MRI

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. 

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. 

Isn't her gown the cutest?! Made by yours truly (Check the shop for all sizes!)

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. 

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. 

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. 

She rested for about an hour, tried to have some popsicle and ice and come out of it. 

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. 

Heart Month

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.

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.

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. 

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! 

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.

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. 

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

Happy Heart Month! 

Wear Red Day 2015

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. 

We are truly blessed.

We love you all! Happy Wear Red Day!! 

Heart Check

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.

It's always a little nerve wracking to take her to an appointment,

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.  

EKG with crazy hair!!

Or "stickers" as she calls it. 

She was so calm for her ECHO and so brave. 

For now her heart is about the same. Functioning as it did post op two years ago. 

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.

We are always so proud of Mylah's bravery and the little fighter she is. 

She's healthy and doing so well.
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. 

It was a happy heart news day for sure! :) 

Her 2nd Heart Day

Mylah's full heart repair was on April 25th 2012.

 Today it's been two years. 

Two years of laughter, fun, smiles, milestones, love, silliness, healing, and joy.

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. 

We thank our Heavenly Father each year as we watch her heart function and keep her alive.

To celebrate Mylah's 2nd Heart Day, I made a heart shaped cake and we added two candles for each year.

She kept asking if it was her "dur-bay" (birthday).

In a way, it is. 

Happy 2nd Heart Day Mylah!

6 Month Cardiology Check Up

We have to drive to town two and a half hours away for Mylah's Cardiology check ups.
It's a long drive, but so worth it raise our kids in this lovely small town. :) 

We headed that way this past Friday for her visit with Dr. Thomas. 

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.

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.

Mylah climbed on the exam table like a champ and laid so still. Again she was nervous but did well.

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.

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. 

I've had many people ask me if this means no more surgeries for our sweet Mylah. The honest answer is no. 

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.

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.

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. 

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. 

She's doing well and staying healthy. We will cherish every second with our precious Heart Girl! 

CHD Awareness Week 2014 - Heart Warrior Braxton

CHD Diagnosis: Transposition of the Great Arteries, minor ASD, minor VSD

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.

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.

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.

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.

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!

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.

He finally was able to go home on January 31st, 2013.
36 days in the hospital, 1 OHS, 3 other surgeries, 1 cardiac arrest episode, and finally we were being allowed to go home.

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.

It has been quite the journey but am grateful God chose us to stand by his side and support him through this :)

CHD Awareness Week - Heart Warrior Lila

CHD Diagnosis: Tetralogy of Fallot with Pulmonary Atresia, VSD and MAPCAS

Lila's Facebook Page: Lila's Heart Journey  https://www.facebook.com/#!/lilasheartjourney

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.

CHD Awareness Week - Heart Warrior Camden

CHD Diagnosis: CoA, BAV, ASD

Camden's Blog: http://www.caringbridge.org/visit/camdenwhitehead

Camden's Story:
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). At 2:30 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 at 6:20 - 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 7:45 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 8am 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 8:20 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

CHD Awareness Week 2014 - Heart Warrior Angel Jr.

CHD Diagnosis: Tricuspid Atresia VSD ASD

Angel's Story:
Born June 30 2013
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!

- His mother Mary Donaciano

CHD Awareness Week 2014 - Heart Warrior Cal

CHD Diagnosis: ASD, VSD, Three leaking valves and aorta dilation

Cal's Blog: http://www.heartwarriorcal.blogspot.com/

Cal's Story: 

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. 

- Cheryl Smith