Monday, March 31, 2014

After birth

The problem with blogging, or more accurately NOT blogging, is you get used to not blogging and then you have so much time to make up.

The last I blogged James was born. Today he is in his swing in our den at home sleeping. How did we get from birth with a breathing tube to the swing? Lots of blanks for me to fill. And I will. I hope you can bear with me. I want everyone to know his journey.

Once James was born all the doctors did their assessments and tests and determined him to be in good health, minus a small little life threatening heart defect ;).

Jason and I were thrust into a whole new world that we thought we were prepared for but you realize quickly how unprepared you really are. We learned about oxygen saturation percentages and heart rates and flow vs. liters and versed (and I'm not sure if that's how you really spell it).

During this initial assessment an echocardiogram was done and found James to NOT have Hypoplastic Left Heart if you can believe that! His left side was small but it was pumping! He was downgraded to critical aortic stenosis with a hypoplastic aortic arch. What does that mean exactly? Well, I don't know. Not exactly. But I got the jest of it. Aortic stenosis and mitral valve stenosis are the beginning factors of HLHS. Since James's mitral valve was not as bad as they originally thought. He still had many issues. When I say he was downgraded this isn't to mean he was ok by any stretch of the imagination. But now we had a few different options. We could continue on with the Norwood or we could try for a catheterization procedure to balloon open the aortic arch which would hopefully allow more blood flow through the arch and therefore allow the left ventricle to grow and keep him a two ventricle baby. Any time you can keep a child a two ventricle baby this is obviously the preferred method. But would Baby Brother be a good candidate for this procedure? The doctors would discuss it at Cath Conference on the next Monday morning.

I spent the weekend being wheeled between my room and James' room. Jason slept at James' bedside the entire time except for one night when my sister slept in the room with him. We got a room at the Ronald McDonald House and when I was released on Sunday I tried to settle in.

All of our family left by Sunday except for Jason's mom. She stayed with me. The plan was for her to stay with me the first week and my father in law to go back with Jason which would help Jason get the kids to and from school and just generally help out. They would come back the next weekend at which point they would all go back leaving me alone but only for a day or two when my in laws would be back for another couple of days before they had to leave to go back to England. They would leave on Thursday and Jason and the kids would come back on Friday and then my mom would come and spend week 3 with me. This would get me through the first surgery and some recovery time before having to be alone.

Monday morning at Cath Conference they decided James was a good candidate for the valvuloplasty of the aortic valve.

So James would go to the Cath Lab on Tuesday, January 7th.

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I am a regular everyday wife to Jason and mom to Christian and Georgia on a roller coaster ride. We are overjoyed to be welcoming a 3rd baby into our life. We feel blessed to be given such a special spirit in this 3rd baby. This is our journey to mend our baby's broken heart.

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