Tag Archives: CHD awareness week

Presenting our Valentine’s Day warrior, Reid!

Can you believe that it’s already Valentine’s Day? I don’t know about you all, but seeing the color red and seeing the cheerfulness spread in a classroom of kindergarteners and 1st graders this afternoon was enough to make me start loving “Heart Day” more than Christmas! For all of us folks who love someone with congenital heart disease, the shape of a heart and the color red have an even bigger meaning for us now. They resemble something of a much bigger meaning. Speaking of  “Heart Day”, check out this special cute package that is named, Reid:

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Now THAT’S a sweetheart for Valentine’s Day. Reid’s mom, Monica, says you’re welcome. Please read Reid’s story that has been so thoughtfully and courageously put together by his mama:

“Reid Landon was born March 29, 2012. My OB ended up inducing (03/28/2012) me due to Reid heart rate dropping while we were being monitored at my OB’s office. There were issues throughout the inducement because Reid’s heart rate kept dropping, so they would back off the inducement medication. Finally 14 hours later it was time to push, when Reid was born he had the cord wrapped around his neck, his arm & his torso. He was so blue/purple! I was totally freaked out. I was able to see him for approximately 5 minutes then I was taken into surgery to get my tubes tied. While I was gone my son & his wife, my oldest daughter & my father were with Reid. Later Reid’s family doctor came to see him & gave him a clean bill of health.

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We went home & Reid was diagnosed with allergies at 4 months of age, which I thought was weird but I trusted Reid’s Doctor so I started giving him the allergy medicine his Doctor prescribed even though it didn’t seem to help with the wheezing. Then a week before Reid turned 7 months old his wheezing got so bad it sounded to me like he had pneumonia, so I took him in to see his doctor which agreed with my diagnosis….. He sent us to get a chest x-ray to confirm & to decide if it was bacterial or viral pneumonia. We were sent home & told Reid’s doctor would contact me with the results. Approximately 3 hours later I received call from Reid’s doctor’s nurse… Who told me Reid did have Bacterial Pneumonia & put him on antibiotics and then casually she told me, Oh by the way, Dr…. noticed in Reid’s chest x-ray that he has an enlarged heart!!! (So I AM TOTALLY FREAKING OUT AT THIS POINT) the nurse still sounds like she is telling me that my son has green eyes, not that something major may be wrong with my child!!! So they get an appointment scheduled for Reid to go see a cardiologist at Primary Children’s Hospital in Salt Lake City, Utah. When she called back with our appointment information, she told me they didn’t believe there was anything wrong with Reid & that it was only precautionary they were sending him! (I AM STILL TOTALLY FREAKING OUT).

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Reid’s appointment with his Cardiologist wasn’t even a week from his “pneumonia appointment”. We (Reid, his Momma – Monica, his grandfather – Mike & his sister – Allyssa) went to this appointment. They did an EKG & the Cardiologist listened to Reid’s heart & then he sent us to get an Echo done. After 3 hours getting an Echo I started to freak out again, thinking that this seemed like a really really long time! After Echo was finally done we were moved from one room to another & then another. At which time I KNEW something was wrong. The Cardiologist finally came in & sat down with us & said, there is A LOT WE NEED TO TALK ABOUT, BE PREPARED THERE IS A LOT OF THINGS WRONG WITH YOUR SON’S HEART! My heart dropped & I felt like I was going to die that very moment. The Cardiologist was wonderful in going slowly & explaining everything in great detail. Reid’s Doctor then explained that my precious baby boy had multiple diagnosis, as followed; 1) Tricuspid Atresia, 2) ASD, 3) VSD, 4) Transposition of the Great Arteries, 5) Mild Hypoplasia of the Aortic Arch, 6) Pulmonary Hypertension. We were all in total shock. His plan at that point was to do a Cardiac Catheter in 2 days & then do his 1st Open Heart Surgery at the end of the week. We left & a few hours later I received a call from Reid’s Cardiologist saying that he discussed things with his Surgeon & they decided that I needed to bring Reid back that day to get labs done & that the very next morning at 6 am Reid would have his 1st Open Heart Surgery. Wow was I in total Shock…

We stayed the night in Salt Lake City because we live 70 miles away & 6 am is very early with the NPO issues. Reid had his Pulmonary Artery banded to reduce the blood flow going to his lungs. The surgery went very well. They called to let me & my father to go in the CICU to see Reid. As I touched Reid’s hand, he started to hold his breath due to the pain & then his oxygen saturations dropped, his heart rate dropped & Code Blue was called. We jumped out of the way while we witness all the medical staff working on my beautiful little man!! If my father hadn’t been there I definitely would have been on the floor. They had to do chest compressions & had to put him back on the ventilator. A Fellow inserted the tube in Reid’s throat. Things then calmed down so that the doctors could talk to us & explain what was going on & what to expect as we moved forward.

