Ok, I'm sorry that you received possibly bad news, and I hope that everything turns out ok for you. I have been there, believe me. This is going to be long - but I know that you will gain from my insight and experiences - other's have. I'll tell you some things that maybe others won't.
First - the best advice that someone gave me was ....get Pregnancy Medicaid. It will pay for EVERYTHING pregnancy , prenatal, postnatal and the baby when it is born. It is guaranteed (I think) for all pregnant moms in FL regardless of income, insurance etc..
Second - try not to stress - it's not good for you, or the baby.
I had my first ultrasound simply to measure the baby and determine how far along I was so that the "quad screen blood test" could be administered during the 18-22 week, and I didn't know how pregnant I was. (Not a good record keeper - of my cycle) At that first ultrasound, I was found to be carrying 2 babies and was told that one didn't have a heartbeat (9weeks), and the other (13 weeks) had a tumor in her abdomen the size of her head! The midwife that I was going to referred me to a specialist in Lakeland that I HATED for a million and one reasons. I won't get into that right now - but he was awful. I asked the midwife to find me another Dr. that first of all - wasn't in a practice as large as the "specialist" because he had 8 partners, he was the only "high risk" guy, but you have to see all 9 and deliver with whomever is on call. Not for me. I refused to be part of an "assembly line", didn't want to see 9 different people and have to constantly be bringing them up to date on the findings of the previous visits etc... I think that anyone who accepts this kind of health care is promoting this kind of health care and making it acceptable for them to treat patients this way. Not my gig - so I searched on. Finally - my husband ran into someone here in Winter Haven that he knew who's wife was pregnant and had been to this so called "expert" in Lakeland - he said the guy was such a jerk that he wanted to punch him, but that now they go to the "Mac Daddy Dr. in Orlando who is FANTASTIC". My best friend in Naples called her Dr. and asked if I should come down there - he said "no - go to this guy in Orlando that's where I send ALL of my high risk patients". I called for an appointment and was told that he doesn't see patients on a regular basis - that you have to see one of the regular OBs there and if they want they will bring him in to consult. Since I had received recommendations for this guy from Naples AND Winter Haven, I thought that I would do whatever it took to get in there! I asked the phone person if she was a patient in that office and if so - who does she see? She told me she indeed was a patient and that she sees Dr. Jeannie McWhorter - so I told her that's who I wanted to see. At my first appointment Dr. McWhorter spent about 45 minutes with me. She was so kind, and patient and caring, and upbeat. She took me by the hand to the ultrasound tech, and sat and watched some of the pictures while rubbing my arm and holding my hand! She told the ultrasound tech - to keep me there, that the perinatologist (sp?) Dr. Carlin was either in the building or across the street at the hospital, and that she was going to go get him. She came back with this guy I couldn't get an appointment with and he spent 45 + minutes with me! When Dr. McWhorter left the room - he pointed at the door and said "you are in excellent hands, she graduated at the top of her class and was resident of the year for the state of FL". I already knew that I was in the right place! I still go to Dr McWhorter - even though I live 45 - 60 minutes away - because I think that she is that great. There are no Dr.s at that hospital and healthcare system that graduated from med school with a D- trust me.....they are all A+ top flight geniuses as far as I'm concerned! Ok...the perinatologist Dr. Carlin really really wanted me to have an amnio. I was really really scared of it because I'm a freak about needles and I thought that I would jump or flinch and something bad might happen. He wanted to do the amnio to look for Down Syndrome. I didn't think that we would terminate the pregnancy based on that diagnosis, so I wasn't sure. What the Dr. said - was that during the course of the pregnancy there is is different protocol for things that might come up -and the deciding factor about how to handle certain things would be if it was a down syndrome baby or not. He almost had me at that.....BUT... #1 - in one of my ultrasounds, that baby held up her hand and had her fingers outstretched, and the Dr. told me that was a good sign that it wasn't "trisomy 18" (sp?) a severe form of Down Syndrome, that "trisomy 18" babies have clenched fists usually. I pushed for the quad screen blood test, and it was taken. Dr. McWhorter called me with the results and was amazed! She told me when they took the test - not to worry that they come back "false +" MORE THAN 50% of the time - and because I had a twin (demise) pregnancy and my age (40) that mine would most likely be "+" but that not to get too excited because it's not the definitive test. My own results came back something crazy like a 1 / 4,0000 chance of one problem and a 1 / 7,000 chance of another problem. (they were testing for neural tube defects, and down syndrome). Anyway - I had done my research, and with an amnio I found that you have a 1 / 40 chance of a spontaneous miscarriage - so I chose not to have the amnio since my quad screen results were in my favor. I had to meet with my regular OB, 2 different perinatologists, and a genetic counselor over the course of my pregnancy. They were all fantastic, very compassionate and caring and informative. During the course of my pregnancy -it was confirmed that the one baby definitely didn't have a heartbeat, but they monitored the other baby very closely watching that growth in her abdomen. I was told that if it grew it could interfere with the development of her skeleton & organs etc.. so they were measuring it every couple of weeks. In December of my pregnancy - she developed a tumor in her brain! I was devastated and sick with worry. In my January appointment - VIOLA!......they were both gone! GONE!!!! The ultrasound tech and perinatologist could hardly conceal the surprise in their voices. My babies were delivered in April, and my daughter is fine. The hospital did ultrasounds on her belly and couldn't find anything! Today she is a healthy, active 6 year old in first grade and is one of the top readers in her class!
I hope that all of your worry to this time ends up being for nothing, but if your baby truly does have down syndrome, remember - every child is a gift. Many people say that their lives are enriched beyond belief from having a down syndrome child, and God will not give you more than you can handle. Good luck!
If you want to travel a bit to Orlando - Arnold Palmer Hospital is one of the top 3 in the country, and Dr. McWhorter is AMAZING. ###-###-#### is the # at her office. Also - now Arnold Palmer is the children's hospital, and Winnie Palmer has opened across the street and is for Women and babies. Dr. McWhorter's office is walking distance to both!