Sometimes your worst fears really do come true.

*For anyone who doesn't want to read the whole post, I want to share here that Aidiliy did not in fact have Down Syndrome.  She was actually born with Anencephaly/Acrania. Part of her skull did not develop. Nobody had any idea until she was born.*


Anyone that knows me,  knows what a huge worry wart and stress case I am. I have horrible anxiety. One of my main fears is something happening to  , Aaron or one of the kids. When I  am pregnant, this fear is magnified and I am always thinking something will go horribly wrong.  We did have complications with Ella's pregnancy but Abby and Max were smooth sailing.

I had a gut feeling since day 1 of this pregnancy with Aidiliy that something horrible was coming. I tried for 17 weeks to tell myself it was just my anxiety rearing it's head, just me stressing over nothing as usual and we would have our perfect final member of our family in our arms in November.  It started when my initial HCG levels at the very beginning were not doubling. It corrected itself...but that was weird. Dr's all said it was fine, some are slow starters.  Then they couldn't find the pregnancy on ultrasound when they should have been able to, and we were told it might be ectopic.  They were able to find her the following week and again said she was just a "slow starter".  I was about 6 or 7 weeks at this point. With the other 3 kids, as soon as we saw a heartbeat,  we announced the pregnancy and felt confident. This time, I was still nervous so I decided to wait until my 9 week scan. It was perfect, I was temporarily relieved,  and we told the world we were expecting our 4th miracle. I was transferred over to the high risk dr because of my history with Ella, and for a few weeks thought things were going to be ok. Our 12 week level 2 scan was perfect, her nuchal measurement was perfect. My labs from my 1st trimester screen were *ok*...everything normal except my Papp-a level was low. They told me it was probably nothing,  maybe a placenta issue and they would watch it.  I went in for another perinatologist appt at 15 weeks. Again,  everything looked perfect and he was able to tell she was a girl.  We were so, so excited.  I started buying clothes and bows.

I still had that feeling though...that little voice...

I asked a few drs different times why her heart rate was always a little elevated.  Everyone said they weren't sure but it was probably fine.

16 weeks. We get a phone call from genetics telling us that my 2nd trimester lab screening (quad screen) came back very abnormal and looking very much like Down Syndrome.  She had a 1 in 4 chance.  It knocked the wind out of us of course but it was never something we felt we couldn't handle. She was our daughter. We would face it together. After the initial shock wore off, I was actually **slightly** relieved. I was thinking, ok, THIS is why I have had this feeling of something being wrong the whole time. This is what it is. It's scary and it's life changing but she will be ok and we will handle it.  At least it isn't something fatal...

16. 5 weeks.  We went to Genetics for a blood test to confirm if it was Down's or not, and to have an in depth level 2 ultrasound to check for Down's markers and any major heart or spine defects.  She was measuring a few days behind but they said she looked great and they saw  nothing concerning. I left still thinking in the back of my mind she had Down's but thanking God that they didn't see anything awful.

17 weeks 1 day. Decreased movement and I was unable to find her heartbeat with the home doppler. We decided to go to the ER. I cried and begged God for her life while I took a shower. I didn't care what was wrong with her, I just needed her alive. At the ER,  a nurse checked with any doppler for about 15 seconds.  All I heard was my own hb but she said she was pretty sure she heard the baby "somewhere back there and it was like 180s". They sent us home, no ultrasound.  I tried to be relieved but I just knew.

17 weeks 2 days.  Still no heartbeat with home doppler.  My dr told me to come in for a well check and to check fluid levels to relieve my anxiety.  Once I was there the nurse couldn't find her heartbeat on the ultrasound and went to get the dr. He confirmed that Aidiliy was gone. I thought I was going to die. I'm not even going to try to put the emotions into words. Use your imagination and then multiply it by infinity.

I came home, packed a labor bag, situated the kids with my mom and went back to the hospital,  to check into Labor and Delivery with all the other moms there having live babies.  Where I myself had delivered Abby and Max.

I'm not going into detail about the actual induction and birth. It's private, its too hard to write right now, and I'm also pretty sure nobody really wants specifics.  Basically I had to have a regular full on induction and labor, in a regular delivery room complete with a baby warmer next to the bed, it took just under 12 hours, I held her, she was blessed, I went home with nothing but a box with her hat and blanket and footprints in it. And a handful of grief pamphlets. Again, use your imagination to imagine how horrible it was and then figure it was about a million times worse than what you are imagining.

We found out a few hours before she was born that she did not have Down Syndrome.

When she was born they discovered that she had acrania/anencephaly.  Part of her skull did not develop. Nobody has any idea how it could have been missed on all the ultrasounds I had. It would have been present since about week 4 or 5 of the pregnancy.

We don't know what caused it. I was taking high dose folic acid by that point. We are having an autopsy done. It might provide answers, it might not.

Just trying to make it through each day. Wouldn't be able to without all of the love and support and prayers we have gotten.

I just want my baby.