Wednesday, August 25, 2010

A year ago today...

Today marks the year anniversary of the beginning of this new journey we have found ourselves on. Last year I scheduled my big 4-D ultrasound on the 25th of August. They gave me a few dates, but the 25th happens to be the birth-date of one of the most important men in my life, my grandpa. I thought it would be fun to celebrate this day with the funnest part of being pregnant, the 4-D ultrasound where we get to see our sweet baby in such detail. I invited my parents to come along with Jeff, Mr. C and I. As the tech began looking at my belly she told us that we were for sure getting a baby girl. We were so excited! She looked at her face for a bit and then her heart. I remember knowing something was wrong with her heart because of the time she spent looking at it. I didn't dare ask because of the response I knew she would give. She asked if my parents needed to take Mr.C out while we talked, but I wanted them there. That day we received the news that the baby I was carrying had a broken heart. I didn't quite understand what that meant that day, but a year later I would have never guessed I would understand the heart the way I do today. I didn't know that day that my nights of sleeping were over. There have been few nights from that day that I have slept. Over the next few months I spent my nights awake researching and trying to understand. I spent my nights crying so that my son and husband didn't have to see me upset. Since she has been born I spend my nights checking to see that she is still breathing. How I miss sleep! A year ago today I was told by a callused doctor that it is just a fluke and that there isn't a reason that her heart didn't form right. I'm not one that believes EVERYTHING happens for a reason, but Gracelyn being sick did. One day I hope to know what that reason is. A year ago today I would have never imagined that this "sick" baby would have had the life that she has had this far, both good and bad. I thought our life was over. However, we have done everything we would have done with a healthy baby. We have hiked, we have swam, we have camped and rode four-wheelers...we've just carried a tank and some tubes along with us. A year ago today I would have never imagined the support and love that we would receive from family and friends. It has been overwhelming at times. A year ago today I would have never though that I could ever be okay with a large scar down my babies chest. Today that scar represents the journey that our family is on. It represents what Gracelyn has gone through and the strength, courage and fight that is in her tiny little body. A year ago today I began to better understand the masters plan and what it is to have an eternal family. A year ago today I didn't believe in miracles and prayer quite the way I do today. Today marks the day that we can now stand back with some distance, one year, and see just what we have learned and how we have grown.

Monday, August 23, 2010

Eight Months Old

Last week Gracelyn turned EIGHT months old. What a difference one month can make! As my dad keeps saying "she has turned into a kid!" I keep telling him she moved from the infant stage to a baby, but he insists on saying she has become a kid. :) She has changed in every way! She is eating "real" food, she'll even feed herself (with her hands, of course), she is sleeping a little better, she is smiling so much, she has even thrown herself at her dad a couple of time so that he would hold her, she has started signing back to us, she loves to play with toys, she is gaining weight like crazy...she continues to grow and progress in so many ways. We consider our selves SO blessed to have Gracelyn progressing the way she is. We are grateful to have had another GREAT month with our little lady.

Gracelyn at Eight moths old:
-She LOVEs, LOVES, LOVES her brother! Anything that he does is hilarious to her. He can make her smile like no one else can.
-She loves Little People toys.
-She can sign "more" when she wants more the eat
-Anytime her dad walks in a room she says, "Hi Dad"
-Grandpa and Grandma taught her to point to her nose (or yours) when you ask where it is- cutest thing ever!
-She weighs 15 pounds even!!
-She is only on two medications!
-She has big chubby cheeks
-Still loves to suck on her binki, thumb, fingers, toes...whatever she can get the fastest
-She is sitting up on her own
-She is sleeping better, she has started waking up only three times a night.

Wednesday, August 18, 2010

IHH Heart Family Camp

This weekend Jeff, Mr. C, Gracelyn and I were able to attend a camp-out with a bunch of other heart families. It was great! The board for the Intermountain Healing Hearts committee is amazing. They did such a great job at helping us feel welcome and went out of their way to make it an enjoyable time. Camp was held at Camp Wapiti. There are 17 individual cabins available. We registered early enough that we were able to get one. When we arrived we each got name tags, a bag of goodies including water bottles and a flashlight and Mr. C got a Camp Wapiti shirt. They took us up to our cabin and the door was decorated so cute. It had a Welcome Sanders Family sign hanging from it.
They feed us every meal and the food was great. Friday day after we got settled we ate dinner, played on the playground and met other families. Once it was dark they set up a big screen outside and we watched Astro Boy. They had a HUGE snack bar for us...Popcorn, root beer floats, sundaes and nachos. YUM!!

We went back to our cabin, piled the mattresses on the floor and got settled in for the night.

