tag:blogger.com,1999:blog-78026573234368113792024-03-13T10:48:53.330-06:00AnnaSophia - God's MiracleAnnaSophia Elizabeth Berry, my third child, was born December 31st, 2007. It was unknown at the time of her birth that she had major heart defects: an interrupted aortic arch, a ventricular septal defect, an atrial septal defect and a bicuspid aortic valve. She had surgery to correct most of her defects at 11 days old. She developed congestive heart failure thereafter, requiring a heart transplant. This is her story.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.comBlogger271125tag:blogger.com,1999:blog-7802657323436811379.post-53700569599144350172013-04-15T21:20:00.002-06:002013-04-15T21:26:05.005-06:00AnnaSophia gets a Make-A-Wish<div dir="ltr" style="text-align: left;" trbidi="on">
AnnaSophia was recently granted a Make-A-Wish! We just returned from a 7 day trip to Orlando, Florida. Make-A-Wish is an amazing organization that grants wishes to children fighting life-threatening illnesses. I am working on getting pictures up along with all of the details of her fairytale wish trip. <br />
<br />
Blessings.</div>
Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com1tag:blogger.com,1999:blog-7802657323436811379.post-64751099795529483502012-07-11T12:34:00.001-06:002012-08-20T22:09:02.276-06:00Happy 4th Heart-iversary AnnaSophia!<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkPFSD-rieLDNl1tiyhpqgqPsvO5fmbw_jXDAmZa-J0Krw7af7Hbbr0WzYE-s4ELduuotNQudG5Jr2BLJO8bchWTzrxZa0b-WrvpuZhs0PxtrbIdGuzhkxip6F18K18Uxeddb6Bz8gIX3K/s1600/heartiversary+2012+009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkPFSD-rieLDNl1tiyhpqgqPsvO5fmbw_jXDAmZa-J0Krw7af7Hbbr0WzYE-s4ELduuotNQudG5Jr2BLJO8bchWTzrxZa0b-WrvpuZhs0PxtrbIdGuzhkxip6F18K18Uxeddb6Bz8gIX3K/s640/heartiversary+2012+009.jpg" width="428" /></a></div>
<br />
<br />
<br />
Today marks the 4th anniversary of AnnaSophia's heart transplant. It has been a journey full of ups and downs, scary times and triumphs. Today, I feel very blessed. I look at my precious daughter, and I am so extremely grateful for our donor family, the Hibberts. This has been a very bittersweet day. When I look at AnnaSophia, I feel sweet joy, thankfulness and hope, but there is an ache deep in my heart for Mason's family. I cannot imagine what it is like to carry on daily without your child...<br />
<br />
I know what it's like to live with a critically ill child. I know what it's like to have a doctor tell you that your child only has two months to live and the wait for a heart is six to nine months long. I know what it's like to wonder if today is the day that will be your child's last breath. I know what it's like to mentally plan your child's funeral each day, not knowing how much time you will have left. But nothing compares to the reality of waking up each day and realizing that your child is not there with you.<br />
<br />
What is so amazing to me is that through the nightmare of losing their son, the Hibbert family decided quickly and without hesitation that they would donate their son's organs. Dave said that the decision was "easy". Through Mason's death, they would give others a gift of life.<br />
<br />
<span style="font-size: large;">Dave and Char, you are <i>my heroes</i>.</span> <br />
<br />
Mason, I think of you daily. When I walk into my daughter's room in the morning, I see your beautiful, smiling face. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlq1T5oQp2gE0GHUxSctucP28JmLWE143eyb5oL01dnbC_PFz_CY9GjbgTxyvoot9eynO2jhOSVyKmgbGoImo3mOKmTahQNhCQjBrb_ZHRIqEV39QAhnTBLcKSRiZd62dNHBR_6-4Je52q/s1600/heartiversary+2012+012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlq1T5oQp2gE0GHUxSctucP28JmLWE143eyb5oL01dnbC_PFz_CY9GjbgTxyvoot9eynO2jhOSVyKmgbGoImo3mOKmTahQNhCQjBrb_ZHRIqEV39QAhnTBLcKSRiZd62dNHBR_6-4Je52q/s400/heartiversary+2012+012.jpg" width="267" /></a></div>
<br />
<br />
If you have never considered donating your organs, please think about how you can give others the gift of life. Click <a href="http://donatelife.net/">here</a> to find out how to register in your state.<br />
<br />
AnnaSophia is so full of life. She loves going to the park. She wants to constantly keep up with her older brother and sister, running after them, laughing, jumping and dancing. She is an amazing little girl, who wants so desperately to live life to the fullest.<br />
<br />
Thank you Dave and Char, thank you Denver Children's Hospital, thank you to all of AnnaSophia's doctors and nurses, thank you Jilayne, thank you to all who prayed for AnnaSophia, thank you to those of you who lent a shoulder to rest on and cry on. I wouldn't have my daughter today if it weren't for all of you.<br />
<br />
Blessings...<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT7UMpBBYEWqweVJqKRa85vvmZSSTU5ChLOhd4Vk7H0Pufmb5drKbAwtL6LC38aqRlBzOQtBMDo8stHNxHQLv5y03aeOvLcrGXLdKYifvU9sCiD2VdOUFgXwr8eDV8j4TjRZggwqDRIz2-/s1600/orange+balloons.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT7UMpBBYEWqweVJqKRa85vvmZSSTU5ChLOhd4Vk7H0Pufmb5drKbAwtL6LC38aqRlBzOQtBMDo8stHNxHQLv5y03aeOvLcrGXLdKYifvU9sCiD2VdOUFgXwr8eDV8j4TjRZggwqDRIz2-/s320/orange+balloons.jpg" width="320" /></a></div>
<br /></div>
Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com4tag:blogger.com,1999:blog-7802657323436811379.post-6662855212116428362012-06-23T12:43:00.001-06:002012-06-23T12:48:09.490-06:00MRI Results<div dir="ltr" style="text-align: left;" trbidi="on">
I am very overdue on posting this, and I do apologize. Life continues to move quickly. I refer to this as "Life moving at the speed of life".<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
MRI day started in the wee hours of the morning, with us arriving at Denver Children's hospital at 6am. <span style="background-color: white;">AnnaSophia is always excited to go there. She feels quite at home. This phenomenon only occurs in children who have spent a lot of time at the hospital. She loves her doctors and nurses, and so far has not rebelled against her required visits.</span><br />
<span style="background-color: white;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwSS8jUDux665tbWvtTc8RsSBCnvoorCX8rQbnbJnvUVrOmAi-fQky9LbnQWxigQu9zOWExy3DdBHgjW7Osvhg6_fD9vvVBa2V63S76t_HIbMEvVAjfenL3mVgnVtgDuTk0s79Bu-t2x9z/s1600/5-8-12+mri+005.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwSS8jUDux665tbWvtTc8RsSBCnvoorCX8rQbnbJnvUVrOmAi-fQky9LbnQWxigQu9zOWExy3DdBHgjW7Osvhg6_fD9vvVBa2V63S76t_HIbMEvVAjfenL3mVgnVtgDuTk0s79Bu-t2x9z/s200/5-8-12+mri+005.jpg" width="200" /></a></div>
<span style="background-color: white;"><br /></span><br />
<br />
AnnaSophia did experience a little anxiety after the anesthesiologist visited us. She really wasn't too keen on putting the oxygen mask on, even after we "colored" it with some yummy smelling Fruit Smackers. The doctor really wanted to make this a better experience for all of us from the last time she underwent anesthesia. (Quick reminder: She experienced what is called Emergence Delirium while recovering from her heart cath. Basically, she was extremely agitated, angry and out of control.) <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWo5YQLNSwQQB72-dVRfM-8hW04E185g47dA4kHwUrJez4mn98ECeafxV3t1So3y59knFpLudsh3WRuihymQRzue_A2HNiJnF5SpSV9PcYjrbjLQUqSUkPFetKuY93rlNmxGi1FboJWhP7/s1600/5-8-12+mri+006.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWo5YQLNSwQQB72-dVRfM-8hW04E185g47dA4kHwUrJez4mn98ECeafxV3t1So3y59knFpLudsh3WRuihymQRzue_A2HNiJnF5SpSV9PcYjrbjLQUqSUkPFetKuY93rlNmxGi1FboJWhP7/s200/5-8-12+mri+006.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyle and AnnaSophia</td></tr>
</tbody></table>
<br />
The doctor ordered some oral Versed. The difficult part was getting the medication in AnnaSophia. It took a few adults holding her head still while shooting the drug into her mouth with an oral syringe. She was not happy with me, but once the Versed started to take effect, she was a different child. This drug is amazing! She was relaxed and happy...and the best part is that she would not remember a thing. Bonus!<br />
<span style="background-color: white;"><br /></span><br />
<span style="background-color: white;">I was able to carry her back to the MRI room, and be with her while she went under. No matter how many times I've watched this, no matter how much I understand all of the technical information, this is still hard for me. Watching my child become limp and fall asleep while under the effects of these drugs is still hard. I don't even know why. Maybe it's because I'm handing complete responsibility over to a team of doctors and nurses. She's out of my care at that point. Maybe it's because it brings back hard memories of her CHD (congenital heart defect) journey. The open heart surgeries, the heart failure, the time spent in the CICU, the time she went into cardiac arrest after transplant, and the list goes on.</span><br />
<br />
However difficult it is, I never show it. I'm strong for her. I smile and tell her she's doing great. I kiss her, and tell her I love her. When I turn around to walk out of the room, the tears fall...quietly...and just a few. I always take a deep breathe and know that she is in God's hands.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFDhCltafS7x2ptSZHGsofxsuCLnvsqQZ0KDl4YLdDNdBFZBGaEpdd1k6nGq3yrKTB1ljje5OSxA72CmL-A5puQH9L6VARfbxq5bA23TXMcRKANEVQnwNgMVkX-VVyYeDNVwHDc5J6FlM6/s1600/5-8-12+mri+009.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFDhCltafS7x2ptSZHGsofxsuCLnvsqQZ0KDl4YLdDNdBFZBGaEpdd1k6nGq3yrKTB1ljje5OSxA72CmL-A5puQH9L6VARfbxq5bA23TXMcRKANEVQnwNgMVkX-VVyYeDNVwHDc5J6FlM6/s200/5-8-12+mri+009.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping off the anesthesia</td></tr>
</tbody></table>
<br />
<br />
