Wednesday, December 19, 2012

Update 2

Our IVF clinic called and said that we have 6 embryo's. They sent the DNA to the lab and we are just waiting for the results. Since it is the holidays, we don't know when we will get the results. We are hoping to hear back in January. So for now, we are just going to enjoy this time of year and our amazing, fun kids. Merry Christmas and a Happy New Year!!

Thursday, December 6, 2012

Update 1

Monday I had another doctor appointment and it was pretty much the same thing, blood draw and ultra-sound. The doctor did say that my ovaries looked perfect and that if he had ovaries and was going through IVF, that's what he would want his to look like. He is funny. They told me that yes Monday night was the last night of shots, but there was an additional one that night that had to be injected at precisely 11:45 pm. So, Monday night I gave myself my last 3 normal shots and prepped Chet in the fact that he had to give me the last one later that night, since it needed to go in my back, hip area. But, luckily for Chet, Lacey showed up to save the day. She gave me the hCG shot with the very long needle and Chet again left the room. I'm so thankful for Lacey. Tuesday was a great day of no shots and just a little anxiety for the next day. Wednesday was egg retrieval day. Luckily I was put half-way under and slept through most of the procedure. I woke up feeling sore and crampy, but also excited. After a little while they came and told Chet and I that they had gotten 23 eggs. We were thrilled and amazed. They were going to fertilize the eggs later that day and call us the next day, to tell us how many took. We left and I slept most of the way home and then when I got home, I got into bed and slept most of the rest of the day. I was still having cramps. Today, I still feel crampy, but it is getting better as the day goes on. The doctor's office called and said of the 23 eggs, 18 were mature and of the 18 mature ones, 15 of them were fertilized. She then said she would call on Saturday to let me know how many of the 15 get to the 8 cell stage. I'm grateful for all of the support that we have through this process and am excited to hear the news on Saturday. I'm grateful for the amazing support that we have at the IVF clinic, they made Wednesday as comfortable and safe as possible. I'm grateful for our amazing friend Emilie who watched Layla for us on Wednesday. I'm also grateful for a husband that takes over as mom and dad, when I do not feel well. He truly is amazing.

Wednesday, November 28, 2012

Newest Adventure

When Dayson was first diagnosed with cystic fibrosis, we were living in Phoenix and his CF clinic was in Phoenix Children's Hospital. His nutritionist at the time was pregnant with her first baby. She was super cute, fun and very helpful with teaching us how to give Dayson his enzymes and getting him on the correct food plan. We found out later that she had gotten pregnant through IVF because her and her husband were both carriers for cystic fibrosis. So they did IVF and tested the embyro for cystic fibrosis before they implanted it. I thought that was so interesting because I had no idea that was even possible. I also didn't think much about it, because at the time, I thought we were done having kids. When I was pregnant with Layla and after she was born, I again thought that we were done having kids, but then when Layla was 6 months old, it hit me that our family was not complete. There is one more out there. But how we were we supposed to bring the last one to our family? I was not comfortable with just rolling the dice again and getting pregnant on our own, so the other 2 options were adoption and IVF with PGD. We thought and prayed for months and months. In April of 2012 we went to the IVF Doctor that our pediatrician had used herself and recommended for us. We both felt extremely comfortable with this doctor and felt like this was the way to go, but we didn't know if we should try to test for Meckel-Gruber and cystic fibrosis or just cystic fibrosis. So after talking to two different geneticists we found out that trying to test for Meckel-Gruber with out knowing the exact DNA because Hope was not tested, was trying to find a needle in a haystack. So, after months of talking and praying we decided to go ahead with IVF with PGD and just test for cystic fibrosis. We had a doctor appointment Saturday to make sure everything was on track to start the process and everything did check out fine. So Saturday night was the first night to give myself shots. My friend Lacey came over to help me, since I was so nervous, she was very sweet to come over and coach me through it. Chet stayed in the other room, he has a tendency to pass out around needles. It went pretty smooth, and Sunday night went even smoother and I was able to do it by myself and feel confident about it. Monday and Tuesday nights were the same two shots and then I had another Doctor appointment today. Today's appointment was a blood draw and checking to see how many follicles I have. Everything checked out right on track. I continue with those same two shots for the next several days and today we added a pill to take twice a day and in a couple of days we will add a third shot. I'm so grateful for modern medicine and science. When Dayson was diagnosed with cystic fibrosis we were made aware that 95% of males with cystic fibrosis are sterile.What we didn't find out until a couple of months ago, after we had started down the path of IVF, was that the "sterile" was actually a natural vasectomy, and that most CF males still produce sperm, but it just doesn't come out with the semen. So that means that there is a process of extracting sperm from the male and by means of IVF, the male with CF and his wife can actually have a baby using this method. For some reason, after I learned this information, it made me feel like us doing IVF now, will maybe someday make Dayson more comfortable with it if he and his wife decide to go down this path. I'm so excited to go through this process, because I am learning so much information that I never would have thought about had we not had to go through this and I feel like we will be able to help others in the future that need to go through anything similar. I'm so thankful for the IVF doctor and all the staff at the clinic. I'm so thankful for a husband that is so supportive and grateful that we are always on the same page when it comes to big life changing decisions. I'm grateful for a loving Heavenly Father that takes the time to listen and answer our prayers. He truly has been a huge part in all of our families decisions and I feel so blessed because we have always tried to do what He wants us to do. This is an exciting time for our family and I am happy to share it with everyone.

