To Be An Angel Parent

Being an Angel Parent is like having a membership to a club that no one ever asked for, but you paid a terrible price to receive. This blog is where I've written about the price my husband and I paid as we suddenly found ourselves members of this club. We wanted to write down the memories of our experience in order to preserve the story of our son for our family, as well as share our experiences in the hope of helping others who have suffered or are suffering a similar loss.

Scott and I were married October 10, 2009. Marriage seemed to come naturally to us. Its always felt like we were meant for eachother. We're the other's best friend. Of course we've experienced much in our short time as husband and wife - both good and bad - but we've been very blessed and our relationship has grown stronger because of it all. When we decided to start trying to have a baby, I didn't worry too much about anything going wrong, especially losing a child. I come from a large family so having children always seemed like second nature - easy even. The most traumatic thing we knew of were miscarriages, but even that wasn't really talked about. So when my husband and I found out we were going to lose our child it opened my naive eyes to the reality of having children. The babies who survive are the miracles because I now understand just how much can go wrong.

Despite the pain and sorrow of losing our son, my husband and I have found a lot of peace and comfort. We attribute our healing and blessings to the faith we have in our Lord and Savior Jesus Christ. We are members of The Church of Jesus Christ of Latter-Day Saints. Because of our beliefs, we have faith that someday we will be re-united with our little son someday. Death is not the end. What would be the point of living and learning if it all came to nothing in the end? We believe in God, we believe that He is aware of each and every one of us and that He has a plan for each of us to attain the utmost happiness. We also believe that in order to reach that happiness, sometimes you have to endure terrific trials and pain. How could we truly enjoy the wonders life has to offer if we've never experienced grief or pain? You can't understand one without the other. God uses tests and trials to teach us. And we try to use every experience as a way to grow closer to eachother, to family and friends, and most importantly to continue to develop our relationship with God.
 

Our son Kyden changed our lives forever. He lived for 6 months, all of it within my body. Yet he managed to touch the lives of many people and we hope our experience can continue to bless the lives of others. He's a special spirit and we feel so blessed to be his parents!

         

Weeks 1-8

Even though I was expecting it, I was still a little surprised the morning of June 27, 2011 to see two pink lines show up on my home pregnancy test. It had only been a couple of months since my miscarriage. And Dr. Brown said to wait for one normal cycle before trying again and we definitely did that. But despite the early signs, part of me didn't really expect it to happen again so soon.

I thought back to my miscarriage. It happened the morning of April 16, 2011. It was our first attempt at getting pregnant. Again, we didn’t think it would happen so quickly, but we found ourselves pregnant after our first try. I actually found out I was pregnant on April 10^th - our year-and-a-half wedding anniversary. It was a Sunday and my husband and I kept the exciting secret to ourselves for one, blissful day. Monday the 11th I was at work when suddenly struck by the most painful, intense cramps I had ever experienced. And I mean one minute I was fine and the next BAM. It hurt so bad I couldn’t sit. I left work and went home only to cry and fear what the pain meant. I didn’t even have a doctor yet. So I scrambled on the internet and found a number to call just to talk to someone. The nurse I spoke to told me to take some Tylenol, lie down, and see if the pain passes. She said I don’t need to worry unless I start bleeding.

Well, a few hours later I started bleeding. I called her back and she said we need to go to the Emergency room. I was actually in such a panic that when they asked the date of my last cycle I accidentally told them one month earlier than I meant, so they thought I was 9 weeks along when I was actually 4. Either way, they couldn’t find anything on the ultrasound. They told me either it was too early for anything to appear on the ultrasound, or I was having a miscarriage.

This is when I met Dr. Brown. The emergency room referred us to him and he saw me on Thursday. He told me most likely I was miscarrying but only time could tell. I knew that it looked bad, but still part of me hoped it would turn out okay. The bleeding had stopped as well as the cramps.

But my fears were soon realized.

Saturday morning, April 16^th, I was awoken by the cramps and bleeding, but even worse than before. The pain rolled over me in waves and the only way I got through the day was taking the pain medication prescribed by the emergency room. Needless to say, I lost the pregnancy and I was devastated. But Scott stood by me. He supported me. And we got through it. 

I remember telling family and friends how grateful I was that it had happened so early in the pregnancy – that I wouldn’t be able to handle losing a baby further along.

Well, there I was two months later, sitting on the toilet lid looking down at the pregnancy test, those two pink lines staring me in the face telling me that I was indeed pregnant. I wanted to be excited. I truly, truly did. But I just felt…anxious. Worried. Like I was waiting for something to happen. Something didn’t feel right.

Of course, I chalked it up to having miscarried so recently. Again, we didn’t actually think we’d get pregnant again so soon. But it happened and what else could we do but prepare for a new baby? We were slow about telling others. I waited a week before I set up an appointment with Dr. Brown for our first check up. It was scheduled for July 26th and I’d be nine weeks, three days along.

