Thursday, April 30, 2015

End of Day 3

Grace is doing well. I wish that she would eat and drink more, but her little body has gone through so much. I don't blame her. She is pretty quiet. She doesn't talk much. One word we have heard a lot is "Guys." Every time she gets frustrated or is in pain she won't yell or complain, she just says, "Guys, Guys, Guys, Guys...." Her dad and I have found ourselves giggling a couple times at it. It's actually Jeff's fault. He laughs and then it makes me laugh and then I get mad at him for making me laugh. ;) After our afternoon visitors left we were able to get some much needed rest. The three of us slept for a couple hours. We woke up just in time to see our favorite visitors. Grandpa and Grandma came to visit. They brought Gracelyn's siblings down to see us as well. They also came bearing gifts. Gracelyn loves Hello Kitty. Quite a while ago Grandma found the perfect Hello Kitty. It was pink and covered in hearts. She has been waiting until the surgery to give it to her. Gracelyn loved it. Grandma's soft heart had to stop at the Build a Bear store on the way down to the hospital, just so the other kids didn't get hurt feelings. Build a bears all around.

Shortly after they arrived, my sister and her family came. They came with awesome gifts as well. She got some decorations to make this boring room look awesome!

We thought that it might be nice to get some fresh air. I hadn't been outside since Monday and we'd heard all day long how nice it was out there. We talked to her about going for a ride to the Hope Garden and she agreed. We had some nice family time out there.

We brought everything we needed to comb her crazy hair and paint her nails. Grace, her sister and her cousin had a little manicure party out on the patio.

She didn't talk much and was very tired, but she said she liked being out there. We could tell that she was exhausted and called it a day. As we were walking back to the room our nurse came looking for us. She said we had someone trying to find Grace. She said that it was a women from Waterford Institute. I knew just who it was. It was our representative from Rusty and Rosy. The state of Utah has an AWESOME reading program for four year olds to participate in. It doesn't cost anything, but we HAVE to use it 5 times a week or they will take it away. Grace has done great with it. She is starting to read and is a pro at math. I needed to make them aware that Grace wouldn't be doing the program for a while because of her surgery. I've talked with our sweet representative a couple of times about it and she was very understanding. Well, on her own time she came to bring Grace a gift from Rusty and Rosy and their whole team. We were SO touched. It was such a nice surprise and so appreciated. There are some awesome people in the world. She is one of them!

Grace has had an IV in her hand that has been hurting pretty bad. Her hand is even swollen from it. She has other lines and so the nurse thought we would be good to remove it. Once again, Grace insisted on doing it and the nurse let her.  Her nurse Anya, helped her remove the sticker over it and Grace pulled it out.

We decided that daddy needed to leave and go home to be with the other kids for the night.  Grace got her Teddy Bears all dressed in their jammies and we be fell asleep quick. This hospital stuff is exhausting.

Wednesday, April 29, 2015

Day 3

Gracelyn had a good night last night. We were all able to sleep from 11:30-4:30. I didn't think that was possible at a hospital. It was a very uneventful night.  They woke us up at 4:30am for blood draws. I was really nervous about it, but she did great. It still took four of us to keep her still, but she didn't scream, so we are making progress. At 5:30 they came back and took us down for x-rays. She hadn't sat up on her own yet, so we were nervous. Her dad carried her to me and they let me hold her in a wheelchair to get her down to the lab. We continued to use the diapers through the night, but we promised each other that we would get up and use the toilet today, and she did. I know it is so hard on her, but she is a good sport about it. It takes three of us to get her in there. Nothing like having an audience.  Grace is still telling us she won't eat anything. Her dad offered her a donut and she agreed to eat one. She didn't really eat much of the donut, but the frosting must have tasted good because there wasn't much left. Jeff offered her a sausage and she ate it as well. Woohoo!