Saturday, November 10, 2012


I can not tell you how much joy and laughter this little miss has brought into our home and family. She is sunshine, love, laughter, sweetness, naughtiness, adorable and so much fun! But she almost never came to our family. After Dayson was born, I was sure that we were done having kids. It wasn't until Dayson was about 2 years old that I thought maybe there is one more out there, but not anytime soon! Chet and I were super busy with the business, there was no possible way we had the time, or energy for another baby. When Dayson was about 3, I couldn't stop thinking about having our next baby, and for some reason I knew that she would be a girl and that she would be healthy. But I wasn't ready yet. We had moved to Pomerene and lived in a smaller house and we were wanting to build, so I kept telling Chet, we can get pregnant when I see the walls of our new house up. But then we kept having setbacks on our new house and construction hadn't even began and every month that went by that I wasn't pregnant, the sadder I got about it. So finally, after 3 months of being super sad that I wasn't pregnant, when we were up in Alaska on vacation, we found out that we were pregnant. We were both thrilled and excited and so happy. One of the biggest blessings that Heavenly Father has given me was the peace and knowledge that she would be a girl and that she would be healthy. I was able to just focus on being pregnant, because I was pretty certain that this would be the last time that I would be pregnant. I was able to just enjoy the entire experience, and had so much peace. When we went to the ultra-sound to make sure she didn't have meckel-gruber syndrome and to find out the sex of the baby, again, I was at complete peace. The ultra-sound confirmed that she was healthy and that she was a girl. To others around us, it was happy news and a relief, but to me it was just confirmation of something I already knew. We also chose to not get her tested for Cystic Fibrosis through amniocentesis. We knew that Cystic Fibrosis was now a newborn screen in Arizona, so we felt like that would be sufficient for us. I was due on February 22nd and had a normal doctor visit on February 3rd and at that visit the doctor told me that I had preeclampsia and would have to deliver my baby that day. Scary! I wasn't quite ready for that. I had everything I needed for my baby, I just hadn't packed a bag for me for the hospital. But Chet was able to get everything that I needed and met me at the hospital a couple hours later. Everything went really well and smooth and she was born right before midnight. She was absolutely perfect. She was beautiful. She was sweet. She truly was an angel baby from day one. When she was about 10 days old, we got the call from her doctor that the tests came back and that she did not have Cystic Fibrosis. This call just confirmed something I already knew, but when I told my mom, she started crying and I literally saw a weight being lifted from my moms shoulders. I was shocked to see how relieved she was, because I had been telling her all along that she was fine. It truly was a miracle that she was healthy in every way. I'm so grateful for that miracle every single day. Layla was a really sweet baby and a good baby all the way until about 16 months of age :) Then she started coming into her own little person. Now she is 21 months old and is NOT happy when she does not get her way. But she is still mostly so much fun and a ball of energy and laughter. We have so much fun with her and our lives would be so boring without her. I remember telling everyone that I would talk to how much I love her and I would tell Chet every night after we would watch her sleep for a minute before we went to bed "I'm so in love with her." And he would say, "I know, you tell me every day." I feel like we all got to slow down for the last 21 months and just enjoy being around her. She is independent and not shy. She has no stranger danger. She is determined to do things her way and to do things just like her older siblings. She wants to be a big girl, and I want her to stay my baby forever. I am so grateful for her. I am grateful for her amazing father. I am grateful for her siblings. I am so grateful for the sweet moments that we get everyday from her, like the kisses she gives everyone before she goes to bed. I'm so grateful that I get to be her mother.