The MRI took about two hours to complete, and AnnaSophia came out of the anesthesia beautifully. She was actually quite entertaining. To put it plainly, it was like she was drunk as a skunk. A happy drunk. She was high as a kite, smiling, talking and cooperative. At that point, I could've hugged the anesthesiologist! What a difference from last time!<br />
<br />
<span style="background-color: white;"><br /></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_NPhJ15MYJvli7rjefVARUtMd55F4UUkZGWGTjlisvPNdi18sPHfhfdIBA7UGH2jkP4eMullpsoF7i0Qbz6rGoHdd8aeziLKZc_0DUDQC1uUnTj07rOaGXzrdo5bW2hTbAu8_pLyCFJTH/s1600/5-8-12+mri+014.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_NPhJ15MYJvli7rjefVARUtMd55F4UUkZGWGTjlisvPNdi18sPHfhfdIBA7UGH2jkP4eMullpsoF7i0Qbz6rGoHdd8aeziLKZc_0DUDQC1uUnTj07rOaGXzrdo5bW2hTbAu8_pLyCFJTH/s320/5-8-12+mri+014.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">IV is out and she is a happy girl!</td></tr>
</tbody></table>
<span style="background-color: white;">As she was recovering, the radiologist came in to speak with us. The most amazing thing happened. He reported that her heart looked great! I couldn't understand how we had gone from, "it looks like there is a mass on her heart" to "there is no mass and her heart looks great", but the bottom line is, I'll take it!</span><br />
<br />
The doctor said that her vessels looked good, her heart function looked good, and his best guess is that the view of the ultrasound may have picked up part of her liver making it look like there was a mass on her heart. I felt like a huge worry had been lifted from me. I was thanking God at that moment that she got a clean bill of health.<br />
<br />
The reality is that at some point, AnnaSophia will get sick. Her heart will have some problems. She could reject. She could developed transplant coronary artery disease. She could develop heart failure. At some point, she WILL need another heart transplant.<br />
<br />
But for now, she is great...and I'm good with that. I have been blessed with more time with my child, living life like any other child (except for the fact that we wash hands like doctors preparing for surgery, and she takes immune suppression medication). I have more days to love my children and make memories with them. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTp8QuKclV3a6i0Czk-VCAjbfnacdzDoxFA2fACoX9Xa8z6pIFjA1Vh4GXrkfOuh0jG4arhXfvxsB86x0dnbcC7fhTewLqAbOx4Tp5ZqPojZ_xwS9WNEqPAquToDsIyAyMRTHGlMX7qgSq/s1600/5-8-12+mri+016.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTp8QuKclV3a6i0Czk-VCAjbfnacdzDoxFA2fACoX9Xa8z6pIFjA1Vh4GXrkfOuh0jG4arhXfvxsB86x0dnbcC7fhTewLqAbOx4Tp5ZqPojZ_xwS9WNEqPAquToDsIyAyMRTHGlMX7qgSq/s400/5-8-12+mri+016.jpg" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Still feeling happy and on our way home<br />
<br /></td></tr>
</tbody></table>
<span style="background-color: white;">Thank you for everyone who prayed for her and wished us well. All I have to say is that I feel truly blessed.</span></div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com2tag:blogger.com,1999:blog-7802657323436811379.post-87474506631733781622012-05-07T21:27:00.000-06:002012-05-07T21:27:33.773-06:00Patiently Waiting.....<div dir="ltr" style="text-align: left;" trbidi="on">
AnnaSophia is scheduled to have an MRI of her chest tomorrow, May 8th. Last cardiac clinic revealed some things that left the doctors with questions and me with a lump in my throat.<br />
<br />
Let me back up a little bit.<br />
<br />
April 3rd, AnnaSophia started to get sick. At first, it didn't seem so bad. She had some diarrhea, but was happy, alert and still hungry. Well, the diarrhea progressed and then the vomiting started. I'm sure some people would think, "What's the big deal? Kids get sick.". The problem is when a heart transplant kid gets sick, there are complications that other children don't have to deal with, like keeping immune suppression medication down. Not only was she having difficulty keeping her anti-rejection medication down, but she was getting dehydrated. Both are bad. <br />
<br />
By Friday, I made the decision to take her into the emergency room. There is always a mini battle in my mind as to whether to make the journey to Denver, an hour away, or take her to our local E.R. She was so limp and sick that I thought it would be better to take her to the closer hospital. She received good care, medication to stop the nausea and vomiting, and we were able to get her to drink fluids. Transplant called and ordered some blood tests to check her for EBV (Ebstein Barr Virus) and CMV (Cytomeglovirus). We also redosed her immune suppression medication in an attempt to keep her levels stable and avoid rejection, which is always a concern when she gets this sick.<br />
<br />
Easter 2012 was spent at home with AnnaSophia snuggling on my lap. It was not our traditional "go-to-church-and-visit-family-and-have-Easter-egg-hunts" kind of Easter, but I was thankful for my family that came to our home to wish us well.<br />
<br />
AnnaSophia slowly recovered, but in the two weeks that she was sick, she lost 3 pounds. Three pounds for a child that only weighs 35 pounds, was a lot. <br />
<br />
After talking with transplant, it was decided that after she improved for a couple of weeks, a visit to cardiac clinic was the next step. Of course, she is such a champ and was great with the blood draw, blood pressure, weight and height, echo and exam. When our transplant coordinator was determined to have the doctor look at her echo before we left, alarms in my mind started going off. The doctor wanted us to repeat the echo.<br />
<br />
Apparently, the doctor saw an area of her left ventricle that was not relaxing like it should after contracting. The second echo was performed with myself, the doctor, transplant coordinator and nurse crowding into the small room to view the ultrasound. Once the area of concern was pointed out, it was plain as day. A small area of her left ventricle looked really thick.<br />
<br />
The first thing I that went through my mind was REJECTION. I remember from the last time that rejection for AnnaSophia looked like a stiff left ventricle. The walls were thick and not pumping well. This appointment, I was told that instead of coming every four months for cardiac clinic, we would now be coming in every month to monitor that area of her ventricle.<br />
<br />
I went home trying not to get too excited over the news. At least the transplant team is on top of things and watching her closely, right??? By 4pm that afternoon, I got another call from transplant. According to the doctor in charge, he was not as concerned about the ventricle issue as he was about something that shocked me even more. <br />
<br />
The doctor saw a mass on her heart.<br />
<br />
AnnaSophia has a 1cm mass inside of the pericardium beneath her ventricles. The first thing that popped into my mind was post transplant lymphoma. This is the really scary stuff that no parent wants to hear. "Your child has cancer." The doctor clarified that the mass looks more like the consistency of a liver, possibly a blood clot. The thing that scares me is that this mass was not there when they did the echo on her in February, but it is now.<br />
<br />
My mind has been wrestling with this information for a week and a half now. My intellect is battling my emotions. I keep thinking things like, "It can't be cancer, because she isn't EBV positive." I keep wondering how a blood clot could appear on a healthy heart. <br />
<br />
My hope is that after her MRI tomorrow morning, I will have more answers. For the time being, I just ask that AnnaSophia be remembered in your prayers this week. I will post again after her MRI.<br />
<br />
Blessings.<br />
<br />
<br />
<br />
<br /></div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com2tag:blogger.com,1999:blog-7802657323436811379.post-21377976420719102552012-02-02T12:58:00.000-07:002012-02-02T12:58:34.522-07:00Congenital Heart Defect (CHD) Awareness Week 2012<div dir="ltr" style="text-align: left;" trbidi="on">The problem with having two blogs is that sometimes I'm conflicted about which blog to write on. This was a tough one. A lot of people check AnnaSophia's blog for updates on how she's doing. I've used it to raise awareness about congenital heart defects (CHDs) as well. I just wrote a new post about Congenital Heart Defect Awareness Week (February 7-14, 2012). After much thought, I decided to post it to Rabbit Trails and Detours. <br />
<br />
The post is all about CHDs, so why did I post it there? Because Rabbit Trails and Detours is a forum for my mental meanderings and the "what's-going-on-in-my-life" updates. I realize that I haven't posted much--on either blog. It's partly because I've been so busy, but it's also partly because I needed a period of time to keep some things to myself. But, CHD Week is a big part of my life. This is our second year planning out events and raising awareness in our local community, so I felt like RT&D was the best place to put it.<br />
<br />
The problem with a blog is that I feel the need to write and write and write....<br />
<br />
The great thing about social media like Facebook is that a person can post a sentence. It's quick and easy. For whatever reason, a blog unleashes sentence after sentence. So before I carry on too much, click <a href="http://www.rabbittrailsanddetours.blogspot.com/">here</a> to read all about CHD Week in Colorado Springs...the why, the what and the where.<br />
<br />
