Saturday, May 11, 2013


It has been months since I've posted.  MONTHS.  And I'm not even going to try to back up and play catch up.  Too much work.
I'm going to start where I am in life right now, because that's what needs to happen.

First I'd like to introduce you to this sweet baby.  Words can't describe the love we have already towards this baby.

Now I'd like to tell you the things we've learned about this baby the past few days.  And this is where it get rough. This beautiful little one has been diagnosed with Renal Agenesis, also known as Potter's Syndrome.  Ultimately this means our baby cannot survive.  'Incompatible with life' is the term doctors use.  I am currently 21 weeks pregnant.

Renal Agenesis basically means our baby has no kidneys.  No one knows if there were there and then stopped functioning or if they were never there to begin with.  I think they were never there to begin with.  The kidney's serve as a major function in supplying most of the amniotic fluid that surrounds the baby.  Our baby has no fluid whatsoever, because there are no kidney's process it.  Because there is no fluid our baby isn't breathing it in, helping the lungs grow.  The lungs are not developing.  Along with that, the baby is not swallowing fluid.  There is no stomach in our baby because it was unable to develop.  And while the baby will still develop and grow, being supported by the placenta (which is in amazing condition the doctors told me), our baby will still struggle, being so compressed in there without any fluid to cushion movement.  I rarely feel any movement, and have to lay still for a long time and wait patiently to feel any sort of activity.

All that alone is enough for our baby to not be able to live. Lung failure after baby is born because the lungs are severely underdeveloped.  And not just preemie underdeveloped, but like 12week baby underdeveloped.  Just no chance to be able to grow.

Unfortunately, that's not the only thing our poor sweetheart has been given.  The heart in our dear baby is 3-4 times larger than it should be.  It's working MUCH too hard, and as a result (maybe?  We're not sure) isn't pumping and beating properly.  Over a doppler it sounds great, which is why we never had any suspicion that anything would be wrong.  However, on the ultrasound it shows the detail, which is worrisome.

At this point we're not sure when (because it probably is a matter of when) our baby's heart will give out.  When it will eventual wear itself out.

We hope and pray for a chance to meet this baby for a few moments, but ultimately, this baby is too perfect for this world, and will not be around very long, if at all.  Our options are few at this time: 1-induce at anytime. 2-wait until I go into natural labor, which has the risks of our baby already having died, or possibly die during the birth. I have an anterior placenta which limits the csection option, and I've been told (while pregnant with Martin) the way my throat is formed I would most likely have to be completely knocked out for a csection.  Which means if our baby were born alive and lived for a very short time, I might not be awake enough to remember it.  NOT an option. We're praying for guidance to help us make the best decision for our baby and for us.

Yes, our hearts are breaking.  Yes, we cry every day, at almost every thought of our baby.  Yes, I still can't fathom the idea that I will be burying my child, buying a casket instead of a carseat, planning for a funeral instead of a baby shower. It's something I never imagined we'd have to go through.

There are millions of thoughts rolling through my head at any given moment.  Different things about different aspects of this situation.  Every day I thank Matt for marrying me in the temple, so our family can be together forever and we will get a chance to be with our sweet baby in the next life.  I think about how much I can cram into the short precious time we'll have together.  How many memories we can make with our baby. I often rage in my head about why we have to go through this, after all we've already gone through to get Martin here safely. I sob about how I can't let this little one go, that this is a trial I don't think I'll get through.  I pray for a miracle that the kidney's will magically appear and our baby will be just fine.  I feel like this isn't happening to us, it's just a dream I'm going to wake up from.  Random things trigger me, and I've had to walk out of stores trying to control my tears until I get to the safety of my car and can sob alone.

We're trying to make the best of a horrible situation.  There was nothing we could have done to prevent it, and nothing we can do to fix it.  But we can prepare, which many families don't even get the chance to.  It's hard to be grateful for something so sad, but we're grateful for that.  We know any time we're blessed to receive is precious.  We realize how wonderful our two children are even more than before.  But we're grieving.  We're struggling.  We want to crawl into bed and just hide.

We appreciate the love and support from our family and friends right now, we appreciate the emails and messages.  Please understand if it takes us time to respond, or if we don't respond as all.  The gesture means more to us than you realize, it's just a hard thing to respond to.  And please forgive me as I often forget that other people will want to grieve as well.  Part of me just wants to be selfish, and I'm trying to remember that others love this baby too.  

Here are some resources for those who are interested. (this is a site put together by a new friend of mine, (information relating to Potter's Syndrome)