Each step of the way we are able to add just a little bit more info on Payton and her CDH as well as just a little more hope. On Thursday (April 14) we had Payton's ECHO ultrasound and the end result was that her heart appears normal (so one more possible hurdle no longer an issue).
The ultrasound that day also did a few more measurements and once again confirmed that the liver is still down. Not so good is that they identified a pocket of fluid in her chest and at this point they're not sure what it means. It may go away, it may stay the same or it may get bigger.
They have scheduled another ultrasound in a couple of weeks to track its progress (if any). The thought is that it may be because her body isn't functioning properly to de-water itself because of where the organs are situated and instead its partly de-watering a bit in her chest and being trapped there. Hopefully 2 weeks its gone and its just an anomaly.
So what we do know is that Payton's CDH is isolated (ie its the only issue she has) and that alone has resulted in a strong prognosis for survival.
We also learned that our placental previa is a bit worse (not better like we were hoping) and while we still have a long way to go for it to 'move up' it may be that its going in the wrong direction. The next ultrasound should give us a better idea of that trend. Suffice to say my exercise has been severely reduced - no more Chief climbs :(.
Yesterday (Friday, Apr 15) we met with one of the NICU doctors who was brilliant in answering our questions and giving us so much hopeful news. He's been working with CDH babies in Vancouver for 12 years now and before that was at Edmonton's Royal Alexander Hospital so we feel we are in good hands having at least one doctor with such a great resume.
His assignment for us for a goal, getting as close to 40 weeks gestation as possible and delivering in-house (in-house CDH babies have a huge jump in survival rates compared to those that need to be transported there after birth). He said if we meet those two requirements then we have as close to a 100% survival chance as we can get with CDH - YAY!!
He also said that if we are looking at a c-section, than its good as they can best time delivery and have the whole team alert and ready to work on her from the very start of the day (much better than delivering at 3 am on a Sat night).
On another note, we got to meet another little girl in the NICU who is fighting her CDH. Her mother very kindly shared her little fighter with us and showed us her battle scar (healed so well already at 4 weeks old) and talked a little bit of her experience. It was such a gift she gave us so that we can be so much better prepared for when little Payton goes into the NICU.
We have also been so incredibly lucky to have already met though cyber space other parents to CDH babies and their insight and experience has been invaluable in allowing us to have realistic expectations rather than trying to compare Payton's birth/post natal experience to Olivia's.
Its also so incredibly helpful (though bittersweet) that our loss of Dayne and Daniel has allowed us to fully appreciate the increased survival rates Payton has and recognize how lucky we're going to be that Payton will be given a chance to fight.
For now we have a bit of hiatus in the news feed and though you may have to filter through a little bit of rambling from me in the next little while, we should have a bit of an update in 2 weeks time regarding the status of the fluid in Payton's chest.
1 comment:
That is such great news. I am constantly thinking about you guys. I look forward to your blogs and finding out how everything is going.
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