A needed break!

After all the drama on Sunday evening with losing Gracie's tooth, Monday morning didn't start off any better. We woke up at 5:30am to a pool of blood where Gracie was sleeping (in our bed). After a major freak out, I cleaned her up and realized that she must have dislodged a blood clot that had formed. I was worried that she would need stitches, but after a quick trip to the dentist, found out it wasn't a major issue, especially since Gracie is on aspirin, which acts as a blood thinner. Other than putting Grace on an antibiotic just in case infection resulted, there was nothing the dentist wanted to do for her.

"Gracie's new smile."

A couple hours after she had gotten home from school on Monday, we noticed that she was developing pink eye. We quickly started the drops and kept her home from school Tuesday. I think both Gracie and I needed a lazy, fun day and luckily Morgan didn't have school either so me and all my kiddos just chilled all day long. We needed it.

After breakfast, we decided that we would fore go getting dressed and hang out in our pj's all day. We read books and played with playdoh---Ryan may have eaten some.

Then the kids had a snack and watched a show while I worked on a surprise for them upstairs.

We played in the tent, read more books and sang songs, until everyone was ready for lunch. After lunch I surprised them with jello-jigglers. Morgan loved them! Gracie was terrified and Ryan wouldn't touch them for the longest time, when he finally did he just poked at it and wouldn't even try it. Too funny!

We needed a day like this to get better and just be together--too bad dad had to work!

Lost tooth

If I was talking about Morgan losing a tooth, that wouldn't be too bad--she is 5 1/2 and it would only be a year or two till a new one came in. But no, poor Gracie lost a tooth. Now that she is tucked in bed after the traumatizing evening, its my turn to cry for her.

I know I sound silly, but really, poor Gracie! She is only 3 1/2 years old and will be toothless for at least 3 more years. But what gets to me more is that this is just another thing to make her 'different' from her peers. It's not all about my vainness, I think all parents want their children to fit in with other kids and Gracie just already has so many things that make her different.

I was peeling potatoes for dinner tonight and Gracie had gone into the front room. Ryan followed behind her and had stepped on her oxygen as she walked away. Gracie fell face first on the tile, hitting her mouth just right. There was blood everywhere! The mouth bleeds good on its own, for a kiddo on aspirin, it bleeds so much more and for so much longer. I tried to get her to suck on a cold rag, to no avail, but at some point she screamed allowing me to see she was missing a tooth. We found her tooth and for the next hour had to comfort her. If came near her or if we even mentioned her tooth, she screamed and freaked out.

We eventually got her to calm down and all she kept saying for the rest of the night was, "my tooth is better." Poor girl! No one wants any of there children to get hurt, but man, why does it seem that it is always Gracie?

Though I have cried and shed many tears of this lost tooth, I will get over it and soon we will love her toothless smile and it will become as much of a trademark as her pigtails and sweet little voice.

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CHD Awareness Week in review

I realize that CHD awareness week was over a month ago and I am quite behind, but I still wanted to post about what we did to bring awareness to the number one birth related defect. The following post is the video that I made for the presentations---I am grateful for another heart mom who let me 'copy' her video so I could include Gracie in it.

I was able to set up some presentations with some local organizations. My first presentation was for the Resident Assistants (RA) at BYU (the local university). I think this was by far my favorite presentation, perhaps because I felt that it brought the awareness to the ones who will be most affect by CHD's in the near future. I loved how receptive they were and how many of the RAs jumped on the opportunity to do a service project for the kids at Primary Children's hospital as opposed to 'traditional' Valentine Day activities.

My other two presentations were for school aged groups. One group was about 60 3rd graders. It was fun to have some of them wear oxygen and carry around a tank and try to do things that some heart kids have to do. I loved hearing how hard the experience was for them and how it made not only those who were wearing the oxygen stop and think, but all of the students seemed to get a sense of how hard it can be physically for our heart kiddos.

My last presentation was to a bunch of young men and young women from my church between the ages of 12-18. I don't know why, but that presentation seemed to stress awareness to how they can help heart kiddos in the future. I kept telling them that maybe one of them would become cardiologists or cardiothoracic surgeons--wouldn't that just be amazing! At the end of the presentation, this group also had the chance to help me with my service project that I have been working on for the last month.

Gracie spent more of her first year of life at Primary Children's hospital then she did at home. We were blessed by many donations from others and I wanted, not only to pay it forward, but also to be able to give heart kiddos something fun to do while they are stuck in bed and not have much energy for anything else. I am not very crafty, but wanted to make something, so I finally settled on making finger puppets.

My finger puppets are by far not perfect and I kind of feel silly taking them up to the hospital since they look kinda "ghettoish". But I figure, the kids aren't going to judge and hopefully they are just going to love to play with them, even if it is only for 10 minutes.

"Super hero puppets"

"Old MacDonald puppets"

"Princess puppets"

As previous post mentioned, a friend and I worked together to sell hair bows for IHH, I am happy to announce it was a great success. Tons of bow were sold and we even had a special donor buy 26 bows to donate to the hospital in Gracie's name!

I am excited to drop both the bows and puppets off to the hospital this Friday when we go up for our fetal echo. I hope that both of these things will bring a smile to the faces of so many sweet heart kiddos and their parents as they go through the trials that come with not having a perfect heart.

Bow Fundraiser

I am so excited to announce this great fundraiser that my really good friend Ginger, has helped me put together!

