"I just wanted to share my story and to give other people hope. That they aren't going through problems alone, that we are all here to love and support each other. Thank you all for the love and support and God Bless!"
-Sara (Austin's mom)
I found out I was pregnant in October of 2013, my husband and I were so excited to finally start a family! We had a checkup after check-ups everything was healthy and going fine up until my 19 week appointment. During my 19 week check up they had told us our son has Hydronephrosis. At the time we were absolutely terrified on what they had meant, a million things were racing through our heads! They explained to us that he had posterior urethral valves (PUV), which means that he was born with extra flaps of tissue that have grown in his urethra, the tube that leads from the bladder to the tip of his penis. These extra flaps of tissue block the normal flow of urine, which can damage organs such as the bladder and kidneys. Posterior Urethral Valves caused him to have Hydronephrosis!
Hydronephrosis is the swelling of the kidneys due to a build-up of urine. It happens when urine cannot drain out from the kidney to the bladder from a blockage or obstruction. His Hydronephrosis occurred in both his kidneys, and his bladder was damaged and so were his ureters. They told us not to worry but he could get better before he was born. We went home that day researched all we could on his condition. Weeks passed and appointments passed but our 31 week appointment is what changed our lives forever. During my ultrasound they had told me I hardly had any amniotic fluid and that they were going to be admitting me into the hospital that day! I didn't know what to think. I was scared and worried, they were telling me about C-sections and early delivery so many things running through my mind. I arrived at the hospital they gave me steroid shots and lots of fluid. I had talked to the doctors and they had told me that we are going to wait as long as we could to keep him in there a little longer. I thought I was only going to be in the hospital for a few days I ended up being there in till I was 34 weeks pregnant.
I had scheduled a C-section on May 15th, 2014. I wasn't getting any better and it was time for him to come out to get him safe and the help he needed. He was born at 3 o'clock p.m. that afternoon Weighing 5 pounds 10 ounces and 21 inches long. I went into recovery I saw them roll him into my room in the incubator. I put my hands in the little portholes and I held his little hands as long as I could. Little did I know I was only going to see him for 10 minutes. They took him away to Valley Children's Hospital. I was so scared to be away from him but I knew he was in good hands. The next day I got a visitor pass from the doctor to go see him for a few hours. I didn't care how much pain I was in from my C-section, my husband drove me to the hospital to see him and I walked up to the NICU and I saw him laying there. He had tubes and wires left and right with monitors hooked up. It was so hard to look at something so precious and so beautiful look so helpless. I couldn't hold him I could only hold his little hands it was so heartbreaking.
I only had a two-hour visitor pass so after that visit I had to go back to the hospital. Two days passed by that I didn't see him, on that 4th day I was released and the first thing I did was go see my son. Later on that day we talked to the doctors and the surgeons and they had told us that he would be needing two surgeries to help him urinate. This surgery was a Vesicostomy and Nephrostomy tubes. Vesicostomy is a surgical opening in the bladder to the outside of the body (lower belly) that allows urine to drain. The second surgery was Nephrostomy tubes which is a catheter (thin plastic tube) that is inserted through your skin and into your kidney. The Nephrostomy tube drains urine from your kidney into a collecting bag outside your body. He needed Nephrostomy tubes in both of his kidneys. I was absolutely terrified having my little bitty newborn baby being put under such intensive surgery.
The next day after talking to the doctors he underwent those surgeries. It was a success but later down the road he got infections into his urine and kidneys. We were in NICU for almost 2 months learning all sorts of medical terms. How to do in and out catheters, how to give Epogen shots and how to give lots of other medications. We took parenting classes for parents who have medical needs and we also took a CPR class. After almost two months in NICU we were finally released to go home. Bringing him home was the best feeling in the world nothing will ever come close to the way I felt that day! We were home for 3 weeks when he was starting to look lethargic and didn't want to do anything. We took him in for his appointment for blood work and his potassium was 10 which is the highest. They said if we didn't bring him in he could have passed away that night.
Having them tell me we almost lost her child absolutely heartbreaking as if we couldn't catch a break. We were back in the hospital for a week when the doctors told us that he would be flown by helicopter Lucile Packard to undergo another surgery. As a mother I was torn into a million pieces, my heart hurts so much for him that all I can do is be strong for him because he is being so strong for us. After that week went by he was flown by helicopter Lucile Packard. As he got there he had been poked so many times before that he had to have a PICC line put in. A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your child's arm, leg , head or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws. The PICC line was put through his scalp, which would make it easier for nurses to draw blood. The next day after his first night Lucile Packard the doctors told us about the surgery he would be having. He told us he would be having the surgery called Pyelostomies this operation would be forming an artificial opening in the renal pelvis of a kidney in order to provide a drainage route for urine alternative to the ureter. What they did was brought the ureters to the outside of his body. At this point he has three holes that drain urine from his kidneys and his bladder. He wears 3 diapers to catch all his urine. Two folded pampers on the side and one big diaper to hold it all in place. We spent about a month at Lucile Packard until we finally got to bring him home.
After we brought him home he has been thriving more than ever. He has prolonged dialysis for three years now, the doctors are thrilled on how well he has been doing. It was a lot of stress for the first 4 months but every day got better and better. The doctors have said that he needs a kidney transplant ever since he was born. He wouldn't need a transplant right away unless he hadrenal failure. He has been on the non active list and active list or a kidney. As September 10th 2016 I started my kidney evaluation process. What this means I am going to see if I can be in my son's donor. I have been going through this process for 8 months now and it is finally coming to an end. As of April 28 2017 I got a call from Stanford to come down to talk to the surgeons about my MRI they think I am a possible donor for my son. I do not know just yet but as the 17th of May I will know for sure if I can or cannot be donor. If I cannot be his donor I will be donating my kidney to somebody in need hopefully I can save someone's life and give family hope and love of being a donor!
My son is going to be 3 years old May 15th 2017. He is the happiest kid and loves running and playing. He's growing and learning just like any other kid. We could have not gone thorough this tough time without all the prayers from strangers families and friends and without the help of the doctors and the good Lord. I want to say never give up and never stop fighting!! Fighting is what makes us stronger, life gives us the unexpected but the unexpected is a blessing. My son and his condition is such a blessing and it might not be the perfect situation but we live everyday making his life as perfect as possible.