Reid was on the ventilator for 4 very long days & was in the hospital for a total of 10 days. Every step was scary & hard especially seeing how I’d just found out about Reid’s CHD’s so recently.

Everything was starting to be a routine with his medications & a very strict schedule to make things as stable as possible for Reid. I started looking back at pictures & researching his defects & realized if I would have been more aware of CHD I would have possibly been able to get Reid help earlier in his life. The things I noticed; his complexion was grayish; especially his lips, he would tire out would tire out while he was eating & end up falling asleep, while eating he would sweat A LOT, he would eat a lot more frequently than any of my other children, his heart beat was hard & faster than I thought was normal, & he was ALWAYS wheezing. I looked back at all the pictures that were taken the day he was born. While I was getting my tubes tied my other children were with Reid & holding him & taking pictures. In the pictures Reid was hooked up to an Oxygen Saturation Machine. In these pictures you can see the readings which ranged from 83 to 87. I was NEVER made aware there was an issue!!

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On January 17, 2013 Reid was scheduled to get a Cardiac Catheter to measure the pressures in his lungs to decide if we could proceed & have the Glenn Surgery done. The results from the Cath indicated that we were good to proceed & one of his doctors said we would probably proceed with surgery within the next 4 weeks. On January 19, 2013 in the morning I had noticed that Reid had been coughing & at this point really having hard time breathing. Fearing the worst I took him to our local hospital (very reluctant due to them not finding his CHD at birth) they tested him twice for RSV. The first test came back negative but the second one was positive & due to Reid’s Cardiac issues the transferred us to Primary Children’s Hospital. We were transported by Ambulance & admitted. Reid spent 11 days in the hospital for RSV. Due to RSV his Glenn Surgery has been pushed back 6 weeks, so that his lungs can fully heal.

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CHD week means so much to our family!! I was excited to be able to share Reid’s Story. Please watch for any warning signs & get checked if you are concerned. Reid is a huge example that NOT ALL CHD are diagnosed during pregnancy or after birth. We are just grateful that all his defects worked together to keep him alive. I have created a page for Reid for prayer warriors to see what is going on with Reid & his family: ‘My Miracle Baby Reid Landon’

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All too many precious lives like Reid’s are in danger of undiagnosed CHDs. In honor of babies like Reid and all over the world (and Valentine’s Day!) here is an excellent photo to memorize:

(to learn more, visit http://pulseoxadvocacy.com/ and http://thecorbinstory.blogspot.com/p/pulse-ox-learn-more.html)


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Presenting our 13th warrior, Keely!

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Look at this beautiful warrior! Her mom, Emily, has been so incredibly gracious to share her story with us here at Queen of Hearts. And we could not be more lucky. Once I immediately connected with her mom and saw the photos of Keely smiling, I couldn’t stop smiling! Infectious I tell you! I still am partial..but all CHD warriors are extra beautiful. Keely just proves that. Please read Keely’s story as told by her mom, Emily:

“Our daughter Keely was born with a numerous amount of complex Congenital Heart Defects (CHD) which effects 1 in 100 babies born. She was born with Hypoplastic Left Heart Syndrome (HLHS, meaning she has a single ventricle and most the structures on the left side of her heart are very small or underdeveloped), Pulmonary Valve Stenosis (blood is allowed to flow into the pulmonary artery but not back into the right ventricle), Ventricular Septal Defect (VSD, means not enough blood pumps from the heart into the aorta), Double Outlet Right Ventricle (DORV, meaning her aorta rises from her right ventricle instead of her left ventricle which is the normal chamber that pumps blood to the body) and a complete blockage of the AV canal. Keely also has 2 Superior Vena Cavas instead of one.

