Paul & Lynette Cardall Fireside

On Thursday I had the opportunity of meeting Paul and Lynette Cardall at a fireside. My parents joined me, but had already had the chance to meet Paul on Christmas Eve at Primary's when he stopped by Gracelyn's room to bring some gifts. One of my fellow heart moms, Mindi, invited Paul to speak at her stake and invited me to go. (It was just for the Relief Society so I wanted my mom to go with. At the last minute I decided we needed to drag my dad along. :) He was a good sport...there were about 5 other men.) It was GREAT! Paul is so inspiring and has such a great spirit about him. He spoke of his life and the trials that he has faced enduring 36 years of CHD. He also spoke of the miracles he has seen. His life is a miracle. He played some songs for us and it became a little overwhelming for me. Everyone in that room listened to him, but having to actually be living through the things that he was talking about was difficult. It was hard for me to hear it from an adults perspective. Gracelyn can't tell me what hurts and what is tolerable. He talked about the drain tubes and how painful it is to have them removed. I would have never imagined that to be so bad. (I'll be sure to leave the room next time Grace has hers removed.) He spoke to us a bit about genealogy. He talked about how much paper it would take to trace back to our first father. He then compared that to how much it would take to trace our spirits back to Heavenly Father and that there is a direct link. I know what Paul says he knows to be true. He wouldn't be alive if he really believed otherwise. I have found a lot of peace and hope through Paul's life. I have found a lot of peace and hope through the things that Paul writes on his blog. Recently he wrote, "Life goes by quickly. Every moment counts. With every passing moment how much more fulfilling our lives will be if we count our blessings and seek to recognize the daily influence of a loving God in our lives. He understands all things and why he brings children home. We have to trust Him or we have nothing to trust in." Paul and his wife truly touched me. Paul has had to endure a lot, but I can't imagine the pain the Lynette has also been through. She really stands out as a strong daughter of God. After they spoke I had the chance to meet them and take pictures with them and my parents and Mindi. I'm grateful for the chance I had to talk with them. Before we left Paul told me to look up John 9:1-3. Thank you for inviting us Mindi! Thank you Paul and Lynette for your spirit!

Gracelyn's Story at Walmart

Gracelyn's Aunt T works at the Walmart near our house. Right now Walmart is trying to raise money for Primary Children's Medical Center. Aunt T asked us if we wanted to give them some pictures of Gracelyn and her history to help promote this. We have had such a great experience with PCMC we didn't hesitate to share her story and all. Gracelyn's picture is hanging right by the donation container.

Who needs sleep anyway...?

Unless you are a doctor or nurse you probably haven't seen much of us in the last 5 months or so. I thought I would post a recent picture of Gracelyn and I, just so you don't forget us. I know I look a lot better than other pictures I have posted in the past, but you can tell Grace isn't so happy. She has really bad ear infections. She is on her forth antibiotic and still no relief. The last being rocephin injections. For the past two week she has been miserable. It started around the same time as her last cath and so we were blaming it on that. She won't sleep. She went from sleeping 10 hours to waking up 10 times a night. She doesn't want to talk or smile much. She just cries. She won't let anyone hold her, but me. Now don't get me wrong, I am all for her being a mama's girl. However, I do need to shower and use the bathroom sometimes. I miss my happy little baby! I feel so bad for her. Her pediatrician has decided enough is enough and that we need to get tubes put in. With her other problems they will only do them at PCMC. He gave me the number of an ENT doctor in Layton that operates there. We had hoped for tubes this week, but he didn't even have an opening to just look at her for a week. We called PCMC to see what doctors they had available and they are scheduling for June 23. I contacted PCMC yesterday because it has been two weeks since they said she was put on the schedule for surgery and we still haven't heard anything. They couldn't find her paper work. I talked to them about her needing tubes and trying to plan that around her heart surgery. The women I was talking to stopped me and said if she has ear infections they won't operate and if she has tubes they can't operate on her heart for SIX weeks. In my head I am screaming, "REMEMBER THAT LITTLE PIECE OF PLASTIC IN HER HEART THAT IS CLOSING? OH, AND NOT TO MENTION THE LITTLE WIRE PIECE THAT IS NARROWING?!?! COULD SOMEONE PLEASE HELP ME?!!" I'm not a doctor, but as her mom I am not comfortable knowing this and thinking we could have to wait at least two more months for surgery. I called her cardiologist yesterday and we still haven't heard back. So...needless to say we are stressing a bit. Nothing a bowl of ice cream at 5:00 in the morning can't fix though, right? Wrong. Now I have a belly ache on top of it all... :(

Funny Mr. C...

The other day Mr. C and I went to a store. As we were walking around he saw a baby around the same age as Gracelyn. In the past he has tried so hard to understand why we don't get to take his sister anywhere. As we passed the little baby he said, "Mom, why does that baby get to go in the store?" As I quickly walked away from the other mother I tried to explain to him that it is okay that she can't come with us right now, we are still very lucky to have her in our family and that we can play with her at home. I proceeded to tell him that we are so lucky to have such a special little sister. He interupted and loudly said, "Ya, that baby isn't special!"

Lots of firsts...

We have had an exciting week with Gracelyn, we have been able to experience a lot of firsts. These things would probably seem so small to most, but are exciting for us after having kept her locked up in the house for so long. Last Sunday we were able to go to church as a WHOLE family, well at least Sacrament. Jeff and I have been taking turns going for the past four months. Yesterday we went up to the Park City Outlets shopping. We pushed her around in her stroller, only going into a few stores, but it felt nice to get her out.