Friday, September 21, 2012


Some have you have been sweet enough to comment on how amazing you think I am for having to go through the things I have gone through and still have a smile on my face. I appreciate it, I really do. But that hasn't always been the case and the true hero of all of this is my amazing husband. Last week was 9/11. We feel the same way as most Americans, that we are proud to be an American and will never forget that horrible day. But 9/11 for our family is also the anniversary of the death of Chet's dad Merlin, only in 1998, 14 years ago. In my story about our baby Hope, I left out a major part of the story, and I apologize to Chet for this. In the 4 weeks that we had to prepare for our baby's death, we needed to decide where to bury her. At the time, we were living in Gilbert, and as most of you know, I had every intention to stay in the Phoenix area for the rest of our lives. Chet had just had to bury his dad 4 years prior to having to bury his baby girl. He had expressed to me that he wanted to bury her in Pomerene Cemetery next to his dad. At first I did not want to do that, only for selfish reasons, I wanted to find a cemetery in the Phoenix area, so I could be close to her. I took the matter to my mom and luckily, as most of you know, I have an amazing mother and she could see the things that I was blind to. She showed me through her kind and gentle words how blessed we were to be able to lay to rest our baby next to a close family member and that she would be watched over by him. I knew that she was right. I then told Chet that yes, we should bury her next to his dad. He wasn't sure why I had a change of heart, but he didn't argue or ask questions, he was happy I could finally see that this was very important to him. Chet's hero is his dad, and unfortunately for me, I was never able to meet him. I met Chet 15 months after he passed away. Now that I've been in the family for over 11 years, I feel like I have a good sense of what kind of man Merlin was. I'm grateful every day for how amazing he must have been, because I was blessed/lucky enough to marry one of his 8 amazing children. I know that Chet is an amazing person because of the parents he has. I know that Chet and his brothers try every day to be more like him and to try to honor him in how they live their lives. I know that Chet's sisters are also the amazing people they are because of him and try to live a life he would be proud of. Last week in honor of their dad, Kristy, Bevin, Kelly, Stacy and Chet were able to spend time together and just be with each other. I don't know the pain of losing a parent yet, and hopefully I won't know that pain for a long time. But my heart aches for Chet and his family for losing their dad way before they should have. I was talking to a friend last week about how Chet had to go and is going through everything that I went through and is going through, but he had to deal with a crazy wife on top of it. I say crazy, but truly I mean mentally ill. I had depression through a lot of our first 8 years of marriage, and when I am depressed everything is Chet's fault (in my eyes, of course). When I am depressed, I focus on all the negative in the world, in my life and in Chet. That is not a way to live! He stayed true to me through it all and he was my rock that helped me fight my way out of it. We have not had a perfect marriage, and as Chet said about his dad "I'm sure he had his flaws, but a perfect hero in my eyes." I say that about Chet. Yes he does have a few flaws, but to me he is perfect and I will take his flaws over most people's flaws! He truly has a heart of gold and loves very deep. In the first 8 years of our marriage, I drug him to 3 different marriage counselors and talked to him until I was blue in the face. I feel like I truly fought for our marriage. And he fought along side me. Again we don't have a perfect marriage, but we are both very happy and we have learned the right way to communicate. We also agree that counseling is very beneficial and everyone should go at some point in their lives - which is not what Chet believed 11 years ago! Let me point out that I'm far from perfect and have way more flaws than Chet. We have had to have some very emotional conversations, mainly because sometimes, I truly am an emotional wreck. But I can honestly say in the last 3 years, we've never been happier and we get closer every day. He is my life. He is my rock. I would not be here today without him. My honest to goodness biggest fear is losing him. He knows my heart and soul and knows that I love him more than anything else in the whole world. I know his heart and soul and know that he loves me too. Chet cares deeply for others and when someone hurts him he is still the one that says turn the other cheek. I'm trying to learn that! He is calm and is slow to anger. I'm a firecracker and quick to anger. We balance each other. He is the hardest working person I know. He is the best dad in the world and he loves spending time with his kids. His kids LOVE him and get so excited when he gets home from work. He makes our lives brighter. He is my hero for all of these reasons plus many more!

