Saturday, July 7, 2012

Ahead of The Curve

I have not uploaded many pics to Facebook because Cecilia was intubated her first night.  I have young cousins, elementary school young, on my friends list and I don't think it is appropriate.  Don't want their hearts to be heavy should they stumble upon it on the news feed... I think if I saw something like this as a child I would just cry and cry and be so scared for the baby.  The pictures Karl uploads from mobile I usually remove from my wall if I am not comfortable.  I will be adding pictures of her here, so if it may bother you to see her Post Op, do not look.  I make this blog mostly for myself, but I spent a lot of time searching for blogs while I was pregnant, and reading them, and seeing pictures, was something that helped me prepare.  I hope that it will help someone who is preparing for this life change as well. 

Karl and I have been on edge the past couple of days because her chest is open is a high risk of infection.  They are giving her antibiotics to help prevent it, but it's still a lot of stress.    He went back upstairs to Cecilia and she was de-satting into the 20-30's , not climbing back up on the pump like usual, and the whole floor ran to her room to assist.  Afterwards the nurse we love, and did not have this night :(, tried to calm Karl down in the hallway and told him how sometimes there is mucous that builds up in breathing tubes.  

Yesterday, Friday ♥ Cecilia Celine ♥ turned 1 week old!  As I left the garage on my way to see her that early morning, I ran into her surgeon.  He said Cecilia is doing well and we will move forward as planned with the chest closure.  He said she's "Ahead of the curve".  That should make me happy, but when I enter her room, and see her A line being replaced again, I think about all the times my baby has been pricked and it just shatters my heart.

I look at my precious fighter.  She has been on a ventilator since her first night alive.  How is this ahead of the curve?

She has IVs in her head, neck, arms, and sometimes even in her feet.  How is this ahead of the curve?

I think about all of the hopeful faces of HLHS and try to remember some of them enter with a little tougher time than others.  All of their journey's are a battle, and while similar, not the same.  Moms have said this is a roller coaster, with a lot of ups and downs, to celebrate the small victories...I think about the Angels, and how much I don't want Cecilia to be one of them.  Please God, don't take her...

 At 9:30 am, the nurse practitioner told me that Cecilia's chest closure was going to be bumped up to this morning since her surgeon finished up over at Johns Hopkins earlier than anticipated.  I met up with a social worker and she showed me a better family waiting room that had a shower, free coffee, computer, ect.  She gave me the number to birth registry, and after that I realized she was just more interested in finding out if I have post partum depression than helping me with this stuff.  I answered her questions with total honesty and she thinks that the feelings I feel are reasonable under our circumstances, so that's good to know. 

I was told the whole process from setting up, closing the chest, and cleaning up would be about an hour.  30 mins in, I just was overwhelmed with feelings that things were not going right.  So, when I saw no enthusiasm from the semi-hyper, upbeat Dr., I knew it didn't work.   His words, "She didn't tolerate it".  I started to cry and I don't think he understood why.  I know that sometimes it takes +6 days for babies to get their chest closed post norwood.  All of them are different.  He said she just wasn't ready yet, and that does not mean she is not doing well.  We just have to drop some more fluid, and Sunday we will try again.  Sunday is two more days longer that my baby is making a big step to healing, so this is why I cried.  I just want a step forward.  I just want to know her.  I want her to know me, and to know love.  When I could be with Cecilia again, the NP explained to me why she would not tolerate it.  She said that when they were closing the chest that Cecilia's lower part of her body was not getting the same oxygen blood as the top and something about cardiac output.  Her heart is just not ready yet. 

Are they sure she is ahead of the curve?  I can name a few kids who totally rocked this procedure, and they are who I would classify as Ahead of the curve.  It could be worse.  She could be on life support, or rather  ECMO.  I have things to be happy about.  She made it through the surgery.  When I was on my way home for Karl's shift, I decided to stop crying and just be happy that she is alive.  She will get there, and if she has an extended hospital stay we will make it work.  The best case scenario was 1 month, and if it takes longer so be it... as long as she is alive I will try to smile. 

This is a picture of her 24 hours post op.  She's very puffy.  That's why they leave the chest open.  She has 3 chest tubes draining fluids and those will come out when no longer needed, but not until after the closure. 

3 Days post op..still puffy, but improved.  My baby is healing ♥ Her feet are warmer, which means her heart is working better.

Daddy ended his shift a little early last night, it was too hard on him.  So I took a nap, got there and hung out with my babe until about 5 am.  She woke up at one point, and her eyes are still puffy so she was only able to open one of them slightly.  But she looked at me, and I begged her not to forget me and told her I love her.  She went back to sleep ♥.  Rest and heal my sweet baby.

  Daddy's afternoon report is her heart rate is back in the 160's now. 

 Today I think they are trying to get her off of one of these meds, but I forget which. Daddy just reported to me that the Dr. is thinking to wait until Monday for chest closure now.  He doesn't want to try again unless Cecilia is absolutely positively ready, so we'll see... 

You are so loved, Cecilia.  By everyone. 

Thanks again for the continued prayers, love and support!