tag:blogger.com,1999:blog-56657939595555247762024-02-19T03:20:13.408-08:00Mending Mylah's HeartstringsLara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.comBlogger132125tag:blogger.com,1999:blog-5665793959555524776.post-41873747396076910022018-07-26T15:46:00.000-07:002019-06-05T10:31:28.238-07:00MRI <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="text-align: left;">Today Mylah had an MRI to map out what we will do in the near future for her heart health. Currently her left ventricle is slightly enlarged due to the fact that the oxygenated blood in her heart is regurgitating back into that space. Today's sedated procedure will give Dr. Galindo a better picture of what will happen with her heart journey. </span></div>
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<span style="text-align: left;">We got to the hospital super early today, got her registered and checked in and then we waited and waited and waited some more. Mylah was so very patient as we were in line to have her taken back for her procedure. She played in the playroom as long as she could stand it and then watched some shows on the iPad for a bit. </span></div>
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Isn't her gown the cutest?! Made by yours truly (Check the shop for all sizes!)</div>
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Finally after a four hour wait it was Mylah's turn to head back to the MRI room. She was so brave and laid so still. They moved her to the bed that they would be using for the procedure and then they sedated her. It is never easy for me to watch that happen. I have a really hard time and I know I suffer from PTSD regarding all her other procedures and surgeries. </div>
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The actual MRI didn't last as long as we thought it might. It took about an hour. We had gotten lunch and then waited in the waiting room to hear something. he did really well and we were so happy to see her right after. </div>
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She has a really hard time coming out of anesthesia, but she took it like a champ. I am always so proud of her and how well she does with all of this. </div>
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She rested for about an hour, tried to have some popsicle and ice and come out of it. </div>
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We headed home as soon as she recovered enough and she slept most of the way. For now, we wait to meet with Dr. Galindo in a few weeks to go over her MRI results and make a plan for her heart. </div>
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Lara H.http://www.blogger.com/profile/10307906278884765702noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-67107226520898532632016-01-31T14:00:00.000-08:002016-01-31T14:00:12.941-08:00Heart Month<div dir="ltr" style="text-align: left;" trbidi="on">
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The posts here are few and far between, and I apologize for that. We have just been so blessed to see nothing but amazing progress in Mylah's health and growth. She has amazed us all with her continued healthy heart function. We are just so very thankful.<br />
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We are here in 2016 and I can hardly believe Mylah will celebrate her 4th Heart Day and her 5th Birthday! It all seems so surreal as I remember back to the day, the exact moment, the heart wrenching minutes after her diagnosis when I just knew we'd loose our baby and never have a chance to know her. How very wrong I was and how grateful I am she beat the odds.</div>
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With Heart Month starting tomorrow and CHD Awareness Week beginning shortly after that, I just wanted to post a little about Mylah and how she's doing. </div>
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Mylah is now 4 years old. She wears 3T to 4T clothes and size 8 shoes. She loves her blankie and still sucks her thumb. She attends Preschool and loves it and is sooo very smart! She can write her name and she remembers and retains so much information! She can sing a song or recite a story her teacher shared the very same afternoon she heard them! She's spunky, silly, brave, determined, and sports an amazing thick set of gorgeous dark brown locks that I have to brush and do something with everyday! She's just so sweet and growing too fast! </div>
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When she was smaller and younger Neil and I often discussed her ability to bring love into our home and how she shows others a way to love that we've never seen. She's so tender hearted and I know she's that way for a purpose. She was and there to teach us a deeper more meaningful way to love and live. She shows her tenderness mostly when watching movies. The Good Dinosaur is a great example. A couple of the scenes in the movie are deeply moving and she relayed to me multiple times, with tear filled eyes, her feelings of sadness and emotions. Most 4 year olds are not that receptive to emotions, yet she somehow feels a deeper connection to the Spirit and she's so in tune with our Heavenly Father and she is able to really feel moments like that.</div>
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As we begin our month long celebration of our amazing little girl and all things heart, we also keep close to our hearts and in our thoughts all those brave Heart Warriors gone too soon. There are no words to describe how deeply those losses are felt in the Heart community and especially for me as a Heart Mom. Our thoughts and prayers of peace and comfort are with each family. </div>
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It is my hope that as you begin to celebrate the month of love that you remember how truly blessed we all are to be able to have our loved ones here. Hold them close, cherish them, spend a few more minutes with them, learn from them, and most of all just love them<br />
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Happy Heart Month! </div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-59405853636042431882015-02-07T09:18:00.004-08:002015-02-07T09:18:54.952-08:00Wear Red Day 2015<div style="text-align: center;">
We celebrated the beginning of CHD Awareness Week and Heart Month with Wear Red Day yesterday! I start posting and asking family and friends to wear red for Mylah a few days before. Somehow I am always blown by the response and thankful to everyone who supports our sweet Heart Girl. </div>
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We are truly blessed.</div>
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We love you all! Happy Wear Red Day!! </div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-40435716897003493912014-08-30T22:11:00.000-07:002015-01-12T22:12:18.463-08:00Heart Check<div class="separator" style="clear: both; color: #666666; font-family: 'century gothic', arial, sans-serif; font-size: small; line-height: 20.7999992370605px; text-align: center;">
We headed to town this past weekend to enjoy a stay-cation and take Mylah to her 6 month check up at Children's Heart Center.</div>
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It's always a little nerve wracking to take her to an appointment,</div>
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but we know that she's in Heavenly Father's hands and that given her current health and how active she is, she's doing pretty good. </div>
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EKG with crazy hair!!</div>
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Or "stickers" as she calls it. </div>
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She was so calm for her ECHO and so brave. </div>
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For now her heart is about the same. Functioning as it did post op two years ago. </div>
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Her pulmonary valve pressure hasn't gone up so that's always a good sign. They don't want to see that pressure rise or it would mean her valve is failing.</div>
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<br />We are always so proud of Mylah's bravery and the little fighter she is. </div>
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She's healthy and doing so well.<br />Words cannot express the feelings of gratitude we have to our Heavenly Father for bring sweet Mylah so far. She continues to teach us to love without hesitation and to savor each and every moment of each and every day. </div>
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It was a happy heart news day for sure! :) </div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-28530907434038984182014-04-25T22:08:00.000-07:002015-01-12T22:09:10.745-08:00Her 2nd Heart Day <div style="color: #666666; font-family: 'century gothic', arial, sans-serif; font-size: small; line-height: 20.7999992370605px; text-align: center;">
Mylah's full heart repair was on April 25th 2012.</div>
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Today it's been two years. </div>
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Two years of laughter, fun, smiles, milestones, love, silliness, healing, and joy.</div>
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Two years ago our lives were a nightmare, we never would have known the happiness of raising our sweet Mylah, if it werent' for amazing doctors, nurses and an amazing surgeon. </div>
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We thank our Heavenly Father each year as we watch her heart function and keep her alive.</div>
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To celebrate Mylah's 2nd Heart Day, I made a heart shaped cake and we added two candles for each year.</div>
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She kept asking if it was her "dur-bay" (birthday).</div>
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In a way, it is. </div>
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Happy 2nd Heart Day Mylah!</div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-44787032579136323882014-03-03T19:29:00.001-08:002014-03-03T19:30:18.023-08:006 Month Cardiology Check Up<div style="text-align: center;">
We have to drive to town two and a half hours away for Mylah's Cardiology check ups.<br />