Monday, September 10, 2012

All About Dayson

I've been dreading this post, so therefore have been procrastinating. This is a trial that I will never be grateful for. Most days I do not think about this, and therefore I just live my life. But the days that I have to think about it are the hardest days of my life. I will cry writing this. I will wish I could take this away from him. I will wish I could trade places with him. I will worry about the future and the unknown. I will HATE Cystic Fibrosis forever. My heart will break reliving it. But everyone should know how amazing Dayson is. He is the sweetest boy I have ever met. I love that kid. So here goes...
The minute I went off birth control I got pregnant. Kambria was 20 months old. Chet was more ready to have another baby than I was and I was hoping it would take a little longer to get pregnant. I was a little nervous about this pregnancy, but nothing like I was when I was pregnant with Kambria. I was staying busy with Real Estate and coaching high school volleyball with my sister and of course being a wife and mother. On October 24th, 2005 we had our ultra-sound and found out that the baby was healthy and a boy! I cried for about an hour after because I was so happy and relieved. We got a healthy baby boy, that is all we wanted. The next day Kambria turned 2. It was so nice to celebrate her birthday and the health of the baby. The rest of the pregnancy went as planned and my life was pretty easy. In January we had to make Kambria transition from the crib to a big girl bed. She did great. And then on March 31st  Dayson was born 2 days before his due date. He was so sweet. The sad part was that I had baby blues after he was born. I had never  really understood what that meant, but it was hard. I cried a lot, for no reason. Sleep deprivation also didn't help. My 2 year old was still VERY active, and life just seemed overwhelmingly hard. Dayson never seemed full, I thought it was my milk, so I stopped nursing at 7 weeks. When he was 3 months old he started coughing. We couldn't get the cough to go away. We were hyper aware of the cough because he had a cyst on his forehead by his eyebrow that needed to be surgically removed, and they would not do surgery until his cough went away. We had been to the doctor many times and could not figure out what was wrong with him. He was eating triple the amount of a normal baby his age, he was pooping 8 times a day, he had a cough, he was skinny and pale and tasted salty and he was not developing like other babies his age. Finally when he was 8 months old, I had hit my breaking point and I was crying to my friend and she convinced me to go see her homeopathic doctor. I was desperate for anything to work, so I made the appointment and she wanted my whole family at the 2 hour appointment. We sat in her office and told her everything we could think of that had to do with Dayson. She asked questions and even looked at one of his stools, because he had 2 poopy diapers in the 2 hours that we were there. At the end she said "I think he has Cystic Fibrosis, you need to call your pediatrician as soon as possible." We asked her what it was and she sidestepped the question. On the way home I called the Pediatrician's office and made a sick visit for the next day, it wasn't with our regular doctor, but with another one in the office. When we got home Chet had to run to his softball game and so after the kids were in bed, I got on the computer and googled Cystic Fibrosis. It was like reading about Dayson, he had almost all of the symptoms. But the only thing that I could see was that the average life span was 32. I broke down. I called my parents and couldn't talk because I was crying so hard. I finally was able to sputter out that he has all the symptoms of Cystic Fibrosis and I just remember them saying not to worry that everything would be okay and I was eventually able to calm down. Finally Chet came home and I showed him what I had found and he was just as calm as my parents had been and said "it will be okay." The next day Chet went with me to take Dayson to his sick visit and we told her that we wanted to have him tested for Cystic Fibrosis. She said she didn't think that Dayson had that and almost convinced me to not have him tested, but luckily Chet was there and made her set up the test. The first opening for the test was 2 weeks later. That was a very long 2 weeks. Deep down I knew he had it, but I was so hoping that he didn't. Finally the day of the test came and they told us it would take 1-2 days to find out the results. The next day I was at my Grandpa's house with my mom when his Pediatrician called my cell phone. I remember walking into the bathroom and she told me that the test results came back that he had it and that they wanted to do a second test just to confirm, but that it was hardly ever wrong. I broke down again. All I remember hearing her say after that was she was sorry and she really meant it. That made it even scarier. My mom cried with me and even my Grandpa cried. The next few days are a blur. I remember taking him for his second test and I remember meeting with the CF team at Phoenix Children's Hospital. I do remember feeling relieved that we finally knew what was wrong with him and that we could put him on the medication he needed. When his cough went away a few weeks later and his weight had gone up, I was happy for a brief second. There was so much to learn and remember, it was very overwhelming in the beginning.  
