Our first appointment this morning at the Colorado Children's Hospital was for a fetal MRI. I don't like small spaces, but have never really been afraid of them, so I didn't really expect the MRI to be a big deal. For some reason it really freaked me out though - it took me a while to calm myself down once I was in the machine. In the middle of the scan I started getting really intense hot flashes and pinches in my nerves which made me panic for a minute too - but I guess that is normal. I'm sure just my overall anxiety didn't help much either.
After the MRI we went in for an ultrasound. It took a while to measure what they needed to since there is no amniotic fluid around the baby right now. Then we went and did a fetal echo - basically just an extensive ultrasound of the heart.
All of the scans showed pretty much what they were expecting- an enlarged bladder, swollen kidneys and no amniotic fluid. The heart looked good.
We then met with the surgeon and a few other specialists and talked about the options available to us. One, is to terminate the pregnancy. We could also just let the baby die on its own. Neither of those are options for us, though. Then he explained three different options for intervention. The first is to use a laser to try to zap through the obstruction. There are many risks associated with the laser procedure - mostly that is is just not effective on its own. He recommended that if we wanted to try that - that we also back up with another procedure.
The next option is to place a shunt from the baby's bladder into the amniotic cavity. The shunt is 1mm wide and allows for passage of the fluid - but still with considerable strain on the baby's kidneys. This procedure has been done the same since 1981. While successful in some cases, babies who have had this done still suffer immediate consequences at birth and are usually on dialysis until they are able to get a transplant. He said about 60% will survive birth, and about 35% make it home - most deaths due to underdeveloped lungs.
The last option is to place a 1.2 cm stent through the baby's bladder - similar to the shunt, only much wider - eliminating back up and pressure on the kidneys. A 3mm puncture is made - then a small balloon inflated inside to stretch it to the right size, where the stent is placed. Another advantage to the stent is that it cannot be pulled out by the baby. The shunt actually coils both inside of the bladder and outside of the baby to prevent it from coming out - but it very flexible, and can easily fall out on its own or be pulled out by the baby. However, the stent is made of gore-tex and cannot be moved. The shunt needs to be replaced an average of 2.5 times per pregnancy, while he does not anticipate the stent needing to be replaced at all. Of course, there are still many potential risks - but he feels like the stent will be much more effective.
However, the major drawback to the stent... is that it has never been done before on a human. It has only been tested on animals. Knowing that our baby would be the first to undergo this type of procedure definitely makes me nervous. However, the surgeon has been doing bladder outlet obstruction operations for years, and I trust his experience beyond my two weeks of google searching on the issue. We really feel good about going the route of the stent. It helps me to know that if I am brave, we could potentially help save other babies in the future, too.
After our meeting with the surgeon, we set up an appointment for tomorrow morning to come in and have fluid injected into the amniotic cavity and to draw blood - in case I need it during or after the operation. The amniotic fluid will help them see more on the ultrasound, and is necessary for the operation as well. The surgery will more than likely be on Wednesday, Thursday at the latest.
I am just feeling so overwhelmed right now. Vahe and I both feel really good about the outcome of the surgery, but now all of the long-term details and uncertainties are really stressing me out. I think a lot of it has to do with the anticipation of having the surgery today, but now waiting at least two more days. The surgeon also told me that after a 24-hour monitoring period post-op, I would need to stay an additional week and come in once a day for an ultrasound. We had hoped that we would be home on Thursday or Friday, so the additional week is definitely going to be an emotional and financial expense we did not expect. I already miss the kids so much, it kills me to know I won't see them until late next week. I know they are in the best hands possible with Vahe's parents - and I am sure they are having so much fun, but I just wish that they were here. My heart is breaking not being with them, but I know in the end when this is all behind us, it will have been worth it.
The surgeon also suggested that we plan on moving here around 30-32 weeks so that I can deliver here. He anticipates a preterm labor, and would prefer us to be here - especially being the first to undergo this type of surgery. The baby will likely be in the NICU for at least a few months, so that means we would be in Denver at least 3 months. I am just trying not to think about that yet, and just get through these next few weeks. I don't think I have gone more than a few hours without crying in the last two weeks, and I am just so drained beyond anything I thought I could handle. I have so much hope for our little baby boy - which really has brought me so much peace. I just wish we had a little more hindsight to push us through.