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NICU/Preemie Mamas

My babies story (venting I guess and looking of anyone has been through similar)

I’m a first time mom to a baby girl. When I was pregnant they found out my baby has a mass on what they thought was her kidney. I was closely monitored and i gave birth to her at 36 weeks where they found out the mass was on her liver and she had to be flown to a different hospital since I just gave birth only my husband could go. The drive to meet them at the other hospital was probably one of the worst moments of my life. I just had her and we were already separated. After arriving at the nicu she got an mri and that tumor took up almost her whole abdomen it caused her intestines to be pushed aside and her kidneys to fuse together. It was clear that she needed surgery and the surgeon was convinced that it was cancer. Waiting for her to get out of surgery was so scary and seeing my baby intubated was so painful. During the surgery they removed her gallbladder and appendix as well. After about 14 days in the nicu we were sent home. The tumor was also completely benign. She acted like a normal baby but then started to rapidly lose weight. She lost a pound in less than a month. We ended up back at the hospital. They tried fortifying my breast milk nothing was working she was gaining very little. They ended up putting in an ng tube. We were there for 3 weeks before she started gaining consistently it was still very little but better. She is now 4 months and still weighed every week to keep an eye on her weight gain. She has really good weeks and not so good weeks. She throws up a lot some days too. She is still below the 1 percentile. Her liver labs are finally looking better so I thank God for that. Now they are talking about putting in a g tube. I guess I’m just seeing if anybody has been through similar?