Breathing treatments- 2-3 a day - 
Albuterol and either Pulmozyme or Sodium Chloride
Chest Physical Therapy- 2-3 a day
Pancreatic Enzymes- with meals and snacks
Acid Reducer- 2 times a day
Inhaler - 2 puffs twice a day
Multivitamin - once a day
Extra Salt
High Calorie Diet
When he was 13 months old he had his cyst removed with no complications. From about 9 months to 16 months he was doing pretty good. But then at 16 months he stopped gaining weight and they started talking to us about a feeding tube. That scared me into feeding that kid like I never had before. Finally at about 18 months they were happy with his weight. Shortly thereafter we moved to Tucson. This was very hard on me as well. It was the first time that I didn't have my family close. I relied heavily on my family for support and leaving them was very difficult. Saying goodbye to the CF team at Phoenix Children's was very difficult as well. Going to the CF clinic in Tucson was different and so therefore I hated it. I didn't know anyone in Tucson and I just struggled with all of it. But like it always does, things started to work out. I met friends from church and Kambria was in a fantastic pre-school and we lived in a great neighborhood and business was going well. I found a part time nanny that saved my life, she was amazing and loved my kids like I do. We got to see more of Chet's family and I eventually learned to love the CF clinic in Tucson. Dayson was doing well and we learned to love Tucson.
We had been in Tucson for almost 2 years and Chet and I had been talking and praying about what to do next and finally one day it hit me that we needed to move. I remember crying to Chet that I didn't want to move to Pomerene, but knew that it was the right thing to do. He just laughed and hugged me. He was so happy. We moved right before Kambria started Kindergarten. She was so happy to be going to school with cousins. Right after we moved we got a dog for Dayson too. Her name is Tilly and for the first 2 years of Tilly's life, Dayson and Tilly would play for at least 4 hours a day. They would wrestle and play chase and a different version of fetch - Dayson would throw the ball and then race Tilly for it. It was quite entertaining. When Kambria went to 1st grade, Dayson went to pre-school. He had the best pre-school teachers ever. He loved them and they loved him. They were so good about giving him his medication and just watching out for him. Then the time came for him to go to Kindergarten. Luckily Chet's sister was going to be his teacher. I was so thrilled, happy and relieved. The principal knew all about Cystic Fibrosis too and was very understanding and flexible with whatever we needed. After a couple of months of going to Kindergarten, Dayson and I were the only ones home and he was eating dinner and stopped and asked me "Why do I have cystic fibrosis?" I had to leave the room and just cry for a few minutes. I finally came back and said "Well, you have it because daddy has a little cf gene and mommy has a little cf gene, and together we made you have a big cf gene." And then he asked "Why doesn't Bree have it?" I said "I don't know, but she has to wear glasses and you don't have to." And then he said "I wish I didn't have cystic fibrosis." I said "me too." But that was the only time that he has said that. We just keep comparing it to some people have to wear glasses, some kids can't see, everyone is different. The good things about it is that he is encouraged to play sports and they want him to live a normal life. He goes to school and plays and runs and jumps like everyone else. If you saw him, you would never know that anything was wrong with him. He is sweet, but can be bratty too. He will live a long and normal life. The medications keep getting better and he knows that we do at least 2 treatments a day and we take all of our medications. No questions asked.
He knows that he will always have to take medication and do treatments, just like we will always have to brush our teeth. We have a routine down and I'm so thankful for how helpful Chet is with all of it and thankful that Dayson hardly ever complains about it, mainly because he gets to play on the iPad while he does his treatments. I'm grateful for his doctors and the fact that we can live in a small town but be close to the big city that has everything that Dayson needs. I'm grateful for how patient Kambria is with all of it. She got the short end of the stick with all the attention that Dayson needed and still needs. I'm grateful for their relationship and love seeing them grow up together. Dayson got to have Chet's sister as a teacher again in 1st grade and he absolutely adores her. I'm so grateful for her and all that she does for him. I'm grateful for Chet's family and my family and the love and support that we get from them. I'm also grateful for all of our amazing friends that we have. I am so grateful to have the relationship that I do with our Savior, He has saved me many, many times. He has also been the one to guide us through this life, and we never make a big decision with out Him. I'm so grateful that He loves each and every one of us and I'm grateful that I can kneel down every day and thank Him for all of the many amazing blessings I have. I know that He loves me and I know that He loves Dayson. I know that with Him, I can do whatever I need to do for Dayson.