They next morning after we ate breakfast we had a big day scheduled for us. Parents went to a two hour symposium where we had some great speakers. Linda, one of our favorite NP was there to talk about nutrition. She gave us helpful tips on how to put weight on our heart babies. Really?!? Did she happen to notice the cheeks on my little one? :) During that time the kids were entertained by a Mad Scientist. Each of them were able to make their own slime. They also set up a big bouncy toy for the kids to play on.

After lunch the kids went on a treasure hunt. The treasure at the end was a pinata. Mr. C did a great job trying to break it open.

We had a great time and were able to make some great new friends. Mr. C made a new buddy Alex. He loved to play with him. (He is a sweet little three year old waiting for his fontan.) It is nice to be able to be surrounded by these families who truly understand just what we have been through. They have been there too. We are so grateful to the Intermountain Healing Hearts organization and what they do to help make such a difficult thing a little easier.(This is Becca and Ellie, one of the great families we have come to know.)

Friday, August 6, 2010

Gracelyn SANS Oxygen

I was able to take some rare pictures of my little lady this weekend. First because I actually caught a picture of her smiling and second because she is oxygen free. I LOVE them! I can't help but smile every time I look at them.

Wednesday, August 4, 2010

If you don't have anything nice to say...

I haven't updated Gracelyn's blog for a while because 1: I haven't had time because of what I am about to post about and 2: I don't really have anything nice to say. However, for journaling sake I will record our past two weeks.

We have had a couple rough weeks at our house. Mr. C came down with a nasty cold a couple weeks ago. I tried my hardest to keep him from Grace, but as I am pushing him away from her to keep distance between them and he looks at me with his sweet eyes and says, "Mom I just want to love her..." all I could do was to pray to Heavenly Father to keep her healthy while her brother "loves her." As hard as I tried, I didn't manage to keep her from getting his cold.

I let a week or so go by. Mr. C managed to kick his cold, but I watched as Grace kept getting worse. I monitored her O2 and watched it drop from the 90's to 70's. She has never been "sick" and I wasn't sure just how far to push without the doctor seeing her. Once I saw that 75% I decided we needed to be seen. Last Wednesday we had quite the day. I drug my kids from the ER(just to check her sats), to pediatrician, to home health care, to x-rays, back to the ER, to Respiratory therapist, then meet with the pediatrician again and finally to the pharmacy before we were able to go home. (But not with out a stop to get a McDonald's kid's meal) Gracelyn was screaming the whole time and Mr. C was an angel for me. (Usually I don't drag him along, but Grandma was out of town at girls camp. She still feels bad.) I'm so lucky to have such a GREAT boy!

Gracelyn's pediatrician was concerned with her sats. He didn't think the cold was causing it. While in his office we put her back on oxygen, 2 liters. After 5 minutes we couldn't get it to go up. He sent us to the hospital to get x-rays and meet with the respiratory therapist. When I walked in for x-rays the technician saw her chest and said you are probably used to this and we don't need to worry about any surprises. Of course not. When she is hospitalized at PCMC they do chest x-rays every morning. WRONG. They do them different at McKay Dee. They use, what I have now learned is called, the pigg-o-stat. This is a picture I took of her while in it...
It isn't a very good picture so I found one on the internet. What the...?!?! Really!?!?It looks awful. Like they stuff them down into a tube, but I must admit it holds the child still so they can get a good picture of the chest. So, not only did I have to watch as my child is put in this, but they tell me, "Here Mom, hold her arms up while we get her in it." Then I have to stand behind the wall and watch and she is screaming "Mama, mama, mama!"

Long story short...x-rays looked great, sats continued to stay low. The doctor gave me the option to admit her and have them monitor her or take her home and keep an eye on her. I chose not to admit her. I felt it would be worse and just expose her to more. All they would do is keep her up all night checking vitals. I have everything I need, but blood pressure, to watch her from home. The next morning our pediatrician called and said he was worried about her hematocrit level and her being dehydrated. He gave me 24 hours to get some fluid in her and if it didn't work we would admit her and get and IV in. I gave her all the pedialyte she would take and 24 hours later she was sating at 87%! Wahoo!

A couple days went by and just as I think she is getting better she had an awful night. She was up the whole night screaming. I would feed her (it usually calms her) and put her in her bed. Minutes later she was screaming again. Jeff even got up a couple times to try and calm her. We made it through the night, but the following night was worse. Something was wrong. We could tell something was hurting her. We gave her Tylenol and we all got a good two hours sleep. Then more screaming. Finally I sat her up. The screaming stopped. I sat her up against our cushioned head board and she calmed down. Eventually she fell asleep there until morning when the crying started again. We woke up to a yucky goopey ear. I called the doctor and they called a couple anti-biotics in. Hours later I went to pick the prescriptions up and while we were there she woke up screaming and had blood and gunk draining out of her ear. I went straight to an after hour clinic to find she had a ruptured ear drum. BLAH! Please give my little lady a break!

The last two nights have been much better. She only woke up twice each night. Hopefully she is on her way to healing!