11 January 2011

01.11 Update

(by Bethany from http://iamknittogether.blogspot.com)

We got some fantastic news and some not so fantastic news today about our sweet Penelope.  We'll start with the positive!  Her Turners Syndrome test (as well as the rest of her chromosomes) was negative!!!  We were beyond thrilled about this and so grateful to the Lord for protecting her from that particular hurdle in life.   The less than fantastic news was that she is having some pulmonary edema (fluid in her lungs) which has been causing her more frequent de-sats (low oxygenation in the blood) and also her heart is "generous" which sounds like good news but it really means that it's enlarged.  These are very common side effects of the open ductus and were expected eventually.  We were just hoping to postpone them a bit more.

This is the part we're still a little confused on so if you're confused after reading it then you're in good company.  Well, our company...but I think we're pretty fun!  OK, back to business.  The Aortic Coarctation that we had thought was completely gone, seems to still be a concern.  She has a slight narrowing in the top part of her aorta, as well as a "shelf" near the opening of the PDA but it's not in the place that they normally see a "shelf" (it's not a contraductal shelf for those of you who know what that means).  The cardiologist (Dr Chinn) came and drew us a picture to explain it for the very reason that I'm having trouble explaining it now.  The point is, if they do the PDA surgery just like they did Lydia's it could cause problems with the flow of blood around that narrowing and this "shelf".   If this happens, she would need the more invasive surgery to repair it, but she's not anywhere close to the right size to be able to handle that kind of surgery. The side effects include heart failure, but the side effects of leaving the PDA open at this point include heart failure too.  This is when I'm very very glad that we have the best doctors and medical team possible to help guide us in this decision.  Tomorrow there is a meeting of all the cardiologists and cardiovascular surgeons to discuss all the cases they are treating right now.  Penelope's case will be discussed and they'll come up with the best plan of action.

In the mean time, Penny's been intubated to help her breath around the pulmonary edema.  The silver lining on that is that her big 'ole CPAP apparatus is gone and we can see her pretty little face!  I don't have any pictures to post right now but we'll get some a little later and put them on the blog.

Lydia is holding pretty steady.  She's still seemingly unexplainable angry and throws fits often, but if I were in her situation I'd be pretty mad about it too.  Today she was throwing a fit that she was having trouble calming down from so we went ahead and did kangaroo time and she calmed down immediately.  That did wonders for me feeling like a mama, and for her stress level! 

Something we haven't mentioned before but should go ahead and start praying against is the possibility of them developing Necrotizing Entercolitis (NEC).  Very simply, it's a pretty dangerous complication of prematurity that effects their intestines and requires invasive surgery to repair.  It normally happens around this time a couple of weeks into life when feedings are doing well.  We just need to pray that this is an obstacle they won't have to overcome.

Specific Prayer

  • Penelope's pending surgery and wisdom for the doctors making that decision
  • Lydia's discontent
  • Penny's toleration of the ventilator
  • Lydia's toleration of feed (she needs to have a stool...go ahead and pray for her poop...God knows about poop, He invented it!)
  • Protection from NEC for both girls
  • Praise for the Turner's result and every other miracle we've had so far!

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