It's a long drive, but so worth it raise our kids in this lovely small town. :) </div>
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We headed that way this past Friday for her visit with Dr. Thomas. </div>
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Mylah was weighed and measured and then had her EKG done. She slightly panicked when they started sticking the tabs all over her, but I just told her they were stickers. She was still nervous as they attached each wire. After a minute she laid still and calm for the whole test.</div>
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Next we were off to have an ECHO done. We unfortunately waited a ridiculously long 45 minutes in the room for Dr. Thomas, but we survived.</div>
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Mylah climbed on the exam table like a champ and laid so still. Again she was nervous but did well.</div>
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Dr. Thomas was able to get much better views of her heart this time around. I guess being six month older than the last time helps a bit. Last time she fought us to lay there. She laid there patiently while he examined her heart.</div>
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The results? The gradient/pressure in her pulmonary valve is still the same as it was six months ago. Her right ventricle isn't enlarged and that is a good thing. As long as those two things don't increase dramatically we are on the right path to continue watching her grow and thrive. Many times when pulmonary valves are patched like hers is, it causes the right ventricle to enlarge. Luckily that isn't happening. </div>
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I've had many people ask me if this means no more surgeries for our sweet Mylah. The honest answer is no. </div>
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For the rest of Mylah's life we will always be watching her, being aware of how her body is responding to her repaired heart. Her heart will never ever be functioning at 100%. It was "broken" and then "fixed" but will never be fully healed.</div>
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Though she is a happy and growing toddler, the reality of her heart failing her is very real. We don't focus on this reality, but sometimes it sneaks up on me, I panic and then I take a second to cherish the small moments we have with her and the cute little opinionated girl she's becoming.</div>
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Does it scare us that she could take a turn for the worst? Yes it does. Do we worry that a small cold could send her to the hospital? Yes. But that is the reality of living with a child who has a CHD. Their hearts are broken, repaired, but never fully healed. It's the life we've been given, the life she lives and we just endure. </div>
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We are so proud of Mylah and her enduring spirit. We've learned to love watching her survive her CHD. She's a fighter and also a very stubborn two year old. We learn something from her everyday and pray that her story will continue to spread awareness about CHDs. </div>
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She's doing well and staying healthy. We will cherish every second with our precious Heart Girl! </div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-27278919146624136512014-02-11T00:00:00.000-08:002014-02-11T00:00:03.190-08:00CHD Awareness Week 2014 - Heart Warrior Braxton<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYh4r4VJ8r7d2p78LAo_7KxCy8b3e2jZZ0gPJiwDw-SrBCep9XzydS5xTAYtthNYty9jdQDbcdXEEUdYBX8mSndBqDNzSZQsnrlw9868TJi484yggEiwx-aH7aYo2V8RpuXmDCwMXhV40/s1600/Braxton+1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYh4r4VJ8r7d2p78LAo_7KxCy8b3e2jZZ0gPJiwDw-SrBCep9XzydS5xTAYtthNYty9jdQDbcdXEEUdYBX8mSndBqDNzSZQsnrlw9868TJi484yggEiwx-aH7aYo2V8RpuXmDCwMXhV40/s1600/Braxton+1.JPG" height="240" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg99VS55qx020Jps6l-NpNvZLFivBwjDaLx57ytNvsFLa6hU59eSqyEUGnZ6Op04NQg1JZTCy3cIPC-hButojy6rSh48TdNMtsIOeMD80j4W5jpF3lNLOM0tTal3OQIEwqgecrSkUEITT4/s1600/Braxton+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg99VS55qx020Jps6l-NpNvZLFivBwjDaLx57ytNvsFLa6hU59eSqyEUGnZ6Op04NQg1JZTCy3cIPC-hButojy6rSh48TdNMtsIOeMD80j4W5jpF3lNLOM0tTal3OQIEwqgecrSkUEITT4/s1600/Braxton+2.jpg" height="320" width="235" /></a></div>
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CHD Diagnosis: Transposition of the Great Arteries, minor ASD, minor VSD<br />
<br /><div>
Braxton's Story: Braxton was born on December 27, 2012 at 1:55 a.m. He passed all his tests,
screens, and had a bath. During our bonding time, in the mother baby recovery
room, a nurse arrived to take him for vitals and shots. This was about 6 hours
after he was born. She returned a bit later but without Braxton. She said he was
turning blue and that his oxygen level was dropping. She said they put him on
oxygen, were going to do some tests and an echo, because they believed he had a
heart defect. She also mentioned that a pediatric cardiologist from the local
Children's Hospital was on their way to evaluate him. I felt like this was the
meanest joke around or she had mixed up the babies because I was unaware of him
having any problems.</div>
<br />The pediatric cardiologist said he needed to be
rushed to Children's Mercy (our local children's hospital) for a balloon
catheter to be done so that he could receive the oxygen he needed until he was
strong enough for his surgery.<br /><br />I spent the first 48 hours away from my
newborn baby, family, and friends because I wanted everyone with him, supporting
him in his time of need. It was not the introduction to parenthood I expected
for me or my husband.<br /><br />Braxton had his open heart surgery on January 7,
2013. It was such a bittersweet day. He was hopefully getting a second chance at
life but it required an arterial switch of his arteries. His surgery went
beautifully as planned. However, during his surgery his left vocal cord was
clipped, paralyzing it. The doctors were unaware of this until almost a week an
a half later. I had to give up nursing and we had to thicken his
formula.<br /><br />Everything was going great and he was showing great recovery
until the night/early morning of January 19th. I was holding Braxton, trying to
calm him down because he wanted to nurse and not drink his bottle. He was
screaming and crying so much it broke my heart. Then, all of a sudden he
twitched, his cries and screams stopped immediately, and he went from color to
blue. I looked at his monitors and they read flat line and 0. I screamed for my
husband to get help. The nurse ended up calling a code blue over the hospital.
Braxton had refluxed so much of his thickened formula up and without a working
left vocal cord, he choked on the formula. It had filled his lungs and caused
him to have cardiac arrest, from basically drowning. The doctors did everything
they could with nothing working. All my husband and I could do was listen and
cry because there was nothing we could do to help our newborn baby. Finally,
after what seemed like an eternity, the doctor shot some epinephrine into his
right leg bone marrow. It worked!<br /><br />From there, Braxton ended up spending
another 2 weeks in the hospital because he had to have a Gtube placed and had a
fundoplication operation done to prevent him from refluxing and choking
again.<br /><br />He finally was able to go home on January 31st, 2013.<br />36 days
in the hospital, 1 OHS, 3 other surgeries, 1 cardiac arrest episode, and finally
we were being allowed to go home.<br /><br />Since leaving the hospital, Braxton has
done nothing but proved all doctors wrong. His vocal cord is healing, he is able
to eat and drink without thickeners, he is developmental on track or advanced,
and continues to thrive.<br /><br />It has been quite the journey but am grateful
God chose us to stand by his side and support him through this :)<br />Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com1tag:blogger.com,1999:blog-5665793959555524776.post-16964599268113835532014-02-10T00:00:00.000-08:002014-02-10T00:00:05.250-08:00CHD Awareness Week - Heart Warrior Lila<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwSALLSL9TpfptB0B-jPuASbrL6uYqsuTHfreuIUwkdLUygfB-xsef16c6tI_xSMjaKGjGS3F59uyA3s1IssPD28-gG21vj2akwTOPsb_uikd8v0uD-edxpCzoJ9FPtiHsKFZTee4xioI/s1600/1526247_1450826861804247_647371961_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwSALLSL9TpfptB0B-jPuASbrL6uYqsuTHfreuIUwkdLUygfB-xsef16c6tI_xSMjaKGjGS3F59uyA3s1IssPD28-gG21vj2akwTOPsb_uikd8v0uD-edxpCzoJ9FPtiHsKFZTee4xioI/s1600/1526247_1450826861804247_647371961_n.jpg" height="320" width="320" /></a></div>
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CHD Diagnosis: Tetralogy of Fallot with Pulmonary Atresia, VSD and MAPCAS<br />
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Lila's Facebook Page: Lila's Heart Journey <a href="https://www.google.com/url?q=https%3A%2F%2Fwww.facebook.com%2F%23!%2Flilasheartjourney&sa=D&sntz=1&usg=AFQjCNFRfNWThICF8gQ4B0Ish_N9BsiPCQ" target="_blank">https://www.facebook.com/#!/<wbr></wbr>lilasheartjourney</a><br />
<br />
Lila's Story: For the first ten days of Lila's life we thought she was a perfectly
health newborn baby just like our older two children. Around 8 days old I
noticed that Lila was breathing rapidly and I could feel her heart race when she
was simply resting on my shoulder. She had already been to the doctor twice, so
I didn't suspect it was much of anything, but I called our doctor just so I
could bring her so he could tell me she was ok and I was worrying over nothing.
However, as soon as I got to the doctor he listened to her heart with a
stethoscope and told me I needed to get her to the hospital right away. Right
away? Why? I thought he was just going to tell me my baby was fine and I was
crazy for bringing her in. So, off to the hospital Lila and I go. They did an
echocardiogram which pretty much told the doctors what they needed
to know, but they needed a heart catherization to confirm her
diagnosis. However, the only pediatric cardiologist
that did the heart caths was out of state for a few days so we had to sit and
worry, cry and pray over the next several days as we waited for her heart cath.
Her heart cath confirmed that Lila was born with a rare congenital heart defect.
