Strong Willed – Part II

 

*Three months after the words of Part I.

Its not what happens to you, but how you react that matters. -Epictetus

Every obstacle is an opportunity. I truly believe that. In this case, the obstacle gave Connor the opportunity to live.  At this point we have been through five intrauterine blood transfusions and have kept Connor alive. The doctor has successfully transfused Connors blood through a long needle that went though Amanda’s stomach, into her womb, and into a vein in the umbilical cord. We were very fortunate to have this option.  Here’s why.  During this process, we were getting regular ultrasounds to check the status of Connor’s hydrops (cranial/body swelling and heart size). At one of our standard ultrasounds he switched over to a type of ultrasound that shows blood flow.  What he saw was another very rare condition called Vasa Previa. Vasa Previa, in our case, was a fetal blood vessel from the placenta that was crossing the entrance to the birth canal.  If that vessel ruptured, Connor would suffer from rapid fetal hemorrhaging and die within minutes.  The fetal mortality rate is estimated to be as high as 95% if not diagnosed before birth. Amanda was immediately put on bed rest, even though she had been CrossFitting almost daily till then. We needed to restrict her movement as much as possible and for as long as possible. We prepared for the worst and hoped for the best. The doctors wanted her in Labor and Delivery for seven weeks antepartum, in hopes to deliver at 35 weeks. We managed to settle on four because she didn’t want to be away from Kaden that long.

So you see, the initial obstacle was Connors blood disease, but without this “obstacle” we would not have had the “opportunity” to have that ultrasound that most likely saved his life. This was not the end of the path for us.  The obstacles became the path, and we are grateful for it.

Here is a letter I wrote my first born and unborn son:

June 23, 2015 10:42pm – The night before Connor is born

Boys,

We made it this far. A date your mom and I envisioned and dreamed about since we learned about the Kell Anti-bodies and Vasa Previa.  I am sitting in the garage at my desk on the eve of Connor’s birth.  I am calm, humbled, and restless to see my son and take another step towards us all being together.  As I type this, your mom is at Saint John’s Hospital for the 19th night and Kaden is inside sleeping.  I am watching him on the baby monitor asleep with two teddy bears in his crib.  We practiced calling the smaller one “baby” to help him get ready for his baby brother. 

The last few weeks have been tough on everyone.  Your mom has been stuck in the hospital without freedom of movement, Kaden, actual sunlight, fresh air, etc. But it is what is necessary to give Connor the best fighting chance at life. Kaden is currently 2 years and almost 9 months.  He has done very well considering that mom has been gone.  In fact, I don’t think he could have done better in the situation.  He is a happy and adorable little dude.

My biggest concern right now is Connor’s health.  We know he will need at least one more blood transfusion once he is born and will spend time in the neonatal intensive care unit, but we don’t know for how long.  As close as he came to not making it, I am extremely appreciative of the doctors that helped us get to this point. I am optimistic and look forward to meeting you Connor!! All I ask is that you be a good person and follow your passions.  I will help guide the way.

I want to talk about the first time Connor inspired me.  When mom and I found out about the blood issues and Vasa Previa, it felt like my heart had jumped out of my chest and hit the ground.  I immediately grabbed it off the ground, slammed it back in my chest, and asked how can we fix the issues.  We were scared but optimistic.  The days leading up to the first blood transfusion,  mom had not felt Connor move at all and we were worried he might not have made it.  When we finally got to the hospital, they did an ultrasound and we heard the amazing sound of his heart beat.  After they took mom away for surgery, I stayed in the waiting room.  About two hours later the doctor came out to talk to me.  He seemed to be walking in slow motion with some staff members at his side.  The doctor told me that Connors blood was as thin as water with a hemoglobin level of 2.  Normal is 14-16.  Heart failure had begun and he was severely anemic. The doctor could only bring the hemoglobin level up to an 8 in fear that it could cause a heart attack.  He also had to sedate Connor to stop him from moving around during surgery. 

That night mom and I were sitting on the couch as she was recovering from surgery.  Hanging our heads kind of low.  It felt like time was moving really slow and we were under water. Then all of a sudden, your mom quickly reached over and grabbed my hand and put it against her tummy.   I was confused for a second, then it happened. For the first time, I felt Connor move.  This set my soul on fire. This was not a regular movement. This was a spirited kick. He was vigorous and energized.  This took any doubt or self-pity out of me, probably forever.  I thought to myself, “This kid is strong willed!” That is why we picked Connor as his name.  It means strong-willed, and you Connor are.  Thank you for inspiring me at such a young age my son!

Stay strong,

Dad

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These pics are before and after our 4th intrauterine fetal blood transfusion surgery. We still had life obstacles ahead, but those obstacles gave us Connor. That’s something to smile about.

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