The big letdown

I wish that we could say that we were grateful for our trip to Dallas, and I guess in some strange way we are, but it definitely didn't go as we hoped.

I didn't sleep much on Wednesday night in anticipation of the appointment the next morning, but laid awake praying and enjoying the kicks and taps that I got to feel in my sleepless hours. Jeff and I rose around 6:30 and got up for the hot breakfast our hotel was so gracious to provide.  Luckily our hotel almost provided a shuttle free of charge to the hospital so we hopped the shuttle around 8 and headed to the appointment that changed our entire pregnancy.

The MRI was pretty uneventful.  Baby K was calm enough that they were able to get all the shots they needed in less time than they expected and I had the opportunity to find out that I am, indeed, claustrophobic.  We had about a 30 minute wait while the doctor reviewed our images.

Dr. T. was extremely nice from the first handshake.  She thanked us for taking such a long drive to come for testing and assured us that she'd go over the results as quickly as she could so that we could get back for Kamden's birthday.  She told us as we sat down that we had a lot to go over, and optimistically, my husband asked if it was about how awesome our baby was.  I saw her face fall as she said, "I wish that were it.  I really, really do.  Unfortunately, I don't have good news for you at all."

I couldn't even tell you how long we were in her office.  I had googled images of fetal MRI's so I'd have an idea of what I would be looking at, and what I saw on her computer screen was nothing whatsoever like I'd see online.  I couldn't even make out where our baby was in the pictures, unless we happened to get a good shot of the brain or something like that.  What she pointed out to us eventually started to just sound like I was watching some bad "Lifetime Movie Network" movie...  "If what I'm seeing is in fact kidneys, they became cystic not long after they started forming."  "Your baby does have a bladder, but I can tell by the size of it that it's never had fluid in it...and your baby has never peed.  It never even started producing it's own amniotic fluid."  "Because of the absence of amniotic fluid, your baby's lungs are at about 12 ml of volume on each side, and should be at about 20 ml on each side by this point in pregnancy." She then gave us a chart showing a study that she had actually been head of at the hospital in Dallas which showed that even if our child had "normal" lung growth from now on (meaning that it might not get to where it "should" be, but that the lungs would grow at a steady rate for the remaining part of the pregnancy, not only in size, but also in volume) the total volume would still leave our child in a range that was found to be 100% lethal after birth.  She told us that her fear was that this baby would not even have the strength or capacity to draw one full breath upon delivery.  Thank God she was compassionate with the way she delivered the news.  She cried with us and kept telling me how sorry she was that she was having to tell us the things she was telling us.  She apologized that we drove the distance we had only to hear devastating news and then have the 6 hour drive back to have to think about it and then face our son's birthday.  I was so grateful that she CARED.  I wasn't just a statistic in her office.  I was a person.  I had a name.  And I had a baby that I was going to lose.  A BABY.  Not a "fetus".  A Kellan or a Kaidance.  And she cared.

Jeff asked her if an amniotic infusion would be something that we could consider to help give the baby a better chance.  She smiled compassionately and slowly shook her head.  She said she could tell we had done our homework and was extremely grateful we had, but that in this case, no, it wouldn't help.  What is left of the lungs is basically solidified and what space is there would fill with fluid, but there is no elasticity to allow the baby to practice breathing.  Our next question would have been if we could try steroid injections, but her answer to the previous question pretty much answered it.  I'm sure I'll still cling to that tiny ray of hope and ask my OB about it when we go in this week, but from what I've been researching, it doesn't seem to help.

We also learned, that this child has the same type of brain "anomaly" that Kamden was born with.  Why?  We have no idea and neither do the doctors, but it is there, and it makes me wonder if we should ever try to have another.  Two babies in a row?  That's not a random genetic selection.

She did tell us that from what she could determine with the tests she'd done, it didn't appear to be anything genetic, but more likely a "lightning strike situation" and that the chances of it happening again would be slim to none.  She went on to tell us that if she thought there were a good, fighting chance for this baby that she'd recommend we move to Dallas temporarily to have access to the best NICU possible, but that her highest recommendation was that we go home and be with our family where we would have support and love and help and to focus on our son because he is what would get us through it.

I held myself together pretty well until I called my parents.  I couldn't even talk to my dad, but had Jeff do so, and asked him to call a family friend of ours to give him a heads up so we could start preparations for a memorial service.  All I wanted to do was get home and hold my son.  I slept most of the way home and when I didn't sleep I sat and stared out the window.  I was still feeling my baby doing tumbles, so how in the world could it be true that s/he would never grow up to play with Kamden?  Would never nurse...for Pete's sake, never have a diaper for me to change? 

In many ways, I'm glad we went. We wanted definite answers, and we do have them.  But my God...now to decide what's best for our family and what to do...  The road was starting to get shorter, but it's just gotten longer and longer.  We meet with our OB on Wednesday and will discuss plans of action then.  We're pretty heavily leaning toward delivering the baby early (mid-May or so) because I'm to hit full term when Jeff has to leave for two weeks of training with the national guard.  Our biggest fear is my delivering, our losing the baby and him never being able to meet him/her.  We don't want that at all.  The choice is harder than anything I've ever imagined because on one hand I feel like I'd be choosing to end my baby's life.  On the other hand, if it's only my body sustaining life for him/her anyway, then I'd be giving myself and our family false hope by carrying another 10-12 weeks.  I wish I could describe the tearing at my heart that each kick, that should bring joy, brings.  I love this baby with everything I am, and if there were something more I could do, I'd fight, but I can't, and I'm tired. 

I don't add this final part to be unkind or heartless, but I do ask that, at least this point, if you leave a comment, you don't ask me to "not give up" or "hang in there because it's going to get better when you least expect it".  I'll even go so far as asking you to please not tell me to just "trust in God".  These are all things I know, and things I have done and am doing.  My heart, mind and soul are so tired and so shredded at this point in time though that I emotionally, physically and spiritually cannot do more than just exist and give what little is left of me to Jeff and Kamden.  I don't have the strength to "try harder to believe" or "hold on".  What I ask is that you do it for me...  We are called to stand in the gap for our brothers and sisters in Christ...and I assure you that if you can do so for me, for Jeff and for our family now, I will do so for you later.