When the truth hurts....

I suppose I stopped blogging for the last few weeks because it made it easier to forget about our world as it actually is. I guess if I ignore things I think they will go away. Well nothing has gone away, but they are certainly becoming easier to talk about.

A few weeks ago when Grace went in for surgery I mentioned some things that the doctor had shared with us as she was getting ready to enter the OR. I didn't have the courage to write them then. I haven't really shared them with too many people. They aren't things I necessarily want to talk about. It was awful timing, but when the surgeon came to talk with us before surgery he told us that Gracelyn would for sure need the next surgery. The Fontan. This is the surgery we were hoping to avoid. It basically re-routes her heart so that only half of it actually is working. After we handed her over I went to the car and cried for a while. It was harder to hear that news than it was to send her in for her surgery. I didn't know what to do or think. It was me that now had the broken heart. I really in my heart thought she was going to be okay after her Glenn surgery. I was convinced. I am coming to accept that she is a lot sicker that I ever thought she was. She really is like those OTHER babies. I have often thought and said she wasn't. Grace came out of surgery and all I could do was thank the Lord that she was okay. I would have been extremely ungrateful to feel otherwise, despite what her long term plan is. When we were ready to be discharged the surgeon came to speak with us. I questioned him then. I asked him to tell me that there was absolutely no way that her heart could grow. He told me it probably wouldn't, but anything could happen. It was the small piece of hope that I was going to survive on for the next few years. It was all I needed.

A week and a half later I was at a check up with our pediatrician. After he told me how great she looked he said, "So they have obligated her to the Fontan." I said, "No." He said, "Yes." Again I replied, "No." He pulled the report out and let me read it. He showed me where it read that they had over sewn her pulmonary artery, making it so that nothing was going to her right ventricle. If nothing is going there, there is nothing to help it increase in size. I was devastated. How did I not know? In my heart I knew it was right, but didn't want to get too upset until I heard it straight from the horses mouth. In the meantime I received the bill. I didn't know what one of the procedures listed was. I googled it. It told me what I didn't want to hear. Last Wednesday when we went down to Primary's for a check up we questioned them. It was the truth. Nothing short of a miracle will save my little lady's heart from becoming a single ventricle.

I have had some time now to deal with the news. Since them I have come across blogs where the parents were just praying that their baby would qualify for the Fontan. It would beat the alternative. We have a few years and I will pray until then, with everything I have, that there will be amazing advances in medicine. They are currently working on a tiny pump that would assist the heart of those that only have a single functioning ventricle. I hope that is in Gracelyn's time.

It is not the end of the world for Gracelyn. There are plenty of things much worse. I do realize this. It just wasn't the path I had placed her on. Yesterday we watched in the canyon as five young kids lost their lives in a split second. It helped put things into perspective. I know our time here is so precious. I know we should be so grateful for it, despite the challenges it has to offer. I know I am learning and growing, in ways I never thought I would have to. I am finding I am a lot stronger than I could have ever imagined I was. I know I have a lot more growing ahead. I am so grateful to Heavenly Father for giving us our little lady, for trusting us with her. We needed everything her sweet spirit has to offer in our lives. I feel so lucky to have been blessed with the beautiful children we have been given.

Mason's Night of Celebration...

Wednesday night we attended a benifit for a little guy we have come to know through the blog world. He an his mom have been living in California since February waiting for a heart on the transplant list. He received his new heart on Easter. They hope to return home to Utah in the next few weeks. Even after insurance, the family has a lot of medical bills. Currently they are spending $1800 on meds each month. Friends decided to try and help them out by hosting "Mason's Night of Celebration." They held a raffle, auction and sold items donated. I decided since the heart suckers went like crazy at the last event we brought them to that we would try to sell some and earn money for Mason. I got the heart stand out and thought it would be sufficient to fill it. It holds about 60. A friend that was helping me decided we needed more. The day of the auction she called me over and said she had made some more. This is what I found...She had make 140 more! Wow! Thanks Kathryn! We ended up selling well over half. We gave the rest the Mason's siblings. They came up with the idea to take them around their neighborhood and sell them. We loved the idea.

