Our story...

Children and adults with cleft lip and/or palate issues

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Our story...

Postby Jacobsmommy » Tue May 15, 2007 5:07 pm

When I was 5 months pregnant I found out that I was having a boy, and he had bilateral cleft lip and palate. I was 19 I had never heard of it, I read up on it and ordered pigeon bottles, there went my plans on breast feeding. My son Jacob Austin was born on January 31st 2006 8 lbs and 1 oz. He also had an extra finger and toe on his left hand and foot. He swallowed maconium, had bacterial meningitis and a touch of pneumonia. I was told my son was going to be fed in the nursery, two hours later I found my son in the nicu at duke university hospital. No one told me. I had to leave without him, the worst thing I had ever had to do. I came to see him every day, all day. I have yet to mention I am a single mother, and I was told I could not take my son to my moms house b/c she had kerosene heat. They told me they would take him first. But on Feb.14, 2006 I got to bring my son home. (to his dad and new g/f's house) I had to learn how to put in a feeding tube because it was the only way I could bring him home. He was not comfortable with the bottle. He wasn't gaining weight, and the doctor said keep his tube in. If he didn't gain weight, he would be monitored in the hospital. I knew my son needed to get more familiar with the bottle, that he was being lazy because he knew he would get full from the feeding tube, so I didn't listen. My son gained enough weight to have surgery and never needed that tube again. On March 31, 2006 My son went in to have his lip repaired, and his extra digits removed and he was circumcised, they did a great job. In July I got my own apartment, my son kept ear infections since birth, his hearing had decreased. He went to daycare during this time, but stayed sick around the kids, so he never went back after November when he had a 2nd surgery. He had his lip re-done, palate repaired, and tubes put in his ears. He finally started to eat real food! I was so excited to learn what he liked. May 1st, 2007 my son had a clot of blood in his ear, so his tubes were replaced. as far as I can tell so far he is hearing fine! My problem now is getting him off the bottle. He has a tiny hole in his palate that I wont know if they will fix until September, and it looks like he hurts when he swallows. I applied for disability a year ago, got denied, then appealed and now I'm waiting to hear from them. They have yet to make a decision because something is continuously coming up. I love my son so much!
Last edited by Jacobsmommy on Fri May 18, 2007 1:17 am, edited 1 time in total.
Britany & Jacob bcl&p
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Postby Hilla » Wed May 16, 2007 1:00 pm

Thank you for sharing. I can not believe that you were only 19 years old. I was 27 years old when Hilla (UCLP) was born and I don´t think I was as mature as you were. I just cried for months....Now I am feeling already much better.


-Laura and Hilla
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