Staying healthy...almost

We are always being asked how Gracelyn is doing, since I haven't posted in awhile I figured I would give an update. Gracelyn is doing great. Sometimes it is hard to believe how well she is doing. We are very pleased with her progress. When we were at the doctor on Monday they weighed her at she was 9lbs. 15 oz. She is still so little, but is gaining about 5 oz. a week. A couple of weeks ago we had a scare, Mr. C got a really bad cold. Next I got it and then it hit her. The first day she woke up sick I couldn't help but cry. I was devastated. I felt like all of our efforts were in vain. Before she was born we bought a BBG (Baby Booger Getter...that is the real name, and anyone with children should have one of these.) I think that this machine saved her from being admitted to the hospital. We would suck her nose out about once an hour and about a week later her cough was gone. Just to clear the air, during that time we DID have to take her to the Emergency Room, but only to get her saturation checked because the Pulse Ox my doctor uses won't work on her. After she was born they did a cath procedure in her leg and since then it has been really hard to find a pulse or get sat levels in her feet. While she was sick her hands, feet and mouth had gone really purple and I was worried about her saturation level. I couldn't take her to my doctor to check her since his machine wouldn't work and so we were told to go to the ER. Within a couple minutes they were able to get her levels. At first it popped up at 75, they told me not to worry we just needed to wait a couple minutes to get a good reading. I tried to tell them I was really happy with that and they kept telling me to wait. I tried to explain to the nurses that she needed to be between 75-85, but they wouldn't listen. I wanted them to take her off of the machine, but they kept insisting we wait to see if we could get it to go up. Finally I got through to them. It was kind of funny. She ended up being around 85-92, which is just as bad as if it were too low. My doctor is a little worried about her being too high. Needless to say, we now have a really nice pulse ox in our home. I have been really good about not using it too often, I just try to check her every couple of days. She has been right were she is supposed to be. At the hospital they taught us to check her based on how she looks, not on what a machine says. Last week she became really grouchy and stopped sleeping at night. She would wake up and scream the most painful scream. My stomach was in knots. I thought that it must be starting to be time for the next surgery. Jeff reminded me that the doctor had mentioned that she had a little fluid behind her ears. Mr. C was going back in on Monday to have both of his ears checked after getting over two bad ear infections. While we were there I had the doctor look at Gracelyn. I don't know if I thought we were exempt from all other sicknesses since we have to deal with a rather large one, but I guess I didn't expect something to be wrong with her. The doctor found that she also has ear infections in both ears. As bad as I feel that she is in pain, I am so happy that all she is dealing with right now is ear infections. Next week she will be 3 months old and I feel really fortunate that all we have had to deal with is a cold and and ear infection. Thanks to everyone who has continued to ask about her and have kept her in your prayers. They are definitely felt.

Our First Walk with Gracelyn

We were so excited to get out of the house last Sunday and take Gracelyn for her first walk. We had decided that we could start going for walks once it hit 60 degrees. When we got home from church the sun was shining and it was about 55. We decided it was nice enough we could take her out. We bundled her up in a hat, gloves, coat, blanket and two car seat covers and headed out. It was so nice! Cole rode around on his new big boy bike and I pushed her in her stroller with Jeff chasing Cole and picking him up every time he crashed. It was nice to get her out of the house and get some fresh air. We are so excited for spring! It won't come soon enough!

Our surprise Valentine's gift: Tickets to Paul's concert

For Valentine's day my parents surprised us with tickets to Paul Cardall's first concert back after having his heart transplant only a few months ago. He titled it "A Celebration of Life." It was amazing! For those who don't know about Paul, he is a local musician who was also born with CHD. You can read his story here. Back in April 2009, my family attended a benefit concert in honor of Paul. I remember sitting in this concert crying for him and his family. I remember the video of pictures he played of babies also born with CHD, some of them surviving the disease and others "angels" as Paul calls them. I remember him playing his song Gracie's theme, and how he explained that it was a song he wrote for a little girl who almost made it to be a year old, but passed away after her body didn't accept the new heart she was given. I again remember crying for those babies and for those families. Little did I know as I sat in that concert, I sat there with a baby in my belly that would be just like the babies I was looking at on the screen. At the time I didn't even know I was pregnant.

Monday night as we walked into Abravanel Hall to attend Paul's concert I became very overwhelmed. Instantly my eyes filled with tears and I felt myself leaning on Jeff to support me as I took it all in. I thought we were going to have to leave. I thought that it might have been too soon. Paul held a silent auction to raise money for families with children who have CHD. Upon walking in the room we could see items everywhere up for auction. In front of these items were pictures of babies who had scars that matched Gracelyn's. They were everywhere. Paul had a video playing on the monitors of heart babies. We saw people we knew from the hospital volunteering. All of a sudden I realized this was now OUR world. We are now one of "them."

As Paul walked out onto the stage he received a standing ovation. You could tell exactly where his wife and little girl sat. For the longest time he didn't take his eyes off of them. He sat down and played flawlessly. He was amazing! I would have imagined that many of the people in the audience were personally affected by CHD in their family. However, at one point Paul asked for those of us who had family members with CHD to clap. I was surprised at how few there were in the audience and then I was felt saddened by how many there were going through what we are going through. The minute we sat down I knew we were seated behind another heart mom. She looked just as overwhelmed as I felt. I wanted to talk to her, but was too scared I would loose it completely if I did. She and I both cried through the whole performance. I held onto Jeff nearly the whole show, as I have relied on him to be the strength for us both since her diagnoses.