Blessings.</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com4tag:blogger.com,1999:blog-7802657323436811379.post-7730757227560973912012-01-09T13:18:00.003-07:002012-01-09T13:31:01.488-07:00Happy Birthday Mason and AnnaSophia!!!<div dir="ltr" style="text-align: left;" trbidi="on">December marks some significant dates for my family. It's a month full of birthdays, anniversaries, and celebrations. The most noteworthy are December 16th and December 31st. December 16th marks the birthday of Mason and Lincoln, two very special twin boys. Both boys turned 5; one celebrated here on earth, and one celebrated in Heaven. Mason is the special little boy whose heart beats inside of AnnaSophia's chest. <br />
<div class="separator" style="clear: both; text-align: center;"></div><br />
I can't begin to explain the humble thankfulness I feel to be entrusted with Mason's heart. The Hibbert family gave my little girl a second chance at life, and that is a gift beyond all measure.<br />
<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF3mgM4zs4rWeBcs_OFskN6-M1EepHch8In0O25RL0cNPhS4CJr18OLkor_WQGnFDePQ26AasKZ_14s5MPj2hnRs0azz9_gE1qcMcTokUDqBesCdRzXCdyDCJtwnfNT6KEpkDEObSfEi_T/s1600/December+2011+014.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF3mgM4zs4rWeBcs_OFskN6-M1EepHch8In0O25RL0cNPhS4CJr18OLkor_WQGnFDePQ26AasKZ_14s5MPj2hnRs0azz9_gE1qcMcTokUDqBesCdRzXCdyDCJtwnfNT6KEpkDEObSfEi_T/s320/December+2011+014.JPG" width="320" /></a></div><br />
December 31st, 2011, AnnaSophia turned 4 years old. There were times that I never thought I would see her celebrate her first birthday, let alone her fourth. She is so vibrant and healthy! People are amazed to learn that she has a heart transplant. I often hear people say that she doesn't look like a child with a heart transplant. That's when I stand on my little soap box and let the world know that this is exactly how a child with a heart transplant <em>should</em> look. A heart transplant should enable these children to live life to its fullest. These children are little miracles that have been blessed with the gift of life. <br />
<br />
There will always be things about AnnaSophia's life that will be different from a typical child. She will take medication to suppress her immune system for the rest of her life. She is doing so well that she now takes only one medication twice daily. Because of the immunosuppression, she will always be at a higher risk of getting sick. If she does get sick, she could get much sicker than a non-immune suppressed child. I will always carry the burden on my heart that she continues to be at risk for infections, rejection, transplant coronary artery disease, or cancer. These complications could become our reality, but for now, she is an amazingly healthy little girl, and I'm thankful for the gift of time that God has given me with her.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXYHSY9ieYm3qAVKMmrk8-Pja6wbtxWefwQECtEhZLsPg0lK7ZtWkija2qXiFQXZJoMmggfO7K2rWTG7FctN5BBkqhFJIl2NQm_eIi7f7SnUQLx86z8Y2k5AEdYXSZauZCOu1ave9qL90/s1600/December+2011+034.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWXYHSY9ieYm3qAVKMmrk8-Pja6wbtxWefwQECtEhZLsPg0lK7ZtWkija2qXiFQXZJoMmggfO7K2rWTG7FctN5BBkqhFJIl2NQm_eIi7f7SnUQLx86z8Y2k5AEdYXSZauZCOu1ave9qL90/s200/December+2011+034.JPG" width="149" /></a></div>If there is one thing that I have learned from the journey we have travelled (and continue to travel) is that it is so important to treasure every moment with loved ones. AnnaSophia has a knack for living life exuberantly. She loves to dance and is known to break out into a full ballet recital at the drop of a hat--at home or in public. She told me just the other day that when she grows up, she wants to be a mom and a princess and live in a castle. She loves with all her heart. She gives the biggest hugs and kisses ever. As girly as she is, she loves to wrestle. I honestly think it's that big, brave boy heart that beats inside of her that makes her as rough and tumble as she is girly. She has no fear! She's quite the daredevil, and she wants to do everything the big kids do. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJ6ulyqLpSOKlaX8HUy2e_iwhf7CDc5FKs51MHB7W90LW4sOv_yGc0Z3XYiC8ktEXzunlZKdKMUK-5twZVkrhWnNwfkwS3fp5tKF3x-AfPTFChc6bMfYjs7av9nRoHoFqkYF7nyr0kDVr/s1600/December+2011+048.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJ6ulyqLpSOKlaX8HUy2e_iwhf7CDc5FKs51MHB7W90LW4sOv_yGc0Z3XYiC8ktEXzunlZKdKMUK-5twZVkrhWnNwfkwS3fp5tKF3x-AfPTFChc6bMfYjs7av9nRoHoFqkYF7nyr0kDVr/s320/December+2011+048.JPG" width="320" /></a></div><br />
As we welcomed 2012, I'm thankful for my children and the blessing that they are to me. I try to instill a sense of thankfulness in all three of them. Life is full of hard circumstances, but we never fail to count our blessings. Our daily prayer is that as we receive blessings from the Lord, that we would be able to bless others as well.<br />
<br />
May 2012 treat you well, and may you all feel the presence of God each day.<br />
<br />
</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com2tag:blogger.com,1999:blog-7802657323436811379.post-77330340993463529612011-09-21T18:14:00.000-06:002011-09-21T18:14:12.663-06:00Big Fat Zero!!!<div dir="ltr" style="text-align: left;" trbidi="on">This is probably the only time in one's life that getting a zero is king. AnnaSophia's biopsies came back today, and she scored a zero. Yay!!!! Why is a zero a good thing you ask? The biopsies are scored on a scale of 0-5, zero means no rejection and 5 means severe rejection. AnnaSophia scored a 1 on her last biopsy, which meant that she had mild rejection brewing. The great thing is that if the rejection is mild enough, it can reverse, and the heart muscle and function can recover. <br />
<br />
AnnaSophia passed this heart cath with flying colors! She was negative for Ebstein-Barr Virus (EBV) and Cytomeglovirus (CMV). Her immune suppression levels were right where they needed to be. Her heart function and vessels looked great, and now I know that her biopsies look perfect. Everything looks better than I could've imagined. I feel very blessed to have the assurance that she is doing so well. <br />
<br />
Thank you to everyone who prayed so diligently for her. I greatly appreciate all of the prayers and concern. They mean the world to me.</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com3tag:blogger.com,1999:blog-7802657323436811379.post-13802350098632791652011-09-21T08:41:00.001-06:002011-09-21T08:51:01.295-06:00Post Cath Update<div dir="ltr" style="text-align: left;" trbidi="on">I was really sweating this cath. We've been through them--and worse--before, but I can't help getting nervous. It had been two years since her last cath. There are some things that the other tests just don't show, like transplant coronary artery disease for one. This is the ultimate test. This is the one that truly reveals how healthy her heart is.<br />
<br />
Thankfully, the news was good. Her pressures were great. Heart function was good. All of her vessels looked healthy. Her aortic arch looked great. (Big relief there.) She does have some stenosis in the vessel coming off of her aortic arch which delivers blood to her right arm. This problem is actually a result of her original heart defects. The great news is that she has adapted, and it doesn't seem to be causing her any trouble. <br />
<br />
The last results I'm waiting for are the biopsy results. The doctor seems to think that based on the healthy look of her heart yesterday, her biopsy results should come back great too. There are those rare cases in which the heart looks healthy, but the biopsies show big rejection. The key word there is RARE. <br />
<br />
After all of the talking with the doctor and our transplant coordinator, I was able to go back and see AnnaSophia. She has never come out of anesthesia well, and yesterday was no different. The nurse told me that there is a condition called "Emergence Delirium" that some people go through when waking from anesthesia. AnnaSophia was not delirious--she was totally lucid. What she was experiencing was "Emergence Anger". There is no other way to put it: She was pissed off at the world. <br />
<br />
It took 5 adults to hold her down. Talk about stressful--for her and me. She is one strong little girl. After a cath, it is required for the patient to have 4 hours of "flat time". That means the patient needs to lay flat on their back <strong><em>quietly </em></strong>for four hours so that the vessels in the groin used for access don't start bleeding. AnnaSophia was a wild one, thrashing around, attempting to cause physical harm to everyone she could. She was kicking, punching and screaming for what seemed like 30 minutes.<br />
<br />
Relief came in the form of MORPHINE. Thank God for morphine!!! Once it kicked in, she settled down and slept off her "Emergence Anger". When she woke up, she was her sweet, gentle, charming little self. The amazing thing is that she didn't pop her vessels open after all of her gurney gymnastics. We were finally able to go home after 2:00, and both of us were exhausted. <br />
<br />
She is doing much better today. Her only annoyance is the 24 hour Holter monitor that she has to wear. Today, we rest. We will wait for biopsy results, and be happy that she doesn't need another cath for two years. <br />
<br />
