What's in a name...

How do you name a baby that you know you won't get to keep?

That night in the hotel room my husband and I talked and talked and cried and cried. I can't even remember everything we talked about that night, I just know that sleeping was a hard thing to do at this point. But we were both emotionally exhausted. 

I found myself in desperate need to pick a name for our sweet baby boy. And I began searching. We had already picked out 2 favorite boy names and 4 favorite girl names and the plan was to chose a name when the baby was born. Our boy names were Benjamin and Prescott. Once we received this news, however, these names did not fit at all. I felt that this baby boy's name needed to have a deeper meaning. It needed to stand for something important to us. I started to look up names that meant "strength" or "blessing" and hadn't really came up with anything that fit just right. I finally decided to try and sleep, and luckily I was able to get a few hours.

I woke up around 5:30 in the morning the next day and once I was awake the mind race was on. I couldn't stop it. My thoughts were up and down and all over the place. I seriously have to make an entire post about everything that I was thinking because I'm already amazed at how much I've processed already and how much my thoughts have changed since those first moments after getting this news. But the one thing heavy on my mind that morning was a name. I spent more time reading name list after name list and trying to find the name with the perfect meaning. 

It was finally getting to the hour that I needed to get out of bed and shower so that we could make it to our morning appointment. Before I got out of bed I thought about the name, Jude. I always liked this name. In fact, this was a name we had on our list for our 2nd son. I thought to myself, I wonder what Jude means... and so I looked it up. Jude means "praise". When I read that the first thing that popped in to my head was the song, "Praise You In This Storm" by Casting Crowns. I first heard this song at a funeral for a firefighter that my husband knew a while back. I didn't know the man, but this song was sang at his funeral and it touched me to the core. It gave me chills. And every time I heard this song after that I always got chills. I love this song. I remember singing it to Sammy when he was crying. I remember singing it in my car and letting the goosebumps take over. I remember the "storms" I thought I had been in before and now, and how this was THE biggest storm of my life. Of our lives. This trumped any storm we every thought we had encountered. This was the storm that would change our lives forever. 

So I got in the shower and I tried remember the words to the song. I remembered most but not all. I decided when I got out of the shower that I needed to hear this song again. So I found it on YouTube and I stood there with wet hair, wrapped up in a towel and listened to this song.

"Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away


I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

As I stood there listening to this song I was completely overwhelmed with so many emotions it is hard to describe. My body was shaking just like when I first heard the news. The tears were pouring from my eyes in a way I had never felt before. It was a moment that I will never, ever forget. It was like Jesus was wrapping his arms around me and somehow I felt that I was strong enough to get through this. I felt so weak, but yet I knew I could be strong. My faith grew immensely that day that, it's even hard for me to comprehend. But I knew that the only way I was going to get through this was with my faith in the Lord. And so I prayed, I pray daily, many times a day, about everything. And still, 3 weeks in to this story, I have made it through conversations and appointments and meetings that I could never have pictured myself ever being able to sit through calmly. But just as the song says, "you heard my cry to you and you raised me up again."

After the song ended and I managed to stop crying, I went to my husband. I explained to him the meaning of the name, the song, and wanted his opinion. He loved it too. I had also been thinking of middle names and a good friend had mentioned using my sister's middle name for our sweet boy. Her middle was Lee. That is a whole other blog post, but when my sister was 17 she died due to complications from a car accident. I was only 18 at the time. Unfortunately I am no stranger to grief, but I also feel it has prepared me for what I am facing today. And so, our precious baby boy was named Jude Lee. And nothing ever seemed more perfect.

