Ben's birth story is very long! Mommy had an ultrasound at 27 weeks into the pregnancy because of the problems she had with her other babies. On the ultrasound they found that Benjamin had something called fetal asites, which is fluid build up in his abdomen. The doctors told Mommy and Daddy that it could be alot of different things causing it and that Mommy would have to go to the hospital for tests.
At the hospital Ben was watched very carefully and many tests were done on Mommy. After 2 weeks no one could figure out what was wrong but Ben seemed to be doing OK so Mommy got to go home, but was put on bedrest. The doctors told Mommy and Daddy that Ben might not live to be born and that if he did he might die soon after. They couldn't really say because they couldn't find what was causing the fluid. Everyone was scared for baby Ben! Mommy had to go to the doctors office every week for an ultrasound and Non-stress test to check on Ben. Everything was going pretty well until Mommy was 30 weeks pregnant.
At her doctor's visit that week, Mommy's blood pressure was high (gee, I wonder why!) so the doctor put her back in the hospital. They told Mommy and Daddy that Ben might have to be born that day to protect Mommy's health, but her BP went down and he got to stay in a while longer. Mommy went home after 4 days and a couple of steroid shots for Ben's lungs but was now going to the doctor's office 2 times a week. When she was 33 weeks, Mommy couldn't feel Ben moving much so she went into the doctor's office. They did and ultrasound and told her that Ben would have to be born right away. Although Mommy was doing fine (BP wise anyway!) the fluid had started to affect his health and he was better off outside where the dr's could treat him. Mommy and Daddy drove to the hospital where Benjamin Leo was born by emergency c-section. Mommy had to be put under because the spinal didn't work and was very afraid that Ben would die before she would be able to meet him. Daddy says he was crying when they delivered him and Mommy got to meet him when she woke up. He was 7lb 8oz and was 19 inches long.
Ben had to spend 23 days in the NICU having tests done and learning how to eat. He had to be on a ventilator for about 6 hours because all the fluid in his belly made it hard for him to breathe. Once the doctors removed the fluid, he could breathe on his own! They still couldn't find out what his problem was but he seemed to do OK so he was sent home. We were all so happy that he was coming home! Mommy and Daddy were to bring him back to the doctor in a month. Mommy said she always had a feeing that something was still wrong. Turns out she was right because before that could happen, Ben started having seizures and was re-hospitalized. It was very scary! The doctors discovered that Ben's calcium and protien levels were low. The fluid in his belly was back too. Those facts (and the results of about a million blood tests and a stool test) told the dr's that he had intestinal lymphangiactasia. This is a condition which causes him to be unable to absorb fat through his intestine. He can only absorb medium chain triglycerides which bypass the intestine (breastmilk and most formula have only long chain triglycerides). Although Ben was eating a good amount, he was starving to death. His calcium and protien levels were low because they bind with fat, as do some vitamins and minerals. The breastmilk Ben had been receiving was not good for him as he couldn't get what he needed from it. He was placed on special formula called Portagen that had MCT's, along with enzymes and vitamin & mineral supplements. He recovered quickly and is doing great now! What a little trooper our baby Ben is!
UPDATE!! In October Ben's GI doctor decided he could attempt a trial of "regular" formula! He feels that Ben's intestine has healed. As of November 3rd he is tolerating it with out problems. Yahoo! A repeat fecal fat test will be done on Noveember 15th to determine if he now has normal absorbtion.
NEW UPDATE! Ben had his fecal fat test done early (Nov. 9th) and passed with flying colors! He is still taking his calcium and vitamins just in case but it looks like his lymphangiactasia has healed and he has normal absorbtion!! What a year we have all had! We have truly come full circle : )
ANOTHER UPDATE! Ben was re-diagnosed with IL at 5 years old. During an emergency surgery operation for hernias fluid was discovered in his abdomen. After many tests they decided the IL has come back :( Ben is now on a low fat/high protien diet and takes vitamins and MCT oil 3 times a day. Luckily, he appears to have responded to therapy and is growing like crazy!
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