Words are difficult to find to express the relief and happiness I feel knowing that her heart is in great condition. There will always be a nagging thought in the back of my mind wondering, "When is she going to get sick? When will her heart fail?". But for right now, I will focus on the here and now and rejoice in her good health.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL2Te634k0NhuRLfy7gBHkDi_dZjnFF2ANndvPkBI5HAepoiK8gNetSBkAfXpv2UH0yAjRkxwZHZenDxx_e_5IqYmjMGhICw0DdJng803rx1yI7WWDLO7zV9UdB7MSurcJfhbtDTlRPqfe/s1600/post+heart+cath+2011+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL2Te634k0NhuRLfy7gBHkDi_dZjnFF2ANndvPkBI5HAepoiK8gNetSBkAfXpv2UH0yAjRkxwZHZenDxx_e_5IqYmjMGhICw0DdJng803rx1yI7WWDLO7zV9UdB7MSurcJfhbtDTlRPqfe/s320/post+heart+cath+2011+003.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg0090OVsa1Xmq1dkLUnpihOBA_vjRanSVshzVDCoTZzKHeABO4BPWvHyZujai3P91lWmRnwSVRiIW5OFX8lVq_CQEbyCqGYhwRkmdj3yT7RX5ut4nyXEJ4C8ylkSWib-jlCqF6atqU6Kv/s1600/post+heart+cath+2011+004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg0090OVsa1Xmq1dkLUnpihOBA_vjRanSVshzVDCoTZzKHeABO4BPWvHyZujai3P91lWmRnwSVRiIW5OFX8lVq_CQEbyCqGYhwRkmdj3yT7RX5ut4nyXEJ4C8ylkSWib-jlCqF6atqU6Kv/s320/post+heart+cath+2011+004.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpQynUrskUqXE-P2chj1PmzuVSJod70iohVJc_xG4SXK7k4DuC58VGHXWjuekHTGXZRLxNlLaaJBlniA1Lx8Ba6_Mc8MWTCdPDdi4FlKxA4zUpITcyQEERpo_6yRQ0qac9-4t87pdo_YK5/s1600/post+heart+cath+2011+006.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpQynUrskUqXE-P2chj1PmzuVSJod70iohVJc_xG4SXK7k4DuC58VGHXWjuekHTGXZRLxNlLaaJBlniA1Lx8Ba6_Mc8MWTCdPDdi4FlKxA4zUpITcyQEERpo_6yRQ0qac9-4t87pdo_YK5/s320/post+heart+cath+2011+006.JPG" width="320" /></a></div></div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-14142849812264529592011-09-20T09:47:00.002-06:002011-09-20T09:47:09.482-06:00AnnaSophia's Heart Cath Day 2011<div dir="ltr" style="text-align: left;" trbidi="on">
It's 9:30 am and AnnaSophia is over halfway finished with her heart cath. <br />
<br />
We arrived at 6am this morning to check in, and she was taken back about 7:45am into the cath lab. She was so excited to see all of her nurses today, and poured on the charm. She did great with her blood draw, EKG and echo...all routine for her. Unfortunately, she came unglued when we tried to give her the oral medication for anxiety. She raised quite a fuss, refused to take it, and punched me right in the face. At that point, the anesthesiologist said it wasn't worth the trouble. I agreed wholeheartedly.<br />
<br />
I carried her back to the cath lab to help get her settled. When we asked her to breathe through the mask, she decided she wanted no part of that. It took four of us to hold her down, but we succeeded. What we all realized is underneath all of that cuteness and charm is a fighter. She has survived all of the tough stuff, because she won't let this stuff beat her.<br />
<br />
So far things are looking good. Don't confuse that with perfect. Her heart will always have little leaks here and there. She might have some challenges, but it works great. She has the heart of a big, strong boy beating inside of her chest...Mason's heart.<br />
<br />
I will have more detailed updates later, and hopefully some pictures as well.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXq94eer3_KsCci1jMGztdRz6OebQtc_VgUploK0Hi1PfmGUmdSAdP6yUJVeM_8hDob-8EU_Es35Nw6OCzEPuAdk8tyWDaT_RAdo2_zBrpDypwVXcpmLXHKP8pwKEw7_zlv5UnbD6yzN9x/s1600/AS+heart+cath+005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXq94eer3_KsCci1jMGztdRz6OebQtc_VgUploK0Hi1PfmGUmdSAdP6yUJVeM_8hDob-8EU_Es35Nw6OCzEPuAdk8tyWDaT_RAdo2_zBrpDypwVXcpmLXHKP8pwKEw7_zlv5UnbD6yzN9x/s320/AS+heart+cath+005.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHYqXfGe8RNiFJPM6rJWHzA5Nc97MOpXpKcdCIF-UObZL3gN4oblF5S37yFFoXGg_6yxTHoFbUqFXfbuSwnU0pG1Jpkw27qMJqK1F5vfG4qhld7iW8ueB-eEtQWh22BWrzZtMnTjQWjK8Q/s1600/AS+heart+cath+006.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHYqXfGe8RNiFJPM6rJWHzA5Nc97MOpXpKcdCIF-UObZL3gN4oblF5S37yFFoXGg_6yxTHoFbUqFXfbuSwnU0pG1Jpkw27qMJqK1F5vfG4qhld7iW8ueB-eEtQWh22BWrzZtMnTjQWjK8Q/s320/AS+heart+cath+006.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBy132O2XkL4b5qpFZc2U_vCc1yaCmwrocD-4afTey_V7JSb6T-K5PcpU75sdMWVfZZiqHVM1Gz8Lc6DJF94TeDLqEQyB8Mh5IKV6gX4rAYsW84UHoXNR4Tmegiqp6KFW_BMpYEnKVlELC/s1600/AS+heart+cath+002.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBy132O2XkL4b5qpFZc2U_vCc1yaCmwrocD-4afTey_V7JSb6T-K5PcpU75sdMWVfZZiqHVM1Gz8Lc6DJF94TeDLqEQyB8Mh5IKV6gX4rAYsW84UHoXNR4Tmegiqp6KFW_BMpYEnKVlELC/s320/AS+heart+cath+002.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWHPHi9DC5Vhv4nPkKiK1LoNMAJvbVEdeLIWe7gfswSsR5B21gkvARwZkUMNvQv0HZLGGYQblFVtywxV35YN5163vcbyRGYcTZmY17ggCyuDiHMnfK44DLgf1vZG5LxIVpRf55n3kpYLBZ/s1600/AS+heart+cath+009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWHPHi9DC5Vhv4nPkKiK1LoNMAJvbVEdeLIWe7gfswSsR5B21gkvARwZkUMNvQv0HZLGGYQblFVtywxV35YN5163vcbyRGYcTZmY17ggCyuDiHMnfK44DLgf1vZG5LxIVpRf55n3kpYLBZ/s320/AS+heart+cath+009.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
</div>
Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com1tag:blogger.com,1999:blog-7802657323436811379.post-56721029022318453802011-01-18T16:07:00.000-07:002011-01-18T16:07:55.181-07:00Where in the World is the Heart Heroes Gallery?Each new week that I post the updated location of the American Heart Association's Heart Heroes Gallery, it's like a game of "Where in the World is Carmen Sandiego?" I should start dropping hints and see if people can find it. Chargers, Rams, Caravans....<br />
<br />
The Heart Heroes Gallery is now located at the <a href="http://www.coloradospringsdodge.com/ou/coloradosprings-dodge/">Colorado Springs Dodge Dealership</a> on the southeast corner of Woodmen Road and Austin Bluffs. The Dodge Dealership is partnering with the American Heart Association and Mended Little Hearts of Colorado Springs. Volunteers will be available to talk about the gallery, Heart Ball, Congenital Heart Defects, childhood obesity and cardiovascular health in general on Saturday, January 22, from 10am to 1pm.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com1tag:blogger.com,1999:blog-7802657323436811379.post-37287473780499055842011-01-13T13:30:00.000-07:002011-01-13T13:30:41.703-07:00January 2011 Cardiac Clinic UpdateI can't believe how far AnnaSophia has come. She used to go to clinic daily. She used to be a very sick little baby. Now, we go to Cardiac Clinic every four months. The first time I was told that we didn't need to go back to clinic for four months, honestly, I was very scared. "Are you sure??? What if I don't know that her heart is getting sick before next clinic???" All of these thoughts and more went through my mind. There was a certain degree of assurance that came from being a frequent flyer to the Children's Hospital.<br />
<br />
I still have those nagging thoughts in the back of my mind, wondering if her heart is ok. I actually look forward to clinic, so that I can be sure that she is ok. Here's an oxymoron for you: I approach clinic with eager trepidation. I am eager for her to have the tests which will show what condition her heart is in. I am eager for good news and reassurance. The trepidation I feel is knowing that there is always the possibility that her heart is not functioning as well as it should be. <br />
<br />
My motto has always been, <br />
<br />
<em><span style="font-size: large;">"Hope for the best, but prepare for the worst."</span></em> <br />
<br />
Hope paid off this time. AnnaSophia's EKG was good, her blood work came back within normal ranges, blood pressure was good, and her echo was unchanged from four months prior. Unchanged meaning she has mild mitral valve regurgitation, a little bit of a leaky aortic valve, and some narrowing of her aortic arch. Overall, AnnaSophia's heart is doing very well. She looks great! She runs around like crazy and nothing keeps her down. <br />
<br />
She is showing the world that a person can have a wonderfully productive life with a heart transplant. I am so thankful for the gift of life she was given 2 and 1/2 years ago. She wouldn't be here today, if it wasn't for the selfless gift that the Hibbert family gave my little girl. Two and 1/2 years ago, I never thought she would see her third birthday. Today, I'm resting in the thankfulness of a gift that means more than any material thing on earth. If there is one thing that you can do to make a difference, please register to become an organ donor. Click <a href="http://www.donatelife.net/"><span style="color: #0b5394;">here</span></a> for more information about organ donation.<br />
<br />
Blessings.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com1tag:blogger.com,1999:blog-7802657323436811379.post-78052317207521969872011-01-12T02:19:00.000-07:002011-01-12T02:19:57.427-07:00Penrose Library LocationHonestly, I'm having a hard time keeping up with the new locations of the Heart Heroes Gallery. It is now located at the <a href="http://www.ppld.org/penrose-library"><span style="color: #cc0000;">Penrose Library</span></a> in downtown Colorado Springs. The children's department has graciously allowed us to display the gallery where the children read and play. Saturday, we will have volunteers available to discuss children's and adult's heart health. There will be coloring pages for the children, as well as the regularly scheduled story time for the library. Come visit us and read these children's amazing stories. <br />
<br />
