Sunday, February 26, 2012

Sh!t Heart Moms Say

A new trend has hit the internet.  Actors and actresses on YouTube doing parodies of stereotypical things that a certain gender/race/group say or do.  And let me tell you, as un-PC as they can be, I have found them to be hilarious.  My personal favorite is Shit Fat Girls Say.  It cracks me up every time, most likely because let's face it, I am not the skinniest person to ever walk the earth.  And I may or may not have said some of the things that are portrayed in the video.  You can watch it here but be warned, there are parts that are not for little ears.
After watching that video, and some of its hilarious counterparts-Sh!t Extreme Couponers Say, Sh!t Girls Say, and more-I decided that there should be one for us heart moms out there.  Being that there's no way on God's green Earth that I am going to be filming myself anytime soon, I thought I would just post some of the things that are said frequently in our little world that may not make sense to others, but cause that "aha" moment for a heart parent.  Feel free to contribute if you think I have missed some!  :)

"Are her lips bluer than normal to you?"
"Anyone know of any way to put extra calories in a diet without using olive oil in everything?"
"She was satting in the low-80s today, so I was a bit concerned."
"Can you believe how PINK her toes are?"

"Well, her ejection fraction is 25% but you could never tell by looking at her."
"I HATE when people tell me that she's 'repaired'.. she has freakin man-made material in her chest!"

"Please pray for pee!"
"Anyone out there have a trick to getting your two year old to sit through a blood pressure reading?"
"During her speech therapy today, she actually said a full sentence!"
"Ugh.  So tired of oral aversions."
"Yep.  We have pneumonia/RSV.  Again."

"Oh my gosh, we have made it 6 months without seeing the inside of Children's!"
"Yay!  They featured someone with HLHS on Grey's Anatomy tonight!  But they totally handled it wrong.."
"Well she has a moderate tricuspid leak, but most of us do, so whatever."
"I cannot wait till he gets off this sildenafil.  The 'unfortunate side effects' are a little weird in a three-year-old."
"Another stay at Hotel Amplatz.  (Hotel Children's, etc.)  Can someone bring me some food?"
"I don't want to say the h word yet, but.. we may get to go home soon!"
"I wish I could put her in a bubble so she could avoid germs all the time."
"Woo hoo! Extubation!"

"He's such a hard stick that they are keeping the IV in till they are sure he will stop dropping his pressures."
"Three a.m. and I am doing laundry.  Damn g tube leaked all over again."
"What's his INR?"
"Chest tube removal.. sounds like the perfect time for me to leave the room."
"Do they HAVE to check vitals every 4 hours? How do they expect us to sleep around here?"
"I swear I should a have a freaking nursing degree by now."

Sometimes, it's good to know you're not alone.

Tuesday, February 14, 2012

The Faces of CHD Part Fourteen: Torn between two loves

Today is CHD Awareness Day.
It's Heart Day.
And my heart is heavy.
All these angel babies gone way too soon.  All these parents grieving, dealing with their own broken hearts. 
Instead of posting a heart child's story today, I am honoring the angels.  I hope you will take the time to say a prayer for them, and for their families.

"It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.
One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit.
She is still not swayed on this idea. So Jesus kneels down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay". The angel smiles and says "I guess that will work".
But the little angel is still a little scared. She asks "will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine."
Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday."
"And when its time to come back to heaven, I will make your heart whole again.
Always remember that you are not broken, just torn between two loves"

CHDs are ugly.  Scary.  Sad.  Destructive.  Selfish.  Non-discriminating.
This is why we fight.
For Tru, Nathan, Pierce, Ewan, Easton, David, Parker, Olivia, Hazel, Kayden, Lucy, Tommy, Joshua, Amayah, Lorenzo and Andrew.  For all the angels.  And for their families, torn between two loves.

Monday, February 13, 2012

The Faces of CHD Part Thirteen: HAILEY

Story taken in part from the U of M website/Jennifer Helstrom, Hailey's mom.

On March 25, 2010, Jennifer went into labor. As Jennifer and her (now ex) husband, Scott, drove to the hospital, labor progressed much quicker than expected. Scott was speeding when a police officer pulled him over. A few minutes later, that police officer delivered Baby Hailey — along County Road 5 in Cambridge, Minn. — in the back of the family van.

Jen immediately noticed that Hailey’s lips were blue and were concerned about what impact the 35-degree weather was having on her newborn. An ambulance transported Jennifer and Hailey the rest of the way to the hospital. Hailey was admitted to the hospital’s neonatal intensive care unit due to respiratory distress. A week later, Jennifer and Scott learned that their baby’s lips were not blue from the cold but because she had truncus arteriosus, a serious congenital-heart defect.

When Hailey was two weeks old, doctors implanted a donor heart valve and at three weeks, added a pacemaker. At four months, Hailey’s doctors implanted a new pacemaker and referred her to University of Minnesota Amplatz Children’s Hospital for specialized care. Hailey’s condition worsened — her heart was failing due to underlying dilated cardiomyopathy (decreased heart function because of a weakened and enlarged heart) that had evolved separate from the truncus arteriosus. Hailey would turn blue during normal infant activities such as eating. In September 2010, she was added to the transplant list.

