Priesthood Blessings

Yesterday Gracelyn received a priesthood blessing from her dad. He always does such beautiful job. My dad, Jeff's dad and Jeff's grandpa were able to help. I'm so grateful that Grace has all these men in her life that are worthy to hold this special power. Our bishop suggested that Jeff also receive a blessing from his father and me from mine. I'm grateful for the suggestion and for the special blessings we both received

Pre-op Appointment

Gracelyn had her pre-op appointment on Friday and she did great. She was so brave for the physical and x-rays. It wasn't until the blood draw that things became a little difficult. It took four of us to hold her down. Ya, not my funnest mom moment. 

These are her chest x-rays from Friday. I would think they were pretty cool if they were pictures of someone else, but since it's my baby....they are not cool at all. You can see the six wires down the center. Those are the wires they placed in the last surgery to hold her sternum together. We will get some new wires soon. ;)

Everything looked great at the appointment. We were told that she would be first case Monday morning. We have to be to the hospital by 6:00a.m. and surgery will be 7:00p.m. They anticipate the surgery to be 5 hours long.

Prayer Blanket

Some of you may remember Grace's prayer blanket from her last surgery. People would always tell us they were praying for her. We came up with the idea to have families bring a piece of material that could represent them and the prayers they were saying for her. When we handed her to the doctors to go in the OR, she was wrapped up in the blanket.

We would like to do the same thing again. My mom is making her another prayer blanket. This time, since she is old enough to read, we want names written on them. We will supply the hearts this time, so they are all the same.

If you are interested in writing on a heart, let us know. My mom has some and so do I. We will surprise Grace with it when talk to her about the having the surgery. Feel free to call or text either of us. My number is 801.645.1379.

Pre-Fontan Cath Lab - 4.14.15

On Tuesday, April 14, Grace went in for her pre-fontan cath. I am always so scared of these. She had one at two days old. That night she coded and they had to resuscitate her three times. We also spent the next seven days trying to find a pulse in her right leg, the leg they entered in for the cath. They questioned at that time that we may lose her leg, it was dark purple for weeks, but seemed to recover. She also had a cath before her last surgery, they went in her left leg and had no problems recovering.

Grace was SO cute and silly as they were doing her physical and preparing to take her down to the lab. She had them all wrapped around her finger instantly. We brought down her own hospital gown that was made just for her by an amazing volunteer group. It was pink and purple with Hello Kitty on it. We surprised her with it and she loved it.

She did very well until we hit the doors of the cath lab. As an adult I think it is about the most intimidating room I've ever walk in. I can't imagine what she thought. She froze. She grabbed me around the neck and wouldn't let go. She had the greatest anesthesiologist who started playing Tangled on his phone for her. He got her a mask that was scented with root beer and they started playing Disney music throughout the whole room. They let me go in with her. I sat her on the table, told her how brave she was, laid my head on her shoulder, with the mask to her nose and we watched tangled together. She slowly got heavy and feel asleep in my arms. Once I knew she was asleep the tears began to flow. With "At last I see the light" playing overhead (the ONE Disney song that gets me every time), I lost it.  I was so proud of her, and actually of myself too. We both did so well. ;)

Before we went in we asked to speak with the cardiologist who would be doing the testing. For years Grace has dealt with MAJOR leg pain on her right side . At night time she SCREAMS and screams in pain. We usually get the leg warm and get Tylenol in her and she calms down. It's all we can do to help. For her birthday this year, my parents bought her an electric blanket. PURE GENIUS! She has only had the pain during the night 3 times since then. It's been a huge blessing. Her right foot is also 1.5 sizes smaller that her left and recently while hiking we noticed a difference in leg size. We were concerned about which leg we wanted them to go in. We were afraid of hurting right the leg even more, or hurting her good left leg. We have a good friend that has been a nurse for 20 years suggest that we ask them to run some contrast in it to see if they can see some damage. They doctor was so kind. He suggested we use the left leg and said he would love to see if they could find anything wrong with her right leg. They told us to plan on a a three hour procedure.

After only ONE hour we received a page to return to the lab. I was SO scared something was wrong. NOPE. Nothing. Everything was PERFECT and she was done. No coiling needed to be done and there was nothing to repair in order to prepare her for surgery. The pressures in her heart were even perfect. She was in the lab having her pre-surgery echo done when we got there. Dr. Gray told us that she was a poster child for the Fontan. The surgery was designed for children like her. It was a huge relief. We could have gone in and found out that things weren't just right, but it was the best option or even that she wasn't a candidate and her only option was a heart transplant. As much as I've dreaded this surgery, at this point it is a blessing that it can be done. As far as her heart goes, nothing could have been better.

They moved her to recovery and she did great. When we got to her, she was even on room air. They had planned to admit her because of her history, but the doctor felt she was doing well and said he wanted her home, not bugged by nurses all night. He didn't have to talk us into leaving. We drank lots of Rootbeer slushies, popsicles, downed some mac 'n cheese and we were on our way.

Here is the reason the update has taken so long. I've spent the last few days digesting and accepting and learning about her new trial. We have spent years talking to the doctors about her leg. We finally received an answer. I really wanted them to find something wrong, so that we had something to fix. We got part of that right. As the doctors looked at the contrast they put in her leg, they quickly found that Gracelyn has NO femoral artery.  (The femoral artery is the main artery in our legs.) At two days old the cath docs damaged it and she has since lost it 100%. I don't know how my daughter didn't bleed out, I don't know she didn't lose the leg, I don't know how she has been walking for the past 4.5 years. The doctor said it is extremely rare for it to happen and that he's only seen it one other time. My daughter truly is amazing.