<em><span style="font-size: large;">Be inspired by some of the most amazing young people you will ever know.</span></em>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-76021322898811773712011-01-03T19:53:00.002-07:002011-01-03T19:57:13.591-07:00New Heart Heroes Location<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizc1ejCzYJw8vlvrnqNeTDf2GcA-tBD2JYxreSn6fw-fFxyNBGdCC0LBIfZG6ZIzccBKUC2NO9mhiosR01MtNCIDut7wDhslj10okuGi3uF8ZOWX8KU1p46nhoOXhyphenhyphenm6gSgCdErtVg5b6D/s1600/library+pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizc1ejCzYJw8vlvrnqNeTDf2GcA-tBD2JYxreSn6fw-fFxyNBGdCC0LBIfZG6ZIzccBKUC2NO9mhiosR01MtNCIDut7wDhslj10okuGi3uF8ZOWX8KU1p46nhoOXhyphenhyphenm6gSgCdErtVg5b6D/s320/library+pic.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div align="left">The American Heart Association's Heart Heroes Gallery is officially up at the <a href="http://www.ppld.org/east-library"><span style="color: #cc0000;">East Library</span></a> in Colorado Springs. Please stop by and visit these wonderful photos of some of the local kids in our community who were born with congenital heart defects. Thank you to Beth for taking this picture of our gallery moving team today. Tea and AnnaSophia, who are featured in the gallery, helped too. Our kids are such good sports, accompanying us while moving the gallery and educating the public. Saturday, January 8th, some of our volunteers will be at the library talking to people about CHDs, childhood obesity and improving our cardiovascular health.</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-59178801796293103202010-12-31T23:26:00.005-07:002011-05-27T21:47:11.715-06:00The Children in Review<div dir="ltr" style="text-align: left;" trbidi="on">I have defaulted...big time. I've been busy, overwhelmed and trying to figure out this whole single-mom-parenting thing. I haven't posted updates on AnnaSophia's blog like I should have. So, I sit here at 10:23pm, with the children tucked in their beds, me alone in mine, and I have been inspired to write an update on my children. This is a good way to end 2010, reflecting on my reasons for living.<br />
<br />
I'll start with AnnaSophia, since this blog is named after her. She was the inspiration for starting this blog. Born with severe heart defects, whisked away unexpectedly to Denver Children's Hospital when she was 9 days old, this blog was designed to keep friends and family updated on her medical condition. What a wild ride!!! Open heart surgery at 11 days old, chest closed at 13 days old, tachycardia, transfusions, medications, heart failure, PICC lines, transplant, cardiac arrest, rejection, infections, chemo, heart caths. This was a big part of her life. This defined the early years of her life, but it wasn't exclusively who she was or is. <br />
<br />
<span style="font-size: large;"><em>She is AnnaSophia, a bright and shining star.</em></span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqDXd5wdFu29EgyTNBaSKoFKGeQwDOTdcFrGW4YPLds3LVmtc0wBk76msc_tXRpNvi60T1PHfAu_-53Ma9z8Dfl626YxQ_N6UocPefmoDIi0Z7Ca0xVrCQZWWElzcMqMsQIjxnW7T9IYt5/s1600/annasophia_6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqDXd5wdFu29EgyTNBaSKoFKGeQwDOTdcFrGW4YPLds3LVmtc0wBk76msc_tXRpNvi60T1PHfAu_-53Ma9z8Dfl626YxQ_N6UocPefmoDIi0Z7Ca0xVrCQZWWElzcMqMsQIjxnW7T9IYt5/s320/annasophia_6.jpg" width="213" /></a></div>AnnaSophia smiles a lot. She gives the biggest, squeeziest hugs and kisses <em>EVER.</em> She loves to "nuggle" with me. She loves her family, especially her brother and sister. She loves princesses, and thinks she is one too. She loves animals, especially dogs. She wants to visit Cinderella's castle one day. (Baby, I think you will, so hold onto that dream.) If you ask her where her heart is, she points to her chest. When I ask her who's heart is in her chest, she replies, "Mason's heart" with a sweet, big smile and both of her hands over her chest. God love her!!! She brings such joy to my life! She is truly a miracle, and I feel so blessed to have my baby with me each day.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcbuJFSulUFm_ELPlXCwVzk-CoQ2db-HhN8xDPJI-nO6ziDcUu9h2z1uJI3giPV6ZZoMPJPBmKOxx_5Su0k-eyiiGhPQESrPKAJhznATd2Wfk3kXRX0CRE6VycYvaoJXJzhUR1pSAN91Ln/s1600/halloween+e+and+e.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcbuJFSulUFm_ELPlXCwVzk-CoQ2db-HhN8xDPJI-nO6ziDcUu9h2z1uJI3giPV6ZZoMPJPBmKOxx_5Su0k-eyiiGhPQESrPKAJhznATd2Wfk3kXRX0CRE6VycYvaoJXJzhUR1pSAN91Ln/s320/halloween+e+and+e.jpg" width="211" /></a></div>Emily is my super-sensitive, beautiful girl. She is 10 years old now. She is on her way to becoming a young lady. She can't wait for the day that she is old enough to babysit AnnaSophia. Emily loves her siblings and me as well. She has loved horses since she was old enough to talk. She loves dogs, especially Golden Retrievers and hopes to have another one sometime. She is my artist. She has amazing talent, and her drawings take my breath away. This year, Christmas was especially stressful for the children, as their dad and I are not together. I found her outside with her cousins, holding her sketch book and drawing nature pictures. To watch her was one of those precious gems-of-a-moment that will be forever burned in my mind. I love every second that my beautiful girl and I can share.<br />
<br />
Ethan is growing into an amazing young man. I don't use the term "man" lightly. He is tall and handsome. Despite his Asperger's Syndrome and challenges, he is amazing. If I could find a man half as good as my son, I would be blessed. He is smart, works hard, is devoted, loves his family and has a great sense of humor. Yes, he teases his sisters A LOT. I remind myself that he is a boy <em>and </em>a brother. It's what they do...right? He just needs someone to give it back to him big time. He has an amazing sense of right and wrong. He knows what kind of man he wants to be and seeks out inspiring examples of amazing men to emulate. God love him!!! He made the honor roll at school this year, and wowed my socks off by saying that math is his favorite subject. I think I see an engineer in the making.<br />
<br />
Life has been hard this year. I don't know what the future holds for us. This is the most uncertain year I have ever faced, but there are certain things that I cling to. I know without a doubt that my children love me. They are my reason for waking every day. I strive to be a better person and provide a good life for <em>them</em>. I work to raise awareness about Congenital Heart Defects to save my <em>daughter's</em> life. Every motivation, everything that I do, is for them. One day life will settle down and become less stressful. Until then, I hug on my children daily and thank God for the precious gifts that He's given me. I pray that 2011 will bring peace, love and stability to our lives. Until that happens, we press on with hope, and I pray that the Lord will continue to bless us and walk with us.<br />
<br />
Blessings to you.</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-79519779043798090512010-12-31T22:14:00.000-07:002010-12-31T22:14:25.810-07:00Heart Heroes Gallery UpdateThe American Heart Association's Heart Heroes Gallery is currently located at Chapel Hills Mall in the north part of Colorado Springs. We will have volunteers handing out information tomorrow, Saturday, January 1st, from 12pm to 3pm at the mall. Sunday, the gallery will move to the<a href="http://www.ppld.org/east-library"> East Library and Information Center</a>. This is one of the large branches of the Pikes Peak Library District. The gallery will be located just outside of the children's area for all to see. If you have not seen the gallery yet, I highly encourage you to take a look at it in person. It is very moving and inspiring to see these beautiful children's faces and read their stories of triumph and bravery through their fight with heart disease.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-45861813670180366452010-12-02T10:41:00.003-07:002010-12-02T10:45:09.087-07:00KKTV 11 Interview for the Heart Heroes GalleryAt the unveiling of the Heart Heroes gallery on Monday night, our local KKTV 11 news channel came to the Antler's Hotel and gave us some wonderful publicity. I post this with some trepidation, because I don't like myself on camera. Thankfully, my part is ever so small (blink and you miss me--and that's a good thing). Little Thad's picture steals the show. He has the brightest smile and biggest blue eyes. AnnaSophia's picture makes the cut too with her big big eyes and long lashes. Click <a href="http://www.kktv.com/video/?autoStart=true&topVideoCatNo=default&clipId=5336900&flvUri=&partnerclipid="><span style="color: #660000;">here</span></a> to watch the clip. Thank you KKTV 11 for helping us raise awareness in our community about congenital heart defects.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-50736633644602044422010-12-01T13:49:00.002-07:002010-12-01T14:08:35.548-07:00Heart Heroes Gallery Unveiling<img border="0" height="0" src="http://counters.gigya.com/wildfire/IMP/CXNID=2000002.0NXC/bHQ9MTI5MTIzNDE3MTE*MSZwdD*xMjkxMjM2NTM1NjQ1JnA9Mzg2MzYxJmQ9Jm49YmxvZ2dlciZnPTEmbz1mMmNkY2VkYzg5Yzk*/NGFmODY2ZjE4Y2NjMTY1YWFlMSZvZj*w.gif" style="height: 0px; visibility: hidden; width: 0px;" width="0" /><br />
<div style="text-align: center; width: 480px;"><embed height="360" src="http://w1109.photobucket.com/pbwidget.swf?pbwurl=http%3A%2F%2Fw1109.photobucket.com%2Falbums%2Fh421%2Fsmeea5%2F4bc1d853.pbw" type="application/x-shockwave-flash" width="480" wmode="transparent"><a href="http://photobucket.com/slideshows" target="_blank"><img src="http://pic.photobucket.com/slideshows/btn.gif" style="border-bottom-width: 0px; border-left-width: 0px; border-right-width: 0px; border-top-width: 0px; float: left;" /></a><a href="http://s1109.photobucket.com/albums/h421/smeea5/?action=view&current=4bc1d853.pbw" target="_blank"><img src="http://pic.photobucket.com/slideshows/btn_viewallimages.gif" style="border-bottom-width: 0px; border-left-width: 0px; border-right-width: 0px; border-top-width: 0px; float: left;" /></a></div><br />
These are a few photos from the Heart Heroes Gallery unveiling. This was a big night for all of the families involved. Members of the Passion/Education Committee for the American Heart Association's 2011 Heart Ball worked tirelessly to make this galley happen. I would like to thank Kristi Steeger of KristiAnne Photography for the beautiful photos and Dean Maurry of Shayden Designs for the poster designs. They did a phenomenal job of putting together a gallery that is memorable and hopefully will touch many, many people. <br />
<br />