Two weeks later, Hailey was comfortably asleep in Jennifer’s arms when the phone rang. “Something made me get up,” Jennifer recalled. “I took a deep breath and answered. It was our transplant coordinator, Tracy Demars. She said, ‘Jenny, we have a beautiful little heart for Miss Hailey.’ I remember those gentle, kind words like it was yesterday.” Jennifer then embarked on one of the most nerve-wracking drives of her life.
Hailey was able to get a heart quickly due to her age, blood type and size. The transplant however, was higher risk due to Hailey’s weight of only 5.5 kilograms (12 pounds). The surgery went well and there were no complications.

Hailey was discharged two weeks after the transplant and has shown no signs of rejection.

Her cardiologist, Rebecca Ameduri, M.D., says that Hailey’s prognosis is very good since infants have the best long-term transplant outcomes. Since the transplant, Hailey has begun talking, and is eating well and growing. She requires a strict regimen of anti-rejection medications, but Jenny feels so blessed to have her, and is extremely thankful for the donor family that gave Hailey another shot at life.
Hailey & mom, Jen, Christmas 2011

Sunday, February 12, 2012

The Faces of CHD Part Twelve: LUCY

Written by Melissa, Lucy's mom
We found out at my 20 week ultrasound that Lucy had a heart defect. My OB noticed it on the ultrasound so she sent us to a cardiologist in St. Cloud who did an echo and confirmed that Lucy had Tricuspid Atresia with a hypo plastic right heart (read about that here). We had then started going to the U of M to see the fetal cardiologists. They had a plan for us to be induced one week early so that they could have the doctors on staff that Lucy would need. Lucy was born September 12, 2011 at 7:49 she was 10 lbs 5oz and 20.5 inches. It was a long labor that ended in a c-section due to her size.
Lucy was brought to the NICU immediately so that they could do an echo to confirm what they saw prenatally. Things were as they believed. They waited a couple of days for her PDA to close to see how her heart would circulate her blood. Things seems fairly well so they decided they could do the Rashkind procedure (A cardiologist threads a catheter through the belly button or a vein in the leg, to the heart, and creates a hole between the upper chambers. The hole allows oxygenated blood from the left side of the heart and deoxygenated blood from the right side to mix, increasing the amount of oxygen in the blood pumped to the body) instead of having to put in a shunt. This was a good thing since that meant not having to open her chest. After a few days she seemed to be doing very well. She was eating like she should and her oxygen was in the high 80's to low 90's which was wonderful. They had moved us to another room because they had planned on sending us home.
Lucy started to not eat as much which they thought was ok due to what she had gone through with the Rashkind procedure. They told us she could not go home until she ate a certain amount every 4 hours. On the 20th we had gone home for the night when we got a call at 4am that her oxygen was dropping dramatically into the 40%. They were giving her meds to keep it up. They ended up putting in a central pick line to get meds directly to her heart. This took hours because they could not get it in they finally had to take her to radiology to get it done. After another day and no improvements they move her to the PICU so they could watch her better. On the 22nd her pressures started to drop dramatically. It was like a circus in her room trying to give her meds to keep it up. At about 11pm that night the surgeon came in saying our only option was ECMO and it was very risking because she was in heart failure and very sick with only half of a heart. We signed the papers and we watched them take her away not knowing if she would make it back. She got back around 1 am and things went well. The doctors were not sure why she went into heart failure. We had multiple doctors coming and going looking at her and doing tests. They sent her tests to the children's hospital in Cincinnati for their input as to what they thought may be wrong. They were not sure if it was cardiomyopathy or myocarditis. Lucy was on ECMO for about a week and things were not really changing they decided to try the Berlin heart which would be another risky procedure due to how sick she was and that she was on ECMO. They put in the Berlin heart and things went well during the surgery but she only had it for less then a day. Since she had only half a heart they had to also put a shunt in for the Berlin heart to work and place it in differently then they would normally and it did not work for her. Lucy went back onto ECMO. They told us she would have to be put on the transplant list immediately as a 1A recipient in order to have any chance but even with a transplant they told us she had a very low percentage that should would make it thorough because she was so sick. At this point Lucy still had the doctors unsure as to what was wrong with the left side of her heart. Lucy went on the transplant list September 28th. They had attempted to close her chest on the 6th which would be the first time since the 22nd. They did get her chest closed but she was bleeding more then she ever had. They did not know if she would make it through the night. At 1pm our surgeon Dr. Bryant called me to say they had a heart!! We were so excited but they told us getting her through this was not going to be easy. She got her new heart October 7th. She made it through the surgery great but when they tried to taking her off of bypass her pressures kept dropping again. They tried 3 different times for at least 4 hours and finally they had to put her back on ECMO. They believe that the heart was good but was on the small side and Lucy was so sick that it could not catch up. They kept her on ECMO for a week then they tried taking her off and the first time it did not work so they tried again two days later and she was able to do it on her own. Now the problem was her kidneys took a hit while being on bypass so she was full of fluid and was not peeing so they put her on dialysis. So they had to put her through another procedure to start the dialysis. They would fill her with the fluid and let it sit for 30 min then drain the fluid. Every time they would empty the fluid her pressures would drop. So they had to stop the dialysis for a couple of days and try it again. Once they started again it worked better and did not seem as hard on her. They were getting rid of some of the fluid but still not enough to close her chest. On October 19th they told us her liver tests were coming back extremely elevated so they were going to be watching it more closely. So now it was her heart, kidney's, and liver. October 20th I was waiting for the tests to come back to see if it had gotten better. One test stayed the same and one was a little better. This was also my husband's and mine 10th anniversary so after we got the results back we decided to go out to eat. When we got back Lucy was doing fairly well just going through her dialysis. She was starting to have some urine too so things seem to be looking good. But at about 10:15 when they were draining the fluid her pressures dropped as they had been but they always went back up right away. This time they dropped and did not seem to be going up as normal. They gave her meds and some blood products and it went back up for about a second but i stood there watching the monitors as her pressure suddenly dropped in half and never went back up. They hit they code blue and the room instantly filled up. They worked on he for about 45 min and she never came back. The surgeon told us that they could try ECMO one more time but he gave it about a 1% chance to work since she had already been on it 3 times and her chest had been open for over 4 weeks so anything we did not would be for us and not for Lucy anymore. He also told us that because her oxygen had dropped so low for a long time that she may have brain damage if she were to even make it through. My husband wanted to be the one to tell the nurses to stop so we went back into the room and he asked them to all stop. She never came back to us. It was the hardest thing we ever had to do.. we always knew this could happen but always before she was having another procedure not just what seemed out of the blue. I miss her so much. We only were able to hold her that first week but she was able to hold our hand and she would squeeze our hand every time we held it. She would always open her eyes and move her head when she heard me it was wonderful. The nurses loved her and I think the whole staff was amazed at her strength and how long she actually hung on. She was a fighter!! 
They did not find out what was wrong with her native heart till after it was removed for the transplant. They discovered it was Hypertrophic cardiomyopathy (. Due to Lucy being born with only half a heart it put to much pressure on the other side which caused the heart failure to progress so quickly. 
I miss her and love her so much but am thankful for the time we had and glad she no longer is suffering.

