Tuesday, December 28, 2010

Happy FIRST Birthday baby girl!

On December 16 our baby girl turned ONE! What an emotional time! I have spent the first half of the month in tears. Looking back one year ago, I never would have thought I could have made it through where we have been. We have been blessed beyond belief. We have seen things that before I wouldn't have necessarily considered a miracle, but now feel surround by them always. We have been loved and served by so many. We have struggled and been tested and it has caused us to grow. I look at Grace daily and feel so grateful for everyday I have had to spend with her over the last year.

If I could have, I would have invited everyone I know to celebrate Gracelyn's birthday with us. There are a lot of people that I wanted to come that have helped us get through everything. People that understood what making it through the last year meant. However, we kept it very small and just invited our family over. Most of them didn't and can't understand what December 16, 2010 meant to us. I hope they never have to.

I decided that she needed a "Sweet Celebration." The day before her birthday we spent the day with grandma Hales making her a SWEET cake, full of candy.Since we would have enjoyed a dinner of cheerios, crackers and peaches if we ate Gracelyn's favorites, grandpa and grandma brought us pizza instead. Thank you!
We waited for our cousins and then let Gracelyn open her presents. With the help of her cousins and brother she did great. She was spoiled. Mr. C has a squishy people that she always steals, mom and dad got her a pink one of her own. She got lots of clothes, a soft heart blanket and a barbie bike from grandpa and grandma Hales. She got a card with money from papa and grandma Cheryl. Grandpa and Grandma great gave her a knitted blanket. Jared and Amber gave her a soft pink teddy bear. Aunt Camee sewed her a darling owl blanket. The Bloxhams gave her a bag of clothes and p.j.s. Her brother gave her a book and shirt.

Gracelyn wasn't shy when it came to her cake. The girl loves to eat. Who can blame her? We sat her in her high chair and let her go to town.
We sat up a candy buffet with thank you bags for those that came and for those that have been part of what we have gone through.As part of Gracelyn's birthday we have the chance to put together comfort baskets for the heart families that would be at Primary's over the holidays. A young man in our ward decided to do this for his eagle scout project and it made Gracelyn's birthday celebration so much more special. I am so grateful to him for the chance he gave my family to be a part of it. He did a great job. The baskets included treats, a blanket, a darling pillow, a water bottle, a stuffed animal, word search books, tooth paste and tooth brush, Paul Cardall's book Before My Heart Stops...The families will love the baskets!

Tuesday, November 30, 2010

First time playing in the snow...

We took Gracelyn out to play in the snow a bit on Saturday. She wasn't sure what to think about it. First she stared at it for a bit... then she began to lift her fit up and down in it...then came the courage to touch it... she pulled some really funny faces as it stuck to her fingers...and then, like every thing else, she ate it.

Wednesday, November 24, 2010

SLEEP! Wonderful Sleep!

We decided that it was finally time to move Gracelyn to her own room. I'd been waiting to find a breathing mat when my doctor teased me saying we didn't need one because her problems weren't with her breathing. Ha Ha. Real funny. He made me feel better when he told us that the
recommended age to sleep them in their own room had been moved to nine months. Good. That meant we were right on schedule. :)

On the 12th Jeff lowered her crib and decided it was time. She never even used it on the top level. :) It was a miracle in my world. She slept SIX HOURS!! Between being off of her propranolol, being on her comfortable crib mattress instead of the piece of card board she had laid on in the pack and play, not having everyone else around to wake her up she managed to get some good sleep. It has only gotten better since then. She has slept up to 9.5 hours. At times she will wake up and my wonderful husband has taken charge. Since we have a freezer full of milk he is getting up an feeding her if she is hungry. Usually that is only at six in the morning. She has even been going to bed at 8:30 every night. Were does that leave me? SLEEPING in my bed. Finally! Unless you have had a child that doesn't sleep you can't understand, but it is huge to me. I feel like I can function again. I'm SO happy to be sleeping!

Monitor & ENT...

On November 2 we took Grace to Primary's to have a monitor placed on her. They took her off the medication that controls her tachycardia and wanted to monitor her after she had been off it for a week. Wow! What a chore that was. We spent the entire afternoon at the hospital. (Fortunately we had Grandma with us and we had stopped for a nice lunch at the Spaghetti Factory before we went. ) We had to leave the monitor on for 24 hours. It was kind of tricky we all those wires and her being so active, but we managed....almost. Right as we were at the time we could remove it she decided to help. We had been driving in the car and when we got out we found her with the electrodes in her mouth. Yum! I guess that meant we were done. We sent it back and haven't heard back from the doctors yet. We hope no news is good news. It has been WONDERFUL without having to give her propranolol.

While we were at the Hospital we also met with her ENT. Her ears have been awful, but the doctor looked at them and said they were great. I loved hearing that, but wanted an explanation for her lack of sleep. The doctor referred us to the sleep lab and wanted me to make an appointment immediately. I didn't feel like that was the answer and left without making an appointment.