I did a quick interview with our local KKTV 11 news channel about the gallery. I was asked what this gallery meant to me. Wow, how do I answer that in a 10 second clip? This gallery means A LOT to me. Not only is my precious little AnnaSophia featured in it, but this is about the big picture. Congenital Heart Defects are the #1 birth defect in the world. About 1 out of 100 babies will be born with a heart defect. It kills twice as many children every year as all childhood cancers combined. <br />
<br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">The point of this gallery is awareness.</span><br />
<br />
The more we get people thinking about Congenital Heart Defects, the more money we can raise, the more research will take place and the more lives we will save.<br />
<br />
<strong><span style="font-size: large;">AWARENESS = FUNDING = RESEARCH = A CURE!</span></strong><br />
<br />
The reality is, children like AnnaSophia die everyday because of their heart disease. I want to save my daughter's life. She is at risk for rejection, graft failure, transplant coronary artery disease, infections, cancer and a whole lot of other complications. <br />
<br />
<em><strong><span style="font-family: Georgia, "Times New Roman", serif;">It is not a question of "if" she will get sick...it's a matter of "when". </span></strong></em> <br />
<br />
My hope and prayer is that the research precedes AnnaSophia and any complications she will encounter. My hope and prayer is that my daughter will outlive me, and that many other children like her will live wonderfully long and productive lives. Please visit the gallery this week at the Antler's Hotel in downtown Colorado Springs. I will post updates of where you can find the gallery in the weeks leading up to Heart Ball.<br />
<br />
Blessings.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-51494448224620647542010-11-27T08:49:00.003-07:002010-11-28T10:11:21.484-07:00Heart Heroes Gallery Unveiling<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEnZpHOYE_p8SVqZK0nTd5OJ77DBv-2rsQRt3hy0VxNp67xRzYPTsz3izEkXjiCMX-o063ktuWEgEpWQ0uYrPdvOOkEMFHlTK8mgZmAg9SVY4b0SGJ4u0KNkdY3HfvRJc4z3St64RmdM8h/s1600/gallery+invitation.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="178" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEnZpHOYE_p8SVqZK0nTd5OJ77DBv-2rsQRt3hy0VxNp67xRzYPTsz3izEkXjiCMX-o063ktuWEgEpWQ0uYrPdvOOkEMFHlTK8mgZmAg9SVY4b0SGJ4u0KNkdY3HfvRJc4z3St64RmdM8h/s400/gallery+invitation.png" width="400" /></a></div><br />
The American Heart Association's Heart Heroes Gallery will be unveiled on Monday, November 29th at the Antler's Hotel at 4 S. Cascade Avenue, Colorado Springs, CO 80903 in downtown Colorado Springs from 4:30 to 6pm. This event is free and open to the public, and I encourage everyone to attend. <br />
<br />
The photos are absolutely beautiful! I know each and everyone of these children, and they are truly inspiring. These are children who have battled and continue to battle congenital heart disease. The amazing thing is that they do so with bright smiles, infectious laughter and amazing bravery. Looking at these children, no one would know what they have dealt with or continue to deal with each day. Some of these children may have physical limitations, but they don't let it keep them down. <br />
<br />
<em><strong><span style="font-size: large;">Life is not about what they can't do...it's about what they can do.</span></strong></em><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixLWHFCt02nts2xlwyhMfCoMe_ZbGDnAQT0qB0tOPd_zLlkUpqET9U6-hoDntnTeGtFwKOnTJrm7vOrhTGdxiG-vS0mcoQLZBSTi0ilEFMShISB5o1WEgu_ylk-evZoJSJ3oF-dTR8mQrL/s1600/gallery+invitation+2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="177" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixLWHFCt02nts2xlwyhMfCoMe_ZbGDnAQT0qB0tOPd_zLlkUpqET9U6-hoDntnTeGtFwKOnTJrm7vOrhTGdxiG-vS0mcoQLZBSTi0ilEFMShISB5o1WEgu_ylk-evZoJSJ3oF-dTR8mQrL/s400/gallery+invitation+2.png" width="400" /></a></div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-75701010071460318542010-11-15T23:13:00.000-07:002010-11-15T23:13:26.485-07:00Heart Heroes Gallery<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWMMFdG8gzCDQvl4teBbmRoOoqR3fEPiuALuvinMmBAKyHgB9vkYaYGQbcQmc80GSM87-nmA07Qnb8FxS3UEWdNE8spstuOAswBnO1EgqD5-gakR1vlgxzwvKUqPQmOWpkIr14au0pUI2d/s1600/annasophia_web2.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWMMFdG8gzCDQvl4teBbmRoOoqR3fEPiuALuvinMmBAKyHgB9vkYaYGQbcQmc80GSM87-nmA07Qnb8FxS3UEWdNE8spstuOAswBnO1EgqD5-gakR1vlgxzwvKUqPQmOWpkIr14au0pUI2d/s320/annasophia_web2.jpg" width="213" /></a></div>The American Heart Association's Heart Heroes Gallery is almost finished! This is the gallery that features 8 of our local Colorado Springs children who are battling Congenital Heart Disease. You can click <a href="http://www.csheartball.org/"><span style="background-color: white; color: #660000;">here</span></a><span style="background-color: white; color: #660000;"> </span>to see the official 2011 Heart Ball page and invitation to the unveiling of this special gallery. <br />
<br />
The ladies at the American Heart Association and the members of my Passion/Education Committee have worked very hard to make this happen. The photos are breathtaking, and <a href="http://www.kristiannephotography.blogspot.com/"><span style="color: #660000;">Kristi Steeger</span></a>, our amazing photographer, did a wonderful job capturing the beauty of our children. The official unveiling of this very special gallery will be taking place on Monday, November 29th from 4:30 to 6pm at the Antlers Hotel in downtown Colorado Springs. The event is free and open to the public, so please come and see these beautiful photos and meet the survivors in person.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-72547169060872508732010-10-04T11:22:00.000-06:002010-10-04T11:22:01.924-06:00AnnaSophia and the American Heart AssociationRecently, I have become very involved in our local Mended Little Hearts organization here in Colorado Springs. We are a group of parents who are passionate about helping other families who have been affected by congenital heart disease (CHD). The goal of our group is to plan fun events for our "CHDers", provide a support group for the parents, education about CHD's, fundraising for research and continued support to our families. It is a national organization with groups located in cities across the United States. You can click <a href="http://www.mendedhearts.org/mlh/frame-mlh.htm">here</a> for more information on Mended Little Hearts.<br />
<br />
I have also started volunteering with our local American Heart Association. With 1 out of 2 people affected by heart disease, and 1 out of 100 children born with a CHD, this seemed like a natural thing for me to do. I have become involved with the Passion/Education Committee for the 2011 Heart Ball, which will be held on February 12th, 2011. Part of what I have been working on with this committee is helping to put together the survivor gallery for this event. <br />
<br />
The survivor gallery features 7 children from our Colorado Springs community who have battled congenital heart disease. AnnaSophia is one of the children whose photo and story will be featured. This gallery will travel throughout southern Colorado to many businesses for the purpose of raising awareness about not only congenital heart disease, but also childhood obesity and childhood acquired heart disease due to lifestyle choices. Our hope is to have the gallery travelling by the first week in November. <br />
<br />
I will continue to keep everyone posted on the schedule of the gallery so that friends and family may visit it. This has been an incredible opportunity to put CHD's and acquired heart disease on people's minds. I want to educate, inspire and save lives.<br />
<br />
Kristi Steeger, our amazing photographer, did an incredible job of capturing the spirit of our CHD children. She selflessly donated her time to photograph each one of the survivor gallery children, and has worked closely with the American Heart Association to make this gallery a success. You can see a sneak peak of the photos by visiting <a href="http://www.kristiannephotography.blogspot.com/">http://www.kristiannephotography.blogspot.com/</a>.<br />
<br />
For more information on the Southern Colorado American Heart Association click <a href="http://www.heart.org/HEARTORG/Affiliate/ColoradoSprings/Colorado/Home_UCM_PMA005_AffiliatePage.jsp">here</a>.<br />
<br />
Here is a sneak peak of AnnaSophia's bio for the survivor gallery:<br />
<br />
<strong>AnnaSophia's Story</strong><br />
<br />
Congenital heart defect was something that never entered my mind until the birth of my third child. AnnaSophia Elizabeth Berry was born December 31st, 2007. It wasn't until she was 9 days old, and her oxygen requirements continued to rise, that she was diagnosed with multiple heart defects: an interrupted aortic arch, a large ventricular septal defect (VSD), an atrial septal defect (ASD) and a bicuspid aortic valve. <br />
<br />
She was rushed to Denver Children's Hospital where she underwent open heart surgery at 11 days old. My heart broke for my little newborn baby girl, and the challenges that she faced at such a young age. I didn't even know if she would survive. Most of her defects were corrected at that time, except for her bicuspid aortic valve. That surgery would have to wait till she was much older. Her little heart was so swollen that her chest had to remain open for two days. She developed junctional ectopic tachycardia after surgery, and medication was needed to control her exceptionally fast heart rate.<br />
<br />
