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.

Faith in the Valley

After much waiting, we met with our perinatologist on December 30th. It was cold, and had begun to sleet outside and they were more backed up than usual in the office. My husband and I waited for two-and-a-half hours to see the doctor. There was some trouble getting the measurements and images they needed because our little boy was being super stubborn...he doesn't get that from me. :) When the doctor finally came in, he was very optimistic that we were one of the few couples that had received a false positive regarding the chromosome abnormality and that our baby was just fine. But, before we left, he decided to take another look. He showed us how his brain, spine, and face appeared to be normal. Then he decided to re-check the heart. That is when all the air seemed to be sucked out of the room. He asked the sonographer to confirm what he was seeing: a ventricular septal defect and an overriding aorta. We went from mountain top back to the valley in a matter of seconds.

It took me a few days to process the information. One one hand, it was promising that the doctor had not found more visible markers related to T18. On the other hand, these heart defects were something else to add to the list of evidence that the test results were accurate. The longer the list gets, the clearer the picture becomes. Unfortunately, we will have no definite answers until he arrives.

I have been surrounded by such a supportive community of people the past few months. Prayers from more people than I could have imagined have gone up on our behalf. Several have come up to me and commented on how strong I am. The truth is: it's a lie. I feel like a total failure. Behind my bedroom doors, I sob. When I'm in the car, with my kids safely out of view of my face, the tears flow. I have managed to neglect my kids and not take a single moment to stop and listen to what God was trying to tell me. I have also been irritable, stressed, and sometimes find it hard to breathe. It's so hard to have faith through all the murkiness. Then, I'm reminded of what Jesus said to Thomas:
      Then Jesus told him, "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed."


This morning, while driving, a message came on from Proverbs 31 Ministries about trusting God's plan. Out of the back seat, I hear my two year old daughter singing her memory verse: "Trust in the Lord and do good." (Psalm 37:3) I couldn't help but cry tears of gratitude for God's goodness. I've always heard that it takes a community to raise a child, but it has never been more clear than this morning. While I have failed in many areas as a mom lately, we are a part of a community that is teaching my children the love and trust God. 

I would give anything to have childlike faith in this moment. I suppose I'll start by stopping and listening to what He has to tell me.