Keely was also born with “Heterotaxy Syndrome” which is a rare birth defect which involves the heart and other organs. The beginning of the word- hetero means “different” and the end- taxy means “arrangement.” In some cases of Heterotaxy Syndrome, the spleen may not work correctly or may be missing entirely. In Keely’s case, her stomach and liver were developed on the right side and she was born without a spleen. The doctors say that Heterotaxy Syndrome is what may have caused our daughter’s “unique heart.”

The doctors said that Keely will have to undergo about a minimum of 2 Open Heart Surgeries. The first Open Heart Surgery is called the “Bilateral Bidirectional Glenn Procedure” which repairs the top half of her heart and was done on March 19, 2012. The second Open Heart Surgery is called the “Fontan Procedure” which will repair the bottom half of her heart and is to be done around the time she is 2 or 3 years old.”

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Keep rocking that gorgeous smile girlfriend! You are a true warrior!

Presenting our 12th warrior, DJ! (post-surgery photos included!)

“My husband and I had tried for years to have a second child to complete our family.  With a few miscarriages and no other success we were about to give up when we found out I was pregnant.  I was very cautious at first, not getting myself too hopeful.  That first ultrasound when I saw that little heart fluttering away I cried, I was going to be a mommy again.  My fears of not being able to “complete the family” were gone.  Little did we know what that little fluttering heart had in store for us.   My due date was set for October 18th 2007.

My 20 week ultrasound looked normal. 10 little fingers, 10 little toes and 3 legs?  Yes, we were having another little boy!  We were extremely excited (grandma wanted a little girl to play dress up with but oh well).  I had 2 more ultrasounds to check my cervix because I had given birth to my oldest son a month early, and they were trying to prevent that from happening again.  Every time, she would check the baby make measurements and say that everything looked just fine.

October 17th, a day before my due date I went into labor.  I was expecting a very normal delivery but here is where the “fun” started.  The baby was breech so I had to have a C-section.  I hate needles so this did not make me happy.  At 9:15 Delvin James “DJ” was born, 8 pounds 10 ounces 21 inches long.   He looked so perfect that we still had no idea how sick he really was.

My heart sank when Terry, my husband, came into the recovery room and told me that DJ was in the NICU (Neonatal Intensive Care Unit).  Harrison, our oldest, had to spend a week in NICU and we were both really looking forward to having a normal, healthy baby.  That’s when he told me that his O2 levels were low and he had a swishing sound in his heart.  They were calling in a cardiologist to check him out.

4:10 pm … I remember the time so well.  A doctor came into my room to give us the news we had waited all day for.  Dr. Washington told us that the news wasn’t good, DJ had holes in his heart and his pulmonary valve had never opened.  He gave us some long name that I still can’t remember and made drawings of a good heart and DJ’s so that I could see exactly what he was talking about.  I remember thinking “please leave, I don’t want you to see what is about to come.”  I could feel my heart in my chest beating a million miles a minute as I tried to keep myself together.  He kept assuring us that it was fixable with surgery.

I don’t know if he was out of the room or not when the dam broke.  My heart breaking a little bit more with every tear that escaped.  How could this be happening?  Why my baby?  What had I done wrong this time?  In the back of my mind I still blamed myself for Harrison’s early birth.  I know I looked at Terry and told him I was sorry that he was never going to know what it was like to have a normal baby.

I hadn’t seen my baby boy except for the few minutes after his birth.  The nurses helped me out of bed and into a wheelchair so that I could go down to the NICU to see DJ before the transport team came to take him to The Children’s Hospital CICU (Cardiac Intensive Care Unit).  I couldn’t believe how perfect he still looked even knowing what was wrong.  I ran my fingers over his perfect little chest, baffled by the fact that they were going to have to mar this perfection to save him.  I asked my mom to ask one of the nurses if I could hold him.  I don’t think they really wanted me to because he was under an oxygen hood but, I think the look on my mother’s face made them change their minds about saying no.  He felt so small and so warm. It was in that moment that he was named.  Delvin was my grandfather and James was Terry’s, both lost to us within a year of each other, both fighters.  I was afraid of losing my little boy also.   I sat there with him till I physically couldn’t but, I just couldn’t leave him but had to.

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This is right before taking DJ to Children’s.