While we were there we met up with some friends and made some new ones during the night. The cute little blond girl on the right just went through a transplant with her 2.5 year old little girl. They were at the hospital during Grace's first surgery. She was on they transplant list for only four days before getting a heart and stayed in the hospital for only 11 after she received it. Her story gave me a lot of hope. Mindi on the right has a cute little girl who is at the same place in the process as Grace. Paul Cardall played and spoke as well as a few others and Angie Larson from Good Things Utah was the emcee. The only item we bid on happened to be donated by Mason's dad's company. We won it! We spent the end of the evening talking with him. What an amazing family! You can read more about Mason or donate to his fund at miraclemason.blogspot.com.

We truly had a great night FILLED with the spirit of giving!

First Post-Op Appointment

Gracelyn went in last Wednesday for her first post-op appointment on Wednesday (June 23). She had an EKG, x-rays and they monitored her on and off of her oxygen. The doctors came and spoke with us for a bit and looked her over. They were very happy with how she is doing. Before we left home we thought we would come back on no oxygen and without half of her medications. They took her off of her aldactone and some of her lasix. When they monitored her oxygen she wouldn't go above 80% on room air. They weren't happy with that and decided we needed to give it another month and check again...we can do another month. It could be worse. Everything else looked great. We go back in a month. I had to add this since we happened to catch a picture of her doing it. She loves that big toe!

Eating Solid Food...

We've been wanting to feed Gracelyn solid food for awhile now. However, we felt it would be best to wait until her surgery was over. She wasn't making a fuss when we were eating and it just didn't seem fair to give it to her just to take it away. (Besides, the box of rice said to wait until six months for allergy reasons, so really she was only 3 days late. :) ) Last weekend (19th) while we were camping we decided to give it a try. Jeff had promised Mr. C that he could be the one to introduce her to "real" food. He was excited. Since everything at our house is boy we went an bought her a new princess bowl and spoon. We got it ready and she went to town. She takes her aspirin every morning by spoon, so eating with it was nothing new. She did great. So did Mr. C. She loved it and got upset when it wasn't coming fast enough. Finally it cooled down and she stopped eating it. She would spit it back out and cry. Once I figured it out, we warmed it up and I fed her the rest. She finished it all. MMM...mush!

6 Months Old...

The Miss has turned six months old. Wow! Where has the time gone. Sure goes by fast when you are having "fun" doesn't it? The little lady has gone through more in the last six months than one should deal with in a life time. She continues to be strong and able to endure all that she is being asked to. She sure adds a lot to our little family and definitely lacks no attention by anyone at our house.

At six month old Gracelyn...
-Loves her mama. SHE IS A MAMA'S GIRL! Don't even try to hold her. She is all mine. :)
-Loves to be sung to by her brother.
-Gets big smiles on her face when all her dad does is walk in a room and say "Hi."
-Is a cat napper
-Loves her toes. I always find her playing with them.
-Still likes to be swaddled
-Doesn't quite sit up yet on her her own, but is getting close.
-Loves her thumb, fingers, binki, big toe...anything she can suck on.
-Does believe in sleeping more than 2 or 3 hours straight during the night :(
-Is on five medications (1/2 an asprin, .83 propranolol, .6 lasix, .6 aldactone, Tylenol)
-Is on .25 liters of oxygen

Weight: 12 pounds 5 ounces 25%
Height: 23.75" 5%
Overall: 10%
Head: 20%

X-rays

Before we left the Nurse Practitioner let us take some pictures of Gracelyn's x-rays. The first one is right after surgery. You can see all of the lines going into her. The second picture is a couple hours before we left the hospital to come home.

Happy Girl...

I have been trying to be very careful with the way I handle Gracelyn. I'm not sure how sore her sternum and incision are. She has been quite stiff as we try and move her around. Today I set her on the ground to see how she would do. This is what I got...I guess she showed me!

A few random things...

Our blog began as a way to keep family and friends informed of Gracelyn and her story as it progresses. It since has become a journal. I have many times considered making it private. Sometimes I want to record things that are just too sacred to me and sometimes I need to record things so that I remember. Right now I have a few things I don't want to forget.

1.Since Gracelyn has come out of surgery she has been reaching up at and starring at everyone that comes near her. Anytime a nurse would walk up to her side she would reach her left hand up to them until they grabbed it. She would hold onto them as long as they would let her. She has been reaching up to us and grabbing our faces as well. There is so much calm and peace in her. It's amazing.

