Update

We had another appointment today. Everything looked pretty much the same as last Friday. Our doctor consulted with colleagues from John Hopkins and Houston along with the Pediatric Urologist over the weekend. They all agreed on the following:
-The urine sample to test for kidney function is not accurate therefore not worth doing.
-There is no evidence that draining the bladder in utero helps kidney function.
- Delivering the baby early (even in a singleton pregnancy) would do more harm than good.

So... we will still have appointments every week to monitor our boys but we won't do anything or know anything more until they are born (in another 8 weeks- cross your fingers that I can make it that long!).

Still waiting...

We went in for another appointment/ultrasound today for baby McKay. We don’t know much more than we did on Monday. His bladder was slightly smaller than last time (3x3cm as opposed to 3x4+cm on Monday- his brother’s was 2x2 cm). He had slightly more amniotic fluid today, which could mean that he is getting some urine out on his own. His kidneys were still filled with fluid and did not look good.

We have another appointment scheduled for Monday (March 11). The doctor will potentially drain the bladder again if it has gotten larger. Our doctor is consulting multiple doctors to see if it is worth it to test the urine for kidney function (the test is not always accurate. It is also usually done on a younger fetus (about 20 weeks) instead of a 29 week fetus so the measurements could be off which would make it even less accurate). If doctors don’t believe the test is accurate, we won’t pursue that option. We will proceed as if he still has some kidney function. This means that we will monitor him every week through ultrasound and whenever the bladder gets large, they will do the procedure to drain the bladder.

So… we will probably not know until he is born what type of function, if any, his kidneys have. If, at birth, he has any amount of kidney function then we will have options of treatment such as dialysis and eventually a transplant.

We have been so touched by the comments, messages, emails, texts, and phone calls we have received. We are even more grateful for all the prayers given in our behalf. We truly have felt peace and strength because of your heart felt prayers. Thank you!

Come what may...

Remember my blog post on advice to moms-to-be of ‘come what may and love it’? Well I guess the Lord decided to put that advice to the test…

I went in last Wednesday (February 27, 2013) at 27 weeks gestation for another Ultrasound with Maternal Fetal Medicine (the High Risk Doctors). I’ve been getting ultrasounds every two weeks and they have been picture perfect so I wasn’t too concerned about this ultrasound but… Baby A (whom just yesterday we decided to name McKay) had an enlarged bladder full of urine. The urine was also backed up into his kidneys. The doctor explained to me that this is called Bladder Outlet Obstruction. In essence there is a blockage in the penis that is not allowing urine to release into the amniotic fluid. Not being able to pee doesn’t sound like that big of a deal but there’s two or three problems a fetus runs into with this diagnosis. First, the bladder can get so enlarged that it doesn’t give the lungs enough space to develop. Second, amniotic fluid is very important to the development of the lungs and the health of the baby. If the baby can’t urinate and keep the amount of amniotic fluid to a good level, the lungs can’t develop. Thirdly, the kidneys can become damaged. Bladder Outlet Obstruction is usually diagnosed at the 20 week ultrasound but can be found as early as 14-16 weeks. When it is diagnosed that early and is as severe as McKay’s is, there’s usually not much the doctors can do and the baby has a very poor prognosis.

 

Picture of a baby in utero with Bladder Outlet Obstruction.

This is not McKay's ultrasound but this is what his bladder looked like on his ultrasound.

The doctor explained that McKay’s case is puzzling because it didn’t show up until so late in the game. Because McKay’s didn’t show up until now, the doctor was not as worried about his lungs. Even though the lungs are not fully developed, the structure of the lungs should be present. His amniotic fluid was at 2 cm (anything above 2 is normal so he is borderline on that problem). But the doctor said that his kidneys look VERY bad. He said that it is VERY probable that there is damage to the kidneys but at this point we have no idea how much function, if any, the kidneys have left. The problem with kidneys is that you can’t tell the degree of function by looking at them.

So needless to say the Maternal Fetal Medicine doctor was puzzled. He talked with multiple colleagues throughout the state who were also puzzled. One of the options you can try is to drain the bladder. You do a procedure similar to an amniocentesis where a needle is put through the mothers stomach, through the uterus wall, through the babies stomach, into the bladder and the urine is drained. The issue with this procedure is that there is a small chance it could cause an infection and put me into labor. That problem is increased in my case because of McKay’s twin brother. The doctor did not want to jeopardize the health of the twin brother by bringing him prematurely when he didn’t even know if this procedure could help McKay at all (the kidneys could be so damaged that draining the bladder can’t help him). But we went to the hospital yesterday (Monday, March 4, 2013) and we decided to drain his bladder.

The next step in the process is for us to go in on Friday (March 8) to check the status of his bladder and kidneys. If his bladder is full, we will potentially drain it again then send that urine in to test renal function (kidney function). We couldn’t send in the first sample because we don’t know how old the urine is. They need a fresh sample to test kidney function. The problem with the urine sample is that it can only tell you if there is or is not kidney damage. It can’t tell you the degree of damage (10% or 100% damage could look the same).

So… right now we wait. There’s a slight possibility that relieving the pressure in the bladder could resolve the obstruction issue (even though he would still have kidney damage). If not, we could potentially continue to drain the bladder and/or put a catheter inside him with a similar procedure (but the catheter always falls out so we would have to do that multiple times as well). The biggest concern the doctors have for him right now is his kidneys.

We are so grateful for all the family and friends that knew a little about this and have been fasting and praying for our family.  We truly have felt strength and peace from your prayers and your love.