Over time, AnnaSophia's heart started having a hard time pumping blood through her bicuspid aortic valve, and she was diagnosed with heart failure. She was seen by her cardiologist every 1 to 2 weeks, and more medications were added to help her heart function better. As the heart failure progressed, she also developed pulmonary hypertension. It was frightening and heartbreaking to see how swollen she was, due to fluid retention. Because she did not have enough blood flowing to her digestive system, she vomited most of her feedings. AnnaSophia was at risk for sudden cardiac death.<br />
<br />
At 5 months of age, she was listed for a heart transplant at Denver Children's Hospital. I was never so frightened in my entire life, as I waited and watched AnnaSophia struggle to live. Three weeks later, she received the miracle that she needed. On July 11, 2008, she underwent a heart transplant. After her surgery I was amazed at how pink she looked, but she still had challenges. She struggled with complications due to her pulmonary hypertension. The afternoon of her transplant, she went into cardiac arrest. At that moment, I felt like my heart had stopped too. The doctors saved her with life with CPR, and additional medications.<br />
<br />
She was discharged from the hospital one week after transplant, but her challenges continued. She started rejecting her new heart a few weeks later. She received medications and chemotherapy-type infusions to suppress her immune system and combat the rejection. As the rejection improved, she developed a very dangerous CMV (cytomeglovirus) infection. The virus lives dormant in her heart and can cause her issues at any time. <br />
<br />
AnnaSophia's first year of life consisted of surgeries, medications, pic lines, feeding tubes, infusions and transfusions. She had no idea how sick she really was. She smiled and cooed her way through heart failure, rejection and infections. She has an amazing strength and spirit that inspires me daily.<br />
<br />
Today, AnnaSophia is an amazing and vibrant little 2 and 1/2 year old. She is doing very well, and looking at her, no one would know that she has battled congenital heart disease and had a heart transplant. She continues to be at risk for rejection, infections and many other complications. AnnaSophia has had 12 surgical procedures in her short life. She has 31 scars on her little body, the most obvious being the zipper down the middle of her chest. They serve as constant reminders of the journey she's walked, the challenges that she still faces and the miracle that she is.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com1tag:blogger.com,1999:blog-7802657323436811379.post-54634425317625321362010-09-08T22:25:00.000-06:002010-09-08T22:25:48.883-06:00Sometimes Life Takes a DetourI know that this post comes right on the heels of my post about inspiration. I've debated many times on how to share the changes in our family, and the words have not come easily. It's a hard pill to swallow, especially for me.<br />
<br />
After 15 and 1/2 years of marriage, Steve and I are divorcing.<br />
<br />
I was warned when going through the transplant process that the divorce rate among couples with critically ill children is about 75%, but as always, I tend to be an optimist. I really never thought that would be us. Can having a critically ill child cause divorce? Maybe, but I tend to think that the high divorce rate is because stress maximizes problems that were already there.<br />
<br />
Being the left-brained nerd that I am, I turned to research to help me make sense of things. I don't know if it necessarily helped, other than to provide comfort food for that left side of my brain. I was shocked to find out that the Evangelical Christian community has the highest divorce rate among all of the faiths. Even the atheists fair better in marriage statistics. Why??? What is going on here?<br />
<br />
The answer is: I don't know. Maybe I need to do more research. <br />
<br />
That leads me to <a href="http://www.rabbittrailsanddetours.blogspot.com/">Rabbit Trails and Detours</a>, my new blog. The one thing I love to do is write. It's therapeutic. I love words. As my sister often says, "Mary likes big words." This is where the nerd part comes in again. It's not that my goal is to set myself far apart from others or make people uncomfortable. It's just that sometimes that left side of my brain gets excited and can't help spewing research, little known facts and big words. I will try to keep this to a minimum.<br />
<br />
AnnaSophia's blog will continue, but I realized that the focus of her blog is updates on the children, Congenital Heart Defect (CHD) awareness and inspiration as we walk our journey of medical challenges. <a href="http://www.rabbittrailsanddetours.blogspot.com/">Rabbit Trails and Detours</a> provides a forum for my mental meanderings that I so often find my brain taking. <br />
<br />
The reality is that every person's life journey takes detours. There is not one person I've met who can say that their life has turned out EXACTLY the way they imagined it. Maybe the destination is the same, but the path taken to get there may not be what was originally imagined. <br />
<br />
If God had sat me down and told me, "You will have three children. Your babies will be sick. The first will be on the Autism spectrum, the second will have reflux, and the third will have a broken heart. You will be raising them by yourself. You will lean on Me for everything, and your faith and trust in Me will grow. I will be here for all of your needs." <br />
<br />
I would have most likely said, "Thanks God, but that doesn't sound like fun. Can I have the easy, fun life instead? I'm not strong enough for that, and that life scares me."<br />
<br />
I've imagined God's response to me many times. I can't directly speak for Him, but I know without a doubt that He is here, He is real, and He is for us--not just my family, but <em>anyone</em> who seeks Him. <br />
<br />
Without question, life is changing for all of us. I am walking down a path that I never thought I would lay a foot on. I have worked through every emotion from shock and sadness to anger and embarrassment. I am under such a tremendous amount of stress right now, and there have been times where it was painful to take each breath. I can honestly say that I have more good days than bad now. <br />
<br />
As painful as this time has been for myself, it has been a terrifying time for my children. I'm usually able to keep them smiling, and I work very hard to make them feel loved and secure. I don't want them to <em>ever</em> think that this was their fault. One of the lessons they have unfortunately learned is that you cannot control what others do--you can only control your reaction to it, and trust in God.<br />
<br />
One thing is certain, I feel God's presence as I walk this path. I have felt as though He has been a step ahead of the children and me, taking care of us. The Lord has put amazing people in my life during this time, and I feel very thankful for my friends' and family's support. I don't know what His plan is for my children and me, but I hope that our hearts are healed and that love and joy will always be present in our home.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com4tag:blogger.com,1999:blog-7802657323436811379.post-34108268273021466532010-09-02T22:29:00.000-06:002010-09-02T22:29:42.565-06:00Cardiac Clinic Day<div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwI9Lf1iAHOjK6kMRp9-d-6PETNFjsjx_s43KdMBeoBjsHY1N1n2qsxD3ENn6OyIFZtiERdkKnRaGhs314jvTIeA6y7-uWV615gr2yq8tBRXfZY03rr_o_48yRsVx23jmp5i9dLh10fFls/s1600/Aug+2010+012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwI9Lf1iAHOjK6kMRp9-d-6PETNFjsjx_s43KdMBeoBjsHY1N1n2qsxD3ENn6OyIFZtiERdkKnRaGhs314jvTIeA6y7-uWV615gr2yq8tBRXfZY03rr_o_48yRsVx23jmp5i9dLh10fFls/s320/Aug+2010+012.JPG" /></a></div>AnnaSophia was absolutely full of charm today. These are the days that make a parent proud. We started our day very early (in the car by 5:30am) for her routine Cardiac Clinic visit. She has been doing so well, that we are able to go to clinic once every four months. She continues to get her immune suppression levels checked every two months. This is such a change from going to Denver Children's Hospital two and three times a week when we first came home post-transplant.<br />
<br />
She was so polite and engaged today, giving smiles and hugs to all of our favorite nurses, sonographers and doctors. She started her morning in the lab, having her blood drawn. As usual, she never cries and is such a champ. I can't say the same for the blood pressures. It doesn't matter how many ways you tell her that she's just getting her arm hugged, she is convinced that it is torture. She sailed through her echo and EKG without any complaints. This is such a change from a year ago when she would scream her head off while the sonographers tried to get pictures of her aortic arch.<br />
<br />
The news was good today. Her immune suppression levels are right where they are supposed to be. Her CBC was great, her EKG was fine, and her echo was consistent with last time. I can't say that it was perfect, because I don't know that she will ever have a perfect echo, but it was stable for her. The reality is that she has minor regurgitation of her mitral valve, and she has a leaky aortic valve. It hasn't gotten any worse from her last echo, and that is positive. She has shown some narrowing of her superior vena cava and aortic arch, but this was consistent with her last echo.<br />
<br />
AnnaSophia will have her immune suppression levels checked in another two months. As long as she continues to do well and doesn't show any signs of rejection, she will not need to be seen in the cardiac clinic for another four months. Overall, she is fantastic! No one looking at her would know that she had a heart transplant. She is absolutely amazing and truly a blessing. <br />
<br />