2.When Gracelyn was still in the CICU my parents and Cole bought a bear from the build a bear store. I've already mentioned they put a heart in the bear with each member of my family's name on it. I didn't mention the darling outfit they bought to go with. She has a cute heart shirt and skirt that matches. I wanted to make sure she knew where this darling bear came from.3. My telethon friend, Michelle. On Sunday I mentioned that the telethon was going on while we were at Primary's. Jeff and I and my parents couldn't help but make a donation. The sweet lady that took our donation became a little emotional as I told her my 5 month old was just down the hall from her recovering from open heart. As Nadine Wimmer spoke with her she told about Gracelyn and cried. An hour later we had a knock on the door. It was her. Michelle and her sweet friend decided they needed to volunteer their time to help raise money for the amazing children at Primary's. Thank you for volunteering your time and for finding us Michele.

4. The doctors questioning me about Gracelyn's diet. Several times while at the hospital we were told that Gracelyn didn't look like a normal heart baby. We were told that they usually look unhealthy and weak. One of the NPs even questioned me about her not getting anything else but breast milk. It makes me happy to know she is so healthy despite the problems we've had with her little heart.

5. For her BT shunt she was on the bypass machine for 20 minutes. This time she was on the machine for 72 minutes.

Just relaxing...

We had another great day a home just relaxing. Gracelyn is getting the rest that she needs to heal. We heard from her cardiologist today, who happened to miss seeing us while at Primary's because Gracelyn was discharged so quick. She is pleased with how she is doing.

I had to share this darling huge heart cookie that my friend Cathy made for us. I love it. I wish Gracelyn could share it with us. After eating an amazing meal brought over by my friend Kathyrn, we sat out on the porch to enjoy the rain. We had some special visitors stop by, my brother Jared and his wife Amber. They brought Gracelyn the cutest little puppy and some heart balloons. I loved the puppy, but I think she enjoyed the balloon strings the most. :) Thanks you guys! We are so grateful to you all!

Home recovering....

We spent a lot of yesterday just trying to get rest. We are exhausted. After Gracelyn and I woke up from a long nap (my boys were out playing), the first thing I wanted to do was get us cleaned up and not smelling like the hospital. My mom came and took care of her so that I could get showered. It was so nice to be able to have someone else be able to hold her without her crying. She can't be bathed for about 6 weeks, so before I gave her a sponge bath I spent a good half an hour removing all the adhesive from her. She looks and smells much better now.

My dad and Jeff spent the afternoon setting up a playhouse/swing set so that when other kids come over we can send them and Mr. C outside. I felt bad during the winter keeping other kids out and not letting Mr. C have friends over to play. It helps that the weather is nice and we can send them outside, at least for awhile so that she can have a chance to heal without worrying about her getting sick. I am excited for him. I know he will love it.

Once it cooled down I took her out on the porch to enjoy the weather. She has always loved to be outside. Whenever she would get upset I could take her outside and she would calm down. You can tell how content she was by the picture.

I had a hard time sleeping last night. It was hard to sleep without her having the monitors on, warning us if something isn't right. However, she did great. She woke up at 5:00a.m. and let us know she wasn't feeling well. We gave her Tylenol and she slept for a few more hours. I know I keep mentioning it, but I just can't get over her pink cheeks. I love them! I am so happy to have her home! I've not been able to thank anyone individually yet, but want everyone to know how grateful we are for the support we get.

We're HOME!

We made it home! Like last time, we drove straight to grandpa and grandma Hales'. We didn't tell them we were coming. We were so happy to see Mr. C and grandma. They were shocked to see us. We have been home for a few hours and Gracelyn and I crashed. We have been asleep since we got here. It is so great to have her home where she can begin to heal. We are waiting for Home Care to bring us a new concentrator. Wahoo! Back to the pediatric one. She should be on it for 2 weeks and then we plan to get rid of it. When we left the hospital she was on .25 liters and was sating at 85-86%. I love the 80's! With the Glenn she just needs to be above 75%, with the Glenn she is okay to go above 85%. We are having to keep her head elevated some. After the Glenn the pressure to the head changes and gives these little ones a massive headache. You can't tell from the picture, but we have her propped up quite a bit. I've got her crazy x-ray pictures to post later, but for now we are just going to enjoy the sun and being home with Mr. C!

