What We Knew (or Didn’t Know)
This post has been a long time comin’. I almost thought about basing my blog entirely around Brennan’s medical needs but those first few months represent some dark, dark times for my family, and beginning a blog about it just didn’t seem right. As I’m sure you can guess, these aren’t our happiest times, so if hospital stuff makes you uncomfortable or sad, then let this be your disclaimer. #kidneybaby, part 1—here we go.
When I got my 20 week ultrasound, the tech revealed to us that we had a healthy, squirmy little boy. My ultrasound and midwife appointment were three days apart since I didn’t think it was necessary to see her the same day. When I got home, I iced blue cupcakes for the other officers in Liam’s course, and began to write my Christmas cards. About 90 minutes later, I received a phone call from a Missouri number; I answered it and to my surprise, it was a random radiologist who wanted to discuss my ultrasound results. He told me that my baby had a mass in his head, a possible hole in his heart, and bad kidneys. He continued by telling me these were all markers for Down Syndrome and in the course of minutes, my pregnancy went from healthy to high-risk and my midwife would no longer be able to see me. He told me I had options for termination and to discuss them ASAP with my medical team. I’ve had a lot of pretty bad days, but thus far I think that was the worst day of my life.
I fell to my knees to sob and pray, and then reluctantly called Liam, my mom, and my mother-in-law. All three were beacons of hope, but I could hear the worry in their voices. I googled like a mad woman and called the OB office on repeat, demanding to be seen. I was finally able to see my midwife two days later. I went in to her room swollen from my then-daily set of tears, just to find out she had no idea I had even had an ultrasound. She and the OB looked at my results, and came to the determination that they were actually inconclusive. The pictures were too blurry to make out what (if anything) was wrong but to follow up with a high risk doctor in two weeks when I was a little further along. Needless to say, I had a nice long chat with the hospital’s Ethics department where I found out the radiologist was new and obviously did not know how to read fetal ultrasounds, his place, nor common sense of news to be delivered over the phone. He was let go. My medical ethics degree—BAM—useful (and will continue to be throughout my story!)
Anyways, so two weeks later I see the high risk doctor. After the longest ultrasound of my life, we chatted about the results. Baby’s head: perfectly fine. Baby’s heart: perfectly fine. Baby’s kidneys: slightly over-filled with fluid. He explained that this was mild hydronephrosis, very common in little boys and almost always cleared up before or soon after delivery. Of course, I would be monitored, but as a Christian himself, he did not even offer me the amniocentesis. Armed with this news, I called my mom and my MIL absolutely thrilled. This was only a hiccup—my baby was healthy.
My pregnancy continued with each ultrasound being filled with the hope of his hydronephrosis clearing up. It didn’t. By the time we left Missouri for Texas, the left kidney was twice the size it should have been. The right kidney continued to fluctuate, suggesting reflux but never returned to normal size (about 4-6 millimeters). By the time I delivered, the left kidney was 2.8 centimeters, and the right was anywhere between 1.1 and 1.8 centimeters. This was more than enough cause for me to deliver early.
So I told you all my birth story. After Brennan was born, I was shocked the nurses didn’t take him straight to NICU. I was told the urologist wanted to wait and see how his blood levels panned out, and how his ultrasound looked from outside the womb. Of course, Liam and I were thrilled. By 18 hours postpartum, however, things began to take a turn for the worse. Brennan was already at over 10% weight loss, and the REALLY NICE NURSES (sarcasm) told me that it was because I had unhealthy colostrum. If I wanted to take my baby home, I had to give him formula and begin pumping every 2 hours to expedite my milk supply. Two days went by, and no word on us going home. Brennan continued to lose weight, and by two days postpartum, he went from 7 lbs, 4 oz to 6 pounds. When they took his kidney ultrasound at three days postpartum, his left kidney was over 5cm and his right was climbing towards 3cm. At this point, my milk came in (ouch!) but I was warned against breastfeeding because they wanted Brennan to keep on weight, and said they couldn’t trust my breastmilk. When I asked questions I was given sarcastic answers, and more often asked if Liam and I were married, or how old we were. At this point, my mom and Liam’s mom began to realize that we weren’t being treated fairly and encouraged us to talk to a hospital administrator. We were going to wait until the morning but the night of April 3rd began our 24 hours of unfortunate events.
Maria (at St. David’s North Austin!) was our nurse that night and our first impression of her was her snapping at me to stop breastfeeding our child. She gave me a pen and piece of paper and told us we needed to record everything he ate, and that in her whole nursing career, she had never seen a child lose weight as quickly or look as sickly as Brennan. When she came back to check on us, she saw Liam’s military blanket. She proceeded to tell us how her ex-husband was in the Army, and how she hated the military because “all the guys were cheating assholes and the girls were stupid sluts”. She mentioned how glad she was that her children wouldn’t be raised in that culture and how her husband had to call CPS on her because she threatened to kill his new girlfriend (you CANNOT make this stuff up). So around midnight, I called for the charge nurse, and demanded we speak to someone in administration. I was whispering through gritted teeth so I think I was finally taken seriously. The nicest admin lady found us around 1am, and Liam talked because I was sobbing too hard. She apologized profusely, found us a different nurse, and promised to talk with the doctors to get us the answer we’d been waiting on—can we go home?
The next morning, our nurse came to get Brennan’s blood to check levels and returned an hour later with about six different people, the pediatrician, a neonatologist, and four NICU nurses. Brennan’s creatinine (kidney functioning levels in the blood) was about 3—the norm for infants—0.2. They had just gotten in touch with the urologist, who was out of town the weekend before, and said the inevitable, Brennan was in kidney failure and he needed to be moved to the NICU immediately. Cue the second worst day of my life, the second time I was literally floored by my grief. As we were walking to the NICU, the neonatologist explained that about 99% of babies with fetal hydronephrosis were totally fine within 72 hours which is why we were held in the Postpartum Unit. Brennan was among the 1%. He needed to become hydrated and gain some weight before the doctors could think about doing any procedures, but they would need to be soon given his situation.
That seems like a good stopping point for part 1—I will get to the surgeries next post.