Sheila was born November 28, 2016, and was admitted to the NICU at 4 days old after a blood test indicated her direct bilirubin was extremely high. At 2 weeks old, Sheila was diagnosed with Biliary Atresia \u2013 a rare liver disease we had never heard of and could barely spell, pronounce,or use in a sentence. We entered a crash course on liver disease, as it was the diagnosis for our beautiful baby girl.<\/p>\n\n\n\n
At 3 weeks old, Sheila was halfway to complete cirrhosis of the liver and underwent a Kasai procedure using part of her small intestine to form bile ducts to lessen further damage. Her procedure was successful and, although she has had some hospitalizations for portal hypertension and cholangitis infections, Sheila has been able to lead a relatively normal life. She has undergone more tests, scans, bloodwork and doctor\u2019s appointments than most people do in a lifetime and handled it all with a strength and resilience far beyond her years.<\/p>\n\n\n\n
Her Kasai procedure was always a temporary fix. She had an infection in August of 2023 that indicated her native liver was failing. She was evaluated for transplant in October 2023. Her PELD score had increased to a dangerous level, and we knew time was truly running out. It was so terribly difficult to watch our baby girl decline and the only thing we could do was wait, which was torturous. Our prayers were answered on the morning of April 17, 2024. We got the call that a liver had become available. It was truly our prayers being answered but we felt such mixed emotions. Her suffering was about to end yet we couldn\u2019t help but think of the other family and friends who were experiencing unbelievable pain and grief over the loss of our angel donor. We will forever be grateful and hope to one day let that family know in the future.<\/p>\n\n\n\n
The surgery team rolled her into the Operating Room at 1:20pm on April 18th<\/sup>. They worked for 10 plus hours, and we got to see her again at 12:15am the morning of April 19th<\/sup>. The liver transplant was successful, and the phenomenal surgeons were very happy and hopeful with how well the procedure went. <\/p>\n\n\n\n Sheila will now start her recovery journey and life as an organ transplant recipient. The progress she has made in the past 5 days is nothing short of a miracle and we will forever be grateful for this new life Sheila has been blessed with. She will be going back and forth to NYU for weekly check-ups for the next few months and will be on at least 4 anti-rejection medications for the rest of her life but trust me when I say, it is all worth it! Her numbers have never been this good in her lifetime and her pink cheeks are absolutely adorable under her freckles. Through this entire ordeal we have always tried our best to keep a positive spirit, which trust me has been very difficult at times. Sheila\u2019s attitude is what has kept us going. She is such a fighter. On day 3 post-op Sheila was already out of her bed walking the halls, doing PT, drinking on her own,and by day 5 she won the game of Group Bingo and was participating in scavenger hunts. Our baby girl is nothing short of a miracle and we are beyond blessed are we are so ready to watch her grow, thrive and blossom. <\/p>\n\n\n\n As challenging as this journey has been, we are thankful for the prayers and support we have received from friends and family. It is what has gotten us through this nightmare. We have teamed up with The Children\u2019s Organ Transplant Association (COTA) to help us with liver related out of pocket expenses Sheila will incur throughout her life. <\/p>\n\n\n\n COTA is a wonderful organization who helps children and young adults who need or have had a life-saving transplant by providing fundraising assistance and family support. COTA is the nation\u2019s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy or transplant-recipient children and young adults. 100% of each contribution made to COTA in honor of Sheila will help to meet her transplant-related expenses. COTA\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n\n\n\n If you are willing to donate to Sheila\u2019s donation page, we will be eternally grateful. Her website is up and running. Please visit cota.org\/<\/strong>COTAforItsSheilasWorld<\/strong>. <\/p>\n\n\n\n COTA has partnered with many employers and will match your charitable contribution made in Sheila\u2019s name. To find out if your company has a matching gift program, please visit COTA.org.<\/strong><\/p>\n\n\n\n Thank you once again for your love, support and prayers. <\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" Sheila was born November 28, 2016, and was admitted to the NICU at 4 days old after a blood test indicated her direct bilirubin was extremely high. At 2 weeks old, Sheila was diagnosed with Biliary Atresia \u2013 a rare liver disease we had never heard of and could barely spell, pronounce,or use in a sentence. We entered […]<\/p>\n","protected":false},"author":2,"featured_media":60,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\n