I had shared the name with my sister in law and even before I explained how we came to chose the name she was looking up the meaning. She found that St. Jude was the Patron Saint of Hope and Impossible Causes, and one of Jesus' original 12 apostles. According to the National Shrine of Saint Jude, "He preached the Gospel with great passion, often in the most difficult circumstances. Through the power of the Holy Spirit, he made profound differences in people’s lives as he offered them the Word of God." I don't think there could be a more perfect name for our son. And then she looked up the meaning of Lee, "healer". Wow. Those 2 names together seem even more profound than I ever could have imagined. I believe that our story of our sweet baby, Jude Lee, has the ability to touch many lives. And knowing that brings me great comfort. Later my sister in law was told what the definition of the word, lee was. Lee, the word, means "shelter from wind or weather". When I learned this I just thought.... our storm, our shelter. This name is too perfect. Praise God.  

Everything should be fine...

I have been wanting to put this in to writing for a while now. So I'm finally beginning. This beginning might be haphazardly written and possibly all over the place because we are now 3 weeks in. But I need to start somewhere.

I think I will do a completely different introduction post about our family and all that. But for now, this post will begin with our trisomy 18 story.

A little bit of background to help get this going. We moved from Arizona to Alaska for a multitude of reasons. When we moved I was 16 weeks pregnant with our 3rd child. This time we weren't going to find out the sex of our baby and we were going to enjoy the sweet surprise of being told, "It's a boy!" or "It's a girl!" when the baby was born. I was surprisingly excited about this, which was odd because as you will probably come to learn, I am a serious control freak.

So we arrived in Alaska with a new doctor already chosen. I had my first checkup here and everything was going well so far. At 19 weeks I was scheduled for my anatomy scan at the hospital. I was excited because this is when they measure every part of baby and you get that huge sigh of relief when you find out that baby is healthy. And that's exactly what we got. We were really strong and didn't peek when the technician checked the lower extremities so we wouldn't see the gender. Our two boys were with us (they're 4 and 2) so we were pretty well distracted. What we did get to see was our baby bouncing all over the place. Kicking and punching and moving... it was a beautiful sight. They did the measurements, sometimes several times because of our active little one. And everything, EVERYTHING, looked great. Whew, then came that sigh of relief. We have a healthy baby. And then followed with the Facebook post, Baby is Healthy! Yay! Now I can worry a little less and enjoy things a little more. What I found this 3rd pregnancy was that I was so much more worried than the first 2 times. I couldn't quite pinpoint why, maybe partially because I was thinking about how I was pushing my luck to have a 3rd healthy baby, or maybe because deep down in my subconscious my body knew... something was wrong.

 Not long after this scan I got a phone call from my doctor's office. They wanted me to go to the hospital in another month for a follow up anatomy scan. It seems my placenta was low and near my cervix and they wanted to make sure that it was moving out of the way, which is usually what happens. I wasn't too concerned because at this point I was still trying to decide if I wanted to go through with a repeat c section or try for a VBAC (vaginal birth after cesaerean). I looked forward to ultrasounds, after all it was a chance to see baby again!

So the date came and I was just about 23 weeks pregnant. The technician that did the scan was interning and so I kind of had 2 scans because she did one and then her supervisor came in and re checked everything. They said my placenta had indeed moved. Yay! She also spent a great deal of time measuring everything all over again. She said, that's just what we do. And some measurements she did many times, because once again this sweet baby was very very active. I never peeked at any gender parts and I watched with joy and amazement as she measured baby's head and belly and heart and we looked at feet and every little part. To me, baby looked perfect. And the technician seemed to think baby was just fine too.

A few days after this scan I got a very unnerving phone call. My doctor's office wanted to see me that week instead of my already scheduled appointment a month out. When I asked why, I was told there were some unclear things about my last scan. The skull shape seemed to be abnormal and the radiologist couldn't see all of the spine. I made my appointment for the following morning and began to do what I do best and start worrying. I would reassure myself with thoughts like, but I had a scan at 19 weeks and we saw the skull and spine. But they said my baby was healthy. The baby was really active so maybe the pictures just weren't clear. And I managed to stay calm enough to get through the rest of the day.

