Follow up and Spring Break

 In the two days that seemed like eternity until our next appointment, we (Sterling) looked up all the papers we could find on CDH. There aren't many, and most of them contain European data, which isn't quite comparable to what is in the U.S. But, it's what we had. We poured over every paper,  and Sterling analyzed every statistic he could find. The doctor had told me that we may qualify for an experimental fetal surgery, but he needed to look into it more and call some colleagues to gather information. He had had another couple not long ago with this diagnosis but they didn't qualify. In my mind, their case must've been so severe, the surgery wouldn't have helped. I clung to that hope, that maybe ours wasn't bad enough and that's why we might qualify. Then the morning of our next appointment, in the shower - where all wise thoughts are conjured, I had the realization it was probably the opposite. Why would anyone do an experimental surgery on a case that wasn't bad enough to outweigh the risk? It would have to be a situation where the baby didn't really have a chance, so this was their only shot. And my heart sank. We went to the appointment - all of our questions that had come up over our two days of research scribbled on a piece of paper- knowing full well we wouldn't remember them once we got there. He brought us back, reviewed the information again and included a little more detail - your son has a right-sided (which from our research was worse than left) congenital diaphragmatic hernia. All of my colleagues have directed me to John's Hopkins in Baltimore. They are the only ones who will do the experimental surgery, if you qualify. We would need to do an amniocentesis, which comes with its own risks, and then set you up with them for further testing. If you don't want to go this route, you need to find a hospital with ecmo (this takes the blood out of the body, oxygenates it, and circulates it back in the body), because the baby will not be able to breathe once he's born. And here was our chance. To ask the question we needed to ask, but not really wanting the answer.......what percent chance does he have of surviving without the experimental surgery. 20%. It was like a massive blow to the chest. I don't know what I was expecting, but it wasn't this bad. He left the room to let us decide if we wanted to go ahead with the amniocentesis. We looked at each other. We had the same thought. 20%? That was it? If we did nothing, his fate seemed certain, so our choice seemed clear. We were shortly in a room with a very long needle (I don't do needles well, by the way. I don't scream or anything, just pass out). This time I held it together for and we were again going to play the waiting game. This would be the story for the rest of our journey. We would wait to hear from Hopkins. We would wait for the results of the amnio. We would wait....

On the hour drive home we decided it was time to tell our family. We still didn't have much information, but gave them what we had. Via text of course. Maybe that was impersonal but there was no way of getting through a coherent conversation that day. They all offered their love and support, withheld their thousands of questions, and had now joined the waiting game with us.

In the meantime, we had planned a spring break trip with our kids, for the first time since we had kids.  Feeling ridiculous, we asked the doctor if it was okay to travel. I don't think I will ever forget his response, "Sure! Besides this one thing, this is a completely routine pregnancy!" Maybe he was trying to make things feel better, or more normal, but it made it feel so trivial, so easy. Nothing we were currently feeling.  But life kept on, and so did we.  We made our trip to Puerto Rico.  It was good for us. The tension was lower, the kids were able to relax and play happily together on the beach, while we tried to do the same with them.  And we got a phone call, with the amnio test results, which were negative.  We breathed a huge sigh of relief and tried to soak up the last days of sun and sand and kids before coming back to reality. 

Ultrasound

 I believe in miracles.  You know, in the "yea lord I believe. Help thou my unbelief" kind of way. Not that I had really thought that much about it, until we really needed it.  I have always believed they happen, but not necessarily that they happen for me. But we experienced miracles last year. I'm not sure why. I don't believe anyone "earns" a miracle by being more faithful or more righteous or by offering a more fervent prayer than another. What could be more holy than a fervent, sincere prayer offered by a mother? And yet, so many mothers don't receive their miracles. Their arms remain empty. And my heart aches for every single one of them. Maybe it has nothing to do with us and more to do with the baby or child. Pretty sure I won't figure it out in this lifetime, but I am humbled and grateful to no longer have empty arms. This month marks one year since we got the diagnosis. It's been a heavy year to say the least. I went to my 20-wk anatomy scan alone, not thinking twice about it (because this was just routine, nbd...I've done three before). So I was chatting, trying to be friendly, with the sonographer and there was a medical student watching, which was fine. The student kept asking cautiously, "that's the, heart? That's the...liver?" I thought to myself she really needed to study more - shouldn't she know where the organs are located? and finally she was shushed by the sonographer, which I took as a sign of her annoyance at the ignorance of the student. I did think maybe the ultrasound looked different than others I had had, but what did I know? I'm not medical. So I brushed that thought out of my head. They finished and left the room and I waited. And waited. And waited. I hadn't seen this specialist before but had been warned about his candidness. He entered the room, pulled up his rolling stool and faced me right on my level, knee to knee and eye to eye. This was when I knew something wasn't right. He didn't dance around the problem, just told me like it was, which I was incredibly grateful for. The baby's diaphragm didn't develop resulting in his organs herniating into his chest. I tried to just listen before I panicked. He said there was a pretty routine surgery to put the organs back in place once the baby was born that wasn't really too big of a deal. Oh good, I thought. I'm glad I didn't panic. He continued that the fatal part was that his organs in his chest were preventing his lungs from developing. He would be fine in utero, since he didn't need his lungs, but once he was born he wouldn't be able to breathe. "This is very serious," he said. I still tried to repress the panic, but it was there, bubbling to the surface. He reached over and grabbed an entire pack of tissues for me. Then he continued - to have any shot at all the baby would need advanced support that only one hospital in GA could offer, but in all reality he would need more than that. There were more details and explanations, but I was just glad I could remember that much of it. I asked him to call my husband to explain all of this because I wouldn't remember and he would have questions I couldn't answer. He told me he wanted to call colleagues to gather more information for us, and we should come back together to meet with him in two days to learn more. As I made the appointment, that med student that perhaps didn't actually need to study more, came out and gave me a big, tight hug, which is just what I needed. I left the office, grateful for my mask that I pretended hid the tears streaming down my face. I called my husband at work, and tried through my sobs, to explain what I could remember. I picked up my daughter at a neighbor's, who let my cry on her shoulder and then her couch with her, and went home to meet my husband who had left work to be there with me. 

