Friday, January 23, 2015

Broken Hearted

Yesterday we got a call from the perinatologist that and opening had come up and the cardiologist could see us. We, of course, jumped at the opportunity. It seemed better to rip the band-aid off and not wait another three weeks to take an in-depth look at our son's heart. As she continued to call out medical terms that we didn't understand, I felt that all too familiar wave coming over me. A wave of anxiety, of sadness, of diminishing hope, of queasiness. She took the time to draw us a diagram and explain to us all that was wrong with our son's tiny heart, the major issue being that he has a double outlet right ventricle. Basically, our son is broken hearted. He has a condition that can only be fixed by open heart surgery.

We have been avoiding making an:y plans thus far, but now we are faced with many decisions all at once. We had been adamant about not going through amnio because it did pose a slight risk to the baby. Any risk seemed far too great after the losses we had experienced over the past year. But now, we were faced with a greater risk: deliver locally, and there may not be adequate medical care to save our son. The time had come to re-evaluate. If, however, he does have Edwards syndrome, the cardiologist would refuse to operate. Too much was left riding on this diagnosis, now.

I made an appointment with my OB this morning to discuss our options and to get her honest opinion. She took the time to explain all the findings and talk about our concerns. She was direct: delivery locally was not an option if our son did not have a chromosome abnormality. She was also honest in her feelings of the blood screening that we had done previously. The amniocentesis needed to be done in order to move forward.

After I got home, I got a call from the pediatric cardiologist. She chatted briefly about our family and wanted to check on my husband and me to make sure we were okay and if she could answer any questions. It is nice to have doctors that are willing to take the time and genuinely care about your well-being. She agreed that no steps could be made until the amniocentesis was performed.

As I tried to sleep last night, I cried to God to heal our baby. It has been the same prayer every day for the last two-and-a-half months. I want so desperately for my prayers to be answered the way I want them to be answered: with a miraculous healing and birth of a healthy baby boy that we can hold and love on for years to come. But, that is my will and I have come to realize that our will does not always coincide with God's. Just like Job, we are not always privy to see God's bigger picture. But, we are assured of God's higher plan in Isaiah 59:11, "For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."  We also can be assured of God's love and good will for our lives in Jeremiah 29:11, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." We are holding onto these as we prepare for the future that we face...however uncertain that may be.

2 comments:

  1. Thank you so much for sharing your journey. My husband and I are about a month or two behind your family in this entire process. For the past few week I have scoured the internet for all information, studies, and inspiring stories. Again, thank you for sharing.

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    1. I'm so sorry that your family is dealing with this. It is my heartfelt prayer that you find encouragement in all these families' stories. You are not alone and there is a tremendous story that will unfold from all this pain.

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