The awesome hospital volunteers did a BINGO game this morning. They broadcast the game over her TV. when she got BINGO we called in and they brought a prize to her room. So fun!

Her awesome teacher arranged for something super special thing morning. She was able to FaceTime her class. She was so happy to see them. They all had their "Gracelyn Strong" shirts on. They each took turns saying hello. We heard so many "I love you, Gracelyns." It was the sweetest thing. She has missed them and her teachers.

After talking with them she asked for a project to do. We broke out her needle work Hello Kitty and she spent a while sewing. :)

Our cardiologist stopped by and was very happy with how she is doing. Amazing is actually the word he used. {Have I mentioned that we think she's amazing too...?} Our nurse practitioner came in and told us we were good to take one chest tube out. We loaded her up on Morphine and oxycodone and took them out. I was going to leave because I've heard how painful they are to remove. I didn't want to watch her hurt. It hurts me too much. I was a big girl and stayed by her side.  When they removed her chest tubes 5 years ago, the NP counted down as she did it. She said, "3,2, the way blood is going to splash everywhere! 1." Jeff mentioned this earlier and so this time they brought him in a gown to tease him. They didn't want him to get blood everywhere. We were able to get it out without too many tears. They took her bandage off of her incision and it looks great. I use to fear I would hate the scar, but I'm so proud of it. It tells a great story about her. The surgeon stopped by. He told us that he was only going to take the one chest tube out today, but the others needed to stay. She is still pretty wet and we need to work on getting fluid out of her. He said we could talk about taking them out on Friday and do another echo at that time. We talked to her this afternoon about eating and she said that she wanted more sausage and a smoothie. She only ate the sausage. Since Sunday she has had donut frosting and 3 sausage links. There's no shame in a sausage link diet. I would do it too if I could get away with it. We had a few visitors this afternoon.

My cousin Craig came to see us and Jeff's brother, Brian, and his family came to say hi. Gracelyn says that her cousin Carrigan is one of her favorite people. You can tell from how Grace cuddled up to her in the picture that it is so much more than that. These two genuinely love each other. I'm so grateful to these girls and the love that my baby feels from them.

Grace was told she needed to walk today to get things that aren't moving so great, moving again.  I asked her if she would go for a walk with Carrigan and she agreed. It was awesome! She took Carrigan's hand and walked from her door to the hallway wall.

Day 2

We had a super busy day yesterday. We are SO tired. We were pulling out wire after wire and we had a room change...TWICE. I'm still not sure how I feel about it, but 24 hours post-op we moved upstairs to the surgical unit. It was so comforting to have a nurse by her side every minute, I will miss that. It wasn't a fun day for her. She was quite nervous about pulling wires out of her body. She still has several to go and she still has her chest tubes in. They are causing her quite a bit of discomfort. The nurse ordered her some mac and cheese and sherbet, but she only got one bite down. We can get her to sip ice water, but she won't eat.

 Before we moved up stairs they pull of few more things off of her. She insisted on doing it on her own. The nurses would tell her where to pull and she would do it herself. It made her feel better being in control of the discomfort. The one that got me the most was her urine catheter. She told the nurse she was going to do it and the nurse told her she'd let her if she could get it unclipped from a clip holding it in on her leg. She unclipped it,  the nurse deflated it and Grace pulled it out on her own. She's nuts! The nurses ate her up and were all so proud of her. Before we left we had one nurse tell us that Grace would be the Fontan patient that she'll never forgot. We are all in awe at her determination and progress.  We brought her to the floor and got her settled and tried to rest for a bit.  She was given some of her pain meds and became really sick. We were able to get by without her vomiting.

Grandpa and Grandma Hales brought all of her siblings to the hospital to see Jeff and I and have dinner. We all miss each other.

Because we moved floors and the restrictions were different, Grace was able to see her baby sister. They were all so happy to see each other and us. It has been two days since I've seen them. We are so lucky to have my parents to do whatever it takes to keep our family connected. The kids had little gifts they had made her. After they left we had a rough couple hours.  She had the sticker from her catheter that was still on her leg. Her and her dad spent about an hour pulling it and some of the other adhesives off. She hates that part.