At our appointment the following morning our doctor was apologetic that we were even told these details over the phone, she'd wanted to talk in person. She explained that the issues were, the skull shape was possibly more pronounced in the back and a possible intestinal blockage. She also said these issues, if they end up being legitimate, were fixable things, not major serious things. She also said she wants me to head to Anchorage to see a specialist just to rule anything out. This was hard to hear. Anchorage is a 3 hour drive one way and it was stressful to think about making that trip. But I wanted the all clear. I wanted to hear everything was okay. So I would've gone anywhere for more answers. When we questioned our doctor about our previous scan she read through the results of that ultrasound. After reading through she was very convinced that this was just a mistake and that we would go and get checked out and everything should be fine. And so we left that appointment feeling uneasy but also feeling like everything was going to be okay.

Unfortunately it took a while before we could get an appointment with the specialist in Anchorage and once they finally called the soonest they could see me was May 28th. It was April at the time and I just thought, I can't wait another month for this! Luckily my doctor agreed and referred us to another specialist and our appointment was set for Tuesday, May 12th. Our immediate family knew of what was going on but we hadn't shared with any others because we wanted some answers first. We said many prayers that our sweet baby would be just fine.

My husband has a wonderful job with one major downside. He has to leave for 4-6 months to work during the summer season for this job. His date to leave this year was April 30th. With all that was going on I was really disappointed that he was going to miss this specialist appointment. But my mother in law and sister in law planned to go with me so I was comforted by knowing I wouldn't be alone. When my husband left for work it was really hard on me. I was struggling with my 4 year old's new found attitude and trying to cope with being a single parent for the summer. I knew I would get in to a routine but the first week or so was rough. And to be honest, I hadn't put a lot of worry in to our situation with the baby because I was missing my husband so much. I was still worried though. Everyone around me seemed convinced everything would be fine. Part of me thought that too, but part of me was still worried.

Finally the day had come for the appointment in Anchorage. My mother in law and sister in law and my baby nephew made the long drive to the big city. We had a nice lunch at Red Robin and had planned to do some shopping once we go the news that everything was okay. I was nervous. Really nervous. We got to the appointment and I filled out the necessary paperwork and soon we were all three in the ultrasound room with my belly exposed, waiting for the doctor to come in. She assured us in the beginning, most of the time these checks show that everything is just fine. That is what we were all hoping and praying for.

She began the ultrasound and from the beginning I was uneasy. She wasn't the friendliest doctor and she didn't really explain anything to us. She was narrating measurements and information to a nurse sitting at the computer. We heard things like, spine is seen (whew), measurement numbers that made no sense to us, and certain organs were large or small. Still not reassuring. When we looked at the baby on the screen we saw what looked like a perfectly healthy, active baby.

And then, she dropped the bomb. She said, Okay I see a lot of things wrong. And she went down the list... I'm not sure the exact order but she said the baby was measuring small for the gestation age. The baby had lower set ears. The baby had a strawberry shaped head. The baby had rocker bottom (or rounded) feet, the baby had clenched fists. And I also had a lot of extra amniotic fluid in my uterus. All of these things, she said, are consistent with trisomy 18. Trisomy what!?!?!?! And also, she said, there is a major heart defect. So if this baby doesn't have trisomy 18, the baby will need heart surgery immediately after being born and you'll need to meet with a pediatric cardiologist. Bomb. Bomb. Bomb. At this point I know my body was shaking. I was frozen in shock. I was trying to wrap my head around what she had just said. Trisomy 18 did not sound good. And a heart defect? How?! How could the baby have so many problems when 2 ultrasounds revealed none or just a couple. How did they miss all this? She suggested that I get either a blood panel or an amniocentesis to confirm her suspicions. She also said, I've been doing this for 24 years and I'm not usually wrong. When she left the room to find out if my doctor locally could preform such a blood panel I felt myself break. The shaking turned in to sobbing and a pain I have never felt in my heart before. I'm pretty sure all 3 of us were crying. I remember them saying, I'm so sorry. I also remember asking my mother in law, what is trisomy 18? Will you please look it up? I'm not sure what she found but she told me, it's not good, sweetie. I knew nothing about trisomy 18 but I knew of down syndrome, another trisomy disorder. So what I did know was that this is not a fixable or treatable thing. This has to do with the chromosomes, and that isn't something you can change. I honestly can't remember if I was still sobbing at this point but I know that my body was still shaking uncontrollably.