Saturday, February 11, 2012

The Faces of CHD Part Eleven: GIANNA

Written by her mom, Margit
When we found out in December 2009 we were expecting twins, we were beyond ecstatic, yet hesitant.  We lost one of our twins (Gabriel) at 27 weeks in utero due to Trisomy 18 in our first pregnancy, but were blessed with Isabella.  We were so worried going up to the 20 week ultrasound.  I remember the confirmation that it was two girls and everything was perfect.  Wow, nothing wrong, that is amazing I thought.  Then at our 24 week ultrasound, the tech spent a lot of time on Baby A's heart.  I had flashbacks to the amount of time they spent on Gabriel's heart.  Tom assured me it was fine.  I asked what was wrong.  The tech said I think she might have Transposition of the Great Arteries.  I was heart broken, I couldn't lose another child.  She said it was "a good heart defect" to have because the outcome after surgery is favorable.  That didn't help me much, but I knew she was trying to help me stay positive.  We then met with the perinatologist and cardiologist who confirmed her TGA.
Thank God, I carried the twins to 38 weeks.  This gave Gianna the best chance for surgery since she was able to grow more.  Gianna and Reagan were born 8/18/2010.  Gianna needed a procedure, balloon septosomy, within 4 hours of birth to allow more oxygenated blood to circulate. 
She had difficult heart anatomy with her coronary arteries being inverted, so she had two more heart cath procedures  to ensure they had her anatomy correct before her open heart surgery.  She had her open heart surgery to correct the inverted coronary arteries and to correct her aorta and pulmonary artery, which had grown in the wrong spot. Gianna did amazing, but had a lot of bleeding after her surgery.  
Our surgeon told us it was one of his toughest surgeries ever for him.  She had a lot of swelling in her tiny little body, and her chest was left open for 4 days.  Her stay was on the very long end for this type of surgery.  She had issues with feeding, gaining weight, and retaining water.  After 5 weeks to the day, Gianna was able to come home to be with her family.  She was in the less than 3rd percentile for weight height when she came home, and 80% tube fed.  Within 6 weeks, she was 100% bottle fed and by 6 months old she had moved up to the 10-25 percentile for weight and height.  She still has a VSD  and  narrowing of her pulmonary artery, and may need surgery in the future, but we know she is a fighter!  I thank God every day for the University of MN Amplatz Children's Hospital, Dr St. Louis (her surgeon) and the wonderful staff and volunteers.    
Gianna is a miracle.  She is my angel.  Her name means God is gracious.  She truly is a gift from God and shines on everyone she meets!

Friday, February 10, 2012

The Faces of CHD Part Ten: NATHAN

Nathan's mom, Michelle, knew that the baby she was carrying had a heart problem.  She just didn't know what kind yet.  As she waited for the week to go by until her next OB appointment, when she would find out just what was wrong with her little guy, she went into labor and had Nathan at 29 weeks.  It was December 19th, 2008, and it was the middle of a blizzard.  Mayo One, the lifeflight helicopter used to transport patients, was grounded.  In the ambulance on the way from one hospital to the children's hospital at St. Mary's in Rochester, MN, her pediatrician and OB (who were along for the ride) told her that Nathan had Hypoplastic Left Heart Syndrome-that his left ventricle was pretty much non-existant.  The family was told that he would need surgery as soon as he hit 5 pounds, and that was if they chose to try to save him.  Otherwise, they could do hospice care and wait for him to slip away.
Michelle, of course, knew she had to do whatever it took to give her beautiful boy the best chance she could.

