Eli's story: Traveling to Texas for a lifesaving fetal surgery

Patient Stories

Dec. 6, 2016 is the day that changed our lives forever. It was the day I was going in to hear my sweet baby's heartbeat at our local hospital in Louisiana and to find out everything was OK … but to my surprise I had an ultrasound done that showed Eli's bladder was very enlarged and completely filled with urine and it had no way to escape.

I found myself in complete heartache and pain because I had no idea what this finding would mean for our son, but I knew it wasn't good. We were seen by a maternal-fetal medicine (MFM) specialist the very next day who diagnosed Eli with LUTO (lower urinary track obstruction). It is a condition that's very uncommon. It happens to 1 in 8-10,000 pregnancies. From that day on, we had countless ultrasounds done weekly and even drained Eli's bladder as early as 14 weeks which was highly not recommended to do. We were told it was very risky and that Eli could die, but we felt like we had to do something to give our baby a chance at life.

C-PAV Eli's Story LUTO

Termination was never an option for us – and that's when our faith kicked in overdrive and we found Texas Children’s Fetal Center at Texas Children’s Pavilion for Women. I placed everything in God's hands and just completely trusted that He would walk us through this journey and He did. Eli is a living miracle baby. Before birth, he had three vesicocentesis procedures, three fetal surgeries and countless ultrasounds. I was admitted on May 5 to be monitored very closely for dangerously low amniotic fluid. After his birth on May 31 (via emergency C-section), we lived moment-to-moment, taking each minute as it came, there were countless sleepless nights where we held our breath until the morning. Intubation, paralysis, oscillator, ventilator, high blood pressure, low blood pressure, HD catheter, PD catheter, feeding tubes, 5 chest tubes, numerous X-rays, extubation, dialysis, blood transfusions, labs, nasal cannula, steroids, sedation, pain management, withdrawals, learning to feed, brain damage, seizures, MRIs, EEGs, countless meds, specialist and the list goes on and on ...

This was all happening to my tiny innocent infant child and I had no control over it. I felt like my world was spinning out of control. As a mother, I just wanted to take his pain away and I couldn't. The feeling of seeing your baby in that condition and fighting for his life is indescribable. I was so afraid of my phone ringing in the middle of the night with a doctor on the other end saying, “I’m so sorry, but we did all we could do.''

I had to completely place my trust in the nurses and doctors that they would take care of Eli like I would, and they did. All the doctors and nurses at Texas Children's Hospital that are part of the fetal intervention team and the NICU will forever have a special place in my heart because without them and God, Eli wouldn't be here with us. We have met so many wonderful NICU families who will forever be our family. We shared tears, stories, hugs and a lot of love. My heart changed forever. I will always pray for babies in the NICU and their families. Though this has been the hardest experience of my life, I would relive it all over again if I had to. I have learned so much about myself. I am a stronger person because of it. My faith and my marriage has strengthened tremendously. I feel honored God chose Ross and I to be Eli's parents. He is almost 6 months old; he is the happiest, most content baby I know. Full of smiles and coos. He only cries if he is getting his diaper changed or a bath.

When he looks into my eyes, it's like I can feel it deep in my soul. We will do everything possible to make sure he has everything he needs to thrive and be happy. I can't wait to tell him his story one day. To tell him he is a strong, brave, courageous, miracle baby. That God has touched his life. I know in my heart it's everyone's prayers and love that brought Eli through everything. We can't thank everyone enough for all the love and support through this very difficult time. It's because of amazing doctors, nurses, friends and family we will get through this. We hope to bring Eli home soon. We will do dialysis every night until he gets a transplant around the age of 2. Our journey is far from over, but we will take it one day at a time and just cherish every moment we have with Ana and Eli, our two precious gifts from God.

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