Sunday, September 9, 2012

Life feels like a blur!

The Day After
May 23, 2012
I am not quite sure if Adam and I really slept much the night after we got the news about our baby's heart condition. One thing we knew for sure was that we had to at least share the news with each of our parents and rely on them to pass the news along to the rest of the family.   We ended up skyping our parents to share the news that we were going to have another girl as well as informing them of her congenital heart defect (CHD).  We did the best we could to explain what HLHS was and what was in store for us.  We explained that we needed to deliver at a level 3 (tertiary) hospital because they were more equipped for babies like this but if I did deliver in Evansville that they would take the necessary precautions to stabilize her and send her to the hospital we've chosen to care for her.   
It was very hard for our parents to hear the news and it was hard to tell them.  Very emotional and still difficult to digest. Understanding how difficult it was for us to talk about, they agreed to spread the news on to family and close friends.  We also were not prepared for the "whole" world to know yet, so we asked that nothing be posted on public web-sites like facebook.  We just asked that we put into everyone's prayers.  We believe in the power of prayer, miracles and hope.

So curiosity naturally took over and we began our research on what HLHS is and researched tons of hospitals that had experience in caring for babies with CHD and HLHS. Bombarded with stories, blogs and videos of parents and their children with HLHS it became more evident how serious this condition was and how fragile many of these babies are.  There are stories of success, survival, as well as, stories of babies didn't have such a happy ending.  These "Heart Angels" couldn't sustain and overcome some of the complications that can occur with this CHD.   It was hard to see it all and to see the photos and videos of the babies after their surgeries, knowing this is what we are going to be facing before we knew it! 
Mind-boggling, overwhelming, stressful, depressing, scary, the uncertainty... are just a few of the emotions we were going through and feeling ~ and still are today. 

As a mother of a beautiful baby girl, I know I can rock her to soothe her when she's upset, give her tylenol when she's in pain or sick, kiss her to "make it all better" ~ and then to look down at my belly knowing there is NOTHING I can do to make this better, to sooth it, to make it go away leaves me feeling helpless and and very sad.  This is something I never, ever imagined I would be going through.   
The emotions, feelings and thoughts that go through my head on a daily basis are consuming!  All I or my husband can do is to take one day at a time. We know we have a long road ahead of us and all we can do is prepare as best as we can and to "prepare for the worse and hope for the best".   
We knew we were going to do our best to give our baby girl the best fighting chance she can get.  So, we had to decide where we are going to deliver our baby and let the professionals take her from there. It would be one of the most important choices we would have to make knowing that it would become a "second" home to us for the next couple of years. 

May 29 2012
As Dr. Kumbar anticipated, we made another appointment to meet with her.  She went over the fetal echocardiogram results with us again as well as the surgeries that our baby would be undergoing, the treatment plans, the interventions that may be needed after delivery, and answered any questions we had. 
Once again, she explained that it was very hard to see the structures of the heart but it appeared that the the pulmonary artery appears to be small, the aorta appears of normal size and is not stenotic (constricted or narrowed) and that the aorta and pulmonary artery appear to be coming out from the same ventricle, most likely the right and that the left ventricle never developed or it is so small that it is hard to visualize. It also appeared that the aorta and pulmonary artery were "flip-flopped" meaning that the aorta appeared to be in front of the pulmonary artery and in a normal heart it's the other way around.  She also told us that sometimes other conditions may arise with organs such as the spleen or liver but they are unable to see those organs as of now.   She said as we have more fetal echocardiograms it will be easier to achieve a more accurate study of all these structures. 
This time, it was still hard to hear about our baby's CHD, but I believe we could actually HEAR what she was saying without the mind numbing feelings we had the first time around.  We still felt like there were so many "unknowns" to be considered and that this wasn't a straightforward case of HLHS.

We can't say enough good things about Dr. Kumbar, she is a great doctor and very thorough and very patient with us.  We felt as if she had nothing else to do on the first day we met her, as well as this second visit with her. 

May 30 2012
We were in the area and decided to stop by to see if our results from the amniocentesis had come back.  The counselor informed us that the preliminary results show everything came back clear.  That was huge news for us and for our baby girl! 

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