We were told that the transport team would be there at 8:00 to take him and that Terry had to follow him to fill out paperwork and get him checked in at Children’s.  They had started him on prostaglandins to keep his duct (“ductus arteriosus“) open as that was the only way he was getting oxygen to his body.  The down fall to the medication was apnea, so they intubated him for the trip.  They brought him down to my room before they left.  He looked so small on that stretcher in the incubator.  All the machines, the beeping, the looks on their faces as they took him … it was too much and I started crying.  Terry left with them and I made him promise to come back and tell me if he was alright.  At that moment a phone call wouldn’t do I had to see his face.

The next morning there was nothing I could do to keep my mind off of DJ.  I had told Terry to go to work so he could keep the time off he had for surgery day and for when DJ would come home.  I knew I was going to need help.  One of my OBs came in and sat on my bed, he apologized for not seeing this in any of the ultrasounds.  He explained that once he had heard what was going on and knew what to look for he saw it, barely.  I didn’t blame him, I told him it was fine and that everything was going to be okay.  I don’t know if I truly believed that or not but I think it was in that moment I put on my “brave face” and started making a few calls to friends and relatives.  Mom came over after seeing DJ and told me she had talked to a few of the doctors and they wanted to have a meeting the next morning.

Try as I might they would not let me leave so I asked mom to go in my place with Terry.  It was determined that DJ had 3 holes in his heart, 1 large and 1 small VSD and 1 small ASD, and the pulmonary valve had never opened.  They were calling him a Blue Tet, I found out that was short for Tetralogy of Fallot with Pulmonary Atresia (ToF/PA).  The surgeon, Dr. Francois Lacour-Gayet, was going out of town but would be back Sunday and wanted to do the surgery Monday morning.  I was relieved to hear this because I would be there with him and my family instead of being trapped in my hospital room.  Terry and my mom returned and told me “the plan” for the surgery.  They were just going to put a shunt in so that his heart could get a little bigger so they could do a full repair.  I got a call from one of the surgeons that would be helping, Dr. Goldberg, and he explained more to me what would be happening.  I then tried to talk to Dr. Lacour-Gayet on the phone but his accent made it impossible.  We all got a good laugh because of it; I would laugh later about it because I found out from the surgical nurse that he was as frustrated as I was.  One even said “that didn’t go very well.”

Later that day I would get a phone call from Dr. Goldberg, after another look at DJ’s heart with an echo they wanted to do the full repair.  They were fairly sure his heart was big enough since he was such a big boy, almost twice the size of an average cardiac baby.  I think the blood must have drained from my face because my mom was at my side in a heartbeat; she wanted to know what was going on.  So I asked if he would be willing to explain it to her so I didn’t mess it up, which he did.  So it was decided that they were going to do a full repair on his little heart and if all went well we wouldn’t have to do another surgery for at least a few years.   This was good news, finally.  Even better news, I could leave the hospital if I wanted.  With a lot of convincing from my mother, grandmother and Terry I stayed one more night.  I missed Harrison, I felt bad for leaving him so long, not that he noticed his Aunt Erin and Uncle Sean were keeping him busy.  I missed my house and my bed and real food but, I knew staying was best for my health and I needed to be strong for the next few days to come.

My Surprise that night, Terry brought Harrison out to see me.  They brought a DVD player and some movies with them.  We had dinner, watched Monsters Inc., and had popsicles. We tried to explain to him a little what was going on with his little brother.  He told us that everything was going to be fine; I kissed them good night and sent them on their way.  I only wish I could have been that positive.

Saturday afternoon I was released.  I had both of my OB-GYN’s come in and warned me about driving and walking too much and making myself too tired, both knowing very well that I was going to be stressing and not caring about my pain and comfort.  With one stop to pick up my prescription for pain killers, I made Terry take me to Children’s.  I wanted to see my baby boy that I hadn’t seen since they took him away the day he was born.  It was my first time to the new Children’s Hospital.  It was beautiful. Terry had told me that it really didn’t have that hospital feeling until you got into the rooms.  Man, it was true.  We had Harrison with us and had to get approval to have him come into the CICU ward.  The head nurse was going to fight with us till the geneticists wanted to talk to both my husband and I. I wasn’t about to leave my 6 year old out in the halls by himself.  It was the first time Harrison saw his little brother.  I remember he dragged a chair over to his warmer and just stared at him.  How scary that had to be for him.  Here’s this little person who you’ve been waiting for and he’s hooked up to all of these monitors.