Waiting to go home...

Gracelyn struggled a little last night. Something was bothering her. We couldn't tell what it was, but her heart rate starting going up some and she began to get a little fussy. We gave her a little pain medicine and she has been fine ever since.

They came in for labs at 5:30 a.m. They took her down for x-rays at 6:00a.m. (We have pictures of them I will post later.) The cardiologists made their rounds at 7:30a.m. and told us she looked great and that she was good to go home. Yeah! They were amazed at how well she is doing. They originally told us we could leave yesterday, but it seemed way too soon. They kept her around to keep an eye on her and we bored them. :) We love being boring! She has not even been out of surgery for 4 days. Crazy! The NP told us this morning that 4 days is the soonest that they have had Glenns go home. Right now they have one that has been there for 24 days. GO GRACELYN!

They nurse took the rest of her lines out and her bandage off. This pictures doesn't seem to go together to me. A big incision, surrounded by lots of little incisions and one happy girl! I am so proud of her!

We waited around for a bit, but they had us out the door by 10:00a.m.

End of day 4...

I spent much of the day just holding and loving my little lady. She has been quite comfortable and doesn't seem to be in much pain. She has been talking and smiling for us. Her x-rays looked great from this morning and her sats continue to stay where they need to be. She has been on .25 liters of oxygen the entire day. They have also reduced the amount of lasix she is on. We wanted to take her for a walk outside all day, but we wanted to wait till after dinner so Mr. C could go with. Grandpa, Grandma and Mr. C got here and we looked outside and it was raining. Maybe tomorrow we can go for a walk at home. :)Dr. Kaza, her cardiothoracic surgeon, came by to check on her this afternoon. I hope he doesn't mind me posting a picture of him with her. We LOVE this man! We owe her life to him. We thought she needed a picture with the man who has done such great work on her little heart and given her a chance at a wonderful life. He has such an amazing spirit about him. I have felt it from the first time we met him 5 months ago in the CICU. He is so great to us as well. He will listen to us and answer any questions that we have with out us ever feeling rushed. Before he left I HAD to ask him a question that has bugged me for a while. (If you don't want to know the details of the surgery don't read on) I have been told that when open heart surgery is performed the sternum is broken. I have such awful pictures in my head of how they do this. I could have looked it up on the internet, but doctors could do things different ways. I asked him what he did to Gracelyn. He said, "First off, we don't BREAK children, we fix them." :) He continued, "Let's use the word divide the sternum." That sounded better already. He told us that with the first surgery he used cartilage scissors. With the surgery he did Friday he used a saw. Doesn't sound pleasant, but better than the visions I had in my head. I was glad to get that cleared up. As my dad has told us, her progress isn't only evidence of HER strength, but proof of what a great surgeon he is. I didn't get to post a picture of Grandma last night so I grabbed one before they left tonight. If all goes well tonight we should be leaving tomorrow. :|

Just hanging out...

Does this look like a baby who 72 hours ago was still in the OR having major heart surgery? I don't think so...

We are having a nice quiet day. We are just hanging out in our room. Gracelyn did really well during the night. She only woke up once to be fed. What a difference from the past few months! They came to take her for x-rays right before 6:00 am. It has been over 24 hours since her last dose of morphine and over 7 hours since her last lortab. She seems quite comfortable. We hope to move to tylenol soon. She has been smiling and talking for us this morning. So great to have her back!

The doctors made their rounds at 7:30a.m. and said that if she continues to eat well we will be going home tomorrow! TOMORROW! I'm not sure about that, but she is doing great. I know we won't have any eating problems. We never do. They told us to plan on 2 weeks, but thought it would probably be 1 week. Jeff gave her five days. It will be less than four. Unreal! We are so blessed!

Gracelyn's Prayer Blanket...

Things have finally calmed down enough that I am able to post about Gracelyn's beautiful blanket. I LOVE THIS BLANKET! I can't say enough how much this blanket means to me. We received hearts from all parts and times of our lives. It is amazing. I wanted to share just a little about this blanket.

The blanket includes:

-92 hearts

-Hearts that represent entire families and some that represent individuals

-Hearts from a fellow heart buddy. (The material they gave us is what was used to make her 1 year celebration quilt. It represented all she had been through over the past year.)

