posted 7th Apr '09
Oh wow, I didn't know we have a special needs forum!
Just in time too!
My name is Dani and my daughter is EmmaLynne. Em, Emma, Emmy or Bear for short. I found out I was pregnant when I was 18 after a severe drug overdose. I'd had no clue because the only symptom I had in the beginning was severe constipation which I chalked up to not eating a healthy diet. Anyways, I was told that the pregnancy probably wouldn't advance much further than the 20th week and not to get attached. At least they were honest with me about my chances of having a miscarriage.
I worried my entire pregnancy that something would be wrong with my little one because of my drug use. I beat myself up every day for succumbing to my addiction during the entire first trimester. Of course I had no clue, but I still felt so guilty that I had been hurting my little bean for so long. I had nightmares that she suffered the same pains I did of withdrawal. I obsessed over kick counts when they grew stronger. I tried to eat right despite my situation (I was incarcerated from 12 weeks to 30 weeks) and just wished the days by until my court date. I was desperate for an Ultrasound to know that all was well with my baby.
On February 2, 2007 my public defender came to visit me. She told me she could get me on the add-on docket for February 5. I had to take a plea deal though. 1 year in the county jail, 1 year and 1 day in state prison, or 2 years probation. No credit for time served. I would definitely be in past my due date. I wanted to keep the baby so I opted for 2 years probation. I plead out on the fifth at 9:37 am and was released from the Jail facility at 5:00 pm on the dot. I was excited, and my first order of business was getting a ride home. I called my friend who later became my SO and he had his brother come pick me up. We chilled that night, he took me out for a wonderful dinner at a very nice restaurant and then he asked me what I was going to do. I told him I needed to get a doctor.
Getting a doctor at 8 months pregnant wasn't easy, nobody wanted to take me. Desperate to at least know that my daughter was alright, I decided to hit the ER. I went to the closest one to me, but it didn't have an L&D department. They confirmed my pregnancy (procedure), verified my insurance, and called in an Ultrasound tech. I went to Ultrasound and finally got to see my baby. The tech told me "She's looking perfect! Right on track for her due date!" I was elated. My baby girl was in tip-top shape.
I didn't worry too much more the rest of the pregnancy. I had a C-Section delivery because she didn't want to come out and the environment in my uterus was becoming hostile. Problems started shortly after birth. She had trouble pooping from the get-go, screaming bloody murder when she had to go. The nurses continually assured me that this was normal, their bodies weren't used to it and she was scared. I was skeptical but believed them. I had to can breastfeeding and start formula feeding. All was...okay for the first few feedings. But then she started having awful gas, projectile vomitting and terrible constipation. At first the doctors said she was allergic to milk and needed Soy, but the problem was just as bad on Soy.
Eventually I switched Emma's pediatrician and this guy agreed something was seriously wrong. He asked for a full medical history on me, so I told him everything. There was one diagnosis I had that particularly intrigued my doctor. I was diagnosed with Gastrointestinal Esophageal Reflux Disease when I was 10 years old. Ever since I've been having to take prescription-strength acid reducers, have been on a restricted diet, have to take stool softeners and have to ingest higher quantities of water. My GERD is so severe that the lining of 3/4 of my esophagus, entire stomach and entire intestines and colon has been stripped. Everything that passes through, passes on raw organ. The lining replaces itself, but during severe flare-ups (usually when I decide to cheat on my diet) it sloughs off effortlessly. When I described to him the extet of my GERD, he asked if anyone else in my family suffered. I told him a lot of people in my family suffer from it.
After observing her through several feedings, we finally came to the conclusion that my baby girl had the same thing I do. From the age of one month, I had to start giving her acid reducers, put one teaspon of rice cereal for every 2 ounces in her bottle, prop her up in her sleep, have her sleep on her stomach (not that she liked sleeping on her back anyways) or side, and make sure that she did not move around too much right after eating. She also had to take a pediatric laxative for a short while, but now we take care of constipation by restricting her juice and milk intake and supplementing missed calcium with multivitamins.
Taking care of her is easier than I would have imagined. She eats exactly what I eat and listens amazingly well for a two year old. When I tell her she needs to sit still, she does. She also learns from her own mistakes. She knows that if she moves around too much after eating, that she'll throw up. When I tell her a certain food will make her tummy hurt, she understands. She can't drink milk straight, and can't tolerate too much dairy in general. She has trouble digesting meat and can't eat chicken because of her Egg Allergy. She can't even be around eggs when they're being cooked. Daycare will be a struggle because of her diet and the fact that she needs to take her antacids 30 minutes before eating and needs "quiet time" after a meal.
Her current doctor has never met a child with GERD to this extent, and wants to perform an Upper GI scope on her in a year to see how things are going. She has to go to the doctors every 3-6 months to get a transabdominal ultrasound now and to have her stomach checked to make sure there is no hiatus hernia. Though I've never heard of a hiatus hernia being diagnosed by Ultrasound. Mine was diagnosed by the Upper GI Scope.
We've also discovered that she, too, is having issues with her white blood cells. Primarily her neutrophils. This may be in part that I started abusing clozaril at the end of my addiction, beginning of my pregnancy before I found out. Clozaril is known for severely inhibiting the body's ability to make neutrophils and leukocytes. She'll be undergoing further testing to determine the cause for her neutrophil deficiency, and for now has a generalized diagnoses of Leukopenia since her leukocytes were low as well.
posted 7th Apr '09
Quoting em's momma ♥:“ I'm very glad it has been added. It's nice to know there's a place to go on here where other people will understand, even if their case is different. And congrats! How long have you been clean? ”
I have an addiction support thread if you ever want to post there! We talk about addiction and how it affected our babies...
We also talk about how we are doing in recovery!
There are ladies on there who have SOs who have addictions as well..... We also have a chat room! You should check it out! We also just talk about food and BG, and boys, lol....
posted 7th Apr '09
Emilia doesn't have a genetic disorder (that we know of yet) but she definitely has some special needs.
I started out breastfeeding her, but around 5 weeks she started screaming every time she had a bowel movement and eventually starting having blood in her stool 3 trips to the ER because the amount of blood terrified me and a switch of pediatricians lead us to milk protein sensitivity. I stopped eating dairy all together, that didn't work. So I eliminated soy, then peanuts and egg, then fish, and finally wheat gluten. None of this helped her at all. Painfully, I switched her to formula - we started on Nutramigen but she still had a lot of problems with it. A week or so ago we've gone to Nutramigen AA - its amino acid based and doesn't contain milk at all from what I understand. We're seeing how this goes and possibly are going to have to switch her to something else. I don't really trust this is thie issue at all though because she isn't getting much better even with formula switches.
Something that just occured to me: like the person a few posts above my family has a very long history of GURD. I don't have it, but my mother does and my neice had her asophogus tied off because of how bad hers was.