I was excited, but always hanging over my head was this anxiety that I couldn’t shake off. I told two of my close friends at work that I was expecting, mainly because I couldn’t keep it a secret, what with the nausea and exhaustion. One of them I told after work. We’d often hang out after work to vent about the day and get some time to talk away from sensitive ears. We were at her apartment complex sitting by the pool talking, watching her boyfriend’s kids play in the pool, when I finally plucked up the courage and told her. Of course she knew about the miscarriage, so she knew we were trying. We talked for awhile and she was excited for me –we both looked forward to being moms someday so it was fun to have one of us finally pregnant. As I left, she said, “Don’t take this the wrong way, but you don’t really seem very excited.”

I remember feeling shocked – I didn’t realize my anxiety was showing so well. I played it off saying that I was nervous because of the miscarriage. And really, it was a very valid excuse and I wanted to believe that was all. But I knew deeper down that I was just waiting for something. Something to happen.

But of course I did my best to ignore that.

Week 9

I’d be lying if I said I wasn’t nervous. I was actually quite petrified that we’d show up for our first appointment only to find out there wasn’t a baby in there. In fact, I'd spoken to my sister a couple of days before and she told me about one of her friends who went to her 9 week appointment recently only to find that the baby didn't have a heartbeat. So of course that was all I could think about as we sat in the waiting room. I mean, what if I’d imagined the positive pregnancy test? Could there really be a child growing within me? I didn’t even feel too sick yet. Just tired. And for some reason one of the strongest pregnancy symptoms I had was being able to smell/taste the plastic from Ziploc bags. It ruined many lunches.

But we were soon called back to our appointment. Because I was there only a couple of months earlier, Dr. Brown didn’t need to do as many things as normal. We really jumped right into the ultrasound to see what we could see.

I laid down and the lights went off. I tried my best to keep my breathing under control as my belly was gooped up. Scott sat at my head watching. Dr. Brown pulled the portable ultrasound closer, grabbed the magic wand and started moving it around on my belly. Then before I knew it, there he/she was on the monitor. Our little peanut. And we could SEE the heartbeat. That was the coolest thing I’d ever seen! Then Dr. Brown turned on the Doppler and we could HEAR the heartbeat. I never wanted to stop. I could have laid there the entire pregnancy and just watched that baby grow and develop and never gotten bored.

Of course that wasn’t possible and far too soon the lights came back on, Dr. Brown cleaned off my belly and he helped me sit up. The appointment went very well. For the first time since we’d found out I was pregnant, I actually had proof that a little someone was indeed growing inside me. We got to take images from the ultrasound and I didn’t want to take my eyes off them.

 

 

 

Yet even after this, I still felt that anxiety. I knew there was a baby growing, so why did I still feel so uneasy? We decided to wait until we were twelve weeks along before we told our families because supposedly, once you make it to twelve weeks the chance of miscarriage goes down significantly. We figured if we made it until then, we’d be home free, right?

9 Weeks, 5 Days

Weeks 10-11

Week 10

My work holds a yearly Lagoon trip – an amusement part located in northern Utah – every summer. This year it was held on July 30^th, which happened to be week 10 for me. Because I was pregnant I couldn’t go on any of the rides. Which wouldn't have been a problem, except I also worked with my father-in-law, so Scott’s family also goes to Lagoon every year. It’s kind of become a summer tradition. However we weren’t ready to tell them that I was pregnant yet, so I had to come up with some reason for not going on any of the rides. I fairly regularly suffer from migraines, so we decided that would be the best cover for me. Apparently I wasn't very convincing though - his family later told me they began suspecting something then. Oh well! It was a very hot day and we ended up taking a lot of breaks in the shade - which was fine by me! One of my favorite things to do at Lagoon is to hang out in Pioneer Village. There are a lot of old Pioneer houses and museums and its fun to walk around and look at history. Plus they have an ice cream shop where they sell BUBBLE GUM ice cream, which happens to be my favorite. Don't bother asking why because I don't know. I just love it!. We also decided to do one of those fun old Western pictures – one of the earliest pictures with our baby secretly in it! That was really hot and stuffy, but a lot of fun!

 

By this time the morning sickness was really starting to kick in. Just nausea, no vomiting yet. So it was getting hard to hide my early symptoms from family. But I did my best to eat and act normally. If I snacked constantly on items that didn’t make me sick, I could keep the nausea under control. Luckily that wasn't a big deal and we enjoyed the outing very much.

Week 11 

Most Sundays we go down to either my parent’s house or Scott’s parent’s house for dinner. Since our parent’s live a block apart it makes visiting them quite simple. On August 7th we actually attended church with our parents – because they live so close they’re in the same ward. It was my parent’s turn to have us over for dinner and at church I happened to ask my mom what we were having for dinner – she replied hoagie sandwiches. I didn’t think much of it until after church. Scott and I went to his parent’s house to change our clothes when it struck me – I’m not supposed to eat uncooked deli meat because of the risk of listeria which can cause miscarriage. I shared this with Scott and we had to decide what to do.

