Surgery is Scheduled

Payton's surgery is scheduled for 10 am tomorrow morning (Aug. 1st).  We met with the surgeon who is going to be doing Payton's surgery (Dr. Blair) and he went though everything in detail and explained a number of things.

After hearing about the surgery/risks I would do anything to NOT want her to have the surgery we know very well that Payton needs this surgery to get better and while she's doing "great" right now, she's not getting better...she's simply in a holding pattern till we fix the problem.  And, Payton's "great" isn't great compared to a new born, its great compared to how very complicated her situation is. 

Payton is the only baby in the NICU who has her own room seperate from all the other babies and she's one of the few who has a nurse with her 24 hrs a day (initially 2 nurses but because she is doing 'great' they are confident that one is sufficient).

Another example of how sick Payton still is, is when we met with the surgeon today, he explained that Payton's lung size was that of a 25 week old baby.  And while those lungs are functioning 'great' they're still incredibly small and working hard to oxygenate a full term size baby and not the small size of a 25 week'r.

The surgeon explained that overall the risk of surgery brings with it an approximate 10-15% mortality rate.   He also explained that this risk is overall and that with Payton, she's doing so well that they believe she's on the lower end of that spectrum.  My interpretation is that means she lies closer to having a 10% chance of not making it through the surgery.  For a mom, that's still high enough to cause anxiety and fear but we're going to hold on to that 90% and try to focus on that (90% is better than the 70-80% given when we learned of her defect).  We know that nothing in life is guarenteed - for now we are so incredibly happy that we are where we are and that Payton is doing so well. 

We learned that the 1st 48 hours after the surgery are the riskiest so we'll be extra vigilent for that time and hopefully spending as much time with Payton as possible, trying to lend her extra strength to pull through the stress of the surgery with as little complications as possible.

The main issue involved is the pulmonary hypertension.  Earlier in our blog I explained with CDH babies there are two issues that are the life threatening issues.  One being Pulmondary hypoplasia (lung size and the docs were able to estimate this from Payton's ultrasounds and the size of her lungs were what placed her in the 70-80% survival range). 

The other being Pulminary Hypertension - effectively how well the lungs are able to transfer oxygen to the blood stream through the arteries.    Babies with pulminary hypertension have arteries that become 'twitchy' and restrictive thus preventing oxygen from getting to the blood stream.

This was not something that we were able to 'measure' before Payton was born and how well she's doing now is a testament to how well her pulminary hypertension is.  In fact, the surgeon today said Payton isn't showing any signs of pulminary hypertension which will hopefully work in her favour for surgery.  He explained that pulminary hypertension is the #1 risk of the surgery and though she's not out of the woods, its hopeful that she'll continue not showing signs of pulminary hypertension which will work in her favour of coming out of surgery with a good prognosis.

We were told we can breath our 1st sigh of relief 48 hours after surgery which we estimate will be around noon on Wednesday.

Tonight I'm heading home.  It will be the 1st time I've been home in over 8 weeks and I'm giddy with excitement to sleep in my own bed.  It will be the last time I'll be home until Payton is well out of the danger zone of both her surgery and her CDH.  Until then I'll be staying close to the hospital Easter Seals and hopefully we'll be able to have Livy and Wilma coming down to the city most days (even Livy some nights) so that I won't be so cut off from Livy like I have been the last 2 months.

Its going to be a juggling act between our two girls and I'm so incredibly thankful that both are in good hands no matter where I am. 

I once again want to thank everyone for reaching out and letting us know how much they care and that they are pulling for Payton.  She's pretty special to us so it means a lot to know that we have so much support and people thinking of us.