As I left off, the first days, post news, were sort of dark.  We cried a lot, both having our moments of feeling overwhelmed, scared, sad, etc.  Somehow, we managed to alternate with this so that when one was down, the other was there to offer words of encouragement.  This is one of the perks of already having gone through this.  We know how important it is to talk to each other about what we are thinking and feeling, and we both know how the other handles this sort of thing.  Each passing day seemed a little easier.  By Monday, (four days post news), we were still off, but with a lot less tears.  We were both in the same mind set – that we needed to see how things went on Wednesday, and then take it day by day from there.

Wednesday was going to be a big day for us.  Weeks before, we had scheduled a fetal echocardiogram at Children’s Hospital, just based on the fact that Eli had a heart defect.  We had decided, with the midwife, at my very first appointment, that it would be good to rule out any issues there, since Eli was still undiagnosed.  Then, during our conversation with Eli’s geneticist, (that we had after we got baby’s diagnosis), she said she would get us in to see the Maternal Fetal Medicine team at Children’s, as well.  They called me 20 minutes after we had hung up, and scheduled an ultrasound for a couple hours after the fetal echo.  (It’s nice to know the right people in these situations.)  There, we would have an intensive ultrasound, looking at baby in a lot more detail, with a specialist.   It would be a stressful day, but obviously something we needed to do.  There is a pretty broad spectrum with Down syndrome.  Some kids are fairly healthy, while others have a lot of medical issues, especially in the first few years of life.  These scans wouldn’t tell us everything to expect, but could potentially rule out some of the more major complications.

Wednesday morning finally came, and Josh and I were both a bundle of nerves.  I can’t speak for him, but I felt like I was resisting the urge to puke all morning.  I go to Children’s all the time with Eli.  As he has gotten older, it’s really become no big deal, but today was different.  Even walking in was different… the smells, the vibe, my blood pressure.  Our first appointment was with Cardiology.  I was very impressed at how quickly they got us back, and how little wait time there was to get started, (not the norm for a Children’s appointment).    The tech told us that she wouldn’t be able to tell us much, and we would have to wait for the doc to get information, but to ask questions as we pleased.  We didn’t.  We were silent the whole time, and towards the end, she commented on it.  Josh was hardly watching the screen – looking down a lot.  He explained that we had too much experience staring at medical screens, and how not really knowing what you are looking at can put you on edge.  I cried then.  I had already had a lot of flashbacks that morning, of when Eli was a newborn, and it all just came flooding out.   I thought of things that I hadn’t thought of for years.  Not that I was suppressing those memories, I just didn’t have a reason to go back to those days in my head. She finished up about 10 minutes later and said the doc would be in shortly.  Then she came back later to say the doc would be even longer.  Awesome – more waiting.

Finally the doc came in, and gave us the news we had been waiting to hear – they found no issues with baby’s heart.  She even went so far as to say that if it were her baby, she would be very happy with what she saw.  BUT, then she said that doesn’t mean that baby girl is TOTALLY in the clear.  There is potential for a couple things to happen once a baby is born, and there is also a chance that they missed a small hole, since they can only see so much in utero.  Even with her disclaimer, it was still very good news, and put us so much more at ease.  We understood that this wasn’t a 100% guarantee, but it’s what we wanted to hear.  I cried happy tears then, and so did Josh.  I wanted to give her a huge hug, but then I thought that might be weird, so I held back.

One appointment down, one to go.

After a delicious, nutritious lunch in Cafe Children’s, we headed up to appointment number two, with Maternal Fetal Medicine.  I thought I had seen all of Children’s Hospital at this point, but turns out there is this beautiful little wing on the 4th floor, for mother’s and medically complicated babies.  It was really nice…I would almost call it fancy.   We had a 35 minute wait this time.  It doesn’t sound like much time, but my nerves spiked again, even more so than before our first appointment.  Just as I was starting to get really anxious, we were called back.