 

It was one week earlier than we’d planned, but we decided to tell our parents that we were pregnant. I left it up to Scott to tell his parents. When they joined us at their house after we’d changed, we chatted for a bit. One of our favorite things to do with both our parents is to just sit and talk. I kept waiting for Scott to finally tell them and he waited until we were walking towards the door to leave before he said, “Well, there’s something we want to tell you. Shaylee’s pregnant.” I got a kick out of it hahah. They were excited and that’s when his mom said she suspected something at Lagoon. It felt good to finally tell them. We asked them not to say anything though because we wanted to wait a little longer before we started telling everyone.

 

When we got to my parent’s house they had already started eating – we told them not to wait. We walked in and I got nervous about how I was going to tell them. I had planned on doing some fun announcement but because we found ourselves in this predicament we had to improvise.

 

My mom was sitting at the kitchen table; my sister-in-law was at the sink. My mom told us to dig in and I said I can’t. She looked confused and asked why, and I said I can’t eat lunch meat. My mom still looked confused and my sister-in-law turned around with a sly smile on her face and said, “Why can’t you eat lunchmeat?” I just smiled back and looked at my mom as it dawned upon her. She smiled and asked, “Are you?” and I nodded. We announced it to everyone else there – and I called my sister to tell her the news too (she lives in Oklahoma). She’d suspected for awhile as well. I guess I’m just really bad at hiding it hahah!

 

We shared our ultrasound pictures because I carried them with me wherever I went. And it felt so good to share it with loved ones! I enjoyed being able to compare experiences and get advice. And in the end it was a good thing we told them because the following week Scott and I were going to Lake Powell with his family and we felt they should definitely know because I wouldn’t be able to keep it a secret being with them 24/7 for 5 days!

Week 12

Lake Powell is one of my recently acquired favorite vacation destinations. My first trip to Lake Powell was when Scott and I were dating, and I fell in love instantly (I mean I fell in Love with Lake Powell - I was already in love with Scott!). There’s something truly stunning about the beautiful red desert mixed with water! It’s absolutely stunning and I look forward to visiting once a year. We’d love to have our own boat someday so we can repay our in-laws for always bringing us!

We went from August 17 – 21^st. This year was obviously a little different. I had to be sure I snacked constantly in order to stave off the nausea. I also drank plenty of water – Lake Powell is cruelly hot in August! I was too exhausted to try and fish – it seemed every time we stopped I had to take a nap. But boy was it fun! It’s such a different world that it makes all your other cares disappear for a few days. Wonderful.

This trip was when I really discovered my particular craving for McDonalds. Before this pregnancy I rarely if ever ate anything at McDonalds. But the only thing that seemed to truly satisfy me were chicken McNuggets with hot mustard sauce. All other forms of chicken made me extremely ill, but for some reason I was okay with these. Maybe that’s saying something…anyway, we had it for dinner I think two or three times while we were down there and I was perfectly content with that. It made me a little sad that the other restaurants we normally enjoy weren’t as satisfying due to my "morning" sickness.

 

 

 

Overall it was a fantastic trip! I was a little paranoid about the baby, but I did my best to just relax and enjoy some much needed time off.

Weeks 13-17

The next few weeks were pretty uneventful. I did have another appointment in there – August 23^rd. It was fairly routine, although they did tell us that at our next appointment they would offer some blood testing. The AFP test to be exact. Basically this is a screening test to see whether your baby is at risk for chromosomal disorders. It is not a diagnostic test – it simply tells you if you’re at risk or not by measuring the amount of AFP in your blood. Typically its recommended for older women because they are usually more at risk for these things.  But they wanted us to think about it before our next appointment since that’s around the time when they can administer the test.
 
The only other memorable thing was we got to hear the heartbeat again! I loved that sound. I still had a hard time imagining a baby growing in me. I wasn’t showing yet. But I did begin throwing up – I don’t remember exactly which day, but it became common for me to throw-up a few times a week. Ugh so terrible. But I thought it was a good sign – that the baby was growing healthy and strong. Its what I was told at least. As a general rule, the sicker you are the better for the baby. I tried using this as another argument against my anxiety about the pregnancy and it kind of helped, but not much.
 
I was working two jobs at this time – my full time job as a marketing assistant for Weir Specialty Pumps, and a Jewelry Consultant for lia sophia. My lia sophia stuff had slowed down after the miscarriage and I was trying to decide whether or not I wanted to keep it going. One of my roommates from college, Janae, also sold lia sophia and we decided to do a booth together at a bridal fair September 10th. It was actually a lot of fun and we got a few sales from it. I also found out that Janae was pregnant with her second baby – a few weeks behind me! It was really fun to share that together. She’s been such a wonderful friend! I love her to death!
 
There were still a lot of people we hadn’t told about the pregnancy. We announced officially on facebook (don’t you love how if it’s on facebook, its “official”?) on August 23, 2011. Here’s what I put:

Shaylee and Scott

were sitting in a tree,

K-I-S-S-I-N-G!

First came love,

then came marriage...

and SOON they'll have a BABY in the baby carriage!

Due date: February 25th 8)

Again, it felt good to not have to hide it anymore!

