Lily Rayne's Medical & Care Expenses

10-28-2020: At one month old, Lily has spent almost 2/3's of her life in the hospital. I know things could be worse and I know others have had it worse than her. But I miss her, want to hold her, still haven't kissed her, want my son & daughter-in-law home. Today, they are trying another, the 3rd, medication to control her SVT. I pray it works and she can come home this week. Again, I thank you for all the support you have provided. Oh, I put a few new pics of her 10-24-2020: one step forward, 2 steps back. Lily went into SVT 7 fines last night. They have increased her meds again. Ice is no longer working to bring her heart rate down. Please pray for her, she is so strong but just needs the right dose or mix of medication. I was really hoping she’d be coming home next week. My daughter in law has been in the hospital with her for almost 2 weeks now and my son going back and forth after work. They all need some good news and positive vibes sent their way. 10-22-20 update: Lily is still in Chicago Lurie’s Children’s and they are monitoring her and just started her on another medication. She is still having SVT episodes but they have decreased a bit so we are hoping the medication dosage and mix will ultimately get her heart stable and stop the episodes. Thank you for your support! We appreciate everything - the prayers, the shares and the donations! My Granddaughter, Lily Rayne, was just recently diagnosed with Wolff-Párkinson White Syndrome and has been in NICU since last Tuesday and just got transferred downtown Chicago to a Children’s Hospital there where they have the specialists there that can hopefully figure out what she needs to get her heart to stop going into SVT. If you can spare a few dollars to help offset the costs for her care, please donate, if not, can you please share it. Anything is greatly appreciated and will go to my son, Lucas and daughter-in-law, Kylie to pay for medical care that isn’t covered by insurance. https://gf.me/u/y5jkd8 After a very normal and healthy pregnancy, my 1st Granddaughter, Lily Rayne,  was born via Emergency C-Section due to her heart rate being over 270 in the womb.  She was given 4 doses of medication to bring her heart rate down to normal after birth.  She was then transferred to the NICU of  a nearby children's hospital where she underwent cardiac testing and was monitored for 3 days and then released with a heart monitor.  My son and daughter in law followed up with the cardiologist where he said her heart looked normal and healthy.  

At 2 weeks of age, her heart rate spiked again and was taken to the Emergency Department.  She was given another 2 doses of medication to bring her heart rate down and was again transferred to the NICU of the same children's hospital.  She was diagnosed there with Wolff-Parkinson White Syndrome.  Some are lucky and don't experience any symptoms.  Unfortunately for Lily, this hasn't been the case.  Her heart goes into SVT at least 4 times a day and has to be given more medication.  It has now been one week in the NICU and after careful consideration, she was just transferred downtown Chicago to another children's hospital.  We are hoping the team of specialists who will be treating her will find the right medication dose soon! We all miss her and want her home and healthy.  

Lucas & Kylie have been together since their freshman year of high school and just celebrated their one year anniversary in September and Lily's birth a couple weeks later.  They worked, planned & saved for this baby.  My son, Lucas, is a Custom Wood Working Apprentice for Bull Valley Hardwood in Woodstock.  He is learning to build custom tables, islands & more.  Kylie is co-owner of The Haven Suite in Algonquin where she does Balayage, Foilayage & more.  

The uncertainty of treatment has definitely been stressful for them.  Only if you have a few bucks to spare, I am asking for a donation to help offset the costs associated with the treatment of Lily Rayne.  And if you don't, please share it.  

Thank you for taking the time to read this.  Also, if you are expecting a baby, Owlet Smart Sock & App were an actual lifesaver for my granddaughter! It was the only reason Lucas & Kylie knew Lily's heart rate was 280!