Saturday, July 18, 2009

Abnormally Normal

I meant to do this yesterday, and had something else on my mind. I apologize. Please don't throw rotten fruit at me. Thursday's appointment with Dr. S at Presby in Charlotte was pretty uneventful.

Johanna definitely has a major heart defect. Dr. S gave us 3 opinions regarding her heart. She either has HLHS(Hypoplastic Left Heart Syndrome), a completely absent left ventricle(equally bad), or something else entirely. Dr. S was leaning towards the first two as being the primary heart problem. In a chromosomally normal child further testing would be offered to determine the exact extent of her heart defect. In her care though it's not really an option, since the defects are obviously part of the T18. In any event, if(and that's still a big if) Jo is born alive then she will most likely suffer from some sort of major heart failure. And again, this is common in babes with T18.

Another common physical defect is clubbing of the hand and feet. At this point, and I don't think any change is expected in this part, Jo's right hand is clubbed. The 2nd finger is criss-crossed over the 3rd. The other arm and hand, and both legs looked great.

She has been small from the beginning, and she still is. Previously she was 1-2 weeks behind the growth curve. Now, she's about 2-3 weeks behind the curve. Dr. S assured us that this was a normal change in development for T18 babies. She is still growing, just not as fast as she had been, and not as fast as a normal baby.

All in all, we learned nothing new. It was exactly what we expected, but it was still a little bit of a let down. I naively didn't expect it to be a let down, but it was a hit below the belt just the same. I guess it's a protective instinct and there's absolutely nothing we can do to protect her. I get to love her though.

And we didn't get to go to PF Chang's. I was super excited, but the timing didn't work out. I had left work early and ate Chick Fil A(my fave) in the car. Our appointment was really quick, and we were done by 4:15pm. Neither one of us was hungry at that time.

Basically, nothing new. Just more affirmation of the things we knew and expected. I have her with me for now, and I'm privileged to get to love her today. God's doing big things in my life through this little girl. It's been a trip worth taking. Sometimes I think there are things that I would change, but when I seriously think about the situation as a whole, I don't know that I would change it. I'm sure that attitude will waiver as D-Day gets closer. But, we are in a good place for now. The Lord is providing strength and a peace that passes all understanding. I couldn't do this without Him.


Monica said...

One day at a time, one hour at a time, or one breath at a time. Keep your eyes focused on God and what he is doing. It is not easy by any means, but you are being surrounded in prayer.

Joan Carr said...

Not an easy road to travel for you, C&C or for us as your parents to be totally, completely, utterly helpless.But God is the hope of all hope and is doing things that He and He alone Knows is best for all involved.Even though I can't change or fix any of this I rest in God knowing that He knows best even when we can't see beyond this second.

chris mitch travis cana said...

its like reading my own words. i will make a big effort to get more of her story up....this encourages me to do so ....because it reminds me when i read your words...that people do understand. I pray i can do the same for you. Thank you for your emails and the connection of your life and johanna's intertwined in mine and our cana's.

Allison said...

You amaze me each time I read your posts. You are such a wonderful woman and an inspiration to me to try to see the good in every situation even when you may not want to. I pray for you and Jo every day and I am excited to one day see her beautiful pictures on this blog. I love that you describe her in detail each time you see her on the screen so that we get to better see her as well :) Know that I have been and will continue to follow you along and pray for you each and every day :) God Bless

Brittany and Charlie said...

A unique journey it is that you are handling well. I am keeping you in my prayers.

Pam said...

I am soooo praying for you. You are close to me (in distance). If there is anything I can do for you, please let me know!!!!!!!

Myra said...

Nikki, I just want you to know that I'm praying so much for you and Chad today. You are exactly where you have to be through this...leaning helplessly and desperately on Jesus.