The geneticists (who name I cannot remember) wanted to do a  FISH test.  He thought maybe his heart defects were due to a genetic anomaly, maybe Goldenhar Syndrome or DiGeorge Syndrome.  Neither of which either of us had ever heard of.  He said they didn’t like labeling kids but it was something to look into because of other things that went with some syndromes.  He then stated that he thought it would be Goldenhar’s just because Terry had some of the traits, an unevenness in the face.  I know I stared at Terry until it probably made him nervous trying to see it.  I did a little but nothing like he was describing.  We told him he could run his tests.

Another doctor came to us shortly after the geneticists left.  He introduced himself as Dr. Goldberg, a face to the name.  He had seen us and wanted to meet me and see if I had any questions yet.  He also wanted to know if we could come in the next day to go over “the plan” and sign some papers.  You know those silly surveys that go around that have the question “If you could have any super power what would it be?” Well right then in that moment I wanted the power to read his thoughts.  I wanted to know what he was thinking as he looked at my little family.  Was he thinking “poor people, this is going to be hard” or “Don’t worry, we’ll fix DJ right up for ya” I wanted to know.   We said our good nights to DJ and took Harrison home.

Going home, one would think it would be a joyous occasion.  I felt empty, lost, confused.  I was missing a vital part of my family.  It’s the hardest thing I’ve ever done, leaving my kids at the hospital.  I needed to eat and get some sleep so that I could feel normal again and be able to follow the conversations to come.  I think the only reason I slept that night was because of the pain killers.  I ran so many different scenarios for Mondays surgery in my head I was dizzy.  Sunday morning came and we dropped Harrison with my mom and made our way to the hospital to talk to Dr. Goldberg.  I was anxious to see how DJ had done that night.

We met Dr. Goldberg that morning in the CICU where DJ was.  He sat us down and began to explain “the plan” to us.  They were going to try to patch the two VSDs and the one ASD and try to use a third of a bovine valve to open up the pulmonary valve.  Only a third, because they hope the other parts that were still “human” would compensate and grow with him a little longer then the full bovine valve being inserted.  If it came to it they would just use the full valve.  Yet I think the worst and scariest part for me was the bypass machine.  What if his heart wouldn’t start back up? There were tons of waivers and consent forms to sign.  At one point I found myself thinking this was worse than trying to buy a car.

We went back to moms to spend some time with Harrison.  We weren’t sure what was going to happen in the next twenty-four hours and I wanted to be close to all of my support.  Harrison was going to spend the night there because we had to be at the hospital at 6:30 in the morning if we want to spend any time with DJ.

Again I found myself holding DJ until I couldn’t, but this time it was because they were taking him into surgery.  We were told the first night is the worst and that we probably wanted to stay at the hospital, so I went and got us a room for the night.  After we found our room and put some of our stuff down we went out into the waiting area where, over the next few hours we were joined by family and friends.  Ester, the OR nurse, would come out and update us when anything critical happened.   We knew when the central lines were in, when he went onto bypass, when they were piecing his heart together, and when his heart was beating again because he was off bypass.  I think when I heard that is when I started to feel calmer about everything.  DJ was in surgery for 6 hours but they were able to do the full repair.  We were told that they weren’t able to close his chest because of the pressure it put on the heart and that he was bloated from the bypass machine so they put a gortex patch over the opening and would close him up later.  Both holes in the lower chambers (VSD) had been repaired, the top hole (ASD) they had left open a bit, kind of like a pressure valve, and they had been able to open the valve and only use a third of the bovine patch, all exactly what they had wanted to do.

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Only a few hours post-surgery..the patch still present (chest open)..

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The Thursday after surgery. Chest all closed! Look at this warrior. He’s amazing!!

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All 3 chest tubes gone!

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Mommy getting to finally feed him for the first time!

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No more breathing tube! Just some good O2!

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Look at all of those medicines!

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Grandma holding DJ for the first time.

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Sponge bath and then BUSTING OUTTA THERE! Yay!