At our local children's hospital we were told that Lila would need 3-4 initial
surgeries just to correct everything wrong with her heart and then once her
heart was fully repaired she would need additional open heart surgeries as her
artificial pulmonary valve needed to be replaced when
it became too small. We simply could not even imagine our tiny newborn baby
going through one open heart surgery let alone four. We were scared, nervous and
had no idea what this journey looked like. My first question was where will she
have surgery and who is the best, most experienced surgeon to do it? Everyone at
the hospital kept telling us how amazing the head surgeon was at our hospital. I
was simply over whelmed at the time and could hardly process the fact that my
baby had a broken heart so I put all of my trust in them. When we met with this
surgeon he told us that Lila would require multiple open heart surgeries to
repair her broken heart. He told us that there was only one other surgeon that
would attempt to repair her heart in one surgery, but he said that it was a low
success rate and he did not recommend it. We trusted
his advice and said we would proceed with his plan. So at 3 months old Lila had
her first heart surgery. She went into surgery early
that morning and after many hours was finally brought to the ICU. Minutes after
arriving in the ICU the surgeons said her stats were dropping and they needed to
figure out why. However, the cardiologist that needed to do the heart cath was
off work that day! They, of course, called him in an we waited for him to arrive
at the hospital to do a heart cath. They determined the problem and Lila headed
back into the OR for another surgery that same day. After many more hours Lila
finally arrived back into the ICU late that evening. She was in
very critical condition, but after a three week ICU stay we were finally about
to bring her home. We were supposed to wait a few months and then go back for
her next heart surgery. Just two months after her heart surgeries she got RSV
and pneumonia which landed us back in the ICU for 3 more weeks. After we finally
recovered from that nearly fatal case of RSV we were able to come home. Lila
continued to get sick and got this virus or that virus all winter long. We lived
in the hospital on and off through the winter and spring. With so many illnesses
her second planned surgery kept getting postponed and
finally the surgeon tat did her first surgery retired and was not going to be
around to do her next surgery. So I started researching and trying to
figure out who the best surgeon was for Lila's next
surgery. Long story short we discovered there was one surgeon that specialized
in Lila's heart defect. And he would do her full repair in ONE surgery not many
like we were told. This was the most wonderful news we had heard. I was both
happy yet upset that our local doctors never mentioned this surgeon who is truly
the one and only surgeon in the U.S. that specializes in Lila's heart defect. Of
course, we still dreaded another surgery, of course we
did, but to hear that her heart could be fixed without going through multiple
surgeries was such an immense relief. Her records were sent to Dr. Frank Hanley
in California and surgery was scheduled for June. We flew all the way to
California in June and Lila has yet another virus and surgery was cancelled. So,
we came all the way back home and rescheduled surgery for August. Lila's 15 hour
surgery in August gave her a fully repaired heart. It was a long and huge
surgery, but it was so worth not having to go through 2 or 3 more surgeries. She
had a 3 month recovery in the CVICU, but after 3 long months we were finally
able to come home. She is 18 months old now and doing great! Lila will have to
have more open heart surgeries because part of her heart defect is the missing
pulmonary valve. Lila has a 17 mm human valve in her
heart now, but once that valve becomes too small for her heart she will have to
have it replaced with a larger valve. She is currently doing amazing and will go
back for a heart cath in about 7 months. Our lives have forever been changed
because of congenital heart disease. Surgery is not a cure. Lila will always
have congenital heart disease.Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-79115870022679888742014-02-09T00:00:00.000-08:002014-02-09T00:00:10.234-08:00CHD Awareness Week - Heart Warrior Camden<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN20VWwLVhQCJ6qBfmbaXo-Dg7v4NYtuDUon_JzjrvdLNB4y8Zz7sUqBB2ygn2py1Bs_am1wkBDkSLrlfuYIk-cdVKlrRihxXI2FGorfvs5Go9fjAdZxGQc_BaGR8pVhaCeCtL_jsbPeQ/s1600/camden+2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN20VWwLVhQCJ6qBfmbaXo-Dg7v4NYtuDUon_JzjrvdLNB4y8Zz7sUqBB2ygn2py1Bs_am1wkBDkSLrlfuYIk-cdVKlrRihxXI2FGorfvs5Go9fjAdZxGQc_BaGR8pVhaCeCtL_jsbPeQ/s1600/camden+2.jpeg" height="320" width="239" /></a></div>
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CHD Diagnosis: CoA, BAV, ASD<br />
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Camden's Blog: <a href="http://www.google.com/url?q=http%3A%2F%2Fwww.caringbridge.org%2Fvisit%2Fcamdenwhitehead&sa=D&sntz=1&usg=AFQjCNEsB84vQDEX6T_vf5D4Hpfn54K53Q" target="_blank">http://www.<wbr></wbr>caringbridge.org/visit/<wbr></wbr>camdenwhitehead</a><br />
<br />
Camden's Story:<br />
<span style="font-family: Georgia, Times New Roman, serif;">Camden was born via C-section Monday, June 11th
after no progression was made after being in labor for 24 hours. We heard
afterward that the cord was wrapped around his neck and his heart rate would
drop with every contraction so thankfully we went with the C-section as
it would've ended up emergency anyways. He was perfect and an angel! We came
home Thursday June 14th and enjoyed spending time as a family outside of the
hospital and adjusting to having our little man home. Jeff's parents left Friday
am (July 15) when we took Camden to his first dr appt for a weight/jaundice
check. We then ran some errands and my family came over in the afternoon to get
their snuggles/love in. :) Around 12 we noticed Cam was doing this little
grunting with every breath (super cute and we even made fun of it a
little). <a href="" style="color: #222222; font-size: 13px;">At
2:30</a><span style="font-size: 13px;"> I noticed
his breathing was quite rapid and I was starting to get a little nervous. A call
was made to the pediatrician and we had an appt </span><a href="" style="color: #222222; font-size: 13px;">at
6:20</a><span style="font-size: 13px;"> - just
nervous new parents we thought. What we didn't know was that we were actually
going to save our baby's life. We took him to the ped and he immediately said
that something wasn't right and thought we needed to be admitted to Children's
in Neenah (at this point they were suspecting an infection). He made a quick
call to talk to the dr there and they agreed. His respiratory rate was in the
80-90 range and they should've been around 50-60. We arrived around 7 (my
parents met us there) and that was the last time I held him. We got to the PICU
and none of their equipment was working so they decided to transfer us down to
the NICU. We got down there around </span><a href="" style="color: #222222; font-size: 13px;">7:45</a> and were in for a HUGE whirlwind. They ran a ton of
blood tests as he had a low body temp and that usually means infection and they
started Camden on some heavy duty antibiotics because they were sure he had
sepsis or something. He was super sick but we didn't really know that at the
time. Then they tried to get his blood pressure and pulse on his legs with no
luck so the Neonatalogist said to order an echo to take a closer look at his
heart. That showed an abnormality of his Aorta. At this point he was almost in
shock and his heart was barely pumping. They started him on a medication to open
the aorta and get his heart back up to the normal beating/rhythm and determined
to send him to Milwaukee Children's by helicopter. The flight team arrived at 3
am Saturday (July 16th) and they had to transfer him over to their
gurney/isolette and were wheeling my baby away around 415. Scariest moment of my
life. The dr said if we hadn't taken him in when we did, he would've passed away
in just a few hours. My sister had showed up around 11 and stayed until Camden
was wheeled away to the helicopter. Mom and dad said they'd go to Milwaukee with
us so home we went to throw a bag together and head out. We were on the road by
530am and arrived at children's around 730. We were able to see Camden right
away which was nice but still scary. He was hooked up to lots of tubes and
monitors with lots of beeping going on. They did an echo of his heart which
agreed with the one from Neenah and diagnosed him with Coarctation of the Aorta
(CoA), Atrial Septal Defect (ASD) and Bicuspid Aortic Valve (BAV), basically
narrowing of the aorta which was causing very little blood flow to the lower
extremities. We knew surgery was in our future and that afternoon were told it
would be the next AM (Father's Day). We were able to touch Cam, kiss him and
talk to him whenever we wanted. He was stable and doing well at this point other
than his heart. The next morning we awoke and were at the hospital by 7 for
an <a href="" style="color: #222222; font-size: 13px;">8am</a><span style="font-size: 13px;"> surgery time. The
anesthesiologist came and talked to us and that's when I broke down. MY 6 day
old baby who I should be home spending snuggle time with was going into heart
surgery. I was devastated to say the least. They wheeled him away
around </span><a href="" style="color: #222222; font-size: 13px;">8:20</a><span style="font-size: 13px;"> and the waiting began...
845 we rec'd an update that the PICC line was placed and they were ready to
begin the operation. 1010 we recd another update that they were reviewing the
repair area and were ready to complete it. 1045 the dr came out and said they
were finished. We were so relieved that it went as well as it did and that the
dr was very pleased with how it went and didn't take near as long as they
thought. They were finishing stitching him up and then we'd be able to give him
a quick kiss in the hallway before he went back to his room. He truly was a
fighter. The day following surgery (June 18) he had the chest tube, head iv and
catheter removed. Wednesday (June 20) he had the ventilator removed, his
arterial line pulled and was strictly on oxygen. He then was able to start his
feeds. He had a hard time with those and we weren't able to be moved up to the
step down unit until 8 days after surgery. June 25 (Monday) he moved to the step
down unit to just focus on his feeding. He was finally tube free and had the
oxygen removed on Thursday (June 28). He was a champion and we got to go home
(FINALLY) on Friday (June 29)!! We are so proud of our little fighter and
miracle and we thank God daily for him!! <3</span></span>Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-60171181895956723262014-02-08T00:00:00.000-08:002014-02-08T00:00:03.478-08:00CHD Awareness Week 2014 - Heart Warrior Angel Jr.CHD Diagnosis: Tricuspid Atresia VSD ASD<br />
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Angel's Story:<br />
Born June 30 2013<br />
At birth they thought it was a harmless murmur, so
they told to see his peditrican and that when they refer us to TCH to do a echo
that where they found he had Tricuspid Atresia VSD ASD Agu. 18 2013 he was
hospitalized that day to observe him. They told us he didnt need the first
surgery he was doin good with out it that they want him wait to get the glen at
4months. Time past he was hospitalized twice for low oxygen level. They just
gave meds on the third time we went for his cardiologist check up they relizes
his oxygen level were too low so they told us this time he gone need surgery. I
knew something wasnt right he was crying all night and not feeding well. He was
too little for glen he was getting a extra surgery.He wasnt doing good that
night so he was rushed to surgery that morning at 6am Sept.11.13 he got S/P BT
SHUNT. His first open heart surgery .. He recoverd well 6 days later he was
already breastfeeding :) got to home a almost 2weeks later:) . On Dec. 30 13 he
had his Glen he had a emergency surgery again . We had went for an MRI on the
Dec. 26 but realize he was to blue and his Sat. Were going low so they kept us
in CVICU until his glen surgery he recovered quick but his blood pressure was
too high so we had to watch for that he doing better growing and talking alot
:) for a 7 month old he one brave strong heart warrior:) it been crazy
rollercoaster but I wouldn't change it.. we still have one more surgery but that
when he 3-5years old so for now we be enjoying Jr. at home watching him grow!<br />
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- His mother Mary Donaciano</div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-22976309006467985082014-02-07T00:00:00.000-08:002014-02-07T00:00:10.911-08:00CHD Awareness Week 2014 - Heart Warrior Cal<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4HuE8g5XgKboGVjJHA0spjcP2sxZ2St39zFr9YMolhy2RvIUCTgqrBCt_9RX9k9Yf3HX25J6-TXvGn3PaEwGXKgCbiZ5alI_O2_93stNgL_-80NrySKpPEYvr9GCRV6P9rgBprPdfC4E/s1600/Cal.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4HuE8g5XgKboGVjJHA0spjcP2sxZ2St39zFr9YMolhy2RvIUCTgqrBCt_9RX9k9Yf3HX25J6-TXvGn3PaEwGXKgCbiZ5alI_O2_93stNgL_-80NrySKpPEYvr9GCRV6P9rgBprPdfC4E/s1600/Cal.JPG" height="320" width="320" /></a></div>
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CHD Diagnosis: ASD, VSD, Three leaking valves and aorta dilation<div>
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Cal's Blog: <a href="http://www.google.com/url?q=http%3A%2F%2Fwww.heartwarriorcal.blogspot.com%2F&sa=D&sntz=1&usg=AFQjCNGogbLSk_1HoohtHQXWBbY3bNs1RA" target="_blank">http://www.heartwarriorcal.<wbr></wbr>blogspot.com/</a><br /><div>
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Cal's Story: </div>
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My pregnancy with Cal always checked out well and on February 16th, our bundle
of joy arrived. We were sent home two days later with a perfect baby boy.
