Who needs Italy?!? We love Holland!

I loved this and had to share...

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo... David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

18 Months...

Wow! How time flies! So much has happened since my last post. So many wonderful things. Maybe that's why I've neglected my "journal" here on my blog. When I come here I am reminded of our life as it is, you know-reality. It makes me deal with things I don't want to. Gracelyn is doing so well right now and I am comfortable living in an ignorant bliss, just feeling blessed and grateful for one more "normal" day. I am grateful for all of those that continue pray for our sweet girl and continually check on how she is doing. Thank you!

Like I said, a lot has happened since our last post. Our biggest news is that Gracelyn is now a big sister. On June 17, we were given a perfect baby girl with a perfect heart! She truly is perfect and Heavenly Father knew exactly what we needed. Gracelyn is a great big sister.I was a little worried at first. Gracelyn wanted to treat her the only way she knew how...just like she treated her baby doll. From the first time she held her she knew exactly what to do. She immediately began to rock her back and forth, it was a violent rock, but we've managed to calm it some. :)On June 5, Gracelyn celebrated her one year anniversary of having her Glenn surgery. It was an emotional day, filled with gratitude. I'm so grateful for the last year that we have had. It has been so much better than I ever imagined it could be. Coincidentally, the American Heart Association held their annual "Heart Ball" on the 4th and Jeff and I were GIVEN tickets...very expensive tickets. :) This year the association focused on congenital heart disease...what a year to go. Celebrating her one year anniversary and being already be emotional, it made it difficult to sit through. Grandpa and Grandma Hales kept the kids and when we came we found Grace with a new toy in celebration of such a great year. It was the perfect gift, a stroller for her baby. Every great celebration needs treats, so we finished off with heart cupcakes. I can't believe our baby girl is 18 months. What a ride it has been. She is so wonderful to have in our home. She is such a testimony of God's love, grace and existence. It has been so hard dealing with what we have gone through with her, but I would go through it over and over again just to have her in our lives. She has forever changed who I am, what I believe and what I KNOW.

Grace at 18 months:
-She is very girly. She loves her hair and nails done and will sit perfectly still while I do them
-She is the feistiest, sweetest little ball of happiness you will ever see
-She still has a binky problem and it's worse than EVER...we're going to have to start working on that.
-She started nursery and she loves it...she better enjoy the next few weeks while she can still go. :(
-There isn't anything she doesn't say. She is so fun to talk to and has the cutest voice.
-She mimics everything her brother says and does.
-She wants to do and go everywhere her brother does.
-She loves to be outside
-She thinks SHE is the mom. Poor Mr. C gets put out on time out often by her...not that he listens or cares.
-She has a slight shoe addiction
-It's taken a while, but she has finally began to bond with people. She loves her grandpa and grandma and has even chosen to stay with them over me.
-She has to dress herself
-She has set her own bed time of 8:30 and is begging to be in bed if we haven't put her in by then
-She can eat as much as her brother
-She loves the color pink and can always identify it when picking things out
-Her life has become a musical, as she sings about everything we do
-She is finally making friends with her doctors and doesn't scream and cry at their presence
-She does this weird thing where she takes her two fingers and feels under her neck (we think she is feeling her pulse) Jeff's mom will always tell her "You're still alive Gracelyn!" :)

Heart Mom Lunch

On April 30, my mom and I had the chance to get together with all the other "Heart Moms" in the area for a luncheon. They gave us each the chance to invite a women that has supported us through what we have been through with our heart babies and I obviously chose my mom. First they did Glitter Toes on us... so nice, especially since the ladies that were there doing it were all volunteering their time for our sake. Next they fed us lunch catered by Cafe Rio. After lunch we introduced ourselves, guests and who our child was. Last the played a video of all of our heart babies. They did such a great job on our behalf. Everything was decorated so cute, hearts everywhere of course, and it was finished off with darling heart cupcakes everywhere. It was nice to get together with some of ladies that I have come to know over the last year. They are definitely a source of strength to me.

