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Ben's Story (as told by his Mom, Jen)

Ben's birth story actually starts 6 wks before he was born.

When I was 27wks pregnant I went for an ultrasound. I had several because I am diabetic. Well the tech said go ahead home and the dr will call you later, but I KNEW something was wrong. By the time I got home, the dr's office had already called. DH said to me "there is problem with the baby"-the worst words I ever heard! I got ahold of the dr and was told that the baby had fetal asites (fluid in his abdomen) and that it could be several different things, heart defects, liver defects, downs syndrone, a virus, none of them were good things. I was told to "get some rest" and go to the big city hospital in the morning. I wouldn't accept that and insisted on going that afternoon. A level 2 ultrasound confirmed the asites but still gave no answers so I was admitted to the hospital on continuous fetal monitering (no fun).

I was a complete wreck because I had two kids at home, one of which had never spent the night away from me, and no one could tell me what the h*** was going on! The next morning I met with a ton more dr's and had a ton more tests done. They did blood tests, genetic tests, and an amniocentesis. I was told the only way they would do a "termination" was if they baby's condition was "incompatible with life". I never even considered it, I wanted to keep him alive as long as I could! Everyone was supportive of MY feelings. I was hospitalized for 14 days and had an ultrasound everyday but still no answers. The baby seemed fine (except for the asites) so they sent me home on bedrest. I had to go to the dr's office for a level2 ultra and non-stress test every week. I was told that some of the things that could be wrong with him could be untreatable and thus fatal once he was born. I was also told that it "wasn't at all unusual for babies in this situation to die before th ey could be delivered" but that they were going to do all they could to keep that from happening. Needless to say I was scared to death!

This went on for 3wks at which point my blood pressure started going up and I developed excess amniotic fluid. At 31 weeks I was measuring beyond full term. I also started having contractions, although they wern't doing anything. They drs were wonderful! They really seemed concerned about me and my baby. I felt like we were all a team, working toward the best outcome possible. At 31 1/2 weeks I was rehospitalized with HBP and they thought they would have to deliver the baby that day. Once I was settled though my BP went down so they didn't have to take him. An amnio showed that his lungs still wern't mature so I was given 2 shots of steriod to speed the process. I was sent home on complete bedrest and had to come in to the office 2x a week plus have a visiting nurse come every day and check my BP. When I hit 331/2 wks I began to have trouble feeling the baby move, since I had a dr appoinment that day I figured I might be admitted. Before I even got there I began spotting. At the dr appointment they did part of the ultrasound and the tech excused herself. In comes the dr who tells us to go immediately to the hospital. That was 2:30. Ben was delivered by emergency c-section at 4:52. I had to be put under because the spinal they gave me didn't take. I was soo scared that he would die before I woke up (remember they still didn't know what was causing the asites). When I woke up the first thing Dh said to me was "he is doing great" and he was! They had to vent him because the fluid was making it hard for him to breathe but he weighed 7lb8oz and was otherwise OK. Once they removed the fluid, he was breathing on his own and was off oxygen in a few days.

Ben spent 23 in the NICU because he had jaundice and a hard time learning to tolerate feedings. They still hadn't found out what the problem was but once they took the fluid out it didn't come back so they sent him home with a follow-up in 1m. Before that day come, Ben started having seizures and was re-hospitalized. Turns out his calcium, salt and protien levels were low (low electrolytes can cause seizures). This told his GI dr that he might have a condition called intestinal lymphangiactasia. Furthur testing was done and it turned out that he did have it. Basically it means that he can't absorb conventional fats and has to be on special formula and supplements of calcium and fat-soluble vit. but he is doing great now!