Although, things never seemed to add up. I made excuses at first, thinking it
was due to the fact he was a week early. Thinking maybe because he was slightly
jaundice. I worried myself sick since he slept ALL the time and his heart was
always beating rapidly. One day he wouldn't eat, so I finally made the call. Our
Pediatrician then directed us to go straight to the Emergancy Room. Again,
everything checked out well and we were sent home. I made an appt. with a
Cardiologist just to be sure. That was the day our world was changed forever.
Cal's diagnosis: ASD and VSD. The VSD was so close to his aortic valve that it
prolasped the valve and regurgitation started. The valve was becoming
permanantly damaged so he under went open heart surgery at 5 months of age to
repair the holes in hopes the valve would self-correct. Currently his mitral and
tricuspid valves leak along with his aortic valve. As long as the leakage
doesn't get worse he will be monitored yearly. His aorta is enlarged and is also
being monitored. There is always a chance for future procedures but we are
keeping our spirits up! He is the most amazing, inspiring, and strongest man I
have ever met He absolutely melts my heart. I can't wait to see what the future
holds for him. </div>
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- Cheryl Smith</div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-88721182617868447572014-02-04T20:56:00.002-08:002014-02-04T20:56:35.985-08:00CHD Awareness Week<div style="text-align: center;">
CHD Awareness Week starts this Friday! I'm sooo excited to spread awareness by sharing stories and photos of other Heart Warriors here on Mylah's blog! </div>
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Interested in sharing your child's story? </div>
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Email me at themendedheartshop{at}gmail{dot}com.</div>
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This past year has been an amazing one for Mylah. She's reached so many milestones and taken great strides in becoming a very smart little toddler. She's bright, funny, silly, and beautiful and we just love her.</div>
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Too many times, in the early part of her life, we wondered if she would stay with us. </div>
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We are thankful she has.</div>
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We are thankful we are able to celebrate another year with her, another CHD Awareness Week and another Heart Walk! February is truly Heart Month for our family and we thank you for reading her blog and sharing her story and keeping udated on her progress. </div>
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Happy Heart Month! Stay tuned for the first of many Heart Warrior Stories coming this weekend!</div>
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-Lara</div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-12004757261943845142014-01-26T23:00:00.001-08:002014-01-26T23:00:02.538-08:00The LatestI can hardly believe 2014 is here and I haven't blogged here for so long! I used to get so frustrated following other Heart Family blogs and seeing them not posting! I'm sure some readers are annoyed at me for this. I'm sorry. Life has been busy! So I'll do a little recap:<div><br></div><div>Mylah turned 2 in October! She had a small Minnie Mouse party with her siblings and Grandparents, and of course Mommy and Daddy. She was spoiled with clothes, toys, and Minnie Mouse stuff. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMo-B9iQhP8KLplren12zIvhkOj_-w-J8k-p8BIsa_KgwREJF0oIJaY0UBRYa6UR-wV9pz1zI-1B56adTvuPfVlinj-_xjxERiRYeasz3Q91n8ZTTYFeAvk0t8hCjhnlBxgJmQnVrePqM/s640/blogger-image-84983833.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMo-B9iQhP8KLplren12zIvhkOj_-w-J8k-p8BIsa_KgwREJF0oIJaY0UBRYa6UR-wV9pz1zI-1B56adTvuPfVlinj-_xjxERiRYeasz3Q91n8ZTTYFeAvk0t8hCjhnlBxgJmQnVrePqM/s640/blogger-image-84983833.jpg"></a></div></div><div><br></div><div>We can't believe it's been 2 years since she was diagnosed with TOF. She's fought an amazing battle and continues to do thrive! <br><div><br></div><div>Mylah became a Big Sister in November. She's an amazing sister and loves her baby brother a lot! She's gentle and sweet to him and loves to help out when I ask her to!</div><div><br></div><div>Mylah and Baby Brantzen</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbKE8-Y7POQVoV8MzBMTtjeZQAynTLVJ8RbeA43mbYnS0HOIM6fhdGEs8OKGNKY7oe7OkfIqnxCYD_zXL2eKASj0-9KXRhfQmSSRUKuJkAq3Yk3Gl8f61-eZAOlXwbtqsSKEDwABEVvlY/s640/blogger-image--122798172.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbKE8-Y7POQVoV8MzBMTtjeZQAynTLVJ8RbeA43mbYnS0HOIM6fhdGEs8OKGNKY7oe7OkfIqnxCYD_zXL2eKASj0-9KXRhfQmSSRUKuJkAq3Yk3Gl8f61-eZAOlXwbtqsSKEDwABEVvlY/s640/blogger-image--122798172.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Thanks to Mylah, Brantzen was able to have an EKG, Chest X-ray and ECHO done just before he left the hospital. He is heart healthy and we are so blessed. We are thankful to Mylah for helping create awareness and helping us to know the importance id having your baby's heart checked! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Mylah celebrated her third Christmas and it was much more magical this year for her! She understood all about Santa and gifts and the precious Baby Jesus. She was full of excitement and her favorite part was tearing open gifts! </div></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL-8nm9K7U-hmHuk381eRxtAdvk1PSO3OVI9_WuJVtoGoft22ELE-1ddJJKGc1CrbMP7CxHPr9CcbZklFY_0YZcxcNgwvUlX2gLMUefEBxICn0wcLIwf5n23R8z47lsQMpBZqZZFvRFHM/s640/blogger-image-460648824.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL-8nm9K7U-hmHuk381eRxtAdvk1PSO3OVI9_WuJVtoGoft22ELE-1ddJJKGc1CrbMP7CxHPr9CcbZklFY_0YZcxcNgwvUlX2gLMUefEBxICn0wcLIwf5n23R8z47lsQMpBZqZZFvRFHM/s640/blogger-image-460648824.jpg"></a></div><div class="separator" style="clear: both;">She received the cutest Doc McStuffins doctor kit and loves it. She had a wonderful Christmas!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Mylah is in the beginning stages of potty training and is one stubborn gal. She loves to go on the big girl potty, but forgets to tell me throughout the day that she has to go. We are getting there, very slowly! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_xdUljybV99KTlUGtH7u5mkfpevH9oZ7RiSTuwmHZ1rkTtDlaEsvJhgPxhMyc3J5270raso0YfSmGdOrNEQtR1cCWRnzJWPLewju0bvA7DvGPeSIQhn_pYKQdQWMQ9gQG1PVbby6-SL4/s640/blogger-image-2014251493.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_xdUljybV99KTlUGtH7u5mkfpevH9oZ7RiSTuwmHZ1rkTtDlaEsvJhgPxhMyc3J5270raso0YfSmGdOrNEQtR1cCWRnzJWPLewju0bvA7DvGPeSIQhn_pYKQdQWMQ9gQG1PVbby6-SL4/s640/blogger-image-2014251493.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Mylah got a small bike for her birthday. She's learning to ride it but can't quite pedal. She'll get there, but for now she loves to scoot around on it with her feet! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Next month is our family's third year participating in our local Children's Heart Foundations Heart Walk. We are soo excited for Team Mylah to walk again! We are busily preparing! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Mylah also has a cardiology appointment next month and we are praying all is well. </div>She's very healthy and doing great, I'm sure things will be fine! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are truly blessed by this beautiful girl. I'll try to be more consistent with updates! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqTM2-2ZADrmCuGV4z4d7LFRdHZJ6HAGnKeQcfwKdhlusix_j326wUur95tOPrGjJIy62b4Tc06E6G0SXHLJUpxwAsDTtXRW7C42QJkNfZ6U37JMsHdILPB253W7vPrq0zuZz8oEO6040/s640/blogger-image-228832800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqTM2-2ZADrmCuGV4z4d7LFRdHZJ6HAGnKeQcfwKdhlusix_j326wUur95tOPrGjJIy62b4Tc06E6G0SXHLJUpxwAsDTtXRW7C42QJkNfZ6U37JMsHdILPB253W7vPrq0zuZz8oEO6040/s640/blogger-image-228832800.jpg"></a></div><br></div>Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-17342718468068900662013-08-30T09:06:00.000-07:002013-08-31T09:07:35.399-07:00Cardiology Check Up!<div style="text-align: center;">
Mylah had her Cardiologist check up today. She hasn't been back since February, so it was time. </div>
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We made the two and a half hour trek to the city as a family. It's always a long drive, but today the kids were ansty and a little crazy! We survived somehow.</div>
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Upon arrival Mylah played and smiled and said Hi to everyone. I couldn't help but watch her and feel so tremendously grateful for her and her continued health. She is one amazing girl!</div>
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They took her back to weigh her and get her length. She started to get nervous but did pretty well. Then it was EKG time and I had to sit and hold her. She's at the age where she won't lay down for just any reason. She managed the "sticker" test with flying colors! </div>
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We waited a few more minutes for Dr. Thomas and then took her back for her ECHO. She again became really nervous, but eventually laid down and let him scan her heart. It looked beautiful and is functioning well.</div>
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Dr. Thomas says that the gradient level in her pulmonary valve is about a 25% and that us a little higher than last time, but in the range he'd like. It's leaking more than before but that's to be expected, given the way it was patched in surgery. Other than that, her heart is functioning as it should and her O2 Saturations are at 98%. He doesn't want to see her for six more months.</div>
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We are grateful, blessed and I overwhelmed with love for our CHD Warrior. Her little heart continues to function and keep her alive and well. For that we are thankful!</div>
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We did a little shopping after the appointment, stopped by our old house to check it out, and then made the drive back home! The day was long, but a major success! </div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-21759677888497784012013-08-19T20:54:00.000-07:002013-08-19T20:54:02.603-07:00It's been a while...<div style="text-align: center;">
Our computer decided to go on the fritz again! That's kind of my excuse for not blogging, but another one is I've been dedicated to our family blog and keeping up on it. And truthfully Mylah is doing so well these days that I don't have much to write! She's growing into the cutest little toddler and I'm so thankful.</div>
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Mylah is 22 months old now, 16 months post op and doing wonderfully! She has such a happiness for life and is an example and reminder to me of the miracles that I've seen since her birth.</div>
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Mylah is going to be a big sister to a healthy heart baby brother in November. She will tell me where "baby bluh-low" is in my tummy and loves babies, so I know she will love him!</div>
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Mylah has started potty training. Today was rough, long and tiring (at 27 weeks pregnant) but I refuse to give up! She is so smart and ready for this, it will just take a few more days!</div>
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Mylah talks and sings, dances and twirls, runs and falls. She's active and super busy. She's curious and silly. I can't get enough of our sweet girl.</div>
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She has a check up with her Cardiologist this Friday. It's been six months since her last ECHO and EKG, and somehow every time these appointments come up, I dread them. I just wait for some bad news, but I am sure things will be ok, I just err on the side of caution I guess. I will be sure to post an update on the doctor visit.</div>
