Last Wednesday we went in for an early gender determination ultrasound. We were unable to tell the gender, because there was a cyst twice the size of the baby's head found in its belly somewhere. The doctor was unsure where or even what it is, but guessed that it could be an ovarian cyst if it was a girl, or possibly a bladder obstruction. I left the doctor's office afraid, with no answers, and an appointment with a specialist over two weeks out.
I quickly called the Utah Valley MFM clinic where I had been referred by my doctor to be put on their cancellation list, I couldn't wait until June 5th for answers. That Friday night I received a call that there had been a cancellation and could come in early Tuesday morning. I will forever be grateful for that angel who gave up her appointment for me.
We went in on Tuesday, and learned that baby has a bladder obstruction, and likely kidney failure.
Because the fluid inside the baby is not able to get out, there is virtually no amniotic fluid - which is crucial to organ development, especially the lungs. The blockage of the bladder also creates a great amount of pressure on the kidneys, slowly shutting them down. Left untreated, the chance of the baby living to term is very unlikely with no chance of survival. The doctor told us about a surgery that could be done out of Colorado (essentially creating a hole in the baby’s belly to allow the fluid to drain out continuously until birth) but told us we were very unlikely candidates - because of the scarring already shown on the kidneys. We left our morning appointment with the option to terminate the pregnancy, or to wait for the baby to die on its own. We were heartbroken and hopeless.
The surgeon called us around noon, and brought a glimpse of hope for us that we had given up on. He told me that it was possible, even despite its severity, that we caught the obstruction early enough that the kidneys could still be functioning - one of the requirements to qualify for the surgery. He explained the two different options we could potentially have, and did so with a hopeful heart that brought me so much peace.
Dr. Crombleholme told me that in the past, they placed a 1mm shunt through the baby's belly into its bladder - so that the fluid could escape through the small hole. He explained how while effective, it still took so much pressure to force the fluid out, that further damage was still done to the kidneys. Also, the baby could easily pull the shunt out, and it had to be replaced an average of 2.5 times per pregnancy. This type of surgery has a 50% survival rate. He then told me about a procedure that has only been done twice, but that he feels is more effective where they create a 1.2 cm hole though the baby's abdomen. Because its only been done twice, he wasn't really sure of how many repeat surgeries we would need - but was certain it would be much less than the first option. He estimated that if successful, I would be able to carry the baby to 35-36 weeks and that the baby would most likely be put on immediate dialysis. Even if chances were slim I knew we had to try to qualify for the surgery.
After speaking with the surgeon, I tried contacting the doctor multiple times to make an appointment to come in to do the testing. I wouldn't wait one day this time. After a few failed attempts at reaching him I went to the hospital and told the receptionist that I would wait in the lobby until he was available. I felt bad for being so pushy, its not usually my nature, but when one day could make a difference in our baby's life, I wasn't going to risk it - and the extreme amount of anxiety I was feeling could only be somewhat calmed by being proactive.
The doctor agreed to see me after he was done with his patients for the day, I am so grateful. I felt so bad keeping him at work late, but I knew it was ok to be a stubborn crazy mama in this situation. We took multiple tests, including draining the baby's bladder and belly cavity to send the fluid off for testing. In normal cases, they would have also retrieved a small amount of amniotic fluid, but there was none to spare, if even to be found. When that needle went through my skin it pinched for sure, but as it went through my uterus it was more painful than I was expecting. I got very lightheaded and dizzy as they pulled out the fluid and I had what felt like a 5 minute labor contraction. I just pray that that little babe did not feel pain as the needle went through its tiny body.
The doctor assumed that the test would likely have to be repeated, since the fluid we pulled out had been sitting for some time and was more likely stagnant. He said if the tests came back abnormal, we would test again with the new fluid in the baby's bladder.
Yesterday, we got the first results back - indicating if the kidneys are functioning, the test I am most worried about. 3 of the 4 tests passed, one failing with an outlier that both the doctor and surgeon do not believe is possible to be accurate. They sent the labs to be tested again, and the results of that, along with the genetics testing for chromosomal abnormalities and to determine the baby's gender will hopefully be in by tomorrow - Monday at the latest. Bladder obstructions are much more common in boys - but since there is no fluid, the baby is pretty squished inside with its legs crossed, so we can't be sure. Cause and treatment are somewhat different depending on gender, so it is important to find out. There is only a 10% chance that there will be other chromosomal issues, so I feel pretty good that we will pass the genetics test. The only test I am worried about is the other kidney test, and I'm hoping since the other 3 passed, it is a good indication that the last should pass too.
These last few days have been the most emotionally exhausting I have experienced, but I am holding on to the hope that we will qualify for the surgery and that it will be successful for our little babe. I have gone from assuming that we would just have to wait for our baby to pass, heartbroken over how I would tell the girls, to the hope that we will be able to hold a healthy baby in our arms. I know that the road ahead in either direction will not be easy, but I know that Heavenly Father is watching out for our little family and knows what we need most at this time.
I cannot thank you all enough for your love and support. We have truly felt your prayers, and they have been manifest through the miracles we are already experiencing. Please continue to send a few up our way as we await the results of our final tests.
I've been a little scattered, and have not been doing well at keeping everyone updated - but I will do my best to update on here. Love you all.