Monday, October 28, 2013

JUNE & JULY

We spent alot of time outside enjoying the sunshine in June and July. July marked 6 months since William's surgery. It's amazing to think of how well he has done since then. He started solids but does not care for baby food at all. He loves his treat puffs and crackers - so healthy I know. I can't get him to eat any fruits. So I still nurse every 2 hours. His oxygen levels dropped to around 85 at the end of the month. He still fluxuates into the high 80s and sometimes even low 90's but never stays. I swear he is creating more and more energy everyday dispite the fact that his levels are decreasing.  He is an army crawler and can basically get anywhere he wants to go. William is such a good and happy baby.  He is so smily all the time. My favorite is to watch London to get him to giggle really hard. We love this little boy.

Doesn't he look like Jack Jack from the incredibles?

6 Months since his first Open Heart
I was playing on the ground with William one morning and London ran into his his room and grabbed his stethoscope. She put it on and say's, "OK William it's time to check your heart". It was so sweet and cute that she is looking out for her brother. I never get the stethescope out so I have no idea where she learned it.  She really loves her brother and is always praying for his heart. Every night her prayer is the same and it goes like this, "Dear Heavenely Father, thank you for this day. Please bless Williams heart. In the name of Jesus Christ, Amen." I love it!





Visiting Grandma Ruby



Playing outside

MAY

May 9, 2013:
William's cardiology apt went awesome today.  His lungs looked great and his oxygen levels were good which meant we got to take him off lasix and no more oxygen!  His oxygen levels without oxygen were between 87-89. 

William doesn't seem to have missed a beat. He is gaining weight and has a ton of energy. He is 6 months and he started to scoot a bit this month. Also, London's birthday was on May 16 so we took off the day after and went camping with Stefenee and Brent (my sister and her husband) down in Moab.
 









Friday, October 25, 2013

APRIL

At the end of April as soon as Tyler finished his last final of the semester, we decided we needed to get away as a family. We had some free flights and hotels so we took a quick weekend trip to San Diego.  We spent one of the days at Sea World. London was in Heaven. She loved seeing  Shamu and the other fish.  Her favorite part was meeting Elmo and going on the rides over and over.  We also spent time at the beach, eating yummy food, and swimming at the hotel pool. It was a nice and very needed getaway and the kids were happy to get away as well.
On the flight to San Diego











TALK


At the end of March Tyler and I were asked to speak church and share some personal experience of how the Atonement has blessed our lives as we've gone through trials. I thought I would share because we both shared a lot about William's experience. Yes I wrote my talk about word for word because if I don't my mind goes blank. Here you go: 


I am grateful for the opportunity to speak today about Christ’s Atonement. I think the topic is very relevant and a good reminder as this week we celebrate our Savior’s Atonement, death, and resurrection. More specifically I was asked to share some personal experiences of how I have used the Atonement as I’ve gone through trials.

We are reminded in Alma 7:11-12: “And he shall go forth suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.

Christ not only atoned for our sins but also for our pain and afflictions. Because Christ atoned for these things He Himself knows personally and infinitely the pain we face and knows perfectly how to help and comfort us in times of need.

Sister Burton of the General Relief Society Presidency said: “Why does the Lord allow suffering and adversity to come to us in this life? Simply put, it is part of the plan for our growth and progress! We “shouted for joy”6 when we knew we would have the opportunity to come to earth to experience mortality.”

Elder Dallin H. Oaks taught, “Our needed conversions are often achieved more readily by suffering and adversity than by comfort and tranquillity.”7 That supreme act of love ought to send each of us to our knees in humble prayer to thank our Heavenly Father for loving us enough that He sent His Only Begotten and perfect Son to suffer for our sins, our heartaches, and all that seems unfair in our own individual lives.

Sister Burton continued: “Without an understanding of Heavenly Father’s perfect plan of happiness and the Savior’s Atonement as the central feature of that plan, these challenges could seem unfair. We all share in the trials of life together. But in faithful hearts is written, “All that is unfair about life can be made right through the Atonement of Jesus Christ.”

How grateful I am that Heavenly Father loves each of us enough to send His perfect son to atone for us so that we will not be alone as we experience mortality and that everything can be made right through His atonement.

Sister reeves has said: “Heavenly Father and our Savior, Jesus Christ, know us and love us. They know when we are in pain or suffering in any way. They do not say, “It’s OK that you’re in pain right now because soon everything is going to be all right. You will be healed, or your husband will find a job, or your wandering child will come back.” They feel the depth of our suffering, and we can feel of Their love and compassion in our suffering. Whatever sin or weakness or pain or struggle or trial you are going through, He knows and understands those very moments. He loves you! And He will carry you through those moments. He has paid the price that He might know how to succor you. Cast your burdens upon Him. Tell your Heavenly Father how you feel. Tell Him about your pain and afflictions and then give them to Him.”

