On Monday (October 27th) my sweet Ant had an appointment with his GI specialist. The appointment was to go over the labs that were drawn the previous week, to re-check his bilirubin levels, to get a few genetic labs, and for a weight check. Ant had gained six ounces within the week, but Dr. Fortgang was not impressed with this. She said he should have gained more weight by now and even though he wasn’t losing weight it was still alarming. His bilirubin level was 1.9 (the previous week it was 1.6 and the week before, 1.3) which showed her that something was definitely wrong with his liver. Dr. Fortgang said that she would have his bili level checked again and if it wasn’t better she wanted to re-admit him. So, his blood was drawn and we went home to wait. That evening we received a phone call from his nurse who told us that his bilirubin was a 1.8. We could either bring him into the hospital and admit him in order to get everything done as quickly as possible, or we could schedule appointments over the next couple weeks. We opted to admit him.
Ant was admitted to the Tulane Hospital for Children for failure to thrive and high bilirubin levels. I was so happy to find out that the doctor looking after him was the same doctor who looked after him in the NICU. It was awesome news because she already knew him well and because she is a really awesome person! She told me that they would be keeping track of his eating and his wet diapers and bowel movements and told me he’d have a weight check every day. Labs were ordered to test him for a variety of liver disorders and genetic disorders, including a jaundice screening to be sent to a specialized lab in Cincinnati. The doctor also said that he’d be having an ultrasound and a liver biopsy. She also said she would get in touch with the genetics department to make sure they could see us while Ant was in the hospital.
Yesterday mostly consisted of getting in touch with all the necessary parties, ordering all necessary labs and procedures and making a feeding plan that would be best for Ant to thrive. Prior to this admit I had been feeding Ant pregestimil at every other feeding (Dr. Fortgang put him on pregestimil when she was concerned about him having galactosemia, and then wanted me to continue to give it to him because she thought he wasn’t getting enough calories from my breast milk alone) and then breastfeeding him/giving him expressed breast milk in a bottle the rest of the time. I was so happy when his doctor, Dr. Cufurovic, said I could exclusively breast feed him now. Ant weighed in yesterday at 8lbs 5oz, which is above his birth weight but isn’t where they would like him to be.
Today we met with the occupational therapist who checked to make sure his suck/swallow/breathe reflex was functioning well, which it was. Ant’s doctor and I decided that I would give him a bottle of expressed breast milk and then let him nurse on my breast for only ten minutes (as apposed to letting him nurse then supplementing with a bottle of expressed breast milk) so that we made sure he is getting the ounces he needs from the bottle, the soothing he needs from nursing and all without him burning too many calories. Dr. Cufurovic also contacted anesthesiology and set up his biopsy for 9AM tomorrow morning. This afternoon the nurses attempted to get blood from him for the labs and genetic testing, but failed after 8 attempts and bursting 5 veins. It was so heart breaking to watch them poke and prod him while he screamed and stopped breathing at times. There were a couple moments when I nearly fainted, but was able to keep my cool and soothe my son. Ant weighed in today at 8lbs 4.9oz. So, he hasn’t gained weight but he also hasn’t lost a significant amount.
Ant has been eating a lot more, has been less lazy about eating and seems to have more of an appetite now that he is no longer on the pregestimil. I’m hoping that tomorrow he will eat even more and will have gained a significant amount of weight. I am very nervous and anxious about his liver biopsy. I hope the anesthesia goes well. There is a chance, since he has had lung problems, that he will have difficulty breathing when he wakes up and that he will need to be on a ventilator for a few hours, but the anesthesiologist isn’t expecting that to happen. The biopsy will check for biliary atresia (a structural problem of the bile ducts which can be life threatening if not caught early enough and which requires surgery), it will test to see how much alpha-1 antitrypsin his body is making (he has a heterozygous deformity of that gene) and a variety of other liver disorders. Tomorrow he will also have blood drawn while he is under anesthesia and hopefully they will get all the blood they need for the labs and genetics test. Hopefully we will also see the geneticist tomorrow and have a plan for the necessary tests.
My baby seems to be a mystery to the doctors here at Tulane. Although they seem to be doing everything they can, Ant’s father and I would like for him to see doctors who have a little more experience with newborns who have liver problems, especially if surgery is necessary. So, if we don’t have answers by the end of the day tomorrow I will be flying with Ant to Boston Children’s Hospital while his dad puts our things into storage and drives up to Boston in our car. I hope it doesn’t come to that. I hope they figure out what is wrong, that it isn’t life threatening and that he can be treated right away and that whatever is wrong won’t effect him in the future. But, we need to prepare for the alternative.
If you would like to donate to help Baby Ant get the care he needs, we started a GoFundMe account for him. You can find it here at GoFundMe.com. Thank you all!