Wednesday, August 29, 2012

And then came Kambria

The Doctor advised us to wait 6 months after losing Hope, before getting pregnant again. We decided to wait 7 months, because Hope's original due date was September, and I didn't want to be due in September again, and so if we waited the 1 extra month, then our baby would be due in October. So that was the plan, but I was not sure how I would feel. 
Journal Entry from December 6, 2002 
 "Yesterday was 6 months - kinda hard - ok, really hard. I miss her (Hope). I can't believe its been 6 months. It goes by so fast. I'm really nervous about my next pregnancy, but in a way, I know everything will be fine. And that scares me because it's like I'm not preparing myself for the 1 in 4 chance that it won't be ok, but I won't be able to handle having to bury another baby. The Lord knows what I can and can not handle, so I should be fine. I love Chet with all of my heart. I know that I would not have made it this far without him. He's my everything and I'm so blessed to be his wife."
February 2003 we found out that I was pregnant and due in October. We were happy, but nervous and a little scared. We had to wait until the end of May to have our ultrasound to find out if the baby was healthy. Finally the day arrived and when the Doctor told us that SHE was HEALTHY, I literally felt a weight being lifted off of my shoulders and a huge sense of relief and JOY. I had heard that phrase a lot, but had never experienced it until that day, and haven't since. I felt like I was walking on clouds the rest of the day and week. I was SO happy, but still scared and sad.
Journal Entry from June 28, 2003
"I'm pregnant and due October 27th. We recently found out that our baby girl is healthy. What a huge blessing of joy and relief. And yet it doesn't take the pain away of losing Hope. It's now been over a year ago, but the pain is still like it happened yesterday. I'm so happy that we will soon be bringing home a healthy baby girl, and yet I feel scared and sad."
Looking back now, I can see that I was scared that Hope was going to think that I was trying to replace her. I wasn't trying to replace her. I was scared that people were going to think that. I didn't want anyone to think that I was trying to replace her. We were just ready to keep adding to our family.
Kambria aka Bree, arrived 2 days early on October 25th 2003. She was a beautiful baby. Chet and I had so much fun with her. Chet dove right into being a father and changed more diapers her first week than I did! I was able to stay home with her for her first year and I loved every minute of it!
Journal Entry from September 17, 2004
"Bree is almost 11 months old now. She is SO much fun, she's nuts, constantly moving, VERY ACTIVE, but so much fun - she has quite the personality. She even has a little temper, but when she laughs, the whole world stops and your heart melts and you'll do any crazy thing again to make her laugh again. I love her so much, she is such a bright spot in my life. She keeps me moving :)"
From that age until about 2 1/2 anywhere we would go, people would ask us - "Is she always this active?" Yes, she was always that active! She wore me out! Luckily I had Chet to help me.
Journal Entry from August 30, 2005
"I was talking to someone today about how good of a father Chet is. It really does amaze me still how great he is with Bree. She absolutely adores him. He's a very hands-on kind of dad, and I'm so grateful and blessed to have him."
Bree is the best helper and best big sister. She makes my life easier, she makes Dayson and Layla's life more fun and she is still Daddy's girl. She is very sweet, and in tune with how others around her feel and she can still be VERY active, but she can also be calm and serious if need be. She loves school, she loves food, she loves cheer, she loves clothes, she loves dance, she loves to sing, she loves to help in the kitchen, she loves to go anywhere with Chet, and she just basically loves life! Our family really needed her to come when she did and how she came. She is the perfect fit.

Thursday, August 23, 2012


Many of you already know the story of our first baby Hope, and many of you were with us during that time, but for those that don't know the story, it's important to know for upcoming posts. We had our baby girl on June 5th 2002, she was stillborn. I didn't write the story about Hope until 2006 after Dayson was born, but before he was diagnosed. I'm so glad that I was able to write it down before having any worries about Dayson. It was also really good closure for me to put it all into words, and now I'm glad I did, because I can just copy and paste the story and not have to delve completely in again. Oh, and my amazing friend Suzy edited my story for me - find her here.  Here it is....

I’ve wanted—needed—to write this story for so long. I’m sharing it so everyone who reads it will know how special my angel was. Chet and I had just celebrated our first anniversary when we found out that we were pregnant. We were thrilled! What an exciting time in our lives, our first baby! In the beginning of the pregnancy, we had it so good, because I rarely got sick. There was the occasional nausea, but other than that, things were off to a good start. I was in school that semester, and Chet was working full-time. We had a cute little house with a bedroom set aside for the nursery. We had not a worry in the world and excitedly looked forward to finding out the sex of the baby.

Finally the day of the ultrasound came; I was nineteen weeks along. I felt so anxious and excited lying there looking at my husband as the doctor was about to start the ultrasound. But, as soon as my baby’s image appeared on the screen I could tell it didn’t look right. The untrained eye that I had couldn’t pinpoint what was wrong, but I knew something wasn’t right.

The silence in the room was suffocating. Our doctor didn’t say a word . . . just stared at the screen and kept measuring things. Finally, he said that it was hard to see because I had very little amniotic fluid but that he could tell that the tummy was a bit large and the head was a bit small and he didn’t know why. He also couldn’t determine the sex of the baby, a detail Chet and I had by then completely dismissed from our minds—all we cared about at that point was the health of our first child. Our doctor told us that we would need to have a level 2 ultrasound and that he would schedule it for us. He came back and told us where our ultrasound would be and that it would be one week away.