On March 13, 2008, Nathan was not quite 5 pounds but he needed to have surgery.  He had the first of his three planned surgeries that day and did well.  (Read about the three-stage surgery used for children with HLHS here ).  In July of the same year, Nathan was once again a very sick little boy.  His kidneys and liver were not doing so well, and it was found that his shunt had closed.  Since he was so tiny and so fragile, a catheter procedure couldn't be done to put in a new shunt, and Nathan had to undergo another open heart surgery to replace the closed shunt.

At the end of October of 2009, Nathan went in to have his second stage surgery, the Glenn.  He did very well, and was at home within 2 weeks.  After being home for a week, it was discovered that he had a chylothorax, a leak in his lymphatic system that was going into his pleural cavity.  (Chylothorax info in detail), so he spent another two weeks inpatient.  Nathan was the star of the cardiac ward during those two weeks.  In spite of his chest drainage tube, he was having a good old time with wagon rides and playing with all the staff.

In late November of 2011, Nathan went to St. Mary's for what was to be the last of his planned surgeries, the Fontan.  While he flew through the surgery itself, the next four days were not so great.  His body was so traumatized and tired that he needed to be placed on ECMO to get some rest.  Just as he was getting hooked up to ECMO, he coded for four minutes.  They were able to bring him back, and in the next three days, Nathan went back to the OR four times to have more heart surgeries.  At some point during all the calamity, he developed a large blood clot in his leg, and the family was told that when he was recovered from his heart surgery, a part of his leg/foot would need to be amputated.
After coming off of ECMO, Nathan's kidneys didn't want to function, so he was placed on dialysis.
Late in the evening of January 9th, 2012, Nathan's pressures dropped considerably and he took a turn for the worse.  It was found that he had grave intestinal bleeding, and it was inoperable due to complications with dialysis and kidney function.  Rather than prolong his suffering, the family chose to let Nathan go.
Nathan and family w/Santa 2011
Nathan & Mama just days before he went to Heaven

He passed away peacefully in his mom's arms on January 10th, 2012, in the wee hours of the morning.
Today Nathan has been gone for a month.  His family does their best to get through, and they know that Heaven is a beautiful place.  But it doesn't change the fact that he is not here on Earth with his family.
CHDs are monsters.  They affect not only a heart, but a body's whole operating system.  They are so much more than "just" a heart problem.  Hopefully hearing Nathan's story (and all the others featured on this blog) will help people to understand just how much is needed for research and funding.  We need to fight these monsters.
Today, please take a moment to pray for Nathan and his family.  And then, do something that benefits CHD awareness.  For all the children in pain, for their families, for the kids gone too soon. 
For Nathan.
Rest in peace, sweet boy.

Thursday, February 9, 2012

The Faces of CHD Part Nine: KAYDEN

As an expecting mother we all wonder what our baby will be, we all want our babies to be healthy and usually expect that outcome we never expect the opposite. This is our heart journey of hope. I found out my baby was going to be a boy when I was about four months pregnant. The sonographer also noticed something about his face, she said it looked like he had a cleft lip which most of the time meant a cleft palate as well, so we were referred to another clinic to confirm it. At that clinic it was confirmed my son was going to be born with a cleft lip and palate, but also they noticed something about his heart and referred us to a pediatric cardiologist for a fetal echo.
At the appointment with the cardiologist, I was told my baby's heart was enlarged and he had a valve leaking. I was told he had dilated cardiomyopathy, and Ebstein's Anomaly. I didn't know what really went through my head after all of that. I know I worried a lot about what could happen, I knew he would have to be on a ventilator when he was born if his breathing was very bad, I also knew we might have to travel to Charlottesville, VA for him to be born, or I knew he might just need a little oxygen if his breathing wasn't too bad. During the rest of my pregnancy from 4 months on, I went to the cardiologist for them to follow the babies heart. On December 20, 2007 I went in labor, I had the most handsome baby boy at 1:24 a.m. On December 21, 2007, I named him Kayden James. The nurses were in a hurry to clean him up, he was okay though, his breathing wasn't horrible so all he needed was a little oxygen to help him breathe, so we didn't have to travel that night, and he didn't have to be put on a ventilator. He was taken straight to the NICU due to his health conditions. Kayden stayed in the NICU for 2 weeks, over that time his heart had improved a little, the valve wasn't leaking quite so bad, and they helped me learn to feed him since he had a cleft palate which affected the hard and soft palate. 
2 weeks old!

