On October 11, 2018, I took two pregnancy tests and found out that I was pregnant. I was overjoyed and so excited to start our family! As you can imagine, my mind went into overdrive wondering what this next phase of life will look like and the baby preparation began. After weeks of nausea, fatigue, excitement and prayers that I was growing a healthy little baby, we found out that this journey was going to look a little different than we expected.
When I was 18 weeks pregnant, my husband, Justin, and I were so excited to go to our anatomy ultrasound appointment to find out the gender of our sweet baby. During the appointment, we found out that we were having a little boy!! This should be interesting since his mama is super girly! Everything was growing right on track, except his kidneys and bladder looked more dilated than they should. My doctor told us not to worry about it just yet, but recommended us to a specialist to do a more detailed ultrasound to see if this might be something more serious.
Two weeks later, we went to our local hospital for a specialized ultrasound. It was the longest hour of my life getting the scan done and waiting to talk to the doctor about what might be happening. The doctor finally explained to us that our baby has LUTO. LUTO is when there is a blockage of baby’s urinary tract so he can’t release urine, which in turn can cause damage to the bladder and kidneys, low amniotic fluid levels (which is necessary for baby’s development), and underdevelopment of the lungs (a life-threatening condition). I don’t think I really even heard everything that doctor said, I just felt the world crashing down around me in that moment. For 20 weeks, I prayed for a healthy baby and all of a sudden we find out he isn’t healthy, and may not even survive at all. I was numb. I walked out of that office and just cried in Justin’s arms. I didn’t know what to think or what to do. I drove home with my box of hospital tissues feeling weighed down and so lost.
We were referred to the Cincinnati Children’s Hospital because they specialize in taking care of babies with this condition. We spent three days in Cincinnati getting tons of tests done to make sure baby didn’t have any other abnormalities that could be life threatening and checking the seriousness of the LUTO so far. We talked to the team of doctors that would be helping us through this journey if our little guy survived. We were given small glimpses of hope here and there since our baby still had some amniotic fluid to develop in and his kidneys were still making urine because they could tell his bladder was getting bigger. This was all good news and they were hoping that baby only had a partial blockage of his urinary tract. They decided to send us back to Toledo to let them monitor me weekly to make sure baby still had fluid and was doing okay. There was no need for them to intervene if that was the case. I left feeling worried about the unknown, but revitalized with a little with hope that everything might just be okay.
At our second follow up ultrasound back in Toledo, they found that our baby had extremely low fluid levels to the point where he was a candidate for intervention in Cincinnati. Once again, it was like all of my hopes and prayers were ripped away and I felt the weight falling back onto my shoulders. All I could do that day was go home and cry. I couldn’t find the energy or motivation to do anything or talk to anyone. I questioned God more than I’d like to admit and just didn’t understand why this was our reality. What did we do wrong? Why us? Why our baby?
Justin and I traveled back down to Cincinnati three days later where I had my first procedure done in an attempt to try to keep our baby growing and developing. The doctors wanted to drain our baby’s full bladder for more testing and then do an Amnioinfusion, which means they insert a long, thin needle through my belly into the amniotic sac and fill it up with saline to replace the lost amniotic fluid. Amniotic fluid is necessary for lung development, which is always the biggest priority for a baby. The first time I had this procedure done, it was one of the most painful, traumatic experiences of my life. Between my anxiety about a large needle in my belly without anything being numbed and my baby needing this extreme intervention just to have the chance to survive, the procedure was almost unbearable. Despite the pain and fear, the first amnioinfusion was a success and they hoped the fluid would last a few weeks and then we would move forward from there.
Two weeks later, we went to back to the Toledo hospital for our follow up ultrasound and found out that the fluid was extremely low again and back to Cincinnati we went that same week. We had another Amnioinfusion procedure done (it was less painful this time around and got more tolerable each time I had it done, but it was still so scary) and scheduled weekly Amnioinfusions from there on out. The weekly 3 hour trip to Cincinnati became a regular thing for us. I made it through 4 successful Amnioinfusions, but during the fifth procedure when I was 29+4 weeks pregnant, my water broke. I remember laying there, watching the ultrasound machine image of the needle releasing saline into the amniotic sac while my sweet boy was floating in there happy as can be and all of a sudden I felt a gush of fluid leak out. They immediately ended the procedure and I went into a bit of a shock. I couldn’t think, my stomach was in pain, and I just remember turning to Justin and saying, “No! This can’t be happening right now!” They took me to a room in a wheelchair and laid me down on a hospital bed where I was so cold I started shivering uncontrollably, still in pain and in shock. At one point I realized my parents had arrived and there were about 6 doctors and nurses in my room trying to figure out what was going on, but I couldn’t process what anyone was trying to say to me because I was so out of it. Once they got my pain to go away and warmed me up with some blankets, they did an exam and confirmed that I wasn’t in active labor. I received multiple rounds of shots, an IV with fluids and I was hooked up to machines so baby could be monitored constantly for the next 48 hours.
