At 20 weeks pregnant we found out that our sweet baby girl had Bilateral Multicystic Kidney Disease and would most likely not live past birth. We were heartbroken and spent the next few months grieving the precious life we thought we would loose all while begging the Lord to give her life. We traveled to multiple doctor's appointments every week in Charolettsville and at 36 weeks we made the decision to deliver at UVA after her health continued to decline.
August 31, 2021 Magnolia Hope was born screaming and fighting. She weighed 3lbs 15oz. Every bit of her was perfect. She was immediately intubated and whisked away to the NICU. She was to small to start dialysis. At about 24 hours old one of her nephrologist's met with us. She was concerned that if Magnolia did not produce urine she would most likely not survive. At the exact time that conversation was taking place, Magnolia was one floor below us laying in her tiny NICU bed, intubated, making urine for the first time. We spent many weeks managing Magnolia's electrolytes and teaching her to eat. After 5 long and hard weeks in the NICU Magnolia came home and was able to meet her 5 other siblings for the first time.
We had a blissful 2 weeks at home and at 7 weeks old she returned to the hospital to have a PD catheter placed in preparation for dialysis after her potassium reached dangerous levels and could no longer be managed through medication. Every single night Magnolia did 8-10 hours of dialysis at home. As she grew she began to struggle with eating and after a short time with an ng tube she had surgery to place a gtube at 8 months old. This was a very difficult surgery for Magnolia and shortly after that surgery Magnolia began to struggle with vomitting and dehydration.Then, her PD catheter began to fail and after many attempts to save her catheter through surgical revisions, TPA, and ultimately removing the original catheter and replacing it with a new one, Magnolia had a Hemodialysis line placed. We currently travel 2 days a week to do dialysis in the PICU at UVA.
Shortly after starting Hemodialysis Magnolia had surgery again to remove her old PD catheter that was no longer functioning. Hemodialysis carries many risks for a child Magnolia's size and is not the preferred method of dialysis. Because of this, Magnolia has struggled with frequent, sometimes dangerous, drops in blood pressure while doing treatment as well as low hemaglobin. Everytime Magnolia does dialysis she is loosing blood and has required frequent blood transfusions.
Magnolia needs a life saving kidney transplant. She is currently going through transplant evaluation and we are hoping to find a live donor soon.
Magnolia's life has been hard and full of greif, trauma, and joy. She has had over 15 hospital admissions in just the past 6 months. She has undergone 6 surgeries. Most of her summer was spent in the hospital. Because Magnolia is in end-stage renal failure she has no appetite and is almost completely dependent upon a feeding tube. She struggles with frequent vomitting and nausea. Her bones and body are weak. Yet, she almost always has a smile on her face. She has a better attitude than any of us. She has the sweetest blue eyes, the most beautiful hair, and loves to dance. The Lord has performed miracle after miracle in her short life. We know that the Lord has a plan far bigger than we can imagine for Magnolia's life and every detail of her life has been orchestrated by Him.
We have set up a go fund me account to help with expenses related to Magnolia's care along with transplant and donor expenses. When Magnolia is transplanted we will be required to spend a period of time in Charolettsville after discharge from the hospital. Currently, my husband (Tyler) is going through the live donor process in hopes of being able to donate his kidney to Magnolia. If a match, Tyler will be out of work for 10-12 weeks.