The nurse that did our ultrasound was very nice, and much more chatty than the first tech.  I think she was more qualified to give her opinions of things as she went, but would then remind us that we would talk to the doc later.  She did a great job of pointing out some fun things, too, like the baby’s huge feet.  We got a good little chuckle out of that…they really were big.  She even grabbed them with her little hands, while we were watching her.  So, it definitely wasn’t gloomy like the first scan had been, and that was refreshing.  She wrapped things up, telling us that she didn’t see one thing that caused any concern.  There are a handful of markers that they check for, and our baby had none of those markers.  The bilateral EIF, that initially pulled the trigger on us deciding to do genetic testing, had even faded.  Well, the right side had…and when they only see one EIF, it’s not even considered a marker.  She asked me, before she left, if we would have ever decided to do the Verifi testing if they hadn’t seen that, and I told her no.  She thought that was super interesting because she didn’t feel like the bilateral EIF was even worth mentioning these days, (there is a lot of debate as to whether or not this should even be considered a soft marker).  It is pretty crazy how all of this worked out.  However, I am currently feeling grateful that we got the diagnosis ahead of time.  It was just such a shock and a blow when we had Eli, and got such scary news within an hour of him being born. It took away from the celebration part of the birth, and we ended up feeling a little robbed because of that.  At least this time we will feel more prepared, and so will our family and friends.

The doctor came in and we ended up having a very open, long conversation about things.  He said if he had done the scan, knowing nothing about us or the diagnosis, he would not have had any concerns.  He said that happens maybe 30%(ish) of the time – where a couple has a baby with Down syndrome, (not knowing before birth), and the professionals go back and look at ultrasound, and think – there is no way we could have known.  Everything looked so “normal”.  I told him that the midwife said we could do an amnio to be 100% certain the baby does have Down syndrome. (The test we had is 99% accurate – so we felt the amnio seemed silly, but I wanted his opinion.)  He was honest and said that if we were planning to terminate the pregnancy, based on the Down syndrome diagnosis, it would make sense to do the amnio.  Since that wasn’t the case for us, it didn’t seem necessary to take the risk.  (The risks are minimal, but pretty much all statistics mean nothing to me these days.)   We agreed with his logic, and stuck with our decision to not proceed with an amnio.  Though it is natural for your brain to go there, we are NOT in the frame of mind that this was a testing mistake.  She has Down syndrome, and that is okay.

We ended up leaving the doctor, deciding it would be fine for me to continue being seen by my regular office, as long as they felt comfortable with that, (and they do).  I will have ultrasounds every 4 weeks to keep track of baby’s growth.  This will start at 28 weeks, since that is around the time when they usually start to see a lag in growth, (if they see it at all).

So – what does all of this information mean?  At the risk of sounding negative, (which is not how I feel),  I want things to be clear for everyone.  This is all good news.  The fact that things are looking so good now is amazing, and it provided us with some relief in regard to some of our medical related fears.  But – they can only see so much at this point.  I should mention that Eli actually had an intensive ultrasound when I was around 7 months along, because he had an irregular heartbeat.  We saw a Maternal Fetal Medicine specialist at Lutheran, and she cleared him, saying everything was fine, when it wasn’t. There are a lot of things that can not be seen, and we can’t dismiss the possibility of any medical issues just because we got this good news.  There is also no way to tell us anything about her intellectual ability, if she will have major feeding issues, or whether or not she will have autism, in addition to Down syndrome.  That’s all stuff that we will find out later on, and deal with as it comes, but it’s still a little terrifying, if I am being honest.  Unknowns are always scary, but if there is one thing I have learned, having Eli, it’s that I can NOT use my energy focusing on the what if’s.  I have to take things one day at time, and try to focus on the good.  Save the fear for when you KNOW exactly what to fear, then work through it.  It all sounds so easy, right?  haha   It’s not.  Even as a veteran, I will have my freak out moments.  I am far from perfect.

These past couple weeks have been a real roller coaster, but Josh and I are currently in a pretty good place.  We won’t consistently be in that good place for the next few months, we will have our ups and downs, but one thing is for sure – this baby girl is going to be loved and celebrated, as all babies should be.  As mom, I am already feeling that love.  We are definitely going to need a lot of extra support in the coming months, but we don’t want pity.  This was not what we were expecting out of FINALLY deciding to have another baby, but we also weren’t expecting Eli, and he has turned out to be the light of our life.