The picture on the left was taken at 15 weeks, the picture on the right was taken at 17.5 weeks.

                                

Week 18

Several things happened this week. We had another appointment – September 27^th. At this appointment they asked if we wanted to do the AFP test. All that would be required is a blood draw. Scott and I had talked about it and even though we didn’t fit into the “at-risk” category, we decided to do it. We figured if our baby WAS at risk, we’d rather know about it as early as possible so we could prepare for whatever was to come. We heard the heartbeat again AND we set up the appointment for our big ultrasound! Of course, the most exciting thing to happen yet!

The ultrasound appointment was set for October 6 at 9:30am. I went and had my blood drawn for the AFP test and didn’t give it a second thought. We left the appointment looking forward to the 6^th of October so we could find out the gender of our little one!

I also finally announced at work that I was pregnant. After my appointment I went home and made a big poster board so people could guess whether we were having a boy or a girl. I hung it up outside my cubicle after everyone had gone home on the 26th so it’d be there the following morning. People slowly started walking by and seeing it and word eventually got around. It only took me 18 weeks (almost 19) to finally tell everyone we were pregnant!

Week 19

Monday, October 3, 2011
I received a phone call from my nurse Deb while at work. As you may remember, at our last prenatal appointment we’d opted to do the AFP test. I was surprised by the call because I had honestly forgotten we’d done the blood test and certainly didn’t expect to hear what she told us. “You had an abnormal result on your test.” But she was very sweet and tried valiantly to reassure me, saying not to worry because they get a lot of false positives with this test and most likely it would be nothing serious. She was hoping for a miscalculated due date or something harmless like that.

Bless her for being positive, but in my heart of hearts I knew something wasn’t right. Actually, I remember thinking, “This is it. We’re going to finally find out why I’ve been feeling so anxious.” Little did we know, we were about to find out what God had been preparing me for.

Deb made us an appointment for Thursday October 6^th – the same day as our other ultrasound – with Maternal Fetal Medicine at St. Mark’s hospital (where we planned on delivering). They were specialists who would go over the test results and do an ultrasound to see if they could find a cause for the abnormal results. Scott and I tried not to worry – honestly we were more excited to find out the gender of our little one. And if our child was at risk for being a special needs child, we were more than ready to accept him/her and prepare for whatever needs our baby might have. After all, this is why we’d opted to do the test in the first place. We had this appointment at 8:30am and then were scheduled to go to our regular ultrasound with our doctor at 9:30am.

Later that day we drove down to Riverton because Scott was playing in a fall softball league with some old high school buddies. My brother Taylor played on the team too so my parents and a couple of other siblings ended up coming as well. While we were watching I told my parents about the phone call and how we needed to go see a specialist Thursday to see if there was anything wrong with the baby. I tried to tell them it wasn’t anything serious but it’s surprisingly difficult to convince people not to worry when they can hear the trembling in your voice from trying not to cry yourself.

My mom suggested we come over after the game and receive a Priesthood blessing. Scott and I thought it was a good idea, so we went over. I decided to have my dad do it. I don’t remember the exact words, but it was a blessing of comfort. Letting us know that our Heavenly Father was aware of us and that He hasda plan for us. The overall feeling I had was not that everything was fine, but that everything would work out as it should. I did feel comforted and was grateful to have the Priesthood in my life. I was also glad we’d told our families so they could be aware of our situation.

Thursday, October 6, 2011
It was a dark, rainy, gloomy morning – which did little to calm my nerves. We got up, got ready and headed to our appointment. Once we got to the hospital, it was a little confusing trying to find the MFM office – I actually had to call once we got inside to find out where the room was. When we finally found them, I had to fill out copious forms about my genetic family history, which I admit I am no expert. Then we waited. I grew more nervous by the minute, but finally we were called back. They had me lay on the bed for the ultrasound, gooped my belly up, and the technician started the ultrasound.

Scott sat underneath the big screen they had set up for me to watch – he was watching the smaller screen by the tech. I remember how worried I became the longer I laid there because the tech was so quiet. This was my first real ultrasound and it was with a complete stranger. She didn’t say anything, just continued to make different measurements. And at this point I wasn’t familiar with ultrasounds so I was watching the big screen above Scott’s head without the slightest idea of what we were looking at. Finally I asked the only thing I could think of, “Are we allowed to ask if you can tell the gender?” She kind of laughed and said of course you are. She went quiet again for a minute while she searched, then said we probably wouldn’t be able to tell because of the way the baby was positioned. I tried to laugh because I really should have known. Our silly little baby had his/her legs crossed and was positioned in such a way that the tech really couldn’t see anything to hint at a gender. I always knew my kids would be a tease, even in the womb.

She went quiet again, finished with her measurements, then stood up to leave the room.

“There’s some swelling in the baby’s stomach and head, which isn’t normal. I’ll go get the doctor and he’ll explain everything to you.”