Easter in Lugano

There was an Easter celebration in the city that we went to.  They had a big Easter egg hunt, and there was a big playground nearby, so we headed down to participate in the festivities!

These pictures just don't do it justice.  The spring here was, by far, my favorite time.  There were the most beautiful blossoming trees all over.  I could've just sat and stared all day at this one.

We dyed Easter eggs

And I realized we didn't have an Easter basket....so we opted for an Easter Tupperware.  I'm not going to lie, the mommy guilt was definitely making itself known as I did this.  But you know what, Cohen loved it.  It didn't matter (it's what's on the inside that counts, haha).  But really, he was so excited for what the Easter bunny brought and to find hidden eggs.  It was more than one lesson for me. 

Then we went to Tammy's house to celebrate again on Easter.  It was a great dinner, with even better company, and they had planned an Easter egg hunt!

I love this picture. I feel like it represents so much. Within minutes of meeting Tammy, Cohen just warmed right up to her.  She always made him feel special and was kind and loving to us.  She was the answer to so many of my prayers while we were there.

Cute Little Boys

I had been wanting to get some newborn pictures of Grayson, with us and Cohen, but had been procrastinating it.  Finally, I decided to just snap a few pictures one morning.  These are a few of my favorites. I just love these cute faces...and feet!

More Visitors!

Just a little bit after my sister left, Sterling's sister came.  She had actually had a trip planned to Europe with a friend, MaryAnn, before we had even known we would be moving to Switzerland.  So, they added us to their itinerary. So fun!  Christa really wanted to see Florence, so Sterling took them to check it out.  I wasn't quite ready for such a big adventure with the brand new baby, so we stayed home and rested. :)  And they had a great time!  (And Cohen LOVED having more friends around.  They played with him, read to him...he was in heaven!)

Sisters are the Best!

So, we returned home from the hospital and tried to get settled in as a new family of four.  Clearly Grayson settled right in.  :) 

I love this picture!  It's real life, and it's fun real life.

Leading up to having baby number 2...abroad, in Switzerland I had tried to convince my mom or sister to come help out bond with the baby, but Melica has 3 kids and logistics were difficult.  Anyway, it just hadn't worked out.  Until....they surprised me!  My mom helped with my sister's kids while she flew to help me!  It was SO great.  (and that's the understatement of a life time).  She brought us wonderful things from America (like Ghirardelli brownie mix, PB, and new treats for the kids), she cooked for me, she cleaned for me, she held Grayson so that I could nap, she played with Cohen, and she was fabulous company!  It was amazing!  I have no shame in admitting tears were shed when she left...and maybe even after she was gone...for a while.  Yea for sisters (and Moms)!

Getting some snuggles.

Opening new goodies

While she was here, we thought we needed to at least see something cool.  She had traveled all this way, it seemed lame to not venture out (even though she made it clear that was not her purpose or expectation in coming).  So we thought we'd visit the castle only 20 minutes away.

Well, once we explored the castle, we thought we should go a little further.  There is a dam in one of the 007 movies and also an old Roman bridge close to it that we had been wanting to see.  It wasn't much further, so we checked the bus schedule and headed on.  We had to transfer train to bus, and got on our last one headed up the mountain.  After we were on it for a bit, we thought Sterling should ask the driver what time the last one goes back down (just to make sure we didn't miss it).  Well, it had just passed us.  Turns out they were on the "winter" bus schedule, of which Google was apparently unaware.  So we thought the one we were on would turn around and go back down, so we'd just ride it and not get off.  So after we went significantly further, Sterling asked the driver if he went back down.  Nope, only up.  Seriously?!  We were so far up the mountain now, the driver told us it'd be like 200 francs to get a taxi to come get us and take us back.  He also said the hotels were all closed for the winter.  But he and an old lady in the front took pity on us and stopped along the way until we found one open hotel.  

Since this hadn't been part of the plan, we were without, well, anything.  But, we were the only people in the hotel and it was beautiful.  It had an entire wall of floor to ceiling glass windows and the view was spectacular. The bus back down didn't come by until close to noon, so we were forced to just relax and enjoy ourselves.  

In the morning we went for a walk and found a quaint little village to explore.  We walked along the river and listened to the water and breathed in the fresh air.  So beautiful.

These were taken from the bus ride back down. 

The color of the water was so amazing.  It was all just breathtaking.