February 7-14 is CHD Awareness week, in conjunction with that, Ginger, who owns The Paper Bag Collection (http://www.etsy.com/shop/Paperbagcollection?ref=seller_info) has designed two bow to sell. All proceeds from the the sale of these two bows will go to Intermountain Healing Hearts (IHH).

IHH is a non-profit organization that supports families of children or adults with
congenital heart defects (CHD) or heart disease. IHH serves families within the Intermountain
West area (Utah, Idaho, Wyoming, Montana, and Nevada). Through IHH families receive support, comfort, and help in finding necessary resources to help as they face the
reality of life with a child with CHD. For more information visit: www.intermountainhealinghearts.org

The first bow that is perfect for any girl out there that loves hearts and beautiful bows.

This bow is made with a cute little heart print ribbon and has a large rhinestone center, accented with a tiny little glitter heart button (color may vary due to availability) The bow is backed with little white floral beads and soft black feathers. It is backed with felt and attached to a small alligator clip. This bow can also be attached to a stretch headband for infants, please leave in a note to seller at checkout if you would like it on a infant headband, if no note is made you will receive the clip.

The second bow is affectionately referred to as "Gracie's bow." It is full of personality and spunk, just like my little sassy girl.

This bow is made with a two ribbon rosettes, a hot pink and black polka dot ribbon, and a black and white hounds tooth ribbon. It is accented with 3 little rhinestone and button hearts (colors may vary due to availability) and is backed with soft black feathers and black and pink dotted tulle. The piece is backed with felt and attached to a double pronged alligator clip. Can also be attached to a stretch headband for infants, please leave in a note to seller during the checkout process if you would like the headband. If not note is made, you will receive the clip.

If you love bows and want something beautiful for your little one, please consider buying one of these beautiful bows and support all families with CHD! Just follow the links below!

The Heart bow:

http://www.etsy.com/listing/91926042/heart-hair-clip-for-chd-awareness-cute

Gracie's bow:

http://www.etsy.com/listing/91924994/gracies-heart-hair-accessory-for-chd

Oxygen

Today has been an emotional day. I don't know if it because I am fighting a head cold, if it is because of pregnancy hormones or what. But sometimes I really hate days like today. Sometimes I hate being so "strong" and everyone thinking that we can handle everything so fine without much help from others.

Anyways, I was having a discussion with someone about Gracie and how her new diagnose of asthma may keep her from finally being able to get rid of the oxygen that has been a constant in her life. Before this flare up she was only on 1/4 of a liter both day and night, now we have had to increase it to 3/4 of a liter and her sats aren't even as high as they first were after the fontan. I had mentioned to this person that I think because of the asthma she will have to remain on oxygen day and night. The response I got was depressing in a way. "Well, that isn't that bad. Yes it would be nice to have her off for even a couple of hours but it isn't that bad to have to stay on oxygen."

Though this statement is true, it still upset me. Maybe I was looking for more sympathy or more understanding, who knows. But as I mopped the kitchen floor this afternoon, this conversation just kept playing over and over in my mind.

Yes I am grateful for Gracie's oxygen. It is a love hate relationship. I am grateful for it because it helps her heart and her lungs. I am grateful for it because I know that it has helped prolong her life. But I hate the inconvenience it is, for everyone, but mostly Gracie.

I hate how we can't go to the playground because she will constantly get tangled up or get whacked in the head by a tank trying to follow her around and maneuver her and the oxygen. I hate that we get stare from others like she is too sick to be _________. I hate that the poor child trips over the oxygen daily and falls to her feet crying. I hate that she is constantly tethered and can't play like her bothers and sisters. I hate that she doesn't know what her face feels like without the oxygen and I hate that she feels so unsafe when it is out of her nose. And I can go on about how restricting and bothersome the oxygen is...but in the end, I feel guilty because it is helping my girl be here.

I hope that I am wrong. I hope that maybe just maybe she will be able to experience even just a couple hours a day off of oxygen. What a feeling to feel free. To have nothing holding her back from being a kid!

CHD Awareness Week is coming

Congenital heart defect awareness week is February 7-14, this year and I am so excited. Since becoming a heart mom, 3 1/2 years ago, Valentine's day has come to mean something different to me than a romantic holiday. Valentine's day and all the hearts that come with it, remind me of my sweet Gracie and her miracle heart.

Though I have wanted to do something for CHD Awareness week in the past years, I really didn't have the energy to do much more than what was on my plate with my own family. But now that Gracie is older and so much more stable and stronger, I feel it is my blessing to spread the word about heart defects and hopefully help open the eyes of our community to the impact CHD's play on families, individuals, and the communities in which they live in.

This year, I have a couple of things up my sleeve. I have contacted many different groups of people to see if I can do a little presentation about CHD's and their impact and ways we can all make a difference in CHDers' lives. Also a very good friend is helping me with another project that I am just ecstatic for---you'll have to wait a little while till that is unveiled.

Anyways, as my mind has been turned to how I can help during CHD week, I have been thinking more about my sweet Gracie and all that she has overcome. Just today, I went back through all of my blog posts from the day that Gracie was born and read all that Gracie has gone through. My goodness...she definitely defied the odds and has shown so many that God's grace is upon all of us.

Just a few photos that show how far Gracie has come in her 3 1/2 years.