In January at 5 weeks old Kayden was sick, he wasn't keeping anything down and it worried me so I took him to the emergency room. They couldn't figure out what was going on with him so they admitted him, the next morning that did an ultrasound on his stomach and said he had pyloric stenosis. I had never heard of that in my life, but the way they explained this was the muscle your food goes through to digest your food has a little hole where the food passes through, Kayden's was too small. They did surgery to fix that, I was so scared that my 5 week old baby with a heart condition was having surgery, I didn't know what to expect. But thankfully he came through very well. During his first year, he had two more surgeries. One was a lip adhesion and the other was to finish the lip repair. He did great with, throughout the year his heart was getting a little better which was surprising or it stayed the same, it didn't get worse so we were all okay with that. He had his palate repaired at 13 months, he did well with that. Kayden's cardiology appointments at this point were more spread out. He was a great child, he would clean up after his self if you asked, he liked playing outside, he has an older sister who he loved to play with. If you were to see him you would think he was a normal child with nothing wrong.
Sometime during the spring of 2009, I noticed a lump next to his right ear. I was concerned because I had never seen anything like it. We went to his pediatrician and he said it looked like a preauricular cyst. When he was born he had a tiny pit on his ear, it wasn't noticeable unless you looked at his ear, so the cyst formed from that pit. AS months went by it would get smaller or bigger, he was being seen by an ear, nose and throat doctor for it. He was getting more ear infections which wasn't like him at all considering he had a cleft lip/palate which would have made him for at risk for them and he never had one as a baby. In June of 2010, the ear, nose and throat doctor did surgery to remove the cyst. That morning he was fine, no fever or anything, but the cyst looked like it was getting infected again but the doctor still thought it was fine to do surgery. After the surgery, the doctor came to the waiting area and said he was fine, he got all of the cyst, but he said his ears were really infected and there was a lot of drainage in them. The rest of June, he kept getting sick, it was either a cold or ear infections or the cyst was coming back and it was more infected than before. July was the same way until the end of July I noticed his feet were swollen and his appetite had decreased. I took him to the pediatrician first because he wasn't due to see his cardiologist until September and I couldn't get an appointment before the following week. I honestly didn't think it was heart related because his heart had been stable for a year by then. His pediatrician checked him really well, he noticed his liver was swollen and concerned that it was affecting his heart he got Kayden's appointment with his cardiologist moved to the next day.

That is when everything changed. I remember that day like it just happened an hour ago. His cardiologist came in the room, sat down and I could see in his face it wasn't good. He said Kayden was in congestive heart failure. I was scared to death because I knew he might not make it. He told us to go get x-rays across the street and go straight to our PICU, not to admissions straight to the PICU. We got there and they were expecting us. That first day still seems like a blur because I was so scared and not sure what was going on I can remember bits and pieces of it, like them asking questions about his health, etc. He was transported to the University of Virginia that night. He was put on all kinds of different medications and stayed in the hospital for a little over a week. He recovered well. He came home, played outside, with the other kids, he was fine. Obviously he was followed very closely by the cardiologists and they weren't sure what exactly to do. In November, Kayden had his first diagnostic cath done. The options were valve repair, valve replacement, or transplant. Afterwards, the cardiologist who done the cath said he didn't think he would survive a repair of his tricuspid valve so they were thinking maybe transplant was the way to go. So they put him on another medication and got some different opinions. That's when a cardiologist called me from Children's Hospital Boston. They felt like they would be able to do a repair of his tricuspid valve called a cone repair and also do a bi directional glenn if he needed it. Kayden was in and out of the hospital the next few months with either anything he got basically. His surgery in Boston was scheduled for May. In February, he was in the hospital again and his cardiologist was concerned about him making it until May so he contacted Boston and got the surgery scheduled for March 17.
My babys first and only open heart surgery was on March 17, 2011. I was so scared because I knew what UVA had told me back in November. I didn't want Kayden to see how upset I was so once I left him in the waiting area for his surgery I broke down. I didn't know if by the end of the day I was going to have my son or not. He was in surgery for about 6 hours I think, when his surgeon came to talk to me he said Kayden done great. He came off the bypass and his heart took right over. He admitted that they thought he was going to give them more trouble than he did but my little man proved them wrong once again. He was in the hospital for 3 weeks in Boston, he recovered well. He came off the ventilator sooner than they had expected so that was a huge step for him. 
Cone repair