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Mylah is such an amazing little girl. I cherish every moment with her. I am thankful for the hard times that have brought us to this wonderful time in her life - watching her grow and thrive.</div>
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Here's a recent picture of our sweetheart, we just love our precious Heart Girl! I will be sure to post after Friday's appointment!</div>
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<br />Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-60190513646698587262013-07-20T03:41:00.001-07:002013-07-20T03:41:40.437-07:00This LifeGoing on almost two years since Mylah's diagnosis, it's sometimes easy for me to forget that our lives were turned upside down then. Anticipating the birth of Mylah's baby brother makes it all come back to me. Though he is heart healthy and doing really well, I still remember the feelings of anxiety and fear as we tried to comprehend the road ahead of us and the fight out little girl would endure.<div><br></div><div>Daily I am reminded how blessed we are to have Mylah here. Other heart Families who's children have her exact heart defect, haven't been so lucky. It's hard for me to read of their pain and not want to help. It's "this life", Heart Mom/Heart Family life that's made me more empathetic and sympathetic to those enduring their first days of diagnosis and pending surgeries. I am ever grateful for this life and the lessons it's taught me. I am full of heartache as precious Heart Warriors pass away, but also celebrate the miraculous life of those who have survived.</div><div><br></div><div>I have been reading a blog lately of a tiny precious girl named Capri. Born with Ebsteins Anomaly and also recently diagnosed with severe Pulmonary Stenosis, she's fighting for her life as I write this. For so many reasons, I have felt connected to this sweet girl and her Mom and family. 1) She's their third child and was born with a CHD. 2) She's a precious little girl Heart Warrior like Mylah. 3) Her Mom writes posts so similar to exactly what I felt and endured. </div><div><br></div><div>I can't help but want to reach out and do something. I am praying with all I have for this sweet girl. </div><div><br></div><div>Living now, after enduring so much of "this life" it's made my perspective change and increased my attitude of gratitude. How thankful I am for Mylah's continued health and growth. But I will always be fighting for, praying for, and supporting other Heart Families who are just beginning this journey! </div><div><br></div><div>Pray and keep up with Capri's progress on their family blog: <span style="font-family: '.HelveticaNeueUI'; font-size: 15px; line-height: 19px; white-space: nowrap; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">http://warefamily2013.blogspot.com</span></div><div><span style="font-family: '.HelveticaNeueUI'; font-size: 15px; line-height: 19px; white-space: nowrap; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></span></div><div><span style="font-family: '.HelveticaNeueUI'; font-size: 15px; line-height: 19px; white-space: nowrap; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">Hugs and love to you Kendra and to your precious family and sweet Capri!!</span></div><div><br></div><div><br></div>Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-86732278255614506512013-04-01T19:05:00.002-07:002013-04-01T19:05:42.337-07:0018 Months Old!<div style="text-align: center;">
Our precious girl is 18 months old today!</div>
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Two heart surgeries, weeks of recovery, and many milestones later, our girl is growing into a beautiful, silly, busy toddler!</div>
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Here's a little about our girl:</div>
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♥ She weighs 23 pounds.</div>
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♥ She is 31 inches tall.</div>
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♥ She says Mama, Dada, Ryee, Dah-yin, Ball, Kitty, Bock-Bock, No, Shooz, Bah-Bah, Bath, Up, Mess, More, Peeze, Eat, Dink, Uh-oh, Hot, Nigh-Nigh, Bye, and All None (All Done). <br />
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♥ She loves to follow her brother and sister around and do whatever they do.<br />
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♥ She is so busy and loves to make messes!<br />
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♥ She is kind of a picky eater. She loves bananas, goldfish, graham crackers, yogurt, broccoli, string cheese, beans, cucumbers, pretzels, edemame, and mandarin oranges.</div>
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♥ She loves babies, she is quite the little Mommy, she rocks them, feeds them and cuddles them.</div>
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♥ She loves shoes, she has to have them on as early as she can in the day! </div>
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♥ She loves Minnie Mouse, she calls her Mit Mouh, it's the cutest!</div>
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♥ She still takes a bottle, we are working on breaking that habit. </div>
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♥ She is sassy and doesn't like being bossed. She'll give you the what for if it's necessary!</div>
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♥ She loves music and dances her little heart out to a good tune!</div>
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♥ She loves to pretend she's a puppy, it's so funny. She will crawl around on all fours looking for items to bring me in her mouth.</div>
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♥ She loves the word Yay. She says it anytime she's happy or excited about something.</div>
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♥ She is a climber! No large/high up object is too hard for her to scale.</div>
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♥ She went to her first day of nursery two weeks ago and loved it! She didn't even cry!</div>
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Yesterday was not so good. She screamed and wouldn't stay. Hopefully things get better for her!</div>
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♥ She is almost one year post op and growing so well. Her heart is functioning as it should and she is growing nicely. We are so proud of our Heart Warrior!</div>
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♥ She still sleeps in a crib and will until I say she's done. It's nice not having to worry about her getting up at night or climbing out!</div>
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♥ She wears size 4 diapers and size 12, 18-24 month clothes. She wears size 5 shoes and is still a skinny minny!</div>
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♥ She has the longest hair, we are getting ready to even it out and rid her of her mullet. I love that I can curl it! These pictures are some of the first I have with it curled. </div>
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♥ She can tell you where her eyes, nose, mouth, teeth, ears and hairbow are. Yes, her hairbow. Thanks to me, she knows the name of it and where it is on her head! LOL.</div>
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We are so blessed to have this precious girl in our lives. We thank Heavenly Father everyday for her! She is healthy, growing, learning and fast becoming the cutest little toddler ever! </div>
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Happy 18 months Mylah Lei! We love you! </div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-85961955415096321572013-03-15T19:01:00.001-07:002013-03-15T19:07:13.426-07:00Living<br />
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Today I took Mylah to the park. I watched her run, climb, play and laugh. I looked at my precious girl and my heart was filled with love and gratitude to my Heavenly Father for sending her to us. She has helped to teach us to be thankful for the little moments we spend with her.</div>
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Today a fellow Heart Mom had her baby. Remember me talking about Staci in <a href="http://www.mendingmylahsheartstrings.blogspot.com/2012/11/an-understanding.html">this post</a>? Well sweet Finleigh (severe HLHS) was born today. She's pink, living, breathing, teaching, absolutely adorable and making her parents so happy. They don't know how long she will live, they are taking her home to spend as much precious time with their daugther as they can before she passes. They have chosen to cherish the moments they will have with her and to remember all the good she brought into the world.</div>
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As I watched Mylah today I thought of Finleigh. She won't get to play at the park, she won't get to feel the warm sun, the cool breeze and laugh and smile. I am saddened that Staci and Danny won't experience similar moments like this with Finleigh. No parent should loose one child to a CHD, let alone too. There are no words to describe how badly I wish they weren't hurting.</div>
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My heart aches for Staci, Danny and sweet Finleigh and I pray that Heavenly Father will grant them tender mercies during their time together. I pray they feel the sweet peace she brings to them and that they will know of a surety, that bringing her home is the best thing for her. </div>
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I am so thankful for my living, breathing little girl. I am thankful for her functioning heart and the healing hands of her surgeon. I am thankful for the precious little moments in her life that have helped me to feel empathy for those who suffer the loss of their heart babies. </div>
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Please pray for Finleigh and her family. Pray that her passing will be peaceful, comfortable and in the loving hands of her parents.</div>
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<span style="font-size: x-small;">**Read Staci's blog <a href="http://bridger-smith.blogspot.com/">HERE</a>.**</span></div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-30216551132794943102013-02-24T21:46:00.000-08:002013-02-24T21:46:25.786-08:00CHF Heart Walk 2013<div style="text-align: center;">
Yesterday we attended the 10th annual Walk With the Heart of a Child put on by our local Children's Heart Foundation. It was our family's second time attending.<br />
Just like last year, this year was unforgettable and tons of fun!</div>
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This year we went all out. We ordered shirts from Neil's Uncle Cal. He owns a business in Utah and we were grateful to have him and his daughter Amber help us get these done. I designed the front of the shirts and they just printed them on white shirts for everyone. They even were kind enough to do just one shirt that said "Heart Warrior Mylah" for our precious girl!<br />
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The shirt had Team Mylah on the top and her <a href="http://www.mendingmylahsheartstrings.blogspot.com/" target="_blank">heart logo</a> in the middle<br />
with CHF Heart Walk 2013 on the bottom.<br />
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We also ordered a custom banner from a local print shop.<br />
I designed this as well and it turned out amazing! </div>
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Here are our nieces Bella and Hannah helping Rylee carry the banner, they were so cute leading our team in the walk.<br />
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I am so grateful to those who are willing to help us and support our family in creating awareness about CHD's and encouraging Mylah in her fight against TOF.<br />
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Here is our whole Team, we had a wonderful turn out!<br />
{Back row, L to R: Wade, Steve, Kyle, Burton, Neil.<br />
Second Row: Kim, Jessica, Margaret Ann, Geri, Hailee, MaryAnn, Mylah, and me.<br />