-A heart made from material brought back from Japan.

-A heart made from the material of a special hospital gown

-Hearts representing prayers being said by family

-Hearts representing prayers being said all over the US

-Hearts representing prayers being said in Argentina

-Hearts representing prayers from members of our ward

-Hearts representing prayers from people I work with

-Hearts representing old high school and elementary friends

-A heart made from material used to make clothes for me when I was young

-My sister's heart comes from material she used to make Gracelyn a blanket with at birth

-A cousin's heart comes from material she used to make us a nursing cover when she was born

-All of the hearts are different except for five (they are pink with brown around them)that were put on to represent those they weren't praying for her, but those that I imagine were there with her during those 6 hours. My four grandparents and Jeff's grandpa. They have all returned to Heavenly Father.

-There are 7 hearts that are bigger than the rest. I suppose that is because they represent those that are praying for her more than anyone else. Jeff, Mr. C, myself and our four parents.

-There are only 8 hearts that have text on them. They read: CUBS, Brigham Young University, Book of Mormon, kitten, love, Gone Camping, John Deere and He is always with us.

-There is a large heart that was embroidered by my friend Kathryn. Thank you Kathryn! It reads:

Gracelyn

June 4, 2010

What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them. Mark 11:24

Another friend from my ward helped me pick the scripture. Thank you Rose!

-My wonderful mother sewed the entire blanket for us. We planned on getting it done early, but had so many people bring hearts that we put the last one on hours before we left for the hospital. My mom finished it while I went home to finish getting ready and go to bed. When I woke up and left at 5:00a.m. it was sitting in my car. Thank you mom! I love you! This blanket means the world to me and I know Gracelyn will love it when she is old enough to understand.

I want to thank all of those that brought and mailed us hearts. More importantly I want to thank those that prayed and continue to pray for Gracelyn. You can't imagine what it means to us! My heart is overwhelmed with your love, selflessness and kindness.

(If any of you have something else to share about the heart you gave us let me know)

End of day 3...

I love that I don't have much to post. Things are starting to become calm and boring. We like boring! The most exciting thing is that Gracelyn finally had a dirty diaper and it covered her, the bed and I. WORST DIAPER EVER! She is much happier now. It forced them to give her a bath and so we now have gotten rid of the operating room smell as well.

They keep telling us she is going to get grouchy, but she isn't. She has actually returned to sweet calm Gracelyn. (I wish that would happen to the poor little boy down the hall. :( )

Grandpa and Grandma brought Mr. C down to see us and eat dinner. Right out side of Gracelyn's window is a patio where the kids can go and play. We brought our dinner up and ate right outside her window so that we could keep and eye on her.

While my parents were here my dad walked over to check on Gracelyn. She had found her bear and had a tight hold on it. So sweet!

Jeff was finally able to hold her. Grandma got the chance to hold her as well while she was here. Mr. C begged to, maybe tomorrow. It still scares ME to hold her.

She is on .25 liter of oxygen, sating at 80%. She will go home with oxygen for a little while. We are so excited that she is on such a low dose that we will be able to carry the tiny tanks again.

Gracelyn is gone. We are ready to get some sleep as well. Have a good night!

Moving on up...

Gracelyn just moved up to the third floor. She continues to do fantastic. I've tried to stay optimistic through this whole process, but never could I have imagined things would have gone this great. Now that she has had all of her lines pulled we were able to dress her again. She is wearing another pair of her cute scrubs that grandma made. All the nurses have gone crazy over them.

We have not seen much of Gracelyn's eyes today. She is catching up on some much needed rest.

For those that who read in the next hour, the telethon will be ending at 5:00. We invite you to call and donate. We are near the room where they are broadcasting the telethon and it is amazing to watch listen to all the miracles. Again we invite you to donate. We are so lucky to have such an amazing hospital so close and you never know when it will be you and your family that will need it. We just called in and donated and the sweet lady that took our pledge shared our story. We have given our name and have offered to volunteer next year. They struggle to get volunteers. If you have a chance to help they really appreciate it. It is an amazing place!

I finally got to hold my girl...

Have I ever mentioned that I have a lot to be thankful for? If I haven't let me say it again...WE ARE SO BLESSED!.