When he was discharged the plan was to go to the hotel and leave the next morning. When we got there Kayden was okay for a little bit but then he was 'wanna go home', so that did it we left that night and drove the 13 or 14 hours back to Virginia. We were home for a few days when his oxygen dropped to the low 80s one night and he was breathing hard and not eating again. Once again we ended up at the emergency room and admitted to the PICU. He had a pleural effusion on the left side. This was a surprise, I was told usually they show up right after surgery & his showed up 3 weeks later. He was in the hospital with another chest tube in for another week. Slowly he started going downhill again, he wouldn't eat, wouldn't walk much, and he was needing his oxygen more often. On June 14, 2011 we went to see his cardiologist at UVA, that was the last time he would be admitted into a hospital. His heart function was worse than before his surgery in March and the repair had stopped working. The only reason they said he wasn't worse was because of the glenn procedure. We were at the last option, transplant. So of course we were admitted and taken to the PICU, they got a central line in him to start medications and start the transplant evaluation. They had to do another catheter because in November one of the pressures in his lungs were too high and if it were still high then he wouldn't have been a candidate for a transplant. That cath set him way back, he didn't recover well from it but on June 28, 2011 he was listed as a 1A on the transplant list. He was intubated for a little over a week after the cath, when he came off it he said 'no more, no more, no more'. Those were the last actual words we heard him say. He took a nap after the nurses got him cleaned up. When he woke up he was so disoriented. He couldn't control his movements, he wasn't talking ,and he kept looking around. I had never seen him this way in 3 and a half years. Slowly he would come out of it. He finally controlled the movements, but he still wasn't talking. Kayden's last week of life he had a few small events happen that I guess you could say maybe they were signs. One day his heart rate was jumping around and got as high as 215 one time, it was in the 160s-170s and finally settled in the 140s which was still high if you ask me but for some reason they wanted it high. His kidney function had went down one day from the previous day but the kidney doctor was in the room for a minute and listened to him and all he said was give him more fluids. Then on July 13 he was breathing hard, my mom was there with him and was telling the nurses, and also he was spitting up greenish colored stuff and she kept telling them about that and they didn't do anything. They said it was medicines, I don't believe that because I've seen him take medicines and vomit right after taking them and never once was it green. They listened to him all that day and they said his lungs were clear. The last time I had talked to my mom was at 11 p.m on July 13, and she said he was fine just breathing hard still. At about 1:30 on July 14, 2011 I got the worst call in the world that at first I thought was going to be the best. I saw the area code and thought YES Kayden's got a heart. When I answered my mom said I needed to get up there we were losing him. I could not believe it I didn't want to believe it. I got in touch with my brother who picked me up and Kayden's two brothers and his sister and we all headed towards Charlottesville. I got another call from my mom and she said he was gone, I dropped the phone and just cried I didn't want to believe my baby wasn't here. He was a fighter, he couldn't give up. The whole two hour ride was horrible I cried the hole time, but I never lost hope. I held on to every piece of hope & faith until I walked into his room and saw for myself my baby wasn't breathing. My baby was gone. He wasn't coming back. I never thought this thing could have happened to me, not in a million years. 

My goal now is to let Kayden live on through me by helping other families who have to go down this horrible journey. One thing I want you all to do is live by what I did, always keep your faith and never lose hope. Once you do you'll have nothing. My prayers were answered this whole time, Kayden is okay now, no matter how much I hurt and my arms ache to hold him I know he is safe and he's no longer hurting.

Wednesday, February 8, 2012

The Faces of CHD Part Eight: LAUREN

Written by Lauren Celeskey.  Check out her blog at

I was born in August of 1987, supposedly a healthy baby girl. A few weeks after coming home I started to display some things that worried my parents. I was throwing up everything I ate and was developing a rash all over my body. My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t. My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine, just a mucousy baby. One morning when I was 11 weeks old my mom found that I was breathing very heavy and turning bluish-gray around my mouth. She took me to my pediatrician again and demanded a local hospital to admit me. My pediatrician and a nurse checked me over, again… this time they heard a murmur so finally they agreed I needed testing done. I was rushed to the nearest ER and an on call intern who looked at me first just had learned all about Congenital Heart Defects, so he knew it was most likely my heart. I was taken to get a chest x-rays and when he came back said that my heart was very enlarged and most of the right side of my heart was missing. Children’s hospital was called and an ambulance got ready to take me. Once my mom was told what was going on; she called my dad who came from work right away as well as my grandparents (my mom wanted my grandparents to bring my older brother down to see me, as she was not sure if or when he would again). My mom was not allowed to ride in the ambulance due to not enough room. They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital. My parents had been thrown into every parent’s WORST nightmare!!

I made it to the hospital and was stabilized. My cardiologist (well the one I had the first 22 years of my life), told my parents I have a Congenital Heart Defect called Tricuspid Atresia, Hypoplastic Right Ventricle (which simply means I was missing my right ventricle and half a working heart) and that I had to have an emergency heart cauterization to re-rip a hole in my heart so blood could flow better and for my heart pressures to lower. My cardiologist was kind and caring to my parents. I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added (basically formula with tons of calories/fat added) so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age! My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me it took about an hour for one ounce and she needed to feed me every hour with a syringe. I still very sick and due to a late diagnosis my Pulmonary Artery was about 3-4 times the size it should be, but could not be fixed till I was stronger (so I was very fragile). Looking at pictures you would never know how sick I was.

In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding. It was to help the blood flow in my heart and lungs until I was old enough to have a procedure called the Fontan. The surgery went well. Though it was successful in its purpose it didn’t make it any easier on my parents and family. As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well! Soon after returning home I got dangerously sick with RSV! I was taken back to Children's Hospital and admitted. I spent a few weeks recovering from RSV on lots of medication and did breathing treatments. After returning home from recovering, everything went well and my parents as well as my older brother adjusted. I was born with other medical issues, one is an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18 months old (have worn glasses almost my whole life); which was during the time in between my two open heart surgeries. Despite everything, I was a happy baby and smiled a lot! 