The ultrasound technician walked out of the room, leaving me and Scott alone. I looked over at him and felt the tears budding behind my eyes. I tried valiantly to fight them off, but despite my best efforts a few tears escaped. I lay on the uncomfortable bed, resting a hand gently on my stomach thinking of what might be ailing our unborn child as I felt the bump growing there. Scott said, “Why are you crying?” And all I could reply was “Because I’m scared.” He wasn’t asking because he wasn’t scared himself – we both were. He was putting on a brave face for my sake.

After that we sat in silence, waiting for the doctor to arrive and tell us what “some swelling” meant. I knew this was it. That our lives were about to change forever. I just didn’t know how drastically.

When the doctor entered, he introduced himself, and then asked what pregnancy this was for us. I told him it was our first pregnancy, and he groaned in a way that did not reassure us. I thought he was going to explain the ultrasound to us – which is why the nurse had me stay laying down with the gel on my stomach so he could take a look himself – but instead he helped me sit up so my legs hung over the edge of the table, then he sat on his stool and looked at me. “You have a greater than 95% chance of losing this baby.”

Our world stopped as a sob escaped me. The tears that I’d been fighting were released to stream freely down my face as I tried to absorb what little information the doctor could give us at this point. I couldn’t quite grasp how “some swelling” had turned into a greater than 95% chance of losing our baby. The only thing I could focus completely on was the fact that most likely I would never meet my child alive in this life - that I didn’t even know how much longer he or she would live. It felt surreal. I didn’t want to believe it was happening. I just kept waiting for them to tell us their plan of action to save our child.

I was a little shell-shocked to say the least, so much of what he told us didn’t entirely stick. He said our baby had a lot of fluid buildup in his abdomen and neck, which was most likely caused by the lymphatic system being blocked due to not forming correctly. He guessed the cause was due to Down Syndrome or Turner Syndrome – leaning more towards Turner. It’s a genetic abnormality that only affects female’s because it has to do with one of their X chromosomes being partly or completely missing. Because we were unable to determine the baby’s gender on the ultrasound, we didn’t know for sure, but the doctor guessed we had a little girl.

He then offered an amniocentesis – which going into the appointment I was dead set against because it carries a small risk of miscarriage and I didn’t want to do anything to risk the baby. Well, with less than a 5% chance of survival doing nothing, and the huge question of what’s causing this hanging over us, we felt the advantages to the test far outweighed the risk, so we had it done. Luckily all went amazingly smoothly, though I hope that was my first and last amnio – having a large needle stuck through my stomach into the uterus really isn’t the most pleasant experience in the world. But we needed to know what risks there were for future pregnancies. If a genetic disorder was detected, we needed to know. They set us up for a check-up appointment in two-weeks time. The impression we got from the doctor was we’d be lucky if the baby made it that long.

To say we left that appointment completely heartbroken doesn’t even come close to covering the emotions we felt. Our families were pretty anxious to hear from us – as we were driving home I called my mom first and told her the news. She was so heartbroken for us. She said she’d come by to see us as soon as she could. I also called my older sister and told her. My sister and I are 18 months apart and we are very close. We shared a room all growing up and even a couple of years in college. She had two children at the time and she'd actually told me a few weeks previous that she was expecting her third. We didn't talk too long initially, but she called me later when she was able to get away from her kids so she could cry openly with me. Part of me felt guilty about having to tell everyone such terrible news, but on the other hand I'm so eternally grateful to have such a wonderful family. They rejoice and celebrate with us, and cry and grieve with us.

I called my boss as well to tell him I wouldn’t make it in. I was sitting in the car in the Smith’s parking lot. We stopped on our way home so Scott could buy The Lion King because it was newly released on blu-ray. I’m a Disney geek and we thought it might help to have something comforting. Anyway, I called my boss in tears and told him I wouldn’t make it in and probably wouldn’t be in for a few days. I was crying so hard I could hardly talk. He later told me I kind of scared him, but he understood. I guess he and his wife have had their own share of pregnancy problems, so it was good to have a boss who understood our grief.

My friend Nicole from work, the same one who noticed I didn’t seem excited when I first told her I was pregnant, stopped by after work to see how we were doing. She also had to grab some items from me so it worked out. She didn’t stay too long because she didn’t want to intrude, but I really appreciated seeing her! My mom actually arrived before Nicole left, and my dad arrived shortly thereafter, so we had  people there to comfort us most of the afternoon into the evening.

Later in the afternoon I was washing my hands in the bathroom when my visiting teachers popped into my head. I stood there for a moment, wondering when I might hear from them. I’d only told them a few weeks ago that I was pregnant and it hurt knowing I’d have to tell them this news. But they were such wonderful women and good friends and I knew I needed them at a time like this.

About 10 minutes after I had these thoughts, I was sitting on the couch between Scott and my dad when my phone went off. I had a text message - from my visiting teacher, Emily. Here’s what she said: “Hey Shay. I was just thinking about you. How are you feeling today?” She certainly wasn’t prepared for the news I had to give her, but she was right there for me. Later in the evening she and her husband came over and brought us Swiss chocolate and talked to us for awhile. I asked her what made her text me and she laughed and said she just thought about me and decided to text me and see how I was doing. It was such a simple prompting on both ends, but Heavenly Father knew I needed her, and she was there for me.

