RILYNN ROSE PAYNE
Rilynn Rose Payne was born January 9, 2017. She was diagnosed with Recessive Polycystic Kidney Disease (ARPKD) while our daughter, Emily, was pregnant with her. The news was very grim and disappointing every time she went to the doctor. There were many ultrasounds throughout the pregnancy, and at every appointment we hoped and prayed that a miracle had happened and that the ultrasound would show a miracle, but it did not happen that way. But as we walked through the darkest moments of this journey we saw many, many miracles of God's healing power and He directed every step of this journey
ARPKD is a rare genetic disease that causes cysts to grow on the kidneys, and in Rilynn's case, caused them to triple in size. Rilynn had almost no function in her kidneys during pregnancy leading to no amniotic fluid. Amniotic fluid is crucial to the development of the lungs leaving Rilynn with not only undeveloped lungs, but a lack of space for them to expand due to her enlarged kidneys. At just 4 days old, Rilynn went to the operating room for the first time to remove both kidneys. After two terrifying attempts they were successfully removed, a catheter was placed to begin dialysis. and her lungs began to strengthen. She spent 95 days at the University of Michigan where we had many struggles along the way. Four different times we were told she would not survive, but God had her in the palm of His hand and carved the way for her to be home today.
For myself, (Heidi, Rilynn Rose's grandma and Emily's mom) being in the healing ministry this journey has rocked my world, changed some theology and mindsets, but most of all has solidified who my God is and how important it is to have a strong foundation, know what the Word of God says, and to have your prayer warriors encamped around you. Some battles in healing you have to fight, and fight hard! We were up many nights around the clock with friends and family fighting for little Rilynn's life. The doctors were amazed at her progress and continue to be amazed!
She is currently on dialysis 12 hours a day, 10 different medications and several doctors' appointments until she reaches the weight goals to start the process of finding a donor for a kidney transplant. We strive to enlighten others about children who fight to live this life with end stage kidney disease and bring awareness to the gift of organ donation.
July 16, 2017 - Rilynn continues to do very well! She just turned 6 months, and just rolled over by herself. On August 11, she will have a small surgery to put in a G tube in her stomach for eating, which will eliminate the NG tube that goes into her nose. This will be a huge thing for both Emily and Rilynn - Emily will not have to insert the tube any longer, and Rilynn will no longer be able to pull it out! She will continue to need a feeding tube because of the amount of water/formula that she must consume in a 24 hour period. She is the best baby, so content and happy, and sleeps through the night.
September 27, 2017 - The August 11th surgery to put in a G tube, a very routine and supposedly "simple" surgery, turned out to be not so simple. She ended up spending another 3 weeks in the hospital. All is "back to normal" (whatever that is), and she continues to grow and is always giving smiles! Emily and Zack will soon be seeing the transplant team to walk them through this part of the adventure. Thanks for everyone's continued support!
Dec 21, 2017 - Emily and Zack just got a call from the Transplant team that insurance was approved for Rilynn’s transplant!! We are scheduled for her evaluation January 23rd! The evaluation is basically making sure she is healthy enough to undergo a transplant and test blood type, tissue type, and crossmatching so we can then begin the process of find a donor. The evaluation includes lots of testing and then we will meet the entire team who is involved, (social worker, dietician, surgeon, nephrologist) ask a billion questions, and get this journey started!! 💚♻️
Photo featuring lamby getting his blood pressure 😉 We will be excited to not be tangled up in cords every morning once transplanted!!!
January 9, 2018 - Wow! A year has passed and Rilynn is one years old today. And ready to start the transplant process. They meet with the transplant team for the first time on Jan 23 for testing and consultation. Her birthday party was just with a few immediate family members. She just couldn't understand why we wanted to shove this cake in her face....lol. She doesn't eat much orally, so it took awhile for her to take a bite, but she finally did. Happy Birthday Miracle Girl!!!
April 20, 2018 - It's been awhile since I've updated. Things have been crazy with fundraising since January. We are now at $41,000.00 out of our $50,000.00 goal. We have been so blessed by so many with their financial support. Rilynn is just amazing. We are told over and over by the doctors how amazing she is doing. They can't believe that she isn't on more medication than she is; not normal for a dialysis patient they say. Our God continues to amaze us every step of the way. She is currently in a cast from the waist down to fix her dislocated hip that she was born with. To us, the cast is just a horrible position to be in for 12 weeks, but not Rilynn. It doesn't seem to bother her at all. Her Paps built her a Spica chair so she can sit up. Her movements and positions are very limited with her cast. We now have 5 matched donors (yay), and the doctors have just this week chosen one out of the five that they feel is the best match and she will be going to all day evaluation/testing next month. We are beyond excited, especially that this person is a great friend....just a wonderful person to give so selfishly!! We love her! Below is a picture after a trip to Mott's where good news was given (as usual) on all her lab work.... she only needs 2 shots a week for her red blood cells instead of the 3 a week her mom has to give her. Isn't she just beautiful!
June 6, 2018: this was a BIG day for the whole family. Rilynn's spica cast was removed!! These last 12 weeks have been very difficult dealing with the cast. Of course Rilynn seemed to do very well with it, but for the rest of us it was no fun whatsoever. She was so limited in her positions in which she could function. And holding her was such a difficult task. Here she is showing off her legs.