Everyone who knows me I am very private and don’t like to ask for help on matters like this but I decided to put that aside. Our family needs every support on the upcoming weeks, months, and years. Our son Noah was born April 2nd @ 8:00 p.m. 6 lbs Emergency C-Section was performed at that time.
After a few days of being home we notice he was jaundice. We went to the doctor and did blood work his total and direct bilirubin was not normal. They tried phototherapy meds nothing seem to be bringing the bilirubin down.
On April 17th he got admitted to the hospital with severe jaundice. They did 4 HIDA Scan, MRI, CMV testing, & Genetic testing nothing had seem to be found then. We were at Kaiser for 10 days. We were discharged after.
His bilirubin numbers were increasing tremendously which could of cause seizures, brain damage, or even death. Liver biopsy was done that day.
With this pandemic only 1 parent can be present. Doctors decided to do an operative cholangiogram to see if it was biliary artesia. We were all praying it wasn’t but with doing this procedure they saw it was and he got the kasai procedure done along with intestinal rotation and took his appendix out to prevent any other future problems he can get. 14 days in the hospital
Everything was fine I took Noah for his 2month wellness baby. The following morning he had a fever of 101.5 F I thought it was fever from shots since some babies have fever after shots. Around 9am June 24 I noticed his scrotum was severely swollen I called the nurse and she told me to bring him in. It was a sleepless night for dad & I. We brought him did an ultrasound and X-ray. The surgeon. Team decided to admit him. His fever had jumped up to 102.4 and heart rate the highest was at 211. His abdominal started to swell up as well. After the kasai procedure they had warned me that he’s immune to getting cholangitis. Sure enough it was cholangitis. He was in icu for 5 days and now is in recovery his liver is severely swollen and has had a picc line inserted. Not sure when we will get discharged but his bilirubin is rising again. GI doctor highly recommended to start the process and put him in the liver transplant.
During all these hospital stay Noah has had to get tested for covid 19 all test came negative. One parent at a time. No parent should see their child go through this. How have we been surving this? Not sure how my husband has been handling this since he copes with things differently. As for me Noah has taught me so much in a short amount of time he’s been here. At some point I almost lost faith but he gave me strength to keep praying and never lose faith. He’s one strong fighter! We are praying and hoping for the best! The waiting game begins for a liver transplant. With medical bills we have received will continue to receive in the near future and us having to miss work we are asking for your help.
All donations are gratefully appreciated. Every bit counts and if you guys can’t donate please share and pray for Noah and our family. Thank you & love you all!
- Cassandra Miramontes
- Isabel Moreno