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.

BEST AUNT EVER!

One night after separating donations for the garage sale, Aunt Camee gave Grace a gift. Inside her gift was this AWESOME Boston shirt. We loved it!! There was also an envelope with tickets to the Boston Children's Museum and Tickets to see the RED SOX!! We were so excited! Thank you Aunt Camee!! We love you!!

Boston Fundraising...

I didn’t get a chance to write about all the wonderful fundraising events that took place before we left.  When Gracelyn is old I want her to know what took place in order to get her to see the doctors  in Boston.

I have to thank my sister and mom before anyone. They are the ones that headed every thing. I truly know what my daughter means to them. They were willing to do anything and go to any effort to help. THANK YOU! We love and appreciate you so much!

When friends found out that we were going to be heading to Boston, immediately offers came in to help. One friend suggested shirts. A week earlier I had made a design for an Amazing Grace team shirt for a 5K we were participating in. We ended up using the same design. My friend Tara Roberts took over the sales of the shirts and did a great job! It was a huge task! Especially since Grace decided that she wanted all of her “friends” in pink shirts after she was given her pink shirt (everyone else was in grey). Thank you Tara! We love our shirts!

The first event was our Golden Corral dinner. My sister found out about this opportunity and it was so much more than we could have expected. It was a blast! Jeff and I were a little late showing up because we had back to school night for the little man. When we arrived then place was full of family, friends and neighbors in the Amazing Grace shirts. We were without words. Our Amazing Grace team waited on the tables. They would get drinks and clear the tables when customers were done. They were given all the tips to go toward Gracelyn’s fund. There were so many generous people that gave large “tips” for a little girl they’d never met.  Customers kept asking for her and within 20 minutes of arriving we had to go back home and get her. My parent’s 17 year old neighbor came to help for a “little bit.”  He ended up asking his parents if he could stay the whole time. :) I really was that much fun!

The Yard Sale-WOW! This event was incredible  My mom came up with the idea. No one in my family had never had a yard sale before, so we didn’t know what we were doing or what to expect.  My mom started taking donations and her house. Quickly her three car garage was full. We then moved onto a huge trailer until it was full and then filled my three car garage and trailer. My mom and her friend Tami Myers, along with Tami’s mother separated and priced EVERYTHING. It was a HUGE task! HUGE! So many hours were put into organizing it. Originally it was set as a one day event and turned into two full days. We had so many things, there was no way one day would have been enough.

On Friday morning we headed for the Jackson’s yard. They were SO kind as to let us have it in their yard. It was the perfect location. We knew we would have my parents help and two of our best friends Brandon Barnes and Celeste Rice. We didn’t expect anyone else, but people just started showing up. All the garages were quickly emptied, tables set up and it began. We weren't scheduled to start selling until 2pm, but by 9am we had a large crowd and it didn’t stop until 6pm Saturday when we started loading up what was left. There were a lot of friends that showed up and just began organizing. 

Saturday morning was wonderful! When we showed up we had friends, family and neighbors with aprons on cooking pancakes at our Pancake Sale.  It was a great idea my mom had for those who weren’t interested in buying things at the yard Sale. Jim Knight brought all of the equipment over, my Uncle Jim, Kim, Glen and Justin Porter and Scott Wade made all the pancakes. Thank you!

Katie Ellis offered to head up the Bake Sale. She did a great job! Again, things just kept coming and coming. So many donated to this I don’t even know who to thank. I don’t know where half of it came from. What I had was delicious!  I do know there was some awesome chocolate cake from my sister-in-law Amber, some cinnamon rolls to die for from Teresa Lake and some very fitting and perfect HEART cookies from Annette Wade. Thank you everyone who donated to the Bake sale!

My sweet cousin Adam sat at a table both days taking orders and making paracord bracelets. This was such a fun idea. I had no idea he was coming, but all the kids loved it! Thank you Adam!! 

Thank you to all that came.  We were joined that day by people from every part and time of our lives. 

We truly felt your love that day.  Jeff and I  didn’t get to see each other much since we were running like crazy both days, but when we did we would just look at each other smile. No words could express what we felt. 

On Friday we had a little rain and wind. We were able to keep things from being ruined. Uncle Mike brought over HUGE tarps and we covered it all over night. Saturday was beautiful! 6:00pm came and it began to get dark. We knew the storm was coming. A text went out to all of our Elders Quorum and Young mens group. Within minutes the whole thing was down and our DI pod was filled with what didn't sell. Thanks to Jared's "tetris skills" (as he called them :) ), everything managed to fit into one pod. As we were finishing loading the rain came down! It poured! My phone was filled with texts telling me that it was a miracle and gift from God.  I know Heavenly Father answered our prayers.

Mom, dad, Camee, Tami, Diane and The Jackson family- Thank you! We could not have made it to Boston without this event. This event didn’t just give us the means to get there, but it provided us with the knowledge that we have a lot of people standing behind us. 

 

Thank you to Jodi Brown for setting up a fundraising page. We appreciate the effort you put into it! It was so thoughtful of you!

Last, our Chick-fil-a dinner.

It was an amazing feeling to arrive and see that ¾ of the restaurant was full for our daughter.  My sweet cousin CJ surprised us behind the counter. He works at Chick-fil-a in Logan. When he found out about this event he arranged with the owners to work his shift in Riverdale. I can't express what this meant to me!!  We love you CJ! THANK YOU!!

It was a fun way to be able to see friends and family one last time before we left. Thank you to all who came! Thank you Chick-fil-a Riverdale! We had an exciting night (those there at the end know what I mean) ;)