Melody received the gift of life, a deceased donor kidney, on December 24, 2017.
Support this family financially as Melody continue to recover from her surgery
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I am writing this on behalf of my 2 1/2 year old daughter, Melody. Melody is my only child, and I had a healthy pregnancy, or so I thought. When they would give me ultrasounds they could never fully see my daughter, they said I needed to drink more water. So we never thought anything of it. On June 18th 2014 I gave birth to a 6lb 0oz tiny baby girl. Born with some jaundice, but that was the only thing that was slightly wrong. For two days, my life was normal, just two days. On her 3 day check up, the ambulance was called and we were taken to Valley Children's Emergency Department because her doctor heard a very loud heart murmur and it scared her. Upon arriving, we were seen by the cardiologist on call who later said it wasn't as serious as the former doctor thought. That was the biggest scare for me to see my baby girl hooked up to wires and machines, I had thought at that moment it was over, little did I know, it was only the beginning. A week after birth, I started seeing swelling in her feet and face. Being concerned I took her back to Kaiser where they pricked and poked her for blood tests for days at a time. Eventually we were referred back to Valley Children's hospital, where more tests were taken. My daughter had undergone more tests in the first two weeks of birth than I ever had in my 20 years of life. Finally, it happened. When my daughter was 3 weeks old, Nephrologists sat me down, to break my heart. My daughter had been born with Chronic Kidney Disease. She was brown with Congenital Nephritic Syndrome, which resulted in both kidneys being defected. Her disease is when her kidneys cannot hold onto the protein in her body, causing it to be released through the urine. My heart broke and I broke down. My life changed in the blink of an eye.
They told me that by the time she was 6 months, they wanted to take both kidneys out, start dialysis and do her transplant at a year old, if she reached the desired weight. Right away within days, my daughter was taken to surgery where they placed a central line in her chest. She was placed on countless medication, had to be taken off breastfeeding and put on a special formula and hospitalized for almost two weeks. Initially, I was told we were going to be there for months, but by the Grace of God, my daughter's body responded so amazingly well to her medications and new restrictions that we got to go home to start our new journey.
I instantly became a mommy nurse and did what I had to do. For 3 months every single day we were at the hospital for 6 hour infusions of Albumin and Lasix. Adjusting to our new lifestyle wasn't easy, but to keep my daughter fighting I did what I had to do. At 6 months, my daughter shocked doctors. Not only still responding good to her medications, we got to go from everyday to every other day infusions. It might not seem like a big jump but to me it was HUGE! When she was 7 months I again, got another shock to my world. My daughter's "heart murmur" turned out to be false because of what she has causes a false hearing, but while doing testing on her heart she was diagnosed with something called Pulmonary Valve Stenosis. This is when a valve in the heart is "sticky" and doesn't fully open for the blood to flow through. A couple days after, they performed a procedure on her where they go in with a balloon, blow it up and it opens the valve. Remove it and hope and pray it works cause if it hadn't she would have to have open heart surgery. Thanks to God, it worked, and that was one less thing I had to worry about.
Still 7 months old, we were finally called for our first pre-transplant appointment at Lucile Packard Children's Hospital in Stanford California. It lasted hours, we met with countless social workers, nurses, doctors, and surgeons. Finally they all came in together and I was waiting for the bad news. To my surprise, I got amazing good news! They told me my child was doing amazing for what she has and I had been doing a great job with her. They then told me she was one of 3 cases in California to be doing so well with the CNS disease. I cried tears of joy. I was informed that removal of her kidneys would be put on hold until she was in absolute renal failure and couldn't go on any longer. It was the best news I had gotten in a very long time. When we returned back home, it got even better! Her appointments had now gone from 6 hours every other day, to 4 hours every other day! Not only that, but being that my daughter had a central line in her chest, she was not able to take a normal bath and had to still be sponge bathed and her whole body could not be put into the water. She was now big enough for a Mediport. So again for the 3rd time in 7 months my baby was taken to surgery. They removed her line and put in a port. It was the best feeling ever to be able to SEE my daughter's chest for the first time since she was born without anything sticking out of it. And for the first time since she was 3 weeks old my daughter chest was able to have water poured on it. Things were finally looking up.
The months passed and my daughter finally hit a year old. Her transplant team came to us this time in Fresno, California and evaluated her once again. To our surprise she was still doing amazing! And removal was again pushed back to 1 1/2 years old! When she turned 1 her appointments got separated to twice a week for 4 hours on each day, it was such a relief. Day in and day out she fought, we eventually got to go to ONCE every other week 4 hour infusions!!! The biggest break through my daughter had made.
Again doctors pushed her transplant back when we met at 1 1/2 and 2 years old. which brings us to today. My daughter is now 2 1/2 years old. A couple months ago we had some setbacks with swelling increasing and she's back to once a week 4 hour infusions which is still amazing. But recently they sat me down to tell me the time has come. My baby is now only functioning at 40% and is 10 percent away from being in total renal failure. She has fought so so hard to get to this point, but unfortunately nothing can be reversed.
June 12th we have the biggest appointment of her little life to speak about removing her kidneys and starting what will be another new journey.
Sadly, I have a heart condition and cannot donate my kidney to my daughter, which hurts even more that I cannot help her. I wish to share my story with the world and kidney disease foundation community. To let them know to never give up hope, because God is good, he answers prayers and to never ever give up.
Please support this family as they moves toward a very big journey for little Melody.
Location: Sanger, CA