A week! It felt like a year. Chet and I tried to stay positive, and on our drive home we called our families and asked them to include us and our baby in their fasts that coming Sunday, which happened to be Fast Sunday. The night before the ultrasound, Chet, my dad, and my brothers gave me a blessing. The words that I so desperately wanted to hear never came, but I did feel an overwhelming love from everyone in the room that night. I knew that whatever was going to happen, I had the love of my family to get me through.

The next day, as Chet and I went to the office with the bigger and better machines, all I could think about was finally getting our questions answered. The unknown felt unbearable. We entered the ultrasound room. As I once again lay on the examination table, I felt so nervous; but I also felt the assurance that everything would be fine. The technician performing the ultrasound told us that two doctors would watch the picture in another room and that they would come in and talk to us after the ultrasound was finished. The technician then started the ultrasound. We could see our baby one hundred times better on this screen! We saw the baby swallow, we saw the four chambers of the heart, and we saw ten fingers and ten toes. We also saw that the kidneys were five times too big; the lungs, if there were any, were underdeveloped; and there was a gap in the skull where some brain tissue had protruded.

I still thought that maybe some way our baby would be okay; this nightmare didn’t seem possible. Tears began to flow down my face. The technician left, and the two doctors came in to talk to us. They told us that our baby had a rare genetic disorder called Meckel-Gruber Syndrome. This particular syndrome causes a 100 percent mortality rate. In other words, our baby was not going to make it. The doctors also said that the baby could die while still inside the womb and if that happened there could be serious complications to my health. They further told us that since this is an inherited disorder, in every future pregnancy there would be a 25 percent chance of the baby having the disorder.

I sat there, listening to everything that the doctors told us, and I couldn’t stop crying—I even apologized to them for my tears. They of course said, “We would be worried if you weren’t crying.” They then took us to a room with a phone in it and told us we could take as long as we needed and that we could call anyone we wanted. My tears were still pouring. What was happening didn’t seem real, yet it hurt so much.

Finally, we composed ourselves somewhat, but I didn’t want to call anyone. So we left the office and drove home in shock and disbelief. Our cell phones kept ringing—our families were very anxious for the news—but we couldn’t bring ourselves to answer. I couldn’t even talk without breaking down. When we got home, we just layed in bed, holding each other and crying, until we finally decided to drive to my parents’ house. I had to speak to my mom in person; there was no way I could tell her over the phone.
As soon as I saw my mom, I broke down again. I couldn’t talk. I didn’t want it to be true, and telling my mom that my baby wasn’t going to live made it real, too real. After I finally forced the words out, my mom called my dad and he came home from work early. We called our doctor and talked to him about our options. He is also LDS also and told us to pray about our choices and then get back to him. My brother and sister-in-law came over, and all we could do was sit together crying and talking. After a while, Chet, my dad, and my brother gave me another blessing, this one for the strength that I needed to get through this trial.

After a lot of prayer and discussion with our doctor and our families, Chet and I decided that I would deliver the baby when I reached twenty-four weeks. That meant I had four weeks to prepare to have a baby that might live for a couple minutes but that would most likely be stillborn. Those four weeks were extremely hard. Every time I would lie down, I would feel the baby move. I could feel life in me and couldn’t believe that it was about to be taken away from me. I tried hard not to think about it. My family didn’t know what to do or how to act. I didn’t know what to do or how to act. Everything still felt unreal.

After four weeks of carrying a baby that wasn’t going to make it, my body was tired—but emotionally, I was even more exhausted. When the appointed time arrived, my sister went with me to the hospital. As we were waiting in the delivery room for my doctor, I talked to her about baby names. I had a name book with me, and I couldn’t find any boy names that I wanted. The only name I wanted was a girl name, so my sister told me that the baby was probably a girl. My doctor came in and gave me a drug to start labor and then sent me home for a good night’s sleep.

My husband and I went back at 4:30 the next morning, and the nurses hooked me up to an IV with patocine to speed up contractions. At 11:15 p.m., after about eighteen hours of labor and after I had a seizure, we finally had our baby girl. My husband was by my side, and my parents and in-laws were waiting in the hall.

She was stillborn but absolutely gorgeous. She weighed 1 pound 2 ½ ounces and was eleven inches long. She was so sweet, and the Spirit in the room was very strong. I have never had such an amazing experience as when the doctor placed her in my arms. An unconditional love I had never felt before overwhelmed me. I knew at that moment that she was way too sweet for this world. My parents and my husband’s parents each took a turn holding her. The feeling in the room was so sweet that I’ll never forget it. Chet and I decided to name her Hope.