All of us face challenges and times in our lives when we need Heavenly help. We are told that if we would be humble in such times of need and turn to him for help, that we would “be made strong, and be blessed from on high.’ We need center our hearts and minds of the Lord’s will and try to learn what Heavenly Father is trying to teach us so that we can grow.

Elder Orson F. Whitney said: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God … and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

The last 8 months have been a very difficult time for our family. A year ago we found out we were pregnant and half way through my pregnancy we were told that our son’s heart did not develop correctly. William would be born with a very rare heart defect and surgery was a possibility. William was born in November and his heart seemed to be doing great. We took him home and followed up with his cardiologist. About a month later they noticed that he had some other issues with his heart that needed immediate attention. He went through his first open heart surgery January 17 of this year. He was in the operating room for 12 hours. The surgery they planned on doing didn’t work and they needed to proceed with a procedure that is done once every other year at Primary’s. So they don’t have much practice and don’t know exactly what to expect. His recovery was rough and slow but now 2 months later he to be doing well. This experience has been very difficult, but we have been able to see so many miracles of the Lord blessing us during this time and I have grown closer to my Savior and His atonement. I felt impressed share some of the details and miracles we experienced.

Upon hearing that William’s heart was more complicated than they had thought and that he would need open heart surgery within the next couple week. I was getting ready to call my parents to tell them the news. I was nervous and very scared to do so. As I’m sure any of us can imagine the emotions when it comes to hearing something like this about our child.  At those times I think many of us as couples could feel alone and that no one would really understand what we were going through.

We were reminded of the scripture previously read in Alma 7 about Christ suffering for our fears, worries, heartaches and pain. I couldn’t have gone through this without Tyler but we discussed that neither of us were fully capable to completely comfort one another during this trial. We both needed the comfort that only Christ can offer through using His atonement and relying on the relief He is willing to give. We knew we were not alone.

Elder Holland said, “To all such, I speak of the loneliest journey ever made and the unending blessings it brought to all in the human family. I speak of the Savior’s solitary task of shouldering alone the burden of our salvation. Rightly He would say: “I have trodden the winepress alone; and of the people there was none with me. … I looked, and there was none to help; and I wondered that there was none to uphold me.”
Christ does know what it feels like to be alone more than anyone. But we are never alone. Christ has felt our personal pains and because of this He knows exactly how to meet our needs.
Matthew 11:28-29: “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.”

Elder Dallin H. Oaks has taught: We will be “given strength or understanding or patience to bear the burdens placed upon us.” All that will come may be “clasped in the arms of Jesus.” All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto our souls.” Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm.

Seeing William for the first time after surgery was heartbreaking. He was blessed enough to be healthy at home. It felt like we had given them this perfectly healthy baby and now he was completely broken and in pain. It was hard as parents to watch our sweet little boy look so sick and relying on so many machines to help him sustain life. I felt as though I was the cause and could hear his asking me, “Why did you do this to me?” I watched him recover in the hospital slowly, days without progressing. As I watched him recover, I thought about how the doctors and us felt it was best to take this step now. If we waited till his heart got sick we wouldn’t have many options. I thought about how Heavenly Father gives us trials. He knows it will not be easy and it will be hard to watch us go through them. He gives them though because he knows they will help us to grow, to become the person that He wants us to become if we let him mold us.

At times I wondered how I was going to be able to do this, how I was going to be able to take care of this little boy. But I knew that Heavenly Father would not give me something that He didn’t think I could do and that gave me hope. I knew I needed to put my faith in and rely on Him. Looking back, we have seen that God was preparing us for this time. A further witness that He knew what would happen and we have no doubt that William was supposed to come when he did and with a heart defect. I have held on to that knowledge throughout this, it has helped me through the toughest times, knowing that this experience was meant for me. I have leaned to trust in the Lord and his wisdom. William has been a blessing to our family and has brought a special spirit into our home and family.

Spending so much time at the hospital, I learned how important perspective is. While what we have experienced is difficult, there are certainly always worse things. There were many in the CICU that had been there for a long period of time - one girl for almost a year waiting for a heart and I saw some lose loved ones. I feel very blessed that William’s condition can be treated, that there is hope. I’m grateful for doctors and surgeons who chose to go to medical school and who chose to research congenital heart defects. 20 years ago there was no treatment for Williams condition.  I am so grateful to be living at this time where we have the blessing of such advance medical treatments.

During this time we have seen so many miracles and blessing. My testimony of prayer has been strengthened as we have prayed and fasted for very specific blessings for William. It is very humbling to hear of friends and family and even strangers saying they are praying, fasting, and even putting our names in the temple. We felt those prayers and know that is why William has continued to recover and do so well at home.  I know he hears and answers each prayer. There were many occasions where family prayed for specific needs during his surgery and recovery that we saw come to pass. Sometimes the answers weren’t exactly what we were praying for but God answered them in the best way for William.  