Wednesday morning it all hit hard. I usually don't cry about it all around the kids, but I cried from the minute I woke up that day. My poor girls came to me before they even ate breakfast, Grace said, "Mom, we talked an we want to go to grandma's." :) They did't have to convince me, we all got right in the car. When I found out Grace was sick, nearly 6 years ago, I went though a mourning process. I mourned all the things we thought we would lose with our daughter. It lasted months. I was devastated. It's happened again. I had accepted the doctors' choice of the Fontan, simply because they said she would feel so much better and be similar to a "normal" child. The truth is, she won't feel all the way better. Ever. A lot of her walking problems weren't due to having half of her heart, they were because of her leg having such bad pain. I thought by summer next year we would be hiking all over the place. I've spent the last few days realizing none of what we have planned will probably ever happen. I cried and pouted for a bit. I've felt insanely guilty for pushing her to keep going, when I thought I was helping her to get stronger. I'll probably pout for a minute more, but I'm going to over it. I'm working on getting records sent around the nation to see what we can do to help my beautiful strong little girl. Cardiology told me nothing could probably be done to ever help her. They said that to the wrong mom. I won't stop searching for a solution. Not this mom. Not ever.

I have looked at her completely different the last few days. She is stronger than I ever knew she was. She is so much stronger and braver than she will ever know.

(Are these shirts not perfect?!?! They say, "Stay Calm - I Got this!" With the heart superman logo. I Love them!!)

Get Air

We asked Gracelyn the question, "If you could do anything or go anywhere, what would it be?" Over and over again she told us that she wanted to go to a trampoline park called Get Air. It is such a funny request because she can't make it jumping 30 seconds without getting winded. The other problem was the fact that it is a public place and Grace hasn't been out in months. Too many little kids....too many germs. After a friend heard of her request she contacted Get Air and made special arrangements for Grace and her friends to go on a Monday before they opened.  It made it so the place would have sat empty the entire weekend and all of Monday before we got there. I felt comfortable with that.  Without telling her, we made arrangements for her cousins and friends to be able to meet us there this past Monday. Early in the morning we asked her what she wanted to do during the day, she said, "Something fun!" We asked what that would be, and of course she replied, "Go to Get Air!"  We could finally say YES. We all went dressed in our Amazing Grace shirts and had the entire place to our selves.  She had such a great time! I am so grateful for such wonderful people in the world who see how deserving this little girl is. This was something so small and normal to most people, but it is what she has wanted so bad, but couldn't do.  Thank you to all who came with us and to the kind Manger of the Kaysville Get Air. Before we left he gave her her very own Get Air dodge ball. I doubt my kids will ever forget this!

November's Cardiology Appointment

Every six months Gracelyn has a cardiology appointment at Primary Children's Hospital. In November we had the appointment that we have been dreading the most for the last five years. They told us that it "was time." It was time to have, what I claim as the worst F word in my vocabulary, the Fontan. This is the final part of her series of three surgeries. I have feared it the most. I have fought it the most. I have believed it would never have to happen, but her Doctor tells us it's time. When we talked in November, the doctor suggested April as a good time. She has to have quite some time to recover and he wants her to be able to have a good summer and be ready for Kindergarten. We aren't excited about this, but the doctors believe it's what she needs and tell us that post-Fontan, she will feel GREAT.

Grace at 5 years old

I've used Gracelyn's blog as a place to journal major events.  It's so hard to remember all the little details when so much is going on. This personal and sacred space has become a place where I can go back and remember exactly what took place and when Grace is older she can understand just where she has been and how far she has come.  With four children now, it is hard to keep up. No MAJOR events have taken place in some time, but there some things I wanted to share. They may not seem like a big deal, but sometimes the little milestones are such a big deal for a heart kid. Grace was able to start her second year of preschool in September.  Her little sister is in the same preschool, but in the younger class. It has been so fun to have them together. She has begun to read and write and is quite the mathmatician. 

She is no longer our middle child. In September she became one of my big kids, when we delivered a THIRD little girl. Grace adores her and is my biggest helper. I couldn't get through my days without her help. We made it to the 5th anniversary of her first open heart surgery. Each year we deliver a gift to Primary Children's hospital on that date. This year our message was to find "Joy in the Journey." 

We have stayed very active in our support group. Intermountain Healing Hearts. We are so grateful to have them all. The past few years I have had the chance to design the shirts for our annual "Walk for healing hearts."

 Grace loves to laugh and loves it when people laugh at her and tell her she is funny.

There are so many things she gets to do that would be so normal to many, but at one point we questioned that she would ever be able to do.

She spends many of her weekends in the summer camping.

Each year she takes a trip to Lake Powell.

She LOVES to swim. It is so relaxing to her. I often find her floating on her back with her eyes closed.

She has to keep up with her brother who is three years older than her. Whatever he does, she has to as well.

She likes to be involved in whatever I am doing. She is by my side in all my "projects," as she calls them.

Grace is part of a group called Hopekids. Each month they provide dozens of activities for kids with life threatening diseases. Each year a group puts on a princess party called the Hope Ball. It is one of her favorite activities. She gets to dress up like a princesss, go to a castle and dance with the all the Disney princesses.

One of her favorite places to visit is St. George, Utah. She loves it there. We do our best to hike her around the red rocks and get her to the top.