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Modified Fontan Palliation. It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery still a fairly new operation (about 15yrs old). This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. About a 50-60% of me surviving with my specific case was what the doctors bluntly told my parents, but my parents hung onto all positives. My parents had a lot of faith in the doctors and God that I would come out ok. I came out of surgery ok, I was alive! As far as complications that I had from this surgery, I had a chest tube issue (they had to put it back in while my parents held me down as they didn’t have enough nurses around at the time), a SVT/very fast heart rate scare where I coded, a pacemaker scare (never got one though, I'm very grateful for that) and I was put on a special diet (medium chain triglyceride diet). All things considered, I did pretty well with recovery. I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?
Post-Fontan surgery

After that second surgery I was as healthy you can be having severe heart condition or “half a heart”. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year, was on a few medications, and had a few bumps in the road, but overall was I doing really well. I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I'd hold him as much as I could. Aaron and I are very close. When I was six my mom got me into acting classes; she signed me up to the family theater in our city. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. It is something I will always remember. For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I bowled, started at age 5, which I loved and years later I ended up being on my high school girls varsity bowling team.

I was a pretty “normal” child and teenager in most aspects (I did have some limitations though) and for the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn't know). Socially I had some trouble and go teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess and was not allowed to play contact sports), but I did end up making a friend or two which is all I really needed to be happy. Even in tough times I tried to have a positive outlook and have a smile on my face. I loved to write and still do, I have always enjoyed talking, and many of the simple things in life. Unless you knew I had a severe heart condition, than you probably could not tell other than the scars on my chest. My parents were open and honest about my heart my whole life, even when I was young. They always explained things to me in age appropriate ways and only what I needed to know. My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this. Though by age 10, I knew the name of my heart condition, that I’ve had open heart surgeries, what medications I take, etc, but I just did not know the all the seriousness of it. My parents always supported and encouraged me. They always would let me know how special I was and God had big plans for me. I’m grateful that my parents never let me give up on things and gave me a pretty “normal” childhood. I’m thankful for that!

At age 14 I was diagnosed with yet another medical issue, scoliosis or Spina Bifida Scoliosis meaning I was born with a mild form of Spina Bifida (an extra vertebrae in my back and hips not aligned) that caused mild to moderate scoliosis of my back. My back is monitored, but because of my heart, not much can be done. I can get bad back pain, but I try not to have it get in the way of living my life. I had a scare at 16 when I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted.

I was diagnosed with exercise and stress induced Supera Ventricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race). Since the beta-blockers I have been lots better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can. I had my third eye surgery in July of 2008 and all went well. I’ve had one trip to the ER of Children’s in July of 2009 due to bad food poisoning. Since 2010, I've been having issues with weird heart beats and some minor heart rate issues, I wore a 30 day heart monitor in Sept. 2011 and we are going from there… but I'm still doing well and living life.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily. They remind me that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind. This CHD has impacted my personality in many ways. My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others. It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life. It has given me a motivation to help others and to always have faith. I’m thankful for my life; I’ve been very blessed in so many ways. I have two amazing parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them SO VERY much!!
Getting married!

In December of 2011 I graduated college with a Bachelor’s degree in Psychology!! I finished college just a day after getting married to my loving, amazing, and supportive fiancĂ©, Christopher. We had just a small courthouse wedding, but it was wonderful and memorable all the same. Chris is my best friend and my rock. Chris accepts me for who I am and not my heart condition, he is always by my side through anything. I’m very lucky and grateful to have him!! At the end of December 2011 after graduating college and getting married, we moved from Michigan to California (cross country in the US) for a job that Chris got. We are finally settled in and doing well. I plan on becoming a Child Life Specialist one day. I hope to have kid(s) one day and to one day write and publish my own book. Until then I will keep spreading CHD Awareness and telling my story!! My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories. I love my life and I consider my mended heart a gift!!

Tuesday, February 7, 2012

The Faces of CHD Part Seven: JOSIE

Written by her mom, Brittanie

We found out at her twenty week ultrasound that Josie had DORV. (DORV is what ?) When she was born she was taken to the NICU and they confirmed she had DORV, VSD (And this is.. ?), pulmonary stenosis, and TGA ( TGA Info ). She was stable in the NICU so they sent her home in 4 days.

At home she started turning dusky and blue but cardiology said she was ok. When she was almost 6 weeks old they did a CT angiogram of her heart just before getting discharged she started destating fast and called a code. She recovered quickly but scheduled her for surgery Monday because this happened on a Friday. She had a BT shunt placed. At 8 months old they scheduled her for her full repair. They decided to do the Rastelli procedure (Rastelli Procedure ) this didn't go as smooth as they planned and she ended up in full heart block (where the electrical impulses in the heart do not communicate).

And a week later had a pacemaker placed. Three months later Josie's ended up in the ER they found she had cardiomyopathy and was now in heart failure so they started her on milrinone and several other meds and did several procedures to see what they could do to help her. At Children's Minneapolis they decided they were going to do a right coronary artery reimplantation and bi-ventricle pacemaker to see if she recovered but she didn't. So in March 2011 her care was transferred to the U of M Amplatz Children's Hospital.
 When Josie got transferred to the U of M Amplatz Children's Hospital she was listed for transplant right away. They wanted to send Josie home because they thought she was stable. So they placed a G-tube for feeding because Josie wasn't eating and they placed a Hickman which is a permanent IV for Milrinone.