Third Row: Jonathan, Carson, Mason, Austin, Jakob<br />
Bottom Row: Bella, Hannah, Dallin, Rylee}</div>
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We began the day with a quick Jamba Juice/Starbucks breakfast, taking pictures with the various characters who show up for the walk, and dancing our hearts out to Gangnam Style! </div>
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After pictures and fun, we lined up to begin the walk. Children's Heart Foundation showed a video about Camp Mend A Heart. It was a cute video. Only children with heart problems attend this camp along with support from Camp Counselors. The camp is actually in a small town like ours only a little bit away from us! Mylah will be able to attend when she is seven! We can't wait for her to experience this and create lasting friendships with kids who suffer from similar heart defects. </div>
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The countdown to the walk began and my heart was overwhelmed with pride. With lots of cheering, smiles, and laughter we stared our walk in honor of Mylah and all the other Heart Children suffering from heart defects! I am always so close to tears when I participate in these walks. My daughter is a Heart Hero, she's taught us more than we could ever imagine learning from such a small precious girl, and we are grateful to watch her grow and thrive and to have her here. Too many families were walking without their hereos. I honestly could have cried the whole time. </div>
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Probably my most favorite part of the whole walk was seeing Mylah being carried by her Uncles, Aunts and Grandparents. They all love her so much, and if it weren't for them, we couldn't have made it through her two surgeries. They are and were such an amazing support to our family! </div>
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Mylah and her Uncle Wade (Neil's older brother) </div>
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Mylah and her Uncle Kyle (Neil's oldest brother) </div>
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Mylah and Aunt Jessica (Wade's wife) </div>
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{Side note: This photo ended up being used on the Children's Heart Foundation's Facebook Page!!} </div>
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Nothing brings me more joy than to see Mylah enjoying the walk too! She loved all the characters, music, and seeing all the sights around the mall.</div>
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She did spend a few minutes in her stroller making silly faces! </div>
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The walk didn't take too long, afterwards we gather at the staging area to hear the winners of the different prizes and raffles. Our lucky nephew Mason won a Ninetendo 3DS gift set! It was fun to see his family win a prize. We have never known anyone who won anything!</div>
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We also took a few pictures of our individual team members and Mylah. Kyle and Geri had to leave early and so did our friend Kim and her son Jonathan. We were sad that we missed taking a picture of them with Mylah! </div>
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{Papa and Grandma H.}<br />
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{Jakob, Mylah, Jessica, Wade, Mason and Hannah}</div>
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{Grandpa and Grandma C. - Mylah was a little grumpy, so this was the best picture we got with them!}</div>
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The walk was a success, we can't wait for next year!</div>
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Thank you to everyone who donated to Team Mylah and those who came and walked with us. You will never know how much it means to our family. I am so thankful to watch Mylah grow, she is here thanks to her amazing Cardiologist - Dr. Thomas and her amazing surgeon - Dr. Ciccolo. They keep her healthy, happy and growing. We are blessed beyond words! </div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-15444807648826913422013-02-12T05:00:00.000-08:002013-02-12T05:00:07.620-08:00CHD Awareness Week - Story #6: Heart Warrior Cayson<div style="text-align: center;">
This family is also special to us. They are a family who lives in the same town we do! We love Cayson and are grateful to see him growing and thriving. I am blessed to be good friends with his Tameran, his Mom, and am grateful she chose to share his story. Here's a bit about Heart Warrior Cayson:</div>
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Cayson is our third child. He was born in Cedar City Utah November 13th, 2002, after a long hard labor. They almost took him C section because his cord was wrapped around his neck. I finally was able to have him normally. After 2 healthy children we took it for granted that he would be healthy too. But after the pediatrician came in to check him out in the hospital, they wanted to do a echo in the hospital because they detected a heart murmur. We still weren't too worried about it. And they said they would call us with the results. When they called they said everything was ok. So we breathed a sigh of relief for a few days. But he was such a fussy baby, and he wouldn't nurse, and acted like he was in pain all the time. I knew something else was wrong, and kept taking him back to the doctor. The doctor thought I was over reacting, and I overheard him telling his nurse this one time. But mothers intuition told me to have him to check his heart one more time. So he said ok, and I'll never forget the look on his face. He realized he had not read the first echocardiogram right, and had made a Big mistake. He got us an appt up at Primary Children's hospital that same week! The cardiologist asked us if we were cousins,we said NO, and he said if not then because of our sons specific heart condition (supra valvular aortic stenosis) that he has Williams Syndrome. Williams Syndrome is a chromosomal defect where he is missing part or all of his 7th chromosome. They all have similar facial features, and it effects their mental function, and they are musically inclined, most of them are small, and they have "talk show host" personalities, they are very endearing children. He has been a joy to us! The health problems are worrisome ,because missing his chromosome effects the elastin in his body which makes his arteries tough, and as he grows they get smaller. He has many stenosed arteries going to many parts of his body. He has so many I wont name them all. The most severely stenosed artery is the descending aorta which is the long artery that goes through your stomach. And his renal artery which is the one going to his kidneys which in turn gives him high blood pressure, and could affect his kidney function at some point. The doctors say he has so many stenosis' that operations to put stents to open all of his arteries would not work, because he has too many. They see him every 6 months, and we are taking it a day at a time monitoring his blood pressure, and he is on 3 blood pressure medicines. About a year ago he was lethargic, and couldn't function, so we took him to the hospital, and after about a week in intensive care. They put a stent in to help open and return blood flow going to his brain. It was a success! He has been great since then! And a month after the surgery he went on a Make a Wish trip to Disneyland which was a highlight of our families lives. We love our Cayson, and feel blessed for every day that he spends with our family. We know his congenital heart disease will make his live shorter than we would like. But we are just grateful Heavenl<span></span>y Father entrusted this angel in our care for as long as we have him.</div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-65075515357465636582013-02-11T05:00:00.000-08:002013-02-11T09:24:16.811-08:00CHD Awareness Week - Story #5: Heart Warrior Lydia<div style="text-align: center;">
This post is particularly special because Neil and I met Lydia and her parents in the hospital after Mylah's second surgery. Britney and I have stayed in contact and kept close after meeting. It's been fun to watch eachother's children grow and to have become fast friends. Lydia and Mylah also share the same miracle working Heart surgeon - Dr. Ciccolo. </div>
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We are blessed to know this wonderful family!</div>
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Here is sweet Lydia's story: </div>
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My baby girl Lydia came into this world with quite a scare! It was only one short<br />
hour from when my water broke to her arrival. Things progressed too quickly for<br />
the doctor or an anesthesiologist to arrive. This left me with the nurse working to<br />
deliver my baby. When the cord was wrapped too tightly around her neck, the nurse<br />
had to reach in and clamp off the cord while my husband Jaren assisted to cut it<br />
all while she was still trapped inside the birth canal! Finally, she emerged and was<br />
totally blue and lifeless. This bad delivery would ironically, turn out to be the first<br />
of many miracles we experienced with our Lydia leading us to the discovery of her<br />
heart condition.</div>
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The nurses tried for several minutes to get her breathing. It seemed like forever,<br />
but those few minutes of dread turned to joy when Lydia began to cry. She was all<br />
blue from the delivery, so the neonatal doctor came and checked her. After being<br />
checked, we were told everything was good and that she was just blue from bruising<br />
with a fast delivery. Jaren wasn’t satisfied and kept asking about her coloring, and<br />
everyone said again, the neonatal doc passed her off and it’s just bruising. Our next<br />
miracle came after my husband held her all night and observed her coloring as it<br />
would slightly change then return. He felt it was an oxygen issue and insisted that<br />
the Pediatrician take her to test her oxygen. Sure enough there was a problem with<br />
Lydia only having 81% oxygen. She was admitted to the NICU 15 min. later.</div>
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From there they discovered she had pulmonary hypertension, and her heart<br />
condition wasn’t found until after the third echo. Even then the doctors said<br />
they almost missed it. She has TAPVR to the Coronary Sinus or Total Anomaly<br />
Pulmonary Venous Return to the Coronary Sinus. This means that the four veins<br />
that should hook to her left Atrium were hooked to the coronary sinus and pumping<br />
deoxygenated blood through her heart. The only thing that was sustaining her was<br />
a tiny hole in her septum that baby’s hearts have in utero that hadn't closed yet.<br />
This allowed the blood to shunt over and mix with enough oxygen to help her get<br />
by. Eventually, this hole in the septum of her atrial wall would close leaving her in<br />
an emergency situation that creates problems like permanent damage, or death,<br />
as all deoxygenated blood would be pumping throughout. The surgeon said she<br />
is a miracle and that her heart problem usually goes undetected until there is an<br />
obstruction or major problems with the baby! In fact he told us that she's the second<br />
baby he's had that got pre-diagnosed before there was an obstruction, or before the<br />
baby got really sick. Her heart defect is extremely hard to catch because the heart<br />
compensates helping the baby get by. The veins are very tiny and posterior and hard<br />
to see on the echo, and when you listen to the heart it doesn't manifest a murmur!<br />
We can now thank my traumatic delivery for bringing it to the surface, yet another<br />
miracle!!</div>
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The surgeon Dr. Mike Ciccolo was amazing and fixed her heart a better way than<br />
