Torn, heart-wrenched, in shock...

Not much more I can say.  Vanderbilt denied any further intervention citing it would be irresponsible to do anything invasive to help Reagan at the risk of Addy, since she is now at a viable age.  Risks include infection, pre-term labor, and death to Reagan that could cause my cervix to completely open up because of the inflammation of tissue since she is on my cervix directly.

We had our u/s at 9:15 with our first male sonographer.  He was super nice and I was amazed at how he was able to get some measurements that I hadn't seen in a long time.  Many things checked out okay on Reagan or at least favorable, but the ultimate problem is her lungs.  

Our MFM was Dr. Wemstrom.  She was a super nice doctor and I really do like her.  She took her time and listened to the whole story of what has happened to make sure she really understood from my records.  She went over a few measurements.  Obviously, the compression has left Reagan growing a little small, but some of the main things were right on track.  Her arms were measuring small, but her legs weren't too far off.  Her kidney length measured right on, but it looked a little ecogenic, but nothing of huge concern as she would likely need a dialysis and a transplant later in life regardless.  Her ureters were dialated, but nothing they didn't expect.  Her heart was normal and beating with 4 chambers.  She didn't move yesterday, but after her u/s...I felt her little feet almost all day.  

So, with all the good, they found some really bad which finalized their decisions in the end.  Her thorasic cavity (chest), measured right on width wise, but length wise, it measured incredibly short, indicating her lungs were not matured enough at all.  Since the lung development primarily takes place between weeks 16 & 25, we have approached her max capacity.  Her bladder compressed her lungs too much to the point that her lungs were unable to grow any further.  Her bladder is only compressing things worse and worse and the pressure it is putting on her normal little heart has caused some fluid.  Now, the fluid we aren't positive that it's effects from surgery or from compression.

The other area of concern.  Dr. Wemstrom believes that Reagan's only issue is NOT an additional ureter with a possible ureterocele.  In fact, that is so so rare, that she believes she most likely has other problems, including cloacal tendencies.  I understood what she meant by it and not sure I can explain.  There are many forms of cloaca (where basically the bladder, vagina, and/or bowel dump together).  She said to lump that word together is difficult because it's just a disaster in the renal system.  It's not that it can't be fixed after birth, but it's rare for survival after birth too.  It's likely she has some form of atresia (flattened urethra - where your urine exits) or cloaca.  Yet, we will NEVER know until she is actually born.

Dr. Wemstrom wasn't against placing a shunt just because Reagan was a girl, but the issue more boiled down to a few other things: 1) anterior placenta that only gets larger with pregnancy making shunt placement difficult, 2) twin gestation with a healthy twin, 3) stage of viability (because if Addy were born at 24 weeks, she has a 40-60% chance of survival, but only a 20-25% chance of survival without significant problems.  So, she asked to take our case to the meeting at noon which included a slew of pediatric surgeons, radiologists, urologists, geneticists, ethicists, MFMs, etc...

We then went and met with Dr. Thomas.  We liked him as well.  He was a wonderful doctor who really wasn't concerned with her possibility of cloaca or atresia.  He said we would solve that afterwards.  Right now, he said his concern was the lung development, as was ours.  We asked him numerous questions and he was informative as well.  He left straight from our appointment to go to the conference they had to discuss my case.

We waited outside the children's hospital at a picnic table as that was the only place we had signal and they were supposed to call us.  I have no idea how long it was before they came back, but Dr. Wemstrom passed us and she didn't intend on telling us then, but since we were sitting there, she told us.  

I saw it in her eyes from the second she started talking.  I knew they would deny intervention.  I could just tell by her voice.  I think they really wanted to help, but they knew as doctors, it would not be fair to Addy to jeopardize her life that much more.  The word she quoted often was "irresponsible."   I understand why, but I feel like a group of doctors were able to decide the fate of my daughter and Charley & I weren't.  They also cited that if they were to attempt intervention, the would require something like a cordocentesis to rule out any malformations.  The results we had from the bladder tap were only FISH results, or basically quick results.  If they would of been able to do a full report, she would have a 1 in 5 chance of having something majorly wrong with her.  Definitely up from the 10% chance that something is wrong with her.  Her FISH results could check out normal, but her final results could not check out.  FISH results are simply preliminary results. typically accurate, but not always.  With that said, if she did have a very serious form of cloaca that cannot be fully detected because of her obstruction...she would not survive post birth anyway.

Dr. Wemstrom made a point to reitterate to me that every one of those doctors thought I had done everything as a mother to save this little girl.  They said my knowledge was nothing short of commendable.  And I was acknowledged of that all day.  They knew I understood what they were telling me and that I had educated myself thoroughly.  To hear that from a doctor felt good, but it didn't, because something inside of me told me this is it....You have done everything you possibly can.  Yet another part of me said..there HAS to be something..  I'm not comfortable with just an assessment.  Besides her thorasic cavity being short, that's all they can tell me about her lungs and then the fluid that has been there since the shunt fell in, may indicate congestive heart failure.  

So, as I try and figure out if there is ANYTHING that can be done safely enough to help Reagan without harming Addy, I also try to wrap my head around the very distinct possibility of figuring out how you bury your infant daughter...

How do you give the one thing back to God that you prayed for 3 years to have in your life?