After shopping we headed over to Dairy Keen in Heber City. This is the first time that we have taken Gracelyn into a restaurant with us. It wasn't until there that I became anxious. We never took her out of her car seat and washed up before touching her, but I still worry so much about her getting sick. She recently had her last synagis shot (the $1200 injection she gets every four weeks), so I know she is somewhat safe since that will be in her system for a few more weeks. It has been interesting to watch the little kids stare at her. Both at church and at the restaurant the little kids would stare and ask their parents what she had on her face. I've never been one to like attention, so it has been a little difficult having people stare at her the way they have.

On Wednesday my sister was able to get her to roll on to her back anytime that she would lay her on her belly. Sunday she finally went from her back to belly.

Monday we went for a hike up Ogden canyon. Gracelyn's first hike. I strapped her to me and away we went. She LOVED it! When we first put her in the carrier she wouldn't stop smiling. She was so happy. She talked to us the whole way and stayed awake the entire hike.

Last, but not least, Gracelyn finally laughed for her dad. Jeff was playing peak-a-boo with her and I must admit she giggled and giggled and giggled for her daddy. Have I mentioned she did laugh for me first? :) Lots of fun firsts this week and still lots to go with our sweet girl.

"She has come a long way..."

Jeff and I are sitting in the post-operation area with Gracelyn right now. She is doing very well. She woke up for a bit to eat and once we wrapped her up and gave her her binki she went right back to sleep. I am overwhelmed with gratitude to say the least. This place keeps you on such an emotional roller coaster. I was worried about throwing up the whole way down because I was so nervous. Right now I'm having a hard time keeping in the tears in I am so happy.


Gracelyn was scheduled to be in the cath lab for four hours and to stay overnight. An hour and a half into it we were called to come see her. We knew that if they were going to work on her they wouldn't have been done that fast. We expected to hear surgery would be soon and that is exactly what they told us. The papers have been submitted to get her on the schedule and it is expected to be in the next four weeks. We have tried to stay optimistic while realizing what reality actually is. We have been told that if her right ventricle was going to change in size we wouldn't begin to see improvement until at least six months. The conversation we had with the doctor after today's cath was a bit different from what it was when she was two days old. At two days the doctor could hardly look us in the eyes when he told us we had a long hard road ahead. Today as he showed us inside her little chest I couldn't help but interrupt him and question if it was just me or if there was a big improvement in the size of her right ventricle. He smiled and said, "We can definitely see a difference, she has come along way from the first time we saw her." We talked for a bit. He explained that she has had muscle grow around the ends of both her stent and shunt and the risk of trying to fix it to buy her a little more time wasn't worth it when we know she needs the Glenn surgery either way. We aren't excited for surgery, but are anxious to get it over with and get her back to healing again. If Gracelyn's heart continues to improve we have a chance of avoiding her third surgery, the fontan. The glenn shunt is actually made of her native tissue and would grow with her as she becomes an adult, so there would be nothing to remove and possibly be no other heart surgeries. During the next surgery they will remove her BT and stent.


Grandpa, Grandma, Camee and Mr. C were upstairs waiting for us. Unlike the last cath, where we sat down stairs not wanting to go up and break the bad news to our family, I could hardly wait to get to them this time to tell them of her improvement.


We are so grateful to her doctors. Gracelyn was a "pioneer" in what was done with her stent. That was the first time that the doctors have done what they did to her. This stent is what probably provided increased flow to her RV and gave it reason to grow. Before leaving the doctor, I asked him one last time about her future (knowing the answer to be "only time would tell" of course) and he responded, "Just live for today, that is what you need to do no matter who you are. You never know what life can bring."


I guess this is the point where we say THANK YOU! People are always asking what they can do to help us and we always respond that all we need are prayers. Today it became evident that all those that constantly remind us that they are praying for her REALLY are praying for her. So, THANK YOU to those that continue to pray for our beautiful baby and family. Prayers are all that we have to offer to help our girl improve. During the last LDS conference one of the shows in between sessions showed a mom of a sick child. At one point during her interview she said, "I had to decide between faith or fear, they can't exist together." That short sentence changed me. She was right. How could I say that I trusted Heavenly Father and have so much fear at the same time?


Since the doctors didn't do too much we will actually be going home tonight. We have a few more hours for her to be monitored and we will be heading home! YEAH! (and yeah if you made it through that long post :) )

Cath Lab...

We had to wake Gracelyn this morning at 5:00 a.m so that she could be done eating by 5:30. We set the alarm, but she woke up around 4:30 a.m. :( I spent the rest of the morning just holding her as she slept. Mr. C decided to join us and I couldn't keep him from "loving" her.

Before we left Grandpa and Daddy gave her a blessing. As always, Jeff gave her a beautiful blessing. He blessed her to be strong and the doctors to be guided to do what was best for her. On our way to Primary's the hospital called looking for us. The doctor was way ahead of schedule. They wanted her right then. We went to check in and the doctor was there waiting for us. He told us that they were going to go in and "look around" first. Once they got a good look they would decide what would be best to do. They have the possibility of opening the shunt and/or stent. He hopes that they will be able to do something to buy her a few more months before they operate and replace her shunt. The surgery is scheduled to last four hours and she is scheduled to stay overnight. She has been in for an hour and a half now. We hope to hear from them soon. Sweet Gracelyn right before she went in. She was so happy and just smiled at the nurses as they took her away.