She was home for 10-14 days and was re-admitted for worsening heart failure. Josie was monitored closely and they did a work up to see if they could use a Berlin Heart as a bridge to transplant.
Josie on the Berlin Heart

She got the Berlin and 1 1/2 weeks later she received her donor heart on May 28, 2011.
I got a new heart!

Josie had complications being extubated and needed a diaphragm placation on both diaphragms. She has had several complications and is now on high flow oxygen during the day and bi-pap at night to help her breathe. And we know that she will need another heart transplant someday, probably sooner than later.
FINALLY at home after 8 months in the hospital!

Monday, February 6, 2012

The Faces of CHD Part Six: MICAH

Written by his mama, Lindsey:

This is Micah.
He is 14 months old.

Micah was diagnosed at 4 months with Left Ventricular Non-Compaction Dilated Cardiomyopathy ( Read about this form of cardiomyopathy here ) after being rushed to the PICU for pneumonia. We live in Virginia, but were transferred to the Children's Hospital of Philadelphia within a week. Micah was put on the heart transplant list within a month of being in Philly. During the 4 months that he was in the hospital the doctors worked with the medications and the help of God and all the prayers to get his little body stabilized. Micah was able to come off all the iv's, moved to an inactive status on the heart transplant list and we are home. We have been home since July and his heart function is doing well with the medication he is on. Micah is now 22 pounds and is almost walking. He loves to babble, give kisses and play with his older sister. I know God grants miracles, because the day I took Micah to the hospital back in March I thought it was his last day. God is with my little superman everyday.

**UPDATE~ Today, February 6, 2012, Micah was deemed to be too stable to think about transplant, so he was taken off the list!  YAY, Micah!  **

Sunday, February 5, 2012

The Faces of CHD Part Five: OLIVE

Written by Olive's mom, Dana.

Olive’s heart defect was discovered via ultrasound when I was 25 weeks pregnant. She was born on May 5th, 2009 at 8:40 am. Her congenital heart defect (CHD) is called tetralogy of fallot (TOF) (What's ToF? ) & pulmonary atresia (PA) .

After Olive was born, she was immediately taken to the NICU where her doctors could look over her & determine what needed to be done to save her. She was very blue. Because she has pulmonary atresia, she needed to have an open-heart surgery soon. They performed a heart catheterization & decided she would have her 1st open-heart surgery when she was just 6 days old. On May 11, 2009 they placed a central shunt, allowing unoxygenated blood to flow from her heart to her lungs. Olive seemed to recover from her OHS pretty quickly & with out any major complications!
Olive & Mama

The only thing that wasn't going well was her eating. Olive never really took a bottle. The doctors assumed it was probably due to her fast breathing. Even after her surgery, she was still breathing fast. Because of her VSD (1 of the 4 parts of TOF) blue & red blood were still mixing & getting pumped out to her body, making her 02 saturations lower than normal, causing the fast breathing, equaling difficulty mastering the "suck, swallow, breathe" pattern. We spent the next week or two trying to see if she would figure out how to take a bottle. At approximately 3 weeks old it was decided she would need a feeding tube placed (g-tube) so we would be able to take home & get her proper nutrition needed to grow. June 3rd, 2009... just 5 days after her g-tube/nissen surgery we were finally able to take Olive home!

Over the next few months, it was found that Olive was aspirating while we were trying to teach her how to take a bottle, so she was then not allowed to even try to take formula by mouth. She was put on nebulizers to help keep her lungs clear. She made a few appearances in the ER & was admitted to the hospital once for a respiratory infection. At that time it was decided it would be best for Olive to stay home from daycare, get well & come back in a few weeks for another heart cath so her next surgery could be planned. About a month later (Monday) we brought her back to the hospital for her 2nd heart catheterization. At this time they also preformed a bronchoscopy to look at her throat & lungs to see if they could find any reason for her aspiration & rapid breathing. The procedures were rough on Olive, her lungs became partially collapsed and she was not able to go the next day like planned. Since she was already in the hospital they took her down for another bronchoscopy that Friday & were able to tell us some of the possible reasoning for her eating & breathing issues. While she continued to get better in the hospital we had been talking with her cardiologist, letting him know we were anxious to get her next heart surgery done. This would be her "full repair". After talking with the surgeon, some disagreement between him & her cardiologist on how to repair her heart, the idea of going to the east coast for her 2nd OHS came up. Her surgeon was completely against the idea due to were her coronary arteries were, he assured us he would do his best to perform they type of repair we all wanted, but did have a "back up plan" if needed. On November 5th, 2009... Just 1 day shy of her 6-month birthday Olive went back to the OR for her big surgery, the "full repair".  Dr. S was able to do the transannular patch repair, this meant the repair would grow with her & there would be no need to replace a conduit as she got bigger!!! Olive currently has no pulmonary valve & will need one placed in the future, they are typically done later in life, and we were told late teens in to her twenties!
Olive has had a few hospital stays after her last heart surgery, but they have all been respiratory or ENT related. We now spend most of out time avoiding germs, playing, going to her different therapy sessions & just enjoying being at home! 

All in all, Olive is a very happy and CUTE almost-three-year-old, you would never know by looking at her that she has overcome so many serious health issues already. We are very fortunate and blessed to have her in our lives.
Olive says "I am way too cute to be in the hospital." January 2012