I believe people are put into our lives for a reason and we had many experiences with that during this trial. Quick back-story - I graduated from BYU’s animation program in 2008. One of my fellow animation students was Tyler Stott. We are both part of an online art community called Deviantart. Before we found out about our baby’s condition, I happened to comment on some of his artwork and he replied to my comment asking how I was doing. Back to the evening of the discovery of our baby's condition, I was checking my email and saw his comment and felt I should tell him what was going on. Tyler then opened up about his own daughter, Abigail, whom they had lost six months ago. I won’t go into too much detail because its not my story to tell, but when they were 20 weeks along, they discovered that their daughter had several birth defects – Acrania, cystic hygroma and several others. In April (on Easter!) she was born and after having her for five days, she passed away at home in her father’s arms. Over the next few weeks he and I corresponded and I eventually started emailing his wife Meg. I will go into more detail during the later weeks, but I felt so blessed to have them come into my life. Their experience helped Scott and I as we faced our own challenges.

By the end of that day I was completely drained. I don’t think I’d ever cried so much in my life and I actually started getting a migraine because of it. All I know is, if I didn’t have Scott to lean on, I wouldn’t have been able to keep going. And our family and friends were such a support. Its amazing how many earthly angels are put in our path to help us through our trials! What a testimony builder that one day was!

 

Week 20

Sunday, October 9, 2011
The Sunday following that fateful doctor's appointment was a Fast Sunday. I actually felt the evening of our appointment that I needed to bear my testimony. I admit, its not something I do regularly because I hate being the center of attention and always get so nervous. But the more I thought about it the more I knew I needed to. I had a calling at the time as ward chorister. My visiting teacher Emily offered to lead the music for me that week so I didn't have to be an emotional wreck in front of everyone. I deeply appreciated her doing that for me and was able to sit with Scott and cry quietly in the pew.

As time was turned over to the congregation for testimonies, I was one of the first to get up. It's all kind of a blur now, I can't entirely remember what I said. I remember briefly telling a little about our situation - which quickly explained why I was so emotional. But I didn't want to dwell on that - its not why I got up. I wanted to express the immense gratitude I felt to my Heavenly Father for all the blessings we'd already received through this trial. I didn't feel cursed, I truly did feel blessed and loved. We'd seen the love immediately after discovering our son's condition and we felt that no matter what happened, our Father in Heaven had a plan for us and we wouldn't be left alone. I also expressed my testimony of Visiting Teaching and what an inspired calling it is. I expressed my love for my Savior and the blessing of having the Gospel in my life. To know that no matter what, my family is eternal and if my son were to pass away, that we'd see him again.

I didn't do it for sympathy. In fact, I debated for a long time whether I should write this down or not. But I decided to do it, because expressing my testimony helped to strengthen it. I needed to get up and share that because it helped set the atmosphere for the rest of our trial. We decided to put our trust in God and saying it aloud help solidify our decision. It also allowed us to open up to a lot of ward members. Even though we'd been in the ward for awhile, we didn't have many friends. We'd tend to keep to ourselves, doing our calling, but not stepping too far out of our comfort zone. By sharing our experience we made some wonderful friends and allowed for others to get to know us. I am grateful I shared my testimony. I needed the love and support from our ward and they were more than ready to give it!

Tuesday, October 11, 2011
I ended up taking three days off work to compose myself and come to grips with our situation. I went back to work on the 11^th of October and it was hard. How could I focus with so much on my mind? I spent a lot of my free time trying to figure out what was wrong with my baby. We weren’t given many specifics to go off of other than Down Syndrome, and Turner’s, so I started googling our baby’s symptoms and came across two things – Hydrops and Hygroma. They fit the baby’s symptoms but I prayed this isn’t what ours had – every website I went to said they were terminal conditions. I guess that’s what I got for self-diagnosing. I stopped searching after that and decided to wait to hear more information from the doctor.

We were told to expect preliminary results from the amnio on Monday the 10^th – mine and Scott’s two-year anniversary. But it turned out we didn’t get the results until Wednesday the 12^th. The nurse who called gave me the FISH results (that’s the name of the preliminary results) and she said so far everything looked good – they didn’t detect any major chromosomal abnormalities. Then she asked if we already knew or wanted to know the gender. I felt excitement course through me as I told her we definitely wanted to know.

A boy. A precious little boy.

I smiled from ear to ear as I hung up. Even after everything, I felt myself filled with so much joy! Have you seen the 2003 Peter Pan, directed by P.J. Hogan? You know the part when Peter starts…glowing at the end after Wendy kisses him? I felt like that. Like I was literally glowing and nothing could take this happiness away from me.

A son, our baby was a little boy. No matter what condition he had, he was a HE! Our son. Our little boy! How was that not news worth celebrating? I ran outside (because there was really nowhere private to have a conversation at my work) and of course called Scott first.

