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.

Update

It seems as if we have fallen off the face of the earth since Gracie was in the hospital, but that isn't the case, we have just been kinda crazy around here. So this is my attempt to update what we have been up to and hopefully stay on top of blogging again.

Morgan--She is doing great. She just started preschool again in January and though has only gone once, just loves it. Morgan is and always has been a social butterfly. She never worries about making friends and just knows that everyone wants to be her friend. It really is a great quality---wish I had it.

Morgan had a hard time with Gracie's last surgery and really struggled for weeks even after Gracie had come home. But she is back to her happy self and is so proud of her sister. Yesterday, Morgan accompanied us to Gracie's feeding therapy session and while in the waiting room was playing with a little girl. The little girl wondered why Gracie has oxygen and Morgan told her about Gracie's heart and even had Gracie raise her shirt to show her Gracie's heart. I love that Morgan embraces all Gracie is lovingly and with such enthusiasm.

Christmas was good for Morgan. All she really wanted was training roller skates. Dad made sure it was one of the last gifts she opened--it was kind of sad, after each gift she got more and more discouraged because it wasn't what she wanted. Morgan loved all the joy and excitement that came with the Christmas season, one of her favorites was hearing the many knocks on our door of surprises our wonderful friends and neighbors left on our doorstep.

Gracie---As you all know she had her 3rd open heart surgery and shocked us all at what a superstar she was. She was out of the hospital in just 10 days!! After her other surgeries, she wasn't even extibated after 10 days. And other than a four day stay a couple days after being released, her recovery has been amazing.

The fontan really has been great for Gracie. She has more energy, her speech isn't as labored and breathy and she is eating more orally. Though she is still completely dependent on her g-tube, she has gone from eating barely 2 TBS of food a day to about 1/2 c of food a day. It's incredible, yesterday we actually talked with feeding about the things we need to do to start making her less dependent on g-tube feeds.

Gracie started going back to preschool this week and couldn't be happier. Her teachers can't stop commenting on how much more energy she has, hope they think its as good of a thing as we do!

She is loving Primary at church and loves that she gets to sing and be with her friends.

And perhaps the most exciting news is that she is now down to only 2 different meds each day, one is just once a day, the other is 3 times a day. No more diuretics!! She has been diuretic dependent her whole life. And if she looks good at her follow up cardiology appointment in February she just might be able to lose the oxygen!!! I cried when her doctor told me this, then I freaked out. Will I be able to sleep if she doesn't have oxygen on at night?

Gracie loved Christmas too. She loved to sit on Santa's lap and told everyone that he was coming to her house to bring her presents. Santa didn't disappoint. Her favorite gift is a doll house Grandma and Grandpa helped us get(they bought new furniture and there was a promotional for a 50' doll house for cheap) for her and Morgan.

Ryan---This boy does not stop growing! Perhaps it is because he doesn't stop eating!! Ryan is such a joy to be around. His personality really reminds me a lot of Morgan's. He is a flirt and plays and flirts with both men and women. Last week at the grocery store he found a guy who he must of thought looked interesting and every time we passed him, would just point at him with this cheesy grin on his face.

He is walking like crazy now and thinks he can do everything his sisters can do. His favorite words are cracker, too (both refer to food), wa wa (drink), and moo (move). Grandma and Morgan have taught him to say poo poo and because they laugh when he says it, he always laughs now when he says it. And on occasion, if I am really lucky, he will tell me da do (love you).

Ryan is a mama's boy through and through. If I am holding Gracie or Morgan, he immediately climbs up to my lap and starts pushing them saying, "moo, moo". Even if Jason just puts his hand on my shoulder he freaks out and starts telling him to move. It is quite funny, though we are trying to teach him not to do it. This boy is going to have a real hard time come summer.

Jason--He is doing well, especially now that work has slowed down quite a bit for him. Mailmen really do dislike December! But he really can't complain much, he has had no snow to deal with yet this season.

As for me, I'm doing well. Things have been tough these last few months taking care of Gracie and helping everyone overcome the emotions that came with her last surgery. Its amazing no matter how long of a stay at the hospital, it really does rock the whole boat. Hopefully things will now get easier and I will stop being so sick, but other than that, I really can't complain.

Life is good. We are loved, blessed, and together. I am so grateful for my family, it really is a good one, we all love each other and just want to be with each other all the time. What a great change from what I experienced growing up!!