Reality Bites

hands and heart“A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles” Christopher Reeves

 

Yesterday was all about reality checks. The closer it gets to Owen’s delivery date the more real it becomes. Every time I walk into one of our doctor’s appointments I am overcome by a wave of emotions. There is the distinct smell of the hospital that immediately takes over your senses, as you’re waiting in the lobby you hear the hustle and bustle of the nurses and staff, then there is the sound of slamming doors and beeping monitors, all of these smells and sounds make me want to run towards the exit and go back to my quiet, peaceful, and safe suburban bubble and then my name is called and there’s no turning back.

It was a very busy day at the doctor’s office and they were running late. I found myself getting frustrated as we had just driven 2 ½ hours and I really wanted the day to fly by so my husband could get back on the road and beat the traffic. We waited almost an hour and to say I was antsy would be an understatement. I was ready to complain when we saw a couple walk out of the exam room with our doctor. The woman had tears in her eyes and the man by her side was doing his best to keep a smile on his face and console her. I do not know what they were told and I never will. Whether the tears they had were tears of joy because their baby was improving or if they just received a diagnosis that changed their baby’s future, in that moment I was humbled and reminded that in “our” doctor’s office none of us are there for a “normal” check-up. Each appointment brings us closer to the birth of our special little ones and each appointment brings the realities a little closer to home. In that moment I was thankful that we had a medical team that spends the necessary time with each patient regardless of who is waiting.

We were finally called into a conference room to discuss a research study that they would like Owen to participate in. We have been told that we would be approached for several different studies during our time at CHLA. While we would be honored to participate knowing that Owen was able to help future families faced with congenital heart defects, we struggle with it as well. We do not want Owen to have to endure any unnecessary additional testing or discomfort. We know that Owen will have some limitations due to his heart condition but we don’t want that to define him. We continue to pray about our involvement in research studies and know that it will reveal itself when the time comes.

We then met with the Perinatologist. He did a quick ultrasound and said that Owen has not grown since the last visit. He still continues to be below the 10th percentile and since we already have an induction scheduled there is no reason for him to be born sooner. He continues to get the nutrients he needs from the umbilical cord and his brain and lung function look good. There are still questions regarding his right kidney or kidneys but we won’t know anything concrete until he is born. For now our dreamie preemie is just enjoying his last few days on the ”inside”.

We quickly met with our OB as well and she says that I continue to look great. We are scheduled to start the induction at 9:00am on Tuesday. Since, I will be 39 weeks and a first time Mom they do not expect he will be ready to come for atleast 24 hours. We plan to load the Ipad with some great movies and books and settle in for the long day/night ahead!

Last we met with Owen’s surgeon, Dr. Starnes. He was very warm and welcoming but a no nonsense kind of a guy. He confirmed that Owen has Truncus Arteriosus Type 1.5 with a VSD and a Total Anomalous Pulmonary Venous Connection. Owen is currently scheduled to be the first surgery of the day on May 16th. The surgery will last around 4 hours. We anticipate this to be the longest 4 hours of our lives. Owen will then be in the Cardio Thoracic Intensive Care Unit (CTICU) at CHLA to recover. He told us that Owen’s chest will have to remain open for 24-48 hours post surgery and did his best to prepare us for all the things that we will see post surgery. He anticipates that if all goes well we can be home in as little as two weeks post surgery. I am an incredibly positive person and find myself being overly optimistic, especially when it comes to Owen. We have read and researched everything we can on Owen’s condition but sitting in a small room with no windows and hearing it all out loud from his surgeon makes it so much more real. The reality is that in four short days, Owen will be born and his journey will begin. I will no longer be able to protect him and keep him safe on the inside. The reality is that Owen has a very rare congenital heart defect. Our surgeon is the top 5 in the country and he has only done 12 surgeries like Owen’s in the past year. On a scale of 1-10 in difficulty Dr. Starnes ranks his surgery an 8. The reality is that there is a 3-5% mortality rate. The reality is that this is just what we know now and there can be other issues that are revealed when Owen arrives and we need to prepare our hearts and minds for the worst. All of these realities quite frankly suck! In that 15 minutes of meeting with our surgeon the true reality of Owen’s condition sunk in and I decided that reality bites. Im clinging to my positive world and focusing on those statistics my way. The reality is there is a 95-97% survival rate, there is a 70% chance that Owen does NOT have DiGeorge and there is a 95.95% chance that he does NOT have Down Syndrome. We are praying for strength and peace knowing that we will have to hand our son over to Dr. Starnes.

I am sorry that this post did not share the same tone that the previous ones have. We love you all so much for your support and encouragement. Our heart family continues to grow and we feel uplifted by your prayers from all around the world. In 4 days we will walk through the doors of the hospital with our heads held high and at the end of the day the REALITY is that God has a huge plan for our little lion heart. Our prayers are being heard and He will protect him, guide the hands of our surgeon, give him strength in the days post surgery, guard our hearts and give us peace during the waiting. We will end this journey stronger and be coming home in a few short weeks with our hero safe in our arms!

To learn more about Total Anomalous Pulmonary Venous Connection visit http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Total-Anomalous-Pulmonary-Venous-Connection-TAPVC_UCM_307039_Article.jsp

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One thought on “Reality Bites

  1. Although we are just neihbors and not in the friends or family group, as Christians and just finding out about our “lion heart Cub” next door, we have been deep in prayer I understand from a Trustee at CHLA that you have the very best pedeatric surgeon in the nation. Cub in great hands.
    Patty & Lou

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