They started Grace on her diutretics and she needed to go potty so bad. We unplugged everything and loaded her up. It was quite the production. She struggled so bad and never could go. She really started hurting from a full bladder. Her back was even hurting her. She gave in and agreed when I suggested a diaper. After lots of tears, she finally was able to go and has felt much better every since. On the way back to her bed she volunteered to take a couple steps. We couldn't believe it. This girl can do what ever she makes her mind up to do. We continued with diapers during the night and it helped a ton with the pain. As I was putting a diaper on her, after being potty trained for 3.5 years, I found myself in a moment I had 20 years ago. I was at an appointment with my grandma, the one who had a bad mitral valve and had four open hear surgeries. I remember her doing things that, for most of us, would be very uncomfortable and embarrassing. My grandma just did it. No questions asked. That is exactly how I saw Gracelyn last night. Shortly after, without having talked to my sister,  I received a text from my her, "She is so amazing and a fighter! A quiet, patient fighter! She's like her great Grandma Murray."I thought it was the perfect way do describe her. This is why we gave her my grandma's middle name "Louise," it means "Warrior." Grace is the most sweet and gentle little girl, but she has such a fight in her. 

Tuesday, April 28, 2015

Morning of Day 2

Gracelyn is doing SO great. I went down for shift change at 6:30am this morning.  I was in shock. My sweet girl looked so different. She had rosy cheeks and bright pink lips. She looks beautiful. I am so excited to show her her lips!  She had a good night. She slept well. She hung on to her bear Uncle Jared and Aunt Amber brought her all night. She is less sleepy this morning. Line after line are being removed. She is talking to us and telling us what she does and doesn't like. :) She is able to drink now. She doesn't want anything but "VERY cold ice water." She has wonderful nurses they are talking great care of her. Right now she is on one on one care. It's very comforting and makes it easy for us to step out to get fresh air. They moved her to a different room. We are in room 13 now. Grandma Hales and Camee came to visit. Camee and I were able to get her head up enough to comb through her hair and get her hair in a pony and headband. That made her happy. They recently took the arterial lines out of her neck and left arm. Because of that, they want her super still for two hours and then we hope to have her up sitting up. We've tried keeping her distracted and comfy by playing music through her ipod.

My daughter is so beautiful. Inside and out. I can honestly say that I have never met anyone sweeter than Grace. She is being so kind to everyone, despite the pain they are putting her though. Everyone is eating her up.

Surgery Day

Yesterday was exhausting. Good thing is, WE SURVIVED IT! Every one of us. I am so proud of my sweet daughter. I'm proud of my husband, my children and myself. What we had to do yesterday was not fun, but we did it. We made it through such a hard day because of SO much support and Heavenly Father's love. I'm grateful to my parents, sister and brother-in-law who took care of my other children when they wanted to be at the hospital so badly. We couldn't do it without them. I am grateful to wonderful friends. I had so many friends offer to help with my other children. My sweet boy was able to be picked up by some great friends and kept until my sister could get him. We spent a lot of the afternoon with both of our parents by our side, waiting for Grace to get through surgery. It was such a relief to hear she was done and okay. They kept us updated all day long. It took a lot longer than we anticipated. She was in the OR for nearly 9 hours. She had a lot of scar tissue to get through. Around 3:00 we were finally taken back to the CICU (Cardiac Intensive Care Unit-Room 6) to see her. She looked fantastic. It was much better than when she was a baby. She was quite pale, but she was pale pink, and not so purple anymore. She had tubes, and cords and wire coming out of EVERYWHERE.
Her grandparents were able to go in and see her right away. She was still very sedated, but when she heard her dad's voice, she began to move. We tried to talk to her to let her know we were there and she would respond. She was extubated by the time we got to her, but she still had something in her mouth to keep her airway open. She kept trying to take it out. Once she was able to try to push it out herself with her tongue, they let it come out. She would try to talk, but her voice is very raspy from all the tubes she had down her throat. She started waking up some and became very anxious. She just kept whispering, "get it off." She has chest tubes in and she is really uncomfortable with them. We gave her more morphine, and have kept her comfortable with it since then, and she has done much better.

