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.