We are so happy and blessed that all continues to go well.

-Side note about Mr. C. He was so excited to be going to the eating hospital (he calls it that because whenever sister is admitted Grandpa & Grandma bring him down to see us every night and have dinner with us). He kept telling me how happy he was to go through the circle doors, and watch spider man, and see Mario and Spiderman, and eat and... Finally I stopped him and said I don't think your sister would feel the same. I explained that is where they fix her heart and have to cut her chest open. He followed that with, "Ya, but they don't irritate ME."

Thursday, November 11, 2010

Cardiology Appointment

Last Tuesday, November 2, Gracelyn went in for a check up. This was one of the most positive appointments we have had over the last year. Not to mention quick. We were back home within four hours. They checked her O2 saturation and at one point she hit 91%. That wasn't what we were expecting. I don't know why because she has been beautiful and pink! Her x-rays looked great as well! Her doctor was very pleased with how she is doing. She is still only in the 5% on weight, but she has consistently stayed there. She may just be a little girl. The cardiologist loved her chubby, rosy cheeks. ME TOO! We also took another huge step. Gracelyn was removed from her Propranolol (beta-blocker). It is the medication that has controlled us over the 11 months. We had to give it to her every 7 hours. The Propranolol was used to control her tachycardia. Originally when they put her on it they hoped that it was only caused by surgery and that it would be gone in a year. They are hoping it is now gone. She was taken off of it for a week and today we go to Primary's to have a monitor hooked to her to see how she is doing without it over the next little bit. We pray all is well. It has been nerve racking with her not on it, but wonderful!

We are so blessed to have her doing so well. It was wonderful at this appointment to have no talk of surgery. We know it is in the future, how far we don't know, but for now we will go on with "normal" life. She doesn't go back until MARCH! At that time they will do an echo on her.

Monday, October 18, 2010

10 Months Old...

Gracelyn turned 10 months old yesterday. This month we have seen the most change in her since she was born, something has happened and she has become a completely different baby- minus the sleeping part. She went from a baby that would just sit there, to a crawling, climbing, standing, talking, laughing little lady. We are having so much fun with her! She got her first two teeth within two week of each other (Bottom two-Left 9/26 & right 10/7). She began to really crawl while we were in Indiana. She is such a tease and will copy things you do. She thinks it is hilarious when people wear hats. She is still quite feisty. I thought it was going away, but this week she began to growl at us when we do something she doesn't like. It makes me laugh every time. She has gotten better about others holding her. She loves her daddy! I really think she flirts with him. Health wise she is doing great. We go back to cardiology in two weeks and to the ENT doctor in three weeks. Our pediatrician doesn't thing the tubes are doing anything. He can't see through them at all. As much as I hope they are okay, I would like to find a reason for her not sleeping. She is getting really good at sign language. She has perfected eat and more. Maybe we'll work on more this month. Her new words this month are hat and Andee. She'll crawl around saying, "Mama, Andee, Mama, Andee..." She likes to pinch, and it hurts! She eats a lot of what we do now and she really is enjoying eating...who doesn't? Actually, she likes to eat everything she finds so to prevent more of the Heimlich we have had to create a "cage" for her. She is all over the place and it was getting hard to get anything done. We've made a big area upstairs where she can do whatever she wants. Oh the joys of crawling.


Three weeks ago my beautiful baby sister had her first baby...in Indiana. I really wanted to be with my sister during this time, in fact there are very few things that I've ever wanted more. However, because of Gracelyn I was nervous about flying alone, seeing that my parents were already there. We'd been instructed to put Grace back on oxygen whenever she flies. That didn't excite me. I can't keep a bow on her head, let alone tubes blowing air up her nose. My dear friend called to ask how the delivery went and asked when I was leaving. I told her I was afraid to fly alone and that we couldn't afford to fly our family there. My friend's brother flies a lot for work. She told me we could possibly get buddy passes and asked if I wanted her to look into it. Why not? I gave her a budget and dates and she got right on it. After talking with Delta and her brother she came to my house with the bill and the itinerary. $37! That was it. Her generous brother gave us miles to get the whole family there. He even got Gracelyn her own seat so that she was comfortable, having to carry the O2 concentrator and all. All I had to pay was $37 in fees. Really?!? Over the last few years I have lost a lot of faith in people and their kindness and integrity. Unfortunately, it has taken me having a sick baby to realize that the world still is full of so many generous people who truly care and are filled with the pure love of Christ. I really have so many of them in my life. They know who they are and I am grateful to them all.