My faith in the priesthood has increased as I’ve seen blessings come through Christ’s authority. There were many occasions were myself or William received a blessing. These blessings helped us put our faith in Christ as we were never given direct answers of what would happen, but after each one we were comforted that everything was going to happen according the Heavenly Father’s will.

William’s journey is far from over, but I know that by centering my heart and mind on the lord’s will, I will be strengthened and gain a greater understanding of the Lord’s plan
President Monson has said, “I testify to you that our promised blessings are beyond measure. Though the storm clouds may gather, though the rains may pour down upon us, our knowledge of the gospel and our love of our Heavenly Father and of our Savior will comfort and sustain us and bring joy to our hearts as we walk uprightly and keep the commandments. There will be nothing in this world that can defeat us. My beloved brothers and sisters fear not. Be of good cheer. The future is as bright as your faith.”

D&C 121:7  says, “peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment.”

This experience has helped me realize the daily need to feel of Christ’s atonement. Before I seem to only use the atonement at times when I’ve sinned and needed to repent or during big or hard trials. I have a testimony that Christ wants to help us everyday. The atonement is not only meant to be used during really challenging times but he suffered even in a way that he can help us through the small things. There were many times where the biggest blessings were just feeling peace and comfort and knowing that Christ was by my side. My hope and prayer is that not only I can remember this but also each of us has the opportunity to experience Christ atonement in every aspect of our lives. I’ll leave you with part of the song ‘I know that my redeemer lives’: He lives to silence all my fears; He lives to wipe away my tears;
He lives to calm my troubled heart; He lives all blessings to impart.
In the name of Jesus Christ Amen


WILLIAM'S BABY BLESSING

March 31, 2013 (Easter Sunday) Tyler blessed our sweet baby William. This was our first time since William was born that we were able to go to church as a family because of RSV season. It was such a special day and Tyler did such a good job. I'm so grateful he holds the priesthood and the blessings that come though it. William and I were given many blessings throughout my pregnancy and William's surgery that brought us peace of mind and comfort that everything was going to be OK and that God had a plan.





 






UPDATE

We didn't get out much over the next couple months except for doctors appointments. So we just hung around the house and watched lots of movies.

February: 
Feb 13, 2013 was William's 4 week check up. They removed the stitches from his incision and did an EKG.  Everything looked good. Within the first couple days of being home William ripped his feeding tube out a couple times so I decided to give nursing more of a try. I even tried a bottle of breast milk but every time the bottle got near his lips he would gag until he would puke everything up. It took a couple days for him to get the hang of it again but continued to choke every now and then. They put him on prevacid after his surgery for his acid reflux and it seems to be helping. He still throws up everything once or twice a day but i think I figured a way to help that. 
 

March:

He had a chest xray and EKG done and then met with Dr. Pinto. William's oxygen levels were doing good enough to get off oxygen during the day! Happy Day! William's lungs were still a little wet so they kept him on lasix for a little bit longer. Overall things are looking great!



A BIG THANK YOU!

As hard and emotionally draining as it has been to think back to all that happened while William was in the hospital,  it's amazing to remember the many blessings, tender mercies, and miracles that we saw  each day during and after his surgery. Even now, looking back we have noticed even more ways that Heavenly Father was blessing us during this time that we didnt notice at the time and also how he has continued to bless us everyday since. We were blessed while William was in the hospital to see the positive in his progress everyday. In the hospital I looked at William's scar and it didn't make me sad but was amazed at how it looked better and better each day. Now looking back I can hardly look at pictures of his scar without getting emotional. I can't bear to think about doing it all over again within the next year. William has brought our family closer in so many ways. He is a special little spirit and we love his so much. It's so cute to see how much London loves her little brother and loves to help out. She is constantly getting his stethoscope out and checking his heart. We love our little family.

We feel such an immence feeling of gratitude. We are grateful for the Dr Burch and his team of doctors, Dr. Pinto, the anethesiologist, Dr. Gray and nurses that watched over William in the hospital. We are so grateful for our IHH heart friends who came to visit, bought us dinner, and lended us comfort. To parents and siblings who watched London not only for my many doctors appointments leading up to my delivery but for watching London for 2 week straight and who sent us pictures so we could see her and know she was having fun. We are grateful for the many meals and freezer meals from our family and ward members that gave us the energy to keep going. We also appreciated all the stories that were shared about others who have gone through something similar experiences. We are especially grateful for the many people who fasted and prayed for William. It was extremely humbling to hear of so many people that we knew and alot that we didn't know that were praying for William and our family.  We felt those prayers and know that is why we saw so many miracles. Words can't express how grateful we are for all of you! Thank you!