Life after NICU and losing my baby girl

Baby #4 due in mid January

on 09/14/2014

So, I’m sure many if not all of you have heard, we are expecting baby #4 in January. Right around the beginning of the month. Pretty exciting since it happened so quickly and things have been going somewhat smoothly.
Back in July, July 3rd to be exact, we did the routine 1st trimester screening and scan. We ended up getting the results back while on vacation in Colorado that everything was great. Our risk was 1 in greater than 10,000. Basically, the risk is so low, they can’t even measure it. Great news! I cried and worried everyone around the table. I tried to give a thumbs up, but it wasn’t until I was more composed I could explain. We were excited!
We still needed to do the afp screening in the second trimester to test for neural tube disorders like spina bifida, but that really wasn’t a concern for us. The 1st trimester results are much more reliable, like 90+%, whereas 2nd trimester quad screen results are accurate in the 80%. The only thing is, 1st tri screening can’t screen for neural tube defects, but you can test for the trisomy markers. We set up the next appointments and went on our merry little way, thanking God for the good results and praying that the good results keep coming.
Keeping with our agreement with each other, we didn’t want to know what we were having unless something came back as there could be issues, then we would find out. We went into our most recent appointment on August 29 with very little nerves. We had been told our results came back good from the afp. Well, it started out nice enough.
She started doing all the measurements and everything was going pretty normal. Baby was being a stinker and not allowing very good views of the heart and its various workings, but that has been with all the kids. I started thinking to myself “Its pretty sad when you spend so much time in the perinatal office, you can pick out exactly what is what, like baby’s diaphragm, the leg bones, the organs (bladder, stomach, etc).” I even happened to notice as she was doing the measurements from head down and happened to see and was able to tell pretty sure what we were having. Was kinda bummed because the tech we normally got would tell us to look away because she knew we knew what to look for. Not this tech. She didn’t say anything while in that area, but she also didn’t warn us to look away.
Then she went back to measuring baby’s heart and still couldn’t get very good pictures. She then moved to the nuchal fold and I noticed the number, something about it didn’t seem right, and I noticed that she was measuring the same thing over and over and over. She never said anything was wrong, but she wasn’t saying anything at all either. Finally she says she thinks she has what she’s best going to get.
Then the perinatologist comes in with a resident and we allow him to come in and consult with us (all the more we get the chance to educate another person about acd and all that we know about it). She mentions that the heart pictures weren’t the best, we’d need to come back for sure for better pictures. We knew to expect that. But what she ended up bringing up was the nuchal fold (the skin on the back of your neck) and mentioned it was thicker than it should be. Normally, it should be below 5mm. Our measurements were between 5.2-5.8mm, depending on the image she got. She brought up the first tri screening results and said that was a good sign, but what were the second tri results from the afp. No one had them on hand and all I had been told was that they were good, they came back negative. The genetic counselor (who came in with the dr) decided to go get them so we could all talk. This is where things got even stranger. Turns out, when they did the afp screening, for some reason, the lab did a full quad screen. And it had come back somewhat worrisome.
My age related risk for having a baby with Down’s is about 1 in 760. After first tri screening, it dropped to 1 in 10,000+. But second tri screening came back 1 in 319. Ok, there’s a HUGE jump in the numbers. But mixed with the measurements, the risk jumped even more. From 1 in 300+ to 1 in 30. Ok, this is not cool.
We talked about what else we could do as more testing and see what is going on. What we came back with was either doing another quad screen and seeing if it came back just the same (the two screenings were drawn at different clinics and sent to different labs) and the free cell dna test. After seeing everything laid out before us and still reeling from the blind siding results, we decided to do the free cell test. Accuracy is 99%+ All they need to do is draw my blood and send it off. Then, they seperate my blood from baby’s and see if there are any markers for downs. Takes a week to get results back. Mind you, this is on a friday. Before Labor Day. This was going to be a very busy week with the holiday, Anthony starting school, and all the other normal stuff that pops up without warning all the time. Great to know someone will be able to enjoy their weekend!
Fast forward to Monday, September 8. While I was getting ready to go pick up Anthony up from school, the call came in with test results and I didn’t make it to the phone. I instantly started praying. I had a feeling I knew the results, I just wasn’t totally sure.
I finally got to call back and the genetic counselor I talked to made it seem like she was telling me the best news of my life. The test came back negative for down’s.
It took a lot of talking to get her to realize why I was so upset with the results, I think I finally got it through her head that this was a pattern much like Bailey. That down’s wasn’t our worry, acd was. that down’s means there’s at least some chance at life. Acd is pretty much certain death. She was pretty dismissive of redoing the quad screen to double check and rule out any lab inconsistencies and advised all that is left to test for things like acd are invasive. Like Amniocentisis (Amnio), which carries a 1 in 300 chance of something goes wrong. I refuse because any chance is a chance too great, especially before viability. There’s just too much at stake. I might consider it down the line, but there are a lot of moving parts to this whole situation. Basically, we learned nothing except that baby doesn’t have downs, there is no more non invasive testing (the kind of testing they can do on just drawing blood from me, invasive testing would be drawing blood or fluid from baby or the amniotic sac), and we have even more questions about what is going on inside my belly.
So, recap.
1 we had screening done in 1st tri come back beautifully, 2nd tri didn’t come back nicely, but we weren’t warned.
2 baby doesn’t have downs, very reliable test
3 there is no more testing before we get invasive, which we both feel very stongly against,
4 oh yea, I totally forgot. Its been confirmed through ultrasound and through the testing (and I was right when I saw that area, told you, I know what to look for). We are having another baby girl. No names are picked out for sure and won’t be until likely baby is born. So asking won’t get you anywhere.

If you have questions, please ask Adam or me. Its a lot of confusing stuff to try to explain to others if they don’t have experience in things like this. where it literally hits the fan. I’m going to try and keep everyone posted with each appointment (regular ob appointment on the 16th (yes, Adam’s birthday) and september 19th (another ultrasound scan to try and get heart pictures.
Keep praying for our baby girl. So much uncertainty, its hard to know what to pray for. But we would appreciate it.


One response to “Baby #4 due in mid January

  1. Cindy says:

    So happy for you and Adam. You know Don and I will be praying for your baby girl and for you and Adam as well. Keep posting so we know how everything is going. God be with you all. Hugs to you.

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