Back to Indiana... We had a week to get things together and board our flight. It was a little trickier that I thought. We had to arrange O2, they require a months notice to get one of the FAA concentrators rented. When I called it happened to be available. Next I needed to get the doctor to look her over and sign a statement with a description of what her diagnosis is, the amount of liters she requires and get it faxed. We had to find a way to and from the airport...Thanks to my brother for help with that!! We had originally planned to kennel our dog, but Jeff changed his mind... His sweet sister helped with taking care of him every day and keeping an eye on our house...Thanks Val! We couldn't have done it without you! I had to get a medical history typed up. That took some time, but it something that I have needed to do for a while. I had to get a car rented. Enterprise was wonderful to help out with the cost! I explained the situation to them and I ended up getting a BRAND NEW van less than what a small compact car would have cost. Hardest thing to do was to keep it from everyone. I didn't want anyone to know we were going, with exception of my brother-on-law. I thought I'd better get permission before just showing up to their house.

We got everything arranged and headed to the airport. We thought it would be a good idea to get the tender grips and O2 on Grace early. I didn't want to put it on on the plane and have her melt down mid take off. Ends up it was a good plan. She cried the whole way to the airport. We got checked in without any problems at all. In fact, Delta was great! We had a lot to get on the plane...stroller, car seats, O2, carry-ons, 2 kids...but we made it. Quite easily actually. Then we were ready to take off. At one point I told Jeff I wanted to put the oxygen on me. It is only a 3 hour flight, but I was nervous about Gracelyn. I think I packed about 1700 suckers just because I knew from the doctors office that they would keep her happy and more importantly quiet. I've said it before, but my kids never let me down. When I need them to behave the most they always pull through for me. They were both great! Didn't even need ONE sucker.
We landed and headed to our hotel. We got in late and I didn't want to show up on the doorstep at 1 a.m. in dirty airplane clothes. I was able to priceline a really nice hotel room by the airport for $30!This is what Mr. C imagined them to look like when they saw him. The next morning we got up and headed to W.g. Grinders! Grinders is a restaurant that we use to own in Layton/Clearfield. We couldn't be so close to one with out stopping there. We were so excited. It tasted wonderful!Then to my sister's house. As we were coming around the corner I text my mom to see if she wanted to Skype us. She said they had just left on a walk. BLAH! She said to give them an hour or so. Now what? They ruined our plans! I knew the area from visiting last fall. I told Jeff I could find them. We drove for a minute and came right up on them. We didn't know what to do. Mr. C decided he wanted Jeff and I to hide while he rang the doorbell. So, we decided to mess with them. We stalked them for a bit. We drove past them five times and even got a few pictures to prove it to them. He he! So fun! Finally they turned around and we headed back. We parked where we could see them coming back. Once they were back we pulled around the corner and waited for them to go inside. They never did. Finally I thought I would mess with my mom and ask if they were back yet. She responded to turn on Skype. They decided to sit out side and skype. Time for a new plan. None of the yards have fences, so we decided to go through the neighbor's yard and have Mr. C walk up to the door. This was our response....I was convinced they knew we were coming, but by the reaction I'm pretty sure it was a surprise!

Indiana is beautiful this time of year. I really had no desire or reason to return. We had a great week being with my parents, sister and her beautiful new baby. She is absolutely beautiful and I am so happy to get be her aunt. It was great to watch my sister become a mom and finally know what it is that I feel for my kids. I love them all so much and I miss and need them so bad it hurts some days. It's nice to have someone who knows me, who I truly am, and my sister, like my mom, really understands me. She knows my intentions and my sincerity. To be around her just felt great!

I can never repay those who arranged for me to have such a great opportunity. Never have I had someone do something so kind for me and my family. Thank you Mark! Thank you for your kindness! I pray Heavenly Father will bless you and help you find those things you may be in need of. Your generosity will NEVER be forgotten.

Heart Walk

On September 11, my family and my parents drove to Provo for the annual Intermountain Healing Hearts Heart Walk. I must admit I am getting more comfortable with these gatherings. The IHH arranged for a 1 mile walk to bring awareness to Congenital Heart Disease. They had around 700 people participate! What a great turnout! As hard as it is to be a part of this group of people it was great to walk among them. Their courage and strength is overwhelming. It is a group of amazing and strong people who I look up to.Before the walk started they began a silent auction. I wanted to be able to give back something for all that we have been given, so we decided to donate a new product I have fallen in love with. I filled it full of pictures and stated that it was donated in celebration of Gracelyn- CHD survivor. We were able to get $75 from it. * Side note: Jeff and I are now selling these. Our website will be completed soon. You will be able to purchase them there. If you are interested in them now, just send me an email. We have a couple different sizes and colors.After the walk we were able to take a picture with most of those that participated. First just the CHD survivors and then the whole group.
Then they held an angel ceremony. It was a little hard to sit through. Families had the chance to release butterflies on behalf of those they had lost to CHD. During the ceremony one of the butterflies flew to my mom and landed on her shoulder. It stayed there for a good half hour.Once again I am very grateful to the IHH committee for all they do on our behalf. I am also grateful to my parents for going with us and being a part of something that means so much to us. I love you both! I couldn't make it without you!