Below is Elijah's and his family's journey. Please keep this little man and his family in your thoughts and prayers.
To Our Family, Friends and Community,
December 6th is a day that will forever change our lives. After having a miscarriage a year before we were very excited to be pregnant again and at 12 weeks along. Lacey went in for a routine checkup just expecting to hear the baby's heartbeat and find out that everything was okay, but to her surprise the doctor comes in with a new portable ultrasound machine and she was going to get her first glimpse at our new baby! During the ultrasound the doctor noticed a larger than normal black spot and after finishing the scan walked Lacey back to his office and had her call me to come meet her. We knew this was not going to be good since we found ourselves sitting in this same office one year earlier to find out about the miscarriage. When I arrived we were told that the large black spot was the baby's bladder and we were scheduled for an appointment with a maternal fetal specialist the next day at 8:00 am. The specialist confirmed that it was the bladder that had a blockage and it was a condition called luto, lower urinary tract obstruction, which is pretty rare and only happens in approximately 1 in 8000 pregnancies. At 14 weeks the bladder was very large and taking over his entire abdomen so we made the very difficult decision to let our specialist in Lafayette perform a vesicocentesis, which is a procedure where he inserted a needle into the baby's bladder to be able to drain the urine and relieve the pressure. Although performing the procedure this early on was very risky for Eli's life, we felt that with the size of his bladder we had to intervene. This procedure was performed one more time in Lafayette at 15 weeks and then we decided to transfer to Texas Children's Hospital to begin the road to fetal surgeries. At 16 weeks the team at Texas Children's again drained the fluid from Eli but this time it was from his abdomen, since all of his urine had drained from the bladder through the previous puncture sites into his abdomen. During this same week after many test results the first fetal surgery was preformed. A shunt was placed through the wall of Eli's abdomen which would allow the urine inside to escape into the amniotic sac and would hopefully allow for somewhat normal lung development and decrease the chance of kidney failure. During the ultrasound preformed the next day it was found that the shunt had become dislodged and the abdomen was again filling up with urine. At 17 weeks the second shunt was placed, again into his abdomen, and did the job of draining all the urine from his abdomen and replenishing the amniotic fluid around him. During week 18 it was found that since all of the fluid was now out of the abdomen the bladder began to fill with urine again, so during this week a third shunt was placed into the bladder to allow this urine to drain. We would now follow his progress with weekly ultrasounds back in Lafayette with positive results week after week, until 25 weeks when they found that the amniotic fluid level had drastically decreased. We were sent back to Texas Children's and after a couple of ultrasounds the fluid level had risen, not to normal levels but acceptable levels so we again headed back home. A big step for us was at 32 weeks when we moved to Houston temporarily until Eli's birth and for whatever journey we would face after. Our plan was to stay with our great friends, Matt and Ashley Perry for the first two weeks and then move into the Ronald McDonald House for the remainder of the time. This plan was changed when during the second week Lacey was admitted into the hospital for low amniotic fluid and they said to be ready because he could come at anytime. That time came on May 31st, 2017, at 6:20 pm and I will never forget that day and time as it was the scariest time of my life. Lacey was placed on the monitor to record Eli's heart rate like they had been doing every 4 hours for the past month. After about 4 minutes his heart rate dropped to the 60's and the nurses tried getting it to come back up but were unsuccessful and rushed her out the room in her bed and said you're having a baby! Since it was an emergency c-section I was not allowed in the delivery room so they brought Ana and I to a tiny waiting room right down the hall from where they were delivering Eli. He was born at 6:55 pm and not long after was wheeled to the Level 4 NICU where the majority of our time from then on has been spent. During his first night of life he has battled through being put on a ventilator at 100% oxygen, getting chest tubes in both sides of his chest cavity, getting a catheter placed through his belly directly into his bladder and multiple other lines in different areas running through his veins! I can honestly say in that first night he was put through more than I have in my entire life. There has been many ups and downs during this almost two months that we have been here with him and he has fought through it all like a champ, and I know he will continue to fight on. I couldn't be more proud of my little man and can't believe that I am the one that he gets to call dad. Although he still has a very long road ahead of him we know that he will overcome whatever this disease will throw at him!
We would like to give a huge THANK YOU to all of you! We could not have gotten through this journey without the tremendous support we have received from our family and friends. And most importantly, we would like to thank God! This tough little boy has definitely strengthened our faith and without prayer we would have crumbled a long time ago.
Please keep Eli in your thoughts and prayers.
Ross, Lacey, Ana and Elijah Prejean
- Roni Kintsel
- Sean Bertrand
- Ashley Guidroz
- Jody Arceneaux
- Heidi Champagne
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