Gracelyn had another great night! This morning when we came in we had a completely different baby. SHE IS PINK! She is beautiful and pink. I look at her and just cry. Her skin is warm and pink instead of a cold/clammy pale. Around 9:30 this morning they removed everything. Both of her chest tubes were removed. Her arterial line is gone. The right atrium line that goes right to her heart was taken out. All she has left is her leads, pulse/ox and an IV in her hand in case of an emergency. They tried to take everything out early this morning but she gave them a hard time and got really upset so they stopped. The NP told Jeff she has some attitude. I didn't even have to guess what comment he would say relating to me in return.

She needed an echo this morning and so we were able to her incision. It looks like it is quite a bit longer that the last one, but it looks great.

We have been waiting for the RA line to be taken out to hold her. Now that it is out I had the chance to nurse her and hold her. I was in heaven. While I was holding her some brethren stopped by and blessed and administered the sacrament for us. I am so grateful for that.

I was just told by a second nurse that she is the best Glenn patient/surgery that they have had. She isn't fussing or crying, she just lies there content. They told us that the Glenn patients are notorious for crying and struggling. Wow. I have been blessed with such great kids!

End of day 2...

Either the emotions have finally decided to show up or my heart is extremely full. Everything has made me cry today. This morning I saw a cancer patient... I cried. We walked out to the car and saw the Life Flight helicopter drop a baby off...I cried. Watched the Children's Miracle Network telethon being broadcast...I cried. Walked into the pump room with a new mom who just delivered a sick baby that was taken from her right after delivery and can't hold her baby...I cried. I stare at my beautiful "healthy" baby...I cry.

While we were here with Gracelyn after her first surgery we would see a family everyday that lived by my family in Roy. Their 18 month old grandchild was being watched by his Aunt when he fell off of the table she sent him on. For weeks he laid in the hospital bed with half of his skull taken off and placed in a freezer waiting for him to hopefully recover. When we came back to the hospital I expected to see the family still here. We ran into them tonight. He wasn't laying in the hospital bed, but he was on live TV as part of the telethon sharing his story. He left the hospital 2 weeks after us. He now walks and talks. As we walked away from him I cried my dad assured me that there are happy endings to stories.

Grandpa and Grandma brought Mr. C down to visit. When Mr. C walked in she was sleeping. He began to talk to her and her eyes opened up. She loves him and he truly loves her. Their bond began long ago. My parents took him to the store to pick out a new toy for his sister and then they took him to the Build a Bear store and he built a new bear for her. Usually when you build a bear the last thing you do is kiss a little heart and put it in the bear before it is sewn up. Grandma helped him get a bear for each member of my family, write our names on it and seal it. It is darling! She has a little heart on her chest and has heart clothes. She was staring at it when we left her.

She continues to do well tonight. While my parents were here she even started talking to them. They hope to move her out of the ICU tomorrow. She looks great. We've so much to be thankful for!

Our Super STAR...

Gracelyn continues to do GREAT! The Attending is really pleased with her progress. He just called her a STAR! He helped us to get gloves on her hands so that she will stop scratching her face and eye. He told us is would be a shame to lose an eye after such a successful heart surgery. :) Her little swollen face is starting to look much better now. The nurse said that this is the BEST Glenn patient she has ever had. They are trying a new drug (presedexs ? ) on the Glenn heart patients as they are coming out of surgery. Gracelyn is one of the first they have tried it on and they are very happy with how it is working.

More lines have come out. They took the CVP line out of her neck, which is GREAT! As the nurse took it and the sutures out she just stared at her. The nurse couldn't believe it. She has been bragging to the other nurses about her. One nurse just said she wished she could share some of her demeanor with the other babies. You can tell by the picture that they have started taking machines away. We love it! They were able to take her catheter out. She is eating great. I won't be able to start nursing her for a couple of days, but we get to feed her by bottle. She still has a line running right to her heart. We won't be able to hold her until that line is removed. They are hoping to move her out of the ICU tomorrow. They have taken her off of the drug that has kept her sleepy and she has started waking up when she hears our voices. The last time she was awake I even got a smile out of her.

Thanks for the continued support. Like always I am overwhelmed by the love that we feel. All of the e-mails, blog comments, calls, texts, FB posts...whatever it is, it is so appreciated and means a lot to us. Thank you!