how they used to a few years ago. Normally, all the veins would have to be clipped<br />
and re-sewn on and as she grows and she would need multiple surgeries. Instead,<br />
he closed the atrial hole, and created a hole through the coronary sinus to the right<br />
atrium so that her heart can still get oxygenated blood even though her heart flow<br />
is different from ours. With this type of surgery she shouldn't need future surgeries.<br />
The only risk is if there is a narrowing of the veins that were the anomaly. We see<br />
Lydia’s cardiologist every couple of months and at the last visit he said she looks so<br />
good that she won't have to return for 6 more months. The cardiologist will follow<br />
her throughout her life.</div>
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Later I will write a book of all the ups and downs of her in the hospital, and the<br />
blessings we were granted, other miracles, fasting, prayers, priesthood blessings,<br />
trials, and lessons learned while living at the hospital when you have 4 other kiddies<br />
at home. I'm glad it's over!! Little Lydia was able to come home two weeks after her<br />
surgery. This was so amazing. She cruised through her milestones to get checked<br />
off, but going through it seemed like long hours and heart ache as Lydia suffered<br />
ups and downs in the hospital. We tried our best to comfort and support our heart<br />
warrior. Seeing my baby with her chest open and watching her heartbeat for a few<br />
days while the swelling went down was crazy, scary and intense. We held her hand,<br />
held the pacifier with each bedside procedure, and cried when the pain wouldn’t<br />
subside as her chest was open and the meds were not taking. Lydia looked at me<br />
with tears in her eyes and a tube in her mouth and moved around when she wasn’t<br />
supposed to and it was devastating to see my infant struggle like this! My husband<br />
and I became frustrated and scared when her scar oozed up and got bad, and re-<br />
teaching her to eat again took a lot of patience.</div>
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I learned to pray more sincerely, love more genuinely, to trust in the Lord, and to<br />
feel deep graditude for my blessings and for those who extended service to me when<br />
I needed help and support. My mom and mother-in-law attended to my other four,<br />
so I could always be at the hospital. I had friends drive my kids to and from school,<br />
meals, gifts, flowers and more were dropped off randomly and it lifted my spirits<br />
so much. I'm so grateful for all of these acts of kindness, the miracle of life, and the<br />
hand our Heavenly Father has in all of this. I cherish each day with her and she is a<br />
great joy to our whole family. May we all find time to see the miracles in our life!!<br />
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Love Lydia’s Mother always,<br />
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Britney Jensen</div>
Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-11067660021369113002013-02-10T05:00:00.000-08:002013-02-10T18:06:07.194-08:00CHD Awareness Week - Story #4: Heart Warrior Elizabeth<div style="text-align: center;">
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When I went to a Dr. appointment at 21 weeks I had an ultrasound done that told me the exciting news that I was having a baby Girl! During that visit I also received the news that she had a heart condition called Hypoplastic Left Heart Syndrome (HLHS). At that point we were not told anything about the condition other than being told we needed to go see a pediatric cardiologist about the issue. <br />
While visiting the pediatric cardiologist he confirmed the information that we had found online. The left side of her heart is underdeveloped and does not pump blood. While in the womb God allows all babies to have holes in their heart that allow for rerouting of blood flow if a condition like this is present. The problem comes after birth when these holes begin to close off. There is no set time when this happens so right away she will be taken and given a drug through her umbilical cord that makes her body think she is still in the womb. This will keep the holes in her heart open but will most likely cause her to stop breathing since that is not needed while in the womb. Because of this she will also most likely need machines to help her breath. <br />
After gaining a little weight she will have her first surgery (should be within the first week). This will be the first of 3 surgeries that will pretty much reconstruct her heart. The second surgery should take place between 3-6 months and the third between 18 months and 4 years. Texas Children's normally does this surgery around 3 years old. Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-57549971793245885342013-02-09T05:00:00.000-08:002013-02-09T05:00:00.218-08:00CHD Awareness Week - Story #3: Heart Warrior - Yasmin<span style="background-color: rgba(255, 255, 255, 0);">Hey There. My name is Yasmin and I am 27 yrs old, and I was born with a heart condition called Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">When I was born, my parents were wondering why I wasn't a pink baby! I was a “blue baby” and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was at <a href="http://www.childrenshospitalla.org/" style="border: 0px; margin: 0px; outline: 0px; padding: 0px; text-decoration: initial; vertical-align: baseline;" target="_blank">Children’s Hospital in Los Angeles</a> in 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child’s size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said ” I would have to have a second one at the age of thirteen” but I didn't need it then because I was growing perfectly.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at UCLA (University California Los Angeles) by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesn't hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25,2005. a.k.a Thanksgiving Day.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">am currently doing great health and spirits.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I have just married my soul mate on July 10, 2010 and living life one step at a time.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I found my heart as a blessing, and it has taught me compassion, love, and wisdom.</span></div>
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Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com1tag:blogger.com,1999:blog-5665793959555524776.post-65488611579860455182013-02-08T05:00:00.000-08:002013-02-08T05:00:06.338-08:00CHD Awareness Week - Story #2: Heart Warrior Stella Raye<div class="separator" style="clear: both; text-align: center;">
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On March 17th 2012 at 9 am I was on my way to SMR to have our 3rd child another precious girl! daddy and I were so excited and ready to get the labor and pregnancy over with. Well I was scheduled at 9 am but they didnt start my induction till 3:30 after labor was started it was an intense 12 hours and 1 minute along with my mom and husband watching Die Hard movies...lol finally at 3:31 am my littlest princess Stellla Raye was here (one push and she was out!...yay) we thought we was gonna have the normal 1 night and then discharged boy was be wrong.. i got to hold her for about 2 minutes then she was taken to get her vitals and cleaned up. well here is where it starts where we found out our baby girl wasn't as healthy as we thought she looked perfect but was alot smaller than our older 2 children (Abigail *5* was 7.8lbs Darick *3* was 7.11lbs) Stella weighed in at 6.7lbs and 18 inches long well the ped. had checked her while we got some rest, i was due to have my tubal done the morning after but they came in told me i had to get up walk around, potty.. (i couldnt walk still had the epidural in) so they wheeled me into the restroom then about 15 minutes later they came in and said my surgery had been cancelled i was confused but said "OK' and took thee epidural out. a few minutes later the on call pediatrician came in and started telling me he had heard a loud heart murmur and thought it could possibly be something a little more serious which woke my husband up from a sound sleep, so we waited and my OB came back in and said as long as i felt ok i would be discharged (after about 7 hours total after having her) so we waited for the transport team, my mom and step-dad showed back up to see her before transport got there needless to say we didnt get to hold her again until late that night once we got to WVU CH where we was met by a student (now Resident) and told us all her test had been done and that Stella had TOF So we spent that night giving her a bath, getting her dressed, then we went over to the RMH while Stella was in the NICU, we went straight back over first thing the next morning and we ewre told at the NICU desk that she had been moved to the NICU Step-down, where we waited for rounds, we were told she had a haziness in her left lung that they were watching so she had frequent Xrays, by the 3rd day in step-down the haziness went away and we were told now it was up to getting her feeds up so we could go home. Day 4 was strictly pumping and keeping her feeds up so we wouldnt have to worry about an NG Tube....Also on day 4 she got to meet both Grandmothers, her Uncle Danny (also TOF) her Ompa (grandfather) and her Big Sister, brother was 2 months too young to go into the NICU! :( finally on Day 5 we got the best news she had passed her carseat test and that we get to take her HOME! pictures were scheduled, videos were watched monitors were unhooked and we had our newest princess on our 3 hour drive home!!! well we totally weren't prepared for a 6 lbs baby girl all i had were 0-3 clothes no NB so once we got back into our hometown we had to make a stop for some baby clothes and such So we met at a local restuarant where our Son finally got to meet his baby sister and afterwards Ompa brought Abby and Darick home where we were finally together as a family! She has done great Excellent nurser, growing, no tet spells and just blended in with the rest of us! :)<br />
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<br />We went back for a check up on 4/23, Dr Phillips said everything looked/sounded great as did our appointment on 7/23 which is where they started getting things in motion for her surgery date! about a month later and about every last one of my nerves lol w e finally got her date scheduled 9/25/12 before Cold/flu/rsv season, the time seemed to fly by waiting for that day to get there and about 3 days before the day she started having some tet spells, i was thankful surgery was set for that following Tuesday even though the drive was miserable i cried off and on as we headed for pre-op and all evening, night and morning before, i cried up until i handed my baby girl over to Dr. Gus' team at 9am but after that i felt calm with a tightness in my chest that did not go away until i seen that little man come out of the PICU doors at 2pm, she was out and doing great it took about an hour and a half before i finally got to see her and it was worth it!!! i hated seeing her tied down, sedated and tubes and wires coming out of every part of her but the worst was over, now onto the healing it was everyday something new started to come out of her 9'26 was the breathing tube, 9/27 was the L/A line, then it was the chest tubes then the caudle 9/28 she had to be put on CPAP for less than 12 hours to clear out her lungs, Finally on 9/29 my mom and his dad brought Abby and Darick to see us and Darick asked us "why was baby sister dead??" remember she was laying on her back sleeping hooked up to monitors and to a 3 year old that could be pretty scary seeing baby sister that way but daddy quickly went over and pick her up waking her up so brother could see!!! shortly after they left to go back home we were being moved to the Peds floor were she was hooked up to the portable device and we could walk her around (this was also the day she came off of the O2) we were there until 10/1 with nothing but improvements, so on Monday they came in to put the numbing cream on to remove the Pacer wires then they took out her Art line ,ECHO, (she still had a very tiny VSD) and we got to take our little warrior home... check ups were scheduled for 10/15 with the surgeon they checked her incision and said it looked great, then had to go back up on 10/29 same day as "frankenstorm" hit our area but the appt was quick Dr Phillips listened to her said he didnt even hear a murmur, and was gonna have us back in 3 months but decided since she was doing so great that she didnt need her Synagis and wanted us back in 6 months!!!<br />