The next morning the nurses brought her in to me, and they had dressed her in a beautiful white dress and matching bonnet that fit her perfectly. They also had a little pink blanket with her. I later found a tag that said that Awhatukee 2nd Ward had made the dress and blanket. How touched I was! I never would have thought to bring something to the hospital for her to wear, and yet it meant more to me than words can describe. The nurses also took pictures of her for me, something else I hadn’t thought to do. The entire time I was in the hospital I felt complete peace and love. Looking back, I know that it was Heavenly Father protecting me from any sad emotion, so I could fully treasure the time I had with my baby Hope.

My memory of the next few days is blurred. I do remember being at the graveside and my sister singing “I Know That My Redeemer Lives”—I had specifically requested that song. I also remember looking at my precious angel one last time and then leaving the cemetery. As I left the cemetery, the grief of the situation hit me. I was going home with empty arms because I had just buried my beautiful baby. I broke down.

The next few weeks are a blur too. I just remember wanting to die so that I could be with my baby again. I knew that I couldn’t kill myself if I wanted to see her again, so I would dream up ideas like getting in a car accident but not having it be my fault. I wasn’t in school anymore and I didn’t have a job, so I didn’t have a motivation to get out of bed in the morning. So I didn’t. When my husband would come home, I would cry to him and tell him that I was done with life. I wanted so badly to be done. I longed to be with my angel. I couldn’t find a reason to live. The pain was all I had, and I clung to it.

I wanted everyone to know how special she was, so I would tell people—but they didn’t know what to say or how to act. One day, however, a coworker of my husband sent us a card that expressed the perfect thought. The card read “It’s hard to hear talk about peace and angels and heaven when you’ve got a big hole where your heart used to be. So I won’t do happy talk. I’ll only say I’m praying for you and I wish you didn’t have to say good-bye.” After reading the card, I said, “This is all I want to hear from people; this is exactly how I feel.”

I couldn’t pray for months. It wasn’t that I was mad at Heavenly Father—I knew that He had done the right thing, because I knew that she was too special for this world. But all I had was the pain, so I didn’t want Him to take that away too. Finally, after a few months of being depressed, I couldn’t take it anymore. I got down on my knees and asked Heavenly Father to help me get through the pain. I needed help moving on and knowing that it was okay to move on. I couldn’t do it alone. When I finally did ask for help, He enveloped me in love and peace. He gave me the knowledge that Hope wanted me to move on and that she was okay with me moving on. His love is so strong.  I started praying for was strength to get out of bed in the morning—that was the hardest part for me. After I started praying for help, when bad days came, my husband or some family member would call and say the thing that I needed to hear. Many of them never knew they were answers to my prayers.

I’m so blessed to have the husband and the family that I have. They were the ones that Heavenly Father and my angel Hope whispered to help me, and I came out of it because of them. Through this experience I have come to truly understand the importance of family. I have also come to value the knowledge the gospel provides that we are an eternal family and that I will be with my baby again someday. I have also gained a testimony of the power of prayer. Heavenly Father is always there for us, waiting for us to ask for His help or comfort. He is waiting and wants to comfort us.  I consider this experience to be the hardest trial in my life, but I also see it as a growing experience and am so grateful for the love and lessons I have gained from it. I’m so blessed to be a part of something so amazing and hope that sharing the story of my Hope will give hope to those in need. 

Monday, August 20, 2012

Dayson Report

For those of you new to our life, Dayson has cystic fibrosis. Last month at his clinic visit, they told us that his lung function wasn't where it should be and that he might have to spend a week in the hospital for a "tune-up"  but they were willing to let us try for 3 weeks to see if we could get his lung function back up without having to go to the hospital. They put him on an antibiotic for 14 days and we did 3 treatments (about 40 min each) a day. We also had a lot of family and friends praying and fasting for him on Sunday August 5th. When we went back to the Pediatric Pulmonologist on August 9th, they reported that his lung function was much better and he would not have to be hospitalized! They told us to come back in 2 months and to keep doing at least 2 treatments a day. We were thrilled!! We are so grateful that we have so much support from family and friends and we were so grateful that so many people had participated in praying and fasting for Dayson. Cystic fibrosis is a daily struggle for our little family and it will be a lifelong fight. I personally loathe cystic fibrosis and would take it away from Dayson in a heart-beat, but we all know that that's not how life works. So we continue to be super consistent with all of his medications and treatments and try to enjoy the simple and small things in life. Dayson is a trooper and we are all so blessed to have him in our lives.