Rein is in two weeks. G-d willing, everything in the baby's heart will still be developing at a normal rate.

Colour me a miracle!

We had our appointment with Professor Rein and it could not have gone better.  It was nothing short of a miracle.  The PFO completely opened on its own!  As well, everything else in the heart has developed and progressed nicely.  He encouraged us to go ahead with the pregnancy and that is exactly what we are doing!

My prayer to G-d, all along has been: "Please G-d, let this baby live.  Let this baby be a source of praise for You."

Genetic Tests- Clean!

The rest of the genetic tests came back clean.  There is no other abnormality to worry about, and as well, they said that there is no genetic reasoning for the HLHS diagnosis.  We weren't expecting them to find one, as there is no conclusive evidence to support any reason for HLHS. 

Today is our appointment with Professor Rein.  This is THE appointment- where they check if there really is an obstruction in the PFO.  This is the final deciding factor.  We've already decided that if this comes out okay, then we are going ahead with the pregnancy. 

Results coming in...

I went for the amniocynthesis on Sunday.  Mildly traumatic is how I would describe it.  The past few days I've been on bed rest.  Our genetic counselor called and we got the first round of results back.  The baby does not have Down's Syndrome nor any other neurological disorder associated with chromosomes 13 and 18.  We should expect to get the rest of the results in 2 weeks.

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!