15 Months...

My little lady is getting so big! She has me wrapped around her finger more than ever. She is such an amazing little baby. I told her doctor the other day that if she had a whole heart she would be pretty near perfect. She has really changed a lot recently. She has become friendly with others, even strangers. She is always waving to people and telling them " Hi!" She is so happy. We usually find her walking around the house dancing. She is a tease, just like the rest of them in the house. She will walk up to her brothers toys, grab one and put it behind her back until he notices. She'll sit on her binki and ask me where it went. I wouldn't expect anything different with Jeff as her father. A while back she started telling me when she needed to go to the bathroom or that she had in her diaper. My parents got her a little toilet and she has gone in it ever since. (She is no where near potty trained, but it's a start. It would be great to not have two in diapers) She only really signs two signs anymore, please and bath. She says anything she wants to and usually repeats the last word of my sentence. She sleeps through the night, almost 12 hours every night. If we don't have her in her bed by 8:30 she is standing at her crib begging to get in. She eats anything and everything. She LOVES to bathe. If someone in the house is getting in the shower or bath she'll cry until she gets in, even if she has already been in for the day. As far as her health she is doing well. Her oxygen levels have been low, making for some purple lips, but she has been congested for a while. Now that she has started to walk we find that she will play for a while and then she lays on the ground, get up and play for while and then crash again. It makes me sad to see, but at the same time I'm happy she can do what she does. She has recently gained a lot of weight, moving all the way up to the 50 percentile. Her doctor was shocked by the number. I give credit to the whole milk and all the bread she loves to eat.

Weight: 22lbs. 3 oz. 50%
Length: 30" 30%
Head Circumference: 49 cm 100%+ (I've never seen that % on any of my kids before. :) )
She is such a happy girl...
Waving to everyone that would walk by...
Lately she won't keep her fingers out of her mouth. She likes to feel her teeth...
Playing "peep a poo!"

Peace...

Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.

~Author Unknown

Gracelyn's echo and Fetal echo appointment...

On March 8 we had our two-for-one appointment at Primary's. Gracelyn had her 4 month check up and we had an echo done on the new baby. I always hated my fetal echos with Gracelyn. They are so uncomfortable. Laying on your back for at least an hour with some one pushing at every angle of your belly isn't pleasant. This time was at least an hour and a half. The baby wouldn't cooperate at all. ( I think this is why the picture looks like I want to scream, "Get me out of here.") Gracelyn wasn't exactly easy either. We were told that it was sedated, but when we got there they said it was just a limited echo and that they wouldn't need to sedate her. She didn't want to be there in the first place and starving her didn't help the situation. She cried the entire time. Great news is that Gracelyn's echo was good. She is sating low and we were told to monitor her for a few weeks. I'm not sure what we will do if she continues to stay low, but we were told to contact our cardiologists. The fetal echo also looked GREAT! It was such a relief to hear. We were told we could still have defects like holes in the heart (although it didn't look that way), but nothing compared to what we have been through with Grace. All the valves were working and the size was perfect. We are so excited for our new little one! I can't believe my BABY will be a big sister. Weird!!!

Disneyland

A couple weeks ago we had the chance to go to California with Jeff's family to "pick up" their parents from an LDS mission that they were serving. This was the first chance that Gracelyn had to meet her Grandparents.While we were in California, Jeff's entire family spent the week at Disneyland. We all stayed in connecting rooms at the Disneyland hotel. We had a lot of fun!

Gracelyn's favorite ride was definitely Nemo. We couldn't keep her away from the window. She just squealed and laughed the whole time.

Before we left Grace started showing interest in walking. While we were in California she really started walking everywhere she went.

We took her on every ride she could go on. She loved to take over the controls and drive. One of the nights we were there we ate at at Goofy's Kitchen. All of the characters would go around and visit the different tables. She never got scared of them, but most of our pictures look like this because she wouldn't take her eyes off of them.
She was such a great baby! We had such a great time and are so lucky for the chance we had to take her there!