Thank you to all of my friends who have been praying for a good check up. Prayers were answered.Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-11129588803128504142010-08-17T05:26:00.030-06:002010-08-20T19:12:29.465-06:00Inspiration<div style="text-align: center;"></div><br />
It's a word that I have reflected on a lot lately. I seek out people who inspire me. There are amazing people in this world who make us want to be better people. These are the people I want to learn from. I have been stunned by people who have approached me to say that my family has been an inspiration to them. I have had others tell me that <em>I</em> am an inspiration to them. Really??? Do they know how absolutely inadequate and broken I feel most days? They find <em>me</em> to be an inspiration???<br />
<br />
The online Miriam-Webster dictionary defines inspiration as:<br />
<br />
<strong><em>The action or power of moving the intellect or emotions.</em></strong><br />
<br />
I have seen people interviewed on tv that have moved my intellect, making me want to be a better person. I have felt moved emotionally as I am in awe of other's stories of triumph as they overcome difficult circumstances. That's when it dawned on me...the people who inpsire me most are not the ones who have lived perfect lives. I'm not inspired by people who have made all the right choices in life, but have never been faced with hardship. Hardship and difficult circumstances can define us--either for good or bad.<br />
<br />
It's the people who are handed difficult circumstances, who rise above the tragedy and the hardship that are most inspiring to me. Life is tough. Life can beat us up. Life doesn't always turn out the way we would like it to. What is inspiring is when people live lives of joy and love in spite of the challenges. Inspiration comes from people who refuse to let the difficult things in life keep them down. These people take difficult circumstances and use them for good. They change lives and make differences.<br />
<br />
Many times in my Christian walk, I've been told that God doesn't give us more than we can handle. I've often laughed and said that God surely has a higher opinion of me than I have of myself. Angela Brock is a divorced mom of four children; her youngest was born with a Congenital Heart Defect. She started a Mended Little Hearts group in the city where she lives, and works tirelessly to raise awareness about CHD's and support other families who have children with heart disease. She recently said in an interview on the Today Show,<br />
<br />
<strong><em>"You never know how strong you are, until being strong is your only choice."</em></strong><br />
<br />
The reality is that heroes choose to be strong. There are many people out there faced with difficulty who don't choose to be strong. There are those who are afraid, or think that the circumstances they face are too challenging,<br />
<br />
<strong><em>and they walk away...</em></strong><br />
<br />
Its out of our brokeness that inspiration happens. Inspiring people face challenges head on with determination and love.<br />
<br />
The New Century Bible says it best:<br />
<br />
<strong><em>We know that in everything God works for the good of those who love him. They are the people he called, because that was his plan. Romans 8:28</em></strong><br />
<br />
We live in a fallen world. Bad things happen. Real heroes, inspiring people, choose to rise to the occasion and change lives. Maybe it's just the life of their child, maybe it's the lives of many. <strong><em>Be inspired and be inspiring! </em></strong><br />
<br />
I still don't know how people can see me as inspiring, but if that's so, I hope that the people who are touched by my life will be inspired enough to influence other's in their circle. Pay it forward, and make your life count.<br />
<br />
I have felt led to share a video of a father who is absolutely the most inspiring man I've ever seen. He is an amazing father! He demonstrates in a very real, very physical way, the love he has for his son. The first time I saw this video, I sobbed. He is a flesh and blood example of our Heavenly Father's love for us. Enjoy the clip about Team Hoyt. (Don't forget to mute the music on the playlist at the bottom of the page so that it doesn't interfere with the video.)<br />
<br />
Blessings.<br />
<img height="77" src="http://www.blogger.com/img/video_object.png" style="filter: alpha(opacity=30); left: 52px; mozopacity: 0.3; opacity: 0.3; position: absolute; top: 1602px; visibility: hidden;" width="96" /> <br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><object height="344" style="clear: left; float: left;" width="425"><param name="movie" value="http://www.youtube.com/v/6aTgBjhBy-k&hl=en_US&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed
src="http://www.youtube.com/v/6aTgBjhBy-k&hl=en_US&fs=1" width="425"
height="344" allowscriptaccess="never" allowfullscreen="true"
wmode="transparent" type="application/x-shockwave-flash"></embed></object></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com0tag:blogger.com,1999:blog-7802657323436811379.post-90121171298267974962010-08-12T18:55:00.002-06:002010-08-15T23:25:23.065-06:00Welcome to Holland<p><object style="BACKGROUND-IMAGE: url(http://i3.ytimg.com/vi/RqGQjoTn2xY/hqdefault.jpg)" width="480" height="295"><param name="movie" value="http://www.youtube.com/v/RqGQjoTn2xY?fs=1&hl=en_US"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/RqGQjoTn2xY?fs=1&hl=en_US" width="480" height="295" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash"></embed></object></p><p></p><p><span style="color:#000066;">I first read this poem in the packet of information that Denver Children's Hospital gave me when AnnaSophia was admitted for her first open heart surgery. Things were so uncertain at that time. The doctors told us that with her constellation of defects (interrupted aortic arch, VSD, ASD, bicuspid aortic valve), she was over 95% likely to have DiGeorge Syndrome, and could have learning diabilities associated with that. She could likely have a stroke from the surgery, have the nerves to her vocal chords damaged from the arch repair, or have major mental retardation due to the lack of blood/oxygen from bypass and surgery. </span></p><p><span style="color:#000066;">I know that they have to prepare us for the worst, but this was so much information to be dumped in my lap. I looked down at that beautiful baby in my arms and knew that I would always love her no matter what. It didn't matter what challenges lay ahead for her, she was a gift, and I would always love her as such. </span></p><p><span style="color:#000066;">A month later, Ethan was diagnosed with Asperger's Syndrome. What??? I think I've heard of that, but I'm not sure what it is or what this means. Autism??? Really??? Me being the Research Queen, I started reading everything I could on Autism and Asperger's Syndrome. It explained a lot, really. Without having an official diagnosis, I knew that Ethan was different. I knew that he didn't easily fit in with the rest of the world, but that was ok. We adapted. We aimed for success.</span></p><p><span style="color:#000066;">As time moved on, AnnaSophia showed absolutely no signs of learning disability. She recovered well, and genetic tests showed that she was one of the rare kids with her constellation of defects who did not have DiGeorge Syndrome. Even though I breathed a sigh of relief, I didn't love her more or less because of it. Ethan got the help he needed, and I strived to understand him better. I was able to make changes in our home that helped with his success.</span></p><p><span style="color:#000066;">Today, both of them are doing really well, in spite of challenges and setbacks. They are amazing! The analogy that is painted in the poem Welcome to Holland is so beautiful. I planned on going one place, but life took us somewhere else. It's not bad, just different. Once you embrace the different place where you are, you can enjoy the beauty that is there. It's not bad, just different. </span></p><p><span style="color:#000066;">Please enjoy the video, and don't forget to mute the music at the bottom of the page so that it doesn't interfere with the video.</span></p><p><span style="color:#000066;">Blessings.</span></p>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com3tag:blogger.com,1999:blog-7802657323436811379.post-63107254058183260932010-07-20T17:15:00.002-06:002010-07-20T17:23:42.026-06:00Before My Heart Stops by Paul Cardall<p><object style="BACKGROUND-IMAGE: url(http://i4.ytimg.com/vi/GfWFCdfuHIU/hqdefault.jpg)" width="480" height="295"><param name="movie" value="http://www.youtube.com/v/GfWFCdfuHIU&hl=en_US&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/GfWFCdfuHIU&hl=en_US&fs=1" width="480" height="295" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash"></embed></object></p><p>This is an absolutely inspiring video promoting Paul Cardall's new book, Before My Heart Stops. Just this short clip brings me to tears everytime as I remember my own daughter's heart transplant journey. My perspective on life has changed so much since watching my daughter teeter on the brink of death many times. I view life differently, and I cherish every moment with my children like never before. They are my life, my reason for living, and I never want to feel like I have any regrets. I want to know that even in my brokeness as a human being, that I have been the best mother I can be. There is no greater calling than to be a parent--to love our children the way that the Lord loves us. We are their example of what a loving God is here on earth. Each day I fail miserably, but I will continue to press on, love them, lead them and let them know that they can always count on me. </p>Maryhttp://www.blogger.com/profile/11428656302929838473noreply@blogger.com2