Gracelyn's Aunt Camee and Uncle Kurtis came down for a visit and later her Uncle Jared and Aunt Amber came to see her. Jared and Amber brought her a darling heart bear. After surgery she quickly developed a fever. The nurses told us that it was typical after being connected to the heart lung bypass machine, but they were concerned with how high it was. We spent several hour with rags on her head, wet blankets on her legs and the ice pack on her chest. It slowly began to drop around 10:00 pm and we were comfortable enough to be able to sleep. Primary Children's has a new area in the hospital that is an extension to the Ronald McDonald house. It is really nice. The have rooms, showers, laundry rooms, kitchen, computers, meals brought in....everything we could possibly need to be comfortable while here. Jeff and I stayed the night in one of those rooms, it is just one floor above the CICU and worked perfect since we didn't want to leave the hospital.

 It was such a long day, but it is so great to have that day behind us.

Monday, April 27, 2015

She's DONE!

The surgeon just came and met with Jeff and I. Gracelyn did great. He gave us the piece of Gortex to show us what they placed in her today. During her first surgery they placed a tiny piece of Gortex tubbing in her. In the second surgery they used her native tissues to create a shunt and this is the piece of gortex they just placed in her for the Fontan. It is HUGE. We should be able to go see her in about 15 minutes. They were trying to get her breathing tube out before moving her to the cardiac intensive care unit.

{Update 3}

We just received an update that Gracelyn is off of Bypass. The surgery went well. They are finishing up her post-op echo and they will close her up if all is well.

{Update 2}

We just received a call saying that they were still trying to get through scar tissue. They hope to have her on bypass in the next hour.

Heading to the OR

We were so blessed with such a brave girl. We got her up at 4:30 and without complaining she did all she was asked. We surprised her with new Gracelyn shirts and her own "Gracelyn Strong "hospital gown. We met with the child life specialists before she went in. They gave her a doll with a hospital gown to color on. She was so anxious with the last procedure that it was recommended that we give her versed (a drug to help her fall asleep) before she even leave us. We met with the surgeon, anesthesiologist and gave her the drugs to fall asleep. He dad held her, all wrapped up in her prayer blanket as she became sleepy. They wheeled her off in her wagon around 7:30 and we told her goodbye. Super hard! I love her so much. Not such a fun day. I'm so proud of her, her dad and myself. We all stayed super strong. We were told that it would be about 5 hours. We received a call at 9:00 that they had started to cut into her.

The day before...

We had a nice weekend just spending time together. We had visitors dropping by up until the last minute. We all managed to stay smiling and strong until our little guy lost it. It was so hard to see. He fell into my arms sobbing.  We didn't know exactly why. I can't imagine what is going through his little 8 year old mind. He was afraid for her and afraid for him. She is so lucky to have such a great brother.  My mom gave her her prayer blanket last night. I'll post pics of it later. She loved it. 
She packed bags with ALL the gifts that she was given. It was like Christmas at our house. We are so appreciative of all the thoughtful people that stopped by to let her know she was cared for. It meant a lot to us. We are grateful to all those that remembered our other children as well. This isn't easy on them. Gracelyn was so brave and patient. We had to do some weird things that we've not done before her other surgeries. She was so great to do whatever we asked.
She received the perfect nightgown from her friend Heather.  It was a superman logo, filled with hearts and it said "Invincible."  

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

Sunday, April 26, 2015

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.

Friday, April 17, 2015

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.