Support Lillian's Fight and Family's Struggle

Story

Hey everyone, We are Chris and Lisa, and this is our daughter Lillian. We are asking that you read our story, then share it on any platform you are able. If you are able to give even a single dollar, we will sincerely appreciate it. We appericate all the thoughts, prayers and whatever support anyone can provide for our little family in this time of need. This has been a humbling experience for us, we have a hard time asking for this kind of help. We are hard working individuals, but as hard working as we are like any parent we will always put our kids first and our pride second. Our daughter is strong, we just wish she didn't need to be quite as strong at such a young age. Our journey has been a long one so we will be making a long and short version, in case people do not want to read a short novel. Thank you from the bottom of our hearts for taking a moment to read our story. To answer a few questions before they are asked: We have both been primarily staying in the hospital with Lillian whenever possible, at least one of us is pretty much always here with her; in the rare times that is not the case we have another family member here. Our son is staying with Chris's parents while we navigate the living in the hospital part of this journey. There will be pictures added into the long version, but not the short. We have reached our max out of pocket for our insurance policy for the year: $8,600. After roughly 7 weeks in the hospital (2 stays) we have spent around $2500-3000 on food between the hospital cafeteria and the restaurants hosted in the connected building (Zoup / Qdoba). (ex: cafeteria salad bar is $8/lb) Last week we were informed we might be able to get help in the form of meal vouchers, those are saving us around $16/day, so that average should be going down if we end up staying here longer. With all the attachments Lillian is going home with and the uncertainty of her condition for at least the first year, there is a high probablilty one of us will have to quit our job or we will have to pay for professional 1 on 1 in home care while we are not there as our insurance will provide a nurse there up to 3 days a week but probably not long enough for us to both work full time. We are still trying to figure out how to make that work financially, but we will see more on that once we make it home. Short version: We found out we were having another baby and then lost our apartment to a fire within a time span of about 4 hours on june 8 2023. We learned a lot about the *Joys* of dealing with insurance. Lillian was born mid-January. Mid-March she was sent to hospital and diagnosed with biliary atresia, had 5-hour Kasai Procedure done (this stay was about 2 weeks in the hospital). Early April, adhesions from surgery caused a bowel blockage leading to 2/3rds of her small intestine having to be removed and an ileostomy bag placed (around 2 weeks in pediatric ICU). 7 days after ileostomy her incision from surgery split back open and they added a wound vac to assist healing process. Lillian gets 1-2 ML per hour of formula via feeding tube through her nose, 1 ounce is about 30 ML. The rest of her nutrition comes via TPN from a Broviac line (IV into the heart). They are currently weening her off all her heavy hitting meds. Throughout this stay at various times she has been on fentanyl, morphine, methadone, Ativan, and Clonidine. She had some withdrawal symptoms while weening off these drugs. Long version: On June 8th, 2023, at around 7-8pm we found out Lisa was pregnant with our second child, around 11:30 pm that night another unit in our apartment building caught fire leading to the entire 3rd floor of the building being destroyed. This left us with no home and we had lost most of our possessions due to water / smoke damage. We moved into a new apartment at the very end of July, then started working on the struggle with getting insurance to co-operate with us so we could replace some of what we lost. We were unfortunately about $12,000 under insured. Lisa's pregnancy was hard on her in numerous ways, including needing iron transfusions and having covid near the end of December. Lillian was born mid-January; everything went well but she got here a week before her planned C-section was scheduled. About a week later a minor trip to ER resulted in blood labs and being told everything looked good. I asked about her color as she was a bit jaundiced, they said her bilirubin numbers looked ok. At her 2 months checkup we inquired about her looking more jaundiced than she normally had been and were sent to get blood labs done again. The next morning her primary care provider called us and told us we would be contacted by the children's hospital when a room was ready for her, and we needed to take her there. Within 30 min of us getting to the room they were already starting to do an ultrasound, followed shortly by x-rays, a cardiogram and a lot of blood labs. 4 days later they were doing a surgical procedure to test for a condition called biliary atresia. The test was positive and they immediately went into surgery to attempt to fix the issue. After a total of 5 hours of surgery between the test and the Kasai Procedure. Just over a week of recovery and she was doing well, so we were sent home. This stay was about 2 weeks in total. Biliary atresia is a rare condition in infants where the bile does not properly drain from your liver due to the ducts being damaged. This causes the bile to build up and damage the liver. The cause of this condition is unknown. After being home for 5 days she started to refuse her bottle, vomiting often and was unconsolable. Another trip to the ER with a lot more tests; x-rays, ultrasounds, CT scan, tons more blood labs. She was bloating badly and would not eat and got to the point where morphine did not even calm her. She was given a neo picc line for nutrition and was then put on sedation and transferred to pediatric ICU. At this point they decided we had no other choice and they were going to have to go back in surgically and see if something was wrong. They had tried to avoid this because there had not been much time to heal since the first surgery. Once surgery was underway they found an adhesion that had slowly pinched off her small intestine as it formed. This had caused quite a bit of damage to her intestines, but they were not sure how much exactly. She was “left open” and had a silo as she was given a bit of time for inflammation to go down and hopefully give her bowels time to bounce back a bit. Unfortunately, not as much bounced back as they had hoped. They ended up having to remove around 2/3rds of her small intestine and gave her an ileostomy bag that will hopefully be temporary. 7 days after the ileostomy bag was placed, her incision started to split open badly so they added a wound vac to help with the healing process. Somewhere during our roughly 2 weeks in pediatric ICU, one of Lillian’s GI doctors came and informed us that even without Lillian’s extra complications biliary atresia can be a very long and bumpy road. They expect we will be in and out of the ER enough in the next 6-12 months that most of the staff will know her very well before we are done. We had known this wasn't going to be a walk in the park but were not aware of how rough it could be. As of right now we have been out of pediatric ICU for about 2 weeks. They have been mostly working on weening her off all the heavier drugs that she has been on throughout her time here. Some of these include fentanyl, morphine, methadone, Ativan, and Clonidine. She has shown quite a few withdrawal symptoms while weening off these drugs over the past 2 weeks and it is very hard to watch knowing that you can't really do anything. The hospital has morphine available to help if needed, but given that it's an opioid it could just extend the weening process. After this incredibly long journey over the last year, we are asking for financial assistance to help provide care for Lillian and help cover some of the other expenses that have came up throughout this journey.