As happy as this news was though, the joy started to fade and was quickly replaced by confusion. Honestly, we were expecting to hear we had a little girl with Turner Syndrome. But to be told they didn’t find any problems and that it was a little boy was rather surprising. I called my sister and parents as well and told them all I knew, then I went back inside.

I couldn’t focus much after that so I did the only practical thing. I left work early to call the nurse back. When I told her we were expecting them to have found something, she looked at my file and realized why. She was kind and explained that the FISH report only looks at certain disorders – Down, the Trisomy’s, and any gender related disorder like Turner. She sympathized with me to help calm me down and let me know that yes we were still in limbo, but she’d talk to the doctors and see if they could come up with anything else. She also said that at our next appointment they’d do a follow-up ultrasound to check up on him and also they should have the full amnio report to go over with us. I hung up feeling more calm, but still frustrated.

Week 21

I felt a sense of peace come over me after a few days. Again, not that everything would go away, but that everything would be okay. I received another blessing – this time from my father-in-law. It was another blessing of comfort, and things were said that helped me keep going - like knowing that my Father in Heaven is aware of our situation and that He has a plan for us and our son. Who better to trust with the well being of your child than Heavenly Father? We knew that whatever happens, is supposed to happen and that all would be well.

Wednesday October 19^th, the doctor called us back to inform us they had our full amnio report back and that everything was normal – there were no chromosomal abnormalities. This was a huge relief in regard to our future pregnancies because it means we hopefully shouldn’t see this happen again. Now when it comes to our son’s condition, it meant we knew what wasn’t causing his condition, but we still had no clue what was causing it. All we knew was something physically went wrong at some point in his development in order to cause his condition.

Thursday, October 20, 2011, we went to our second appointment at MFM – I was 21 weeks, 5 days. The same technician did our initial ultrasound and she printed out some darling pictures of our little boy. She said the swelling seemed about the same, maybe a little worse, then we waited again for the doctor.

It certainly was a lot easier going to this appointment knowing what we were facing. Being blindsided like our last appointment was one of the most difficult situations I’ve ever experienced – one I never want to experience again. At least we could ask some questions this time. We had a different doctor who was a lot easier to deal with. She actually went through the ultrasound and showed us what was going on with our little boy while answering more questions.

Our son had what’s called Hydrops Fetalis – or Fetal Hydrops. This was what I feared. The Wikipedia definition states,  

“Hydrops fetalis is a condition in the fetus characterized by an accumulation of fluid, or edema, in at least two fetal compartments.”

By fetal compartments it means things like the abdomen or the skin. Our baby had it virtually everywhere possible for there to be fluid buildup. He also had what’s called a Cystic Hygroma.  Again, referring to Wikipedia,

“A cystic hygroma is a congenital multiloculated lymphatic lesion that can arise anywhere, but is classically found in the left posterior triangle of the neck. This is the most common form of lymphangioma. It contains large cyst like cavities containing watery fluid. Microscopically cystic hygroma consists of multiple locules filled with lymph. In the depth the locules are quite big but they decrease in size towards the surface.

Cystic hygroma is also known as lymphatic malformation. Nowadays, the medical field prefers to use the term lymphatic malformation because the term cystic hygroma means water tumor. Lymphatic malformation is more commonly used now because it is a sponge-like collection of abnormal growth that contains clear lymphatic fluid. The fluid collects within the cysts or channels, usually in the soft tissue. Cystic hygromas are filled with lymph which is the fluid that travels in the lymphatic system of the body. Cystic hygromas occur when the lymph vessels that make up the lymphatic system aren't formed properly.”

His was located on the back of his neck, and it was incredibly large. This is what changed the most throughout our ultrasound visits, and was the most shocking thing to see. It was described to us as basically a fluid-filled tumor, caused by the lymphatic system not being formed correctly.

 

This doctor didn’t have much hope for our baby either, but she put it in a much kinder way. “This is one of the reasons life isn’t fair,” she said. I asked if she’d seen this before and she told us its not unheard of – she has seen it several times. But it is still pretty uncommon. She also said she’s seen a couple of babies survive, but for the most part, it is a terminal condition.

We were told if our boy survives to 25 weeks we could start talking to doctors about how early he could be delivered and stand any chance of survival. She also said that a lot of times doctors will write off these babies, expecting them to pass any day, but that the babies surprise them and hold out much longer than anyone could have guessed.

My son was a fighter. I knew it then and I still believe it now. He had a reason to be here and we knew that he wouldn’t leave until his plan was fulfilled. The fact that he was still going so strong at that time with how severe his condition was made me have no doubt he had a purpose. Did we know how long we’d be blessed with his presence? Of course not. But every day we had with him to that point was a special miracle and we looked forward with gratitude to however long we’d have him in our lives.

Me at 21 Weeks, 5 Days

Week 22

And so the waiting game continued.

We had our first appointment with Dr. Brown since our baby’s condition had been discovered. It was really difficult going because the last time we’d been there everything was fine in our mind. We thought at this point we’d be looking forward to tracking a healthy baby’s progress. Now we didn’t know what to expect. And the waiting room suddenly wasn’t so friendly. It scared me. We had so many questions and no answers. The questions drifted through my mind as we sat in the waiting room, silently watching other women and couples come and go. How would we know if and when the baby did pass away? And what were we supposed to do? Would I go into labor?