The doctor came back in and informed me that my doctor's office didn't have this certain blood panel test and that her genetic counselor was out of the office that day. She is the one who handles these things. She highly recommended that I stay in Anchorage and come in the following morning to have the test done. She also explained that most babies don't survive trisomy 18 and it's not a treatable condition. It was fatal. And then she once again left us alone to process everything. At this point I realized, I had to tell my husband. He had already been standing by at work waiting to hear the news from the appointment. And now I had to try and put in to words what I had just learned. I didn't know where to start. I found myself crying uncontrollably trying to explain it all and I don't think he even got all the details, he just knew, this was bad. While we were on the phone I had the sudden urge to know what the baby was. If our baby had a fatal condition, we needed to know what the baby was. And so I asked my husband, do you want to know what the baby is? I do. And he said, yes. So my mother in law went to ask what the baby was. She came back and told me, it's a boy. And the uncontrollable sobbing began again. A boy! How can we have 2 healthy boys and this happen to our 3rd?! We were devastated, and that really doesn't even do our feelings real justice. It was so much more than devastated. My husband and I got off the phone because he needed to call his boss and find out how soon he could come back.

My mother in law, sister in law and I stayed in that room for a long time. I couldn't say exactly how long we were in there but someone came in and asked if we would like to move to an office room for some privacy. So we did. They also showed us the back exit we could leave through if we wanted to leave in privacy as well. I sat in that chair in that room for a long time as well. At this point my mind was racing with so many things. Then I realized, I needed to tell my mom. She knew about my appointment and would be waiting for news. I told her I would text if everything was fine and call if it wasn't. But I could not bring myself to call my mom. I knew that if I did, we would both be crying messes over the phone and I would never be able to calmly explain the situation. So I decided to call my dad instead. I was able to calmly explain what was going on to my dad, and he stayed calm with me, for which I am forever grateful. He told me I would need to talk to my mom and I reassured him that I would but I just couldn't yet. 

I talked with my husband again and he told me his boss was putting him on the next flight out of town. He would be there that night. I was so relieved. I was so glad that I wouldn't be going through this without him. And after that we started making arrangements for what would happen next. We needed to get a hotel room because we needed to stay the night for an 8:30 am appointment the next morning. My mother in law and sister in law took care of everything. They got all the details figured out and soon we were on our way to the hotel. By now I had the worst headache of my life. Tylenol wouldn't touch it. And even though our situation with the baby was somewhat hopeless, I wasn't about to take ibuprofen knowing that it's not safe to take in pregnancy.

The hotel bed was very comfortable and I thought for sure I would just pass out from exhaustion. But I didn't. My mind was racing. From the minute we got this news my mind was in complete control freak obsessive planning overload. I actually want to write an entire post just about all of the feelings and thoughts I had at this point, because some of them were very tough to think about at the time. But when you receive news like this your mind goes everywhere. 

We waited at the hotel for a couple of hours until my husband's flight would be arriving. By now I had felt like I had cried every tear I had left in my body. I honestly didn't think I could cry any more. I was wrong. I watched my husband make his way up the airport escalator towards us and I felt myself breaking again. When we finally hugged my strength was gone. The sobbing began again and I honestly didn't know if I would be able to stop. Somehow we managed to pull ourselves together and then we waited with my mother in law and sister in law because they were going to be taking a flight home soon. They had worked out all the details and I'm still so thankful for that. 

Now that this post has become incredibly long I think this would be a good place to stop. I have so much more to say but I want to break things up a little bit. I still haven't even decided if I'm going to make this public or not, for now I'm just trying to get down everything that has happened, my feelings, my thought process, all the details I don't want to ever forget. Because I know this story, this story that I never thought would be ours, it is ours. And it will change our lives forever.