Our Big Surprise/Good News

First-Our Big and Surprise (especially for us) News. We haven't really talked about this much. It has taken awhile to accept and digest. After a few ultra sounds I even questioned it, but I'm ready to spit it out. Actually I'm a little fat around the mid-section and it can't be hid anymore. In about four months Jeff and I are expecting Baby #3. I am due on June 27th, my birthday. Happy Birthday to me! I know it is true that Heavenly Father knows the true desires of our heart. Jeff and I didn't have the courage to even talk about having more kids, let alone having one. However, both of us wanted more. The chances of having another heart baby are double what they odds of Gracelyn even having her defect were. The percentage is small, but it is still very scary to us. Gracelyn was only 9 months old and 4 months out of surgery when I found out I was pregnant. On her first birthday we shared the news with our families that she would be a big sister. Even though it was a surprise and is very scary, we are SO excited. It will make Grace and the new baby about 18 months apart. At this point I'm not sure if I am more scared about another heart baby, two kids 18 months apart, possibly two heart babies 18 months apart or three kids under the age of four. What I do know is that, for whatever reason, this baby is supposed to be coming to our family at this time. We aren't finding out what the baby is. We want it to be a surprise. Tuesday we had an appointment with the perinatologist at McKay Dee. We were send there because they deal with high risk pregnancies and they wanted a good look at the heart. Below are a few pictures of our little one. On to our Good news: This little picture below is beautiful!! It is a picture of the heart. It shows four symmetrical chambers, functioning valves, a beautiful developed pulmonary artery and blood flowing in the right direction. It gives us a lot of hope. The heart is still the size of a finger nail, it's tiny. However, it was at this point the could see something wrong with Grace. The ultra sound doesn't show it all, but it's a good start. What we do know is that this little ones had ten good fingers :) We saw lots of pictures of them. It kept it's head buried, but waved to us often. We are so excited to share this news. We are confident all will be well. On March 22, Gracelyn has a cardiology appointment to have and echo done. We pray this will be our only "2 for 1" cardiology appointment, as we are having a fetal echo done the same day. We are so grateful for all the prayers that have been said on behalf of our family. We ask for continued prayers on behalf of our new one.

RSV Season and TWENTY POUNDS!!

Every four weeks we take Gracelyn in for her Synagis (RSV) shot. We felt so LUCKY to be able to get it TWO seasons in a row. I was warned that it was usually only given to infants for one sick season in their life. I asked my doctor and he told me they wouldn't do it. I asked him if we could please look into it and we got it! We were approved for a second season. YEAH!! This shot is so expensive. I believe hers is up around $6000 per shot this year. We start in November and end in April. Thank goodness for insurance! I have made myself a little sick over RSV season. I am so nervous about her getting sick. My doctor told us last year that if she got it we could lose her. Everything I read says how hard RSV is on CHD and cyanotic babies. Also, as a side note: I don't particularly love sleeping on the couch at the "Mansion on the Hill." I want to be at home with my family. For this reason our we have been told that we need to be careful with her. No more church until the end of April, which is a bummer because it is so hard to enjoy and learn anything at church with a one year old, but she has been an ANGEL. I've been told several times how good she is. I hope we don't break that habit. We need to keep our house somewhere safe for her. SO, if you are sick, we will miss you, but please don't come by. :) If you are going to love and touch her, PLEASE wash your hands first. It is hard, but we are getting ourselves back into the hand-washing/hand-sanitizer mode where ever we go. I hope that isn't too harsh. We love that she is loved, but we love her being healthy even more. Back to the shots...She received her latest injection on Tuesday. Before they give it to her they weigh her so that they can give her the correct dose. On Tuesday she finally hit the big TWENTY. 20. TWO. ZERO. She is moving up! She is in the 15th percentile. She has been in the 5th percentile since birth. It must be that yummy whole milk we've switched to and all the bread, waffles and crackers she loves to eat. She is bigger than other 13 month olds I know. (Now, that big 95% head could have something to do with it, but regardless, she is 20 pounds.) I LOVE IT! With that being said we are super happy with how she is doing. Honestly, she couldn't be any better right now. Well, a whole functioning heart would be fantastic, but you get the point.

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. :)