Luckily, Dr. Brown alleviated a lot of questions. At least, as many as he could. He offered to have us come in on a weekly basis in order to listen to the baby’s heartbeat. I was very grateful for that – at least we’d be on a regular schedule so we’d know if anything changed with the baby. But it struck me that what we were really doing was listening for our baby’s heart to stop beating. I never would have expected my prenatal appointments would turn into such a nightmare. Instead of looking forward to the next milestone we'd come to every appointment wondering if this would be the day our son's heart would be still. I was grateful that at least we had a way to know how he was doing in there. It made me feel slightly less helpless. We were taking life one week at a time.

22 Weeks

Week 23

My sister Brittney and her family came to Utah to visit from October 29th to November 5th and it was so wonderful to see them! I know I mentioned earlier how close my sister and I are, and I really needed to see her with everything that was going on.

Halloween has always been one of my favorite holidays. Before we found out about our son’s condition, I planned on making a skeleton costume with a little skeleton baby on the stomach that I found on pinterest.

 

But afterwards I felt it wasn’t really appropriate anymore. I wasn’t planning to dress up at all but last minute I decided to be a witch. Before we got pregnant Scott referred to my being pregnant as having a "baby brewing", so I made a cauldron that said “Baby Brewin’” on the side. Originally I was going to wear it over my tummy but because I decided last minute (literally, I came home from work and threw it together) I couldn’t make it as detailed as I wanted. Scott and I spent the evening at my parent’s house since Britt and Sterling were in town.

 

My nieces and nephews were all ADORABLE. Micah was a robot, Kiah was a rockstar, Kade was a dragon, and Emery was a witch. How cute are they?! I went trick-or-treating with them too and that was fun. I love Halloween!

 

November 3^rd rolled around and I had that as well as the 4^th off work because Britt was in town. Luckily our MFM appointment happened to fall on the third, so I was especially excited they were here for the week because it meant Britt, along with my mom and Scott’s mom, were able to come with Scott and I to our ultrasound! We had a different ultrasound technician this time. She was nice and I enjoyed the fact that she talked us through what she was looking at so everyone in the room could see. By this point I was actually getting quite good at discerning what was on the ultrasound screen…that meant I’d had too many ultrasounds done. But it was good to see that he still had a strong heartbeat and his condition hadn’t changed much…well, it hadn’t gotten worse. But it hadn’t improved either. I was actually terrified that this would be the appointment his heart wouldn’t be beating, but he was still going strong to show off for his grandma’s and aunt Britt!

We also got a chance to see our little boy with the 4D ultrasound, which we hadn’t done before. It was overwhelming to get to see his face, even if it wasn’t perfectly clear. And to see his little hands lying across his stomach. I cried a little. There was my little fighter!

 

I started getting lightheaded lying on back, so the tech had me roll onto my side. I actually got pretty close to fainting! She left the room to get the doctor and we all talked for a few minutes while we waited. When the doctor came she described his condition in more detail –how his skin is so edematous that it’s not connected to his bones. Basically every part of his body is just…floating. She said his current condition is incompatible with life. However, she did set us up with an appointment at Primary Children’s hospital for a Fetal Echocardiogram – a detailed ultrasound of his heart. Heart defects are one of the most common causes of Hydrops, so that’s why we were headed there. We set up another appointment at MFM for the 23^rd of November – the day before Thanksgiving.

 

After our appointment, My mom, Britt and her family, and Schy with Micah met up at our house, since Sterling had never seen it. We didn’t stay long – it was cozy for two people, but get more than four and it starts to get crowded really fast hahah. We then headed down to temple square! Its sad to admit, even though Scott and I lived 5 minutes away, we hadn’t actually visited Temple Square for quite awhile. It was fun spending so much time there. We ate at The Lyon House Pantry, which was super yummy! Then we went to the top of the Church Office Building. It was fun watching the kids look out the windows at the valley, and it was a perfect day to be up there! So clear! We walked around temple square and went into the south visitor’s center so Britt and Sterling could see the awesome replica of the inside of Salt Lake Temple. Then we went to the North visitor center, and finally we made our way over to the Church History Museum. I was so exhausted by this point that I had to sit at every opportunity. But I loved going there!

 

The rest of the evening was spent at my parent’s house. Scott and I drove Kade home so Britt and Sterling could return their rental car. He was such a well-behaved little gentleman! And he fell asleep on the way down hahah. We must have worn him out!

Friday was more hanging out. We went to a few stores, but mostly stayed at my parent’s house relaxing. Time went by way too fast! Before we knew it, we were saying goodbye to Britt and Sterling. But we were so happy to spend time with them!  Before they left, Britt and I took a picture together because we were both pregnant at the same time. I was so grateful Britt and Sterling could come and “meet” our son while he was still alive. We knew it was the only chance they’d have with their unborn nephew.