Paul played his own songs, but toward the end he played his own rendition of I know that my Redeemer lives. At that moment I knew that we needed to be there. It wasn't too soon. The spirit that was present during the concert was amazing. Paul's faith and gratitude to God is overwhelming. His positive attitude is contagious. His fight to live provides strength to me and others. At the end of the concert his little girl ran out on the stage and hugged him, followed by his wife. He then ended the concert with his song November. I left the show feeling stronger and believing in the grace of God, more that I have since we began this journey. I am grateful to my parents for giving us this great opportunity. It gave me such great hope that, though she is sick, Gracelyn can still (and will) live and amazing life. Thank you Mom and Dad! Love you both!

TWO Months

It is hard to believe that two months have gone by already. So much has happened is such a small amount of time. At two months old today, Gracelyn is growing and doing great. She is such a beautiful baby! I am amazed at how well she is healing. Her scar looks wonderful! The bottom half has already begun to turn clear after only seven weeks. I have had a really hard time with her scar. Actually, the truth is I have hated it. It is hard to see such a perfect tiny little newborn body scared so badly. I realize it is her mortal body, I realize one day she will receive a perfect complete body. I have been told it over and over again and I know it is true. It just isn't something you want to see on your new baby, but it beats the alternative. It is a constant reminder of what she has had to go through, what lies ahead in the future and just how fragile her life is. It's ALSO a reminder that miracles really do happen. For that reason alone, I guess it has begun to grow on me and I have learned to accept it. To look at Gracelyn now, at two months old, you would see a perfect newborn baby. She looks so healthy. Though her heart problems will always be with her, she is finally becoming so much more than just "sick broken hearted Gracelyn." She is Gracelyn that loves her brother and allows him to give her all the "attention" he wants. She is Gracelyn that smiles at the sound of her daddy's voice. She is Gracelyn that knows exactly when her mom walks into a room. She is Gracelyn that loves to go for rides. She is Gracelyn that can't go far from her binki. She is, and will always be, Gracelyn that is living proof that God exists and loves us. She is Gracelyn that has added so much to our small family that words can't express.

At her TWO month well child visit she was:
Height: 21" 12%
Weight: 9 pounds 2 ounces 12%
Head: 24%
Sats: 90%

At two months old Gracelyn:
-LOVES when her brother holds her
-Coos
-Smiles at the sound of her dad's voice
-Loves her binki
-Loves to be bathed
-Hates to be naked
-Sleeps 6-7 hours at a time at night
-Loves to be held
-Still wears newborn size clothes
-Loves to ride in the car
-Is only on two medications
-Still has a piece a gortex in her heart keeping her alive
-Heart still sounds like a washing machine

Though they have been tough, we are so grateful for these first two months we have had Gracelyn in our lives. She truly is a blessing. She has taught us to grow in ways we never though we would have to or could. We love you baby Grace!

Happy Valentine's Day!

8 Weeks Old

Gracelyn is eight weeks old today. We took these pictures of her yesterday. My sister has come across quite a few photographers using what they are calling a baby pod or cocoon. Being the domestic goddess that she has become since moving to Indiana, she decided to make us one. I love how they turned out. Thanks Cam! Seeing Gracelyn every day I think that Jeff and I may not notice the little changes in her. My in laws are living in California right now, serving an LDS mission. They only see her through the pictures we send. After seeing these pictures, my mother-in-law told me that she looks like she is no longer in pain. She is right. I compared them to older pictures and her face has relaxed. She finally looks comfy! The fact that she loves to be in this little cocoon helps. :) Once you put her in this she will fall asleep for hours, WITHOUT a binki.

22 Ounces in 5.5 days!!

I haven't written in awhile, not too much has happened at our house. Just a lot of trying to lose weight for some and a lot of trying to gain weight for others. At least one of us has been successful! A week ago when Gracelyn weighed in she was up 6 ounces. Her doctor has set a goal of 1 ounce a day, we almost made it. He was pleased and told us to continue with her current diet. I was happy with that, it meant no more pumping for another week. We started noticing last week that Gracelyn was starting to get a little chubby in the face...okay a little chubby doesn't really describe it...it was more like a lot chubby. Big CHUBBY cheeks and a DOUBLE chin! I decided to weigh her a day and a half early. She was up 22 ounces in 5.5 days! I called my doctor right away and asked if we should take her off of the high calorie formula. After he laughed, he agreed. We no longer have to feed her bottles. YEAH! I had someone at church tell me she was an over achiever. :) She is progressing in ways that doctors questioned she ever could. The second week we were at Primary's I was told that I wouldn't ever be able to nurse her. Now, only five weeks later, she is fed only through nursing.

Gracelyn has managed to stay healthy. It has required doing lots of extra laundry (we change clothes every time anyone leaves the house), lots of washing hands, not leaving the house much, not seeing very many people, no one other than us and grandparents holding her, but it's worth it. It is worth it to have her healthy and growing strong!

We really are amazed at how well she is doing. I am so pleased with her progress and have so much hope for what the futures holds for her. We pray every day that things continue in a positive direction. She is such a miracle and such a beautiful baby!I want so much to be able to share her with the world. There is just something amazing about holding a new born baby. We are so lucky to have her.