Thursday, June 11, 2015

Colorado Children's Hospital - Day Eleven

God is certainly teaching me that this is all in His hands, and in His time. All I feel is left to do is just trust in Him, I have absolutely no control other than choosing to fight for this baby boy.

Our ultrasound this morning showed that baby's bladder has still not healed, there is no amniotic fluid around the baby, and his tummy is full of a massive amount of fluid, or ascities (a fancy term for fluid in the belly). There is so much fluid in his belly right now that it is actually displacing his heart. The bladder shows urine inside, which is good and indicates kidney function, but it is escaping into his body through the bladder rupture. The bladder walls are so thick from being expanded that they are not really sure if the rupture will even heal at all- which, isn't necessarily a bad thing, just another unknown.

The sonographer also pointed out baby's oblong head shape today - which I had noticed before, but assumed that was just the normal shape of the head this early on. She said that it is normal for low fluid, and chances are it will round out before he is born, if not after.

So, at this point - we are going in tomorrow for surgery #2 of who knows how many. Because the bladder is still decompressed, they cannot place the stent all the way through. So, for now, they will place the 1mm shunt just through baby's belly to allow the fluid to drain out. They will first do another amnio infusion (squirting a small amount of fluid into the uterus) to give them a little wiggle room to move once they are inside. Otherwise, his skin is literally right on the uterus, and they need to be able to have that space to adjust their position slightly once inside. Last time they did the infusion the day before, but because the risks are getting higher each time they disrupt the uterus, they are going to just do it in one shot this time.

It's possible this could be a permanent fix until birth, but it is more likely temporary. The shunts need to be replaced an average of 2-3 times per pregnancy, and if baby's bladder does heal - we will need to go back to Plan A and place the stent all the way through. 

So, for now we will have a temporary fix to push fluid out of baby's belly into the uterus. It will still take a little pressure to push it out, but as long as we can decrease the ascites, baby should be ok. The good news is the kidneys are still doing their job - and since there is no back-up in the bladder, they should not be negatively affected any further. 

We will likely still be here another few weeks to few years. I've stopped trying to guess. At this point I honestly wouldn't be surprised if we were here until delivery, and then who knows how much longer after in the NICU. It truly is a blessing that we are even here, that we are given the chance to fight, and I know we are in the best hands possible. 

Vahe is bringing the girls tonight, I can't wait to see them. I have missed them so much - they both bring so much love and joy to our family. Arie will stay home with Grandma. Just over FaceTime I feel like he has doubled in size over these last two weeks. His first birthday is on the 21st and I can't believe I will probably be missing it, it kills me. We might just have to have a very belated birthday party for him - he won't know the difference, right?

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