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<br /><br />well i guess we got punished for being so happy about the 6 month check up on 9/22 thanksgiving we rushed stella to our local ER with a temp of 102 and respitory distress with IV in place breathing treatments done, Steriod given, O2 on she was tested for RSV which came back positive so we waited for transport, a friend of mine (another TOF mom) lived 20 minutes away from WVUCH and when she seen that Stella was being flight lifted there she went and waited for her until either us of my mom got there, we got to her at 5 am (i had to pack for 5 people) and she was happy in mawmaws arms, we were there 6 days and moved to 3 different rooms while in Peds 4 days a nurse notices that her SATS were not improving with chest PT, Breathing treatments and suctioning, so he called Dr Lancaster and he ordered an xray, i had stepped out of the room for a few minutes while Frank was in with her i got to the doors and seen Dr's and lab techs y her room so i quickly went back in, i was pulled into the office to view her xray and was told she had a PneumoThorax (collapsed Lung) and would have to have another chest tube placed :( well back to the PICU we went! chest tube was placed by Stella's ped. cardio. surgeon and we waited and waited for her lung to get better 6 days total, she went from O2, to hi-flow blended breathing treatment after breathing treatment, antibiotics (thought she may have had Pertussis also but that tested Negative) finally chest tube was water sealed and pulled the next day after 6 days! then we had to keep her feeds up, wean her off of the O2 which was tough but finally after 2 weeks we got to go home!!!!!<br />
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<br /><br />Now she is doing great and has started with PT, and her Synagis shots per Dr. Phillips!Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0tag:blogger.com,1999:blog-5665793959555524776.post-86520185253871800372013-02-07T05:00:00.000-08:002013-02-07T08:20:11.384-08:00CHD Awareness Week - Story #1: Heart Warrior Eva<div style="text-align: center;">
Happy CHD Awareness Week! </div>
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Last year I started what will be a yearly tradition for Mylah's blog. I started sharing other Heart Warrior's stories during CHD Awareness Week. This is our way of spreading awareness and stories and learning about other families who live with the same things we do. This year I have the participation of the sweet Heart Families of these Heart Warriors. I am so excited to share all their stories! </div>
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Here is the very first story about Heart Warrior Eva, shared by her Mom , Jennifer:</div>
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<i>Five years ago, I sat holding my youngest child in a desperate
holding pattern. My husband and I were counting the hours and minutes
until her life saving operation and trying to keep the mood light by
watching Sunday night college football. Boise State and Nevada were
trading scores in a game that seemed unbelievable…four overtimes, and a
final score of 69-67, Boise State on top.
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<br />In retrospect this anomaly of a game was quite a blessing. While
neither one of us had any interest in either team playing, we still
found conversation in the tit-for-tat scoring of the two teams, and in
the game play that seemed endless. It diverted our attention from the
gravity of the situation, as our daughter, Eva, lay listless in my arms.
She was fully knocked out after days of propranolol and morphine
injections intended to keep her from having her repeated and severe tet
spells.
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<br />In between scoring drives I would gently shake her, or roll her from
side-to-side, hoping to arouse her one last time before midnight, the
dreaded time of “no return” for a last meal. I had been trying for
hours in my hopeless attempt to wake her from her coma like state, but
was not having any success. My anxiety increased, as the minutes ticked
by and the hour hand crept closer to the 12. In my mind the only thing
I could provide for Eva, the only way that I could mother her, was to
feed her, and even that had been taken away.
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<br />The rest of the cardiac intensive care unit was quiet that evening,
except for the occasional beeping of the alarms, or complaints of an
unhappy baby….and I took peace in that too, yet my tears continued to
flow. They worked into a steady stream, until finally the clock’s hands
pointed to the 12, and I knew that my time to help Eva was over. I
reluctantly placed her in her crib, adjusting her so that the wires and
oxygen tubing would not tangle up. I gave her a few more kisses, and
smoothed the short baby fine hairs on her head. Hipo followed behind
me, and then took my hand, and we headed to our assigned parent room.
It would be an early morning for us.
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<br />I don’t remember much from that night. I imagine it was a fitful
sleep, but I do remember the alarm sounding, and it was time to go, time
to sign away our daughter to the doctors who would mend her broken
heart. I wondered if in time, my heart would mend too.
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<br />While I had muttered silent prayers that Eva would awaken from her
deep slumber the night before, I prayed in the morning that she had
remained blissfully asleep, unconscious to what was about to happen, and
the probable gnawing feeling in her stomach since she hadn’t eaten in
many, many hours. Luckily, my prayers had been answered. We arrived in
Eva’s bay to find a sleeping baby. I asked the nurse if she had
managed through the six hours we were gone without a tet spell, and I
was assured that she had. I was hopeful that this was a positive sign
for the day to come.
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<br />We immediately began signing the plethora of papers that would
permit the hospital and doctors to repair our gravely ill child, and
then we talked with anesthesia. A female, Eastern European fellow came
to talk to us, and informed us that the doctor would come to pick Eva up
for her surgery in a few minutes, and to not be “alarmed” as he would
just carry her away. I found this discovery oddly comforting, and sure
enough, when the anesthesiologist came in he gently scooped her still
listless body from my arms, and carried her to the OR. While my heart
was breaking into a million pieces, and the tears flooded my face, I
felt a still serenity, and calmness that wasn’t expected as the kind
doctor carefully carried my miniature child in his strong arms. I felt a
loving kindness there, and in my heart I knew things would be alright.
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<br />We found ourselves in the surgical waiting room, surrounded by other
worried parents and families. I found myself people watching, having
empathy for the families with worried expressions and wringing hands. I
found myself hoping and praying for positive outcomes for them as well.
I passed the time by e-mailing friends and family, people that I had
come to rely on for support. Nearly two hours into our wait, the first
report came. They had finally gotten Eva on bypass. Once on the
operating table, she had apparently experienced tet spell after tet
spell, making it nearly impossible for the doctors to place the many
lines in her veins that would be needed to sustain life. Each tet spell
caused her vessels to clamp down, diverting the much needed oxygen to
those important organs like her brain, and lungs. I found myself shaken
by this news, but held on as I still felt a calming presence somehow
telling me everything would be alright. After all, they had managed to
get her on bypass – and from here, her surgeon could work his wonders.
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<br />Several more hours passed, and we were finally greeted by her
surgeon, who calmly and quietly escorted us to a quieter room, where
other people watchers would not be able to overhear the details of our
own family’s ordeal. First he said that she was off of bypass, they
were closing her up, she would need to remain on the ventilator, but
that over all things had gone well. He explained that he did not repair
the hole between her atriums, and couldn’t find one of the smallest
holes between her ventricles during surgery, although he had
successfully patched the very large hole. He also explained that her
pulmonary valve was not salvageable, and that he had to remove it, and
widen her right ventricle outflow tract by placing another patch, in
order to facilitate the flow of blood to her lungs, but overall he was
happy. She had done well. We would get to see her in a few hours.
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<br />The unimaginable relief I felt was mixed with a certain anxiety, a
yearning to hold my baby, to touch her and see her chest rising with
every tiny breath. The time between our visit with the surgeon and our
reunion with Eva seemed the longest, a moment for sure, but still a
moment that drug on for an eternity. When we finally laid eyes on her,
she was laying prone, a large bandage covered her newly repaired heart,
and drainage tubes were removing errant blood. Her chest was in deed
moving up and down, in rhythm with the loud whirling of the ventilator
parked next to her bed. Two columns of IV medicines sat at her opposite
side, providing drugs and nutrition, and several other lines fed into
her body to record data, provide emergency pace-making, and supply quick
boluses of medicine. There she lay, beautiful in perfection. I doubt
many could see it, beyond those lines and tubes, beeping machines and
wires, but what I saw that day gave me hope. My daughter’s broken heart
had been repaired.
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<br />While her recovery was not seamless, it was quick. A collapsed
lung, and fluid around her heart set her back only slightly. She was
home before the week was up. I watched in amazement as the weeks and
months passed, and my sick little baby developed into the rambunctious
toddler she is today.
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<br />Today is a celebration! I celebrate five years of Eva’s repaired
heart. While I know Eva’s repair was not the end of the road for her
and her heart adventures, it closed the chapter on a stressful beginning
to life. She will need further intervention, but by God’s grace, and
those talented, loving, wonderful doctors, she is with us today, two
years later.
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<i>Eva Post Op:</i><br />
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<img alt="" class="photo_img img" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/7923_1230677483692_4446939_n.jpg" /><br />
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<i>Eva and her Daddy</i><br />
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<img alt="" class="photo_img img" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/7923_1230678883727_625622_n.jpg" />Lara H.http://www.blogger.com/profile/11283531518055854450noreply@blogger.com0