Our Good and not so Good Christmas Eve...

We had a fun Christmas Eve Morning and Afternoon this year. As usual, we ate lunch with the Sanders family. Later we went up to my Uncle's house for our Christmas Eve tradition. Ever since I was born I remember getting together with the Hales family and celebrating Christmas Eve. I always loved squishing our HUGE family into my Grandparents house. I loved getting together with my cousins (there are five of us my age alone) and eating Grandma's orange rolls and Grandpa's carmel corn. I miss that. Now that my grandparents are gone my sweet aunt and uncle let us invade their house and enjoy a night of stories, music and just visiting with one another.

After we left my uncle's house I wasn't feeling great about how Gracelyn was doing. Her ear began to drain and we couldn't wait to get antibiotics in her until after the holiday was over and doctors would be back in. I spent the day calling around to insta cares and no one would see her because of her condition. I couldn't get a hold of my doctor to get a simple prescription. Christmas Eve evening I ended up taking her to the ER. Not wanting to be away from Cole for two years in a row I went alone and left Jeff and him home to get things ready. Thinking we would be back soon. Wrong. Gracelyn wasn't satting well and the doctors didn't like it. She was congested and screaming, she wasn't going to sat well. As long as she is above 75% she is okay. The doctor disagreed with me. He told me they don't let babies (normal babies) leave that are sating at 76% (which was her low...while screaming.) He tested her for everything. Pneumonia, RSV, influenza...nothing. I knew she had an ear infection. He told me she needed to be admitted. I told him no. I knew she was okay and didn't want to take her up and expose her to something more. He insisted. He wanted to monitor her and give her breathing treatments if her sats went below 75%. Finally at 1:00 a.m. I gave in and told him I would be leaving Christmas morning by 7:00a.m. I sat all night watching my baby sleep soundly. I even saw her hit 91% O2. I couldn't help but cry. We didn't need to be there. We needed to be at home enjoying our first real Christmas as a family. 7:30 came and we were still there. Finally I told a sympathetic nurse to get a doctor to release us and he came. Feeling bad, the doctor that came to release could only smile and tell me the ER doctor wasn't educated in her situation. He wrote me a prescription for her ear infection and wished us a Merry Christmas. We were home by 9. So frustrating. Luckily we made it home and enjoyed Christmas with our families. A few days later we saw Dr. Rose. While at him office she was at 94% O2. I was amazed. I haven't seen that number since that day she was born. Dr. Rose was happy to know that she didn't have the breathing treatments. Come to find out it can make the heart "wack out". HHMMM...the could have been an enjoyable Christmas. Luckily she behaved and we were able to spend it at home. The nice nurses brought her in lots of presents. Of course she liked the boxes they came in more. She used them for hats...or should I say "hat

Delivering Care Packages to PCMC

The morning of December 23 we had the opportunity help deliver the care packages that were assembled on Gracelyn's birthday for the heart patients at PCMC. This was the time that had been scheduled for us to bring them down. Coincidentally it was the anniversary of Gracelyn's first heart surgery. Even the exact time. It was very therapeutic to say the least. We were told we could just drop them off at the front door, but that didn't seem very fun. Jeff and I walked up to the Cardiac Intensive Care Unit (this is where the children are that have just had surgery) and told them what we had. They were ecstatic. They told us to bring them up. We took a bunch of them there and we were then directed to take them to the floor where the rest of the healing and sick heart patients were at. On this floor Jeff and I and the young man whose eagle project this was, had the chance to hand them directly to the families and introduce them to Gracelyn. She is a great testimony to these parents of the sick newborns of where there baby could be in a year. She looks so healthy and strong. The father of the last child we gave a basket to began to cry. Of course so did I. I knew where he was at and I know how bad it hurts. I left feeling even more grateful. More importantly we went to PCMC and left. :) I am so grateful my family and I had the chance to be a part of something so GREAT! Thank you again Brian! We will never forget this!
After we finished delivering the packages we had lunch in the cafeteria. It just seemed fitting. This time we brought Gracelyn with us. :)

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!

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.

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."

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.