Mom was with me when I got to go back and see DJ for the first time after surgery, I wanted her to be able to see him and she had to leave to help with Harrison back at her house.  One of the nurses made sure he was covered up before we made it to his bed.  There were so many tubes and wires and machines, it made him look so small.  They had given him a paralytic so he didn’t pull at his tubes and IV lines.  The nurse asked if I wanted to see everything, I nodded and then held my breath.  I thought I was prepared but, I wasn’t.  She pulled the blanket back and I just sobbed.  Thank God my mom was with me, she got me calmed down and over that initial shock (defiantly one of those ‘I want my mommy’ moments) and we started asking questions.  I found out what all the tubes were, where all the wires were going, and to watch his tiny heart beat through the patch was amazing.  Here was the cause of all our problems beating away under a thin layer of plastic, and I could watch as I had once before on the ultrasound screen.  What a miracle and hardship one little heart could be.

Terry came in after mom left, I wasn’t sure if he wanted to see everything so I covered him back up.  When he came up to the bed he said he did want to see so I tried to explain everything to him but the nurse had to help.   I think we were all waiting for Terry to crack but he never did.  I was surprised.  The following are Terry’s thoughts in his own words.

As I was about to walk back to see DJ after his surgery I took a moment as I washed my hands, a required task for the CICU that we were getting all to use to, I prepared myself for seeing something that no parent should ever have to see.  When I first saw him, I was relieved it, the surgery, was over.  I was also surprised that he did not look as bad as I had imagined.  Don’t get me wrong, it was bad, but just not as bad as I thought it would be.  He laid there sleeping, and looked to be under very little distress.  His breast was split down the middle and spread about four inches, with a piece of thin gortex stitched into his flesh.  You could see his heart beating and lungs filling.  I remember thinking how crazy the first person must have been to look at a heart that small and say, “Hey, I could fix that!”, and how grateful I was for them trying.  It was like the calm after the storm.  Things were going to be ok, or at least that is what I was going to keep saying.  Now we just had to wait for the normal to start and get to know him.  Only five days old, and he has been thought so much.

Later everyone asked me why I never cracked.  I told them I had to keep thinking, they know what the problem is and they have a plain to fix it. It was the only thing that kept me claim.  If they would have said we don’t know what is wrong or we don’t know how to fix it, I would have lost it.  Kind of cold, maybe, but I had more than just me to worry about; I had a whole family to be there for.

That night we stayed in one of the parent rooms.  I got up a few times and went to go check on DJ.  I know they would have called us if anything bad was happening but I still had to go see him.  He was having arrhythmias (irregular heartbeats) all night long but, they had expected that.  Terry went to work the next day and I stayed to watch over my baby.  My aunt came to visit later that day and I went home with her to be with the other half of my family.

Every morning my mom would pick me up, help me get Harrison to school and take me out to the hospital since I had again, told Terry to go back to work.  Every day he seemed a little better.  We had visitors a few days but I mostly told people to wait till he was home.  I didn’t want people to see him like that.  It seemed like there was another tube gone or another drug missing every morning we came in to see him.  Thursday they were finally able to close his chest, Friday the chest tubes in his lungs came out,  Saturday the lead wires that went into his heart came out (in case they needed to shock him back into rhythm, which they never did), Sunday the chest tube in the pericardium came out.  The biggest hurdle left was to get the breathing tube out and get him breathing on his own again.  That came on Monday and I finally got to hold that little bugger again.  A whole week had gone by without him in my arms.  Next steps get him off a lot of medication and get him to eat.

He was getting better color every day, but he really didn’t want to eat.  We tried bottles and nursing.  He didn’t want either so they had to put a feeding tube up his nose, he didn’t like that.  Things were going great.  Then the day before Halloween we were told that we were going to be able to take him home, my own little treat.  We watched all the videos, had him tested in the car seat, I had the cutest little pumpkin outfit all picked out.  I was ecstatic.

Halloween morning we went to school with Harrison to see his parade and party.  I was walking on air.  Then my phone rang, sometime during the night DJ had gone tachycardic (a high heart rate that won’t come down), they couldn’t let him come home till they knew why this had happened or it went away.  I had to excuse myself to the nurse’s office at the school so I could just cry in peace.  I’m sure I scared a few people.  We made our way out to the hospital anyway.  They transferred DJ to the ninth floor CPCU (Cardiac Progressive Care Unit) where we just waited.  I felt extremely frustrated at this point.  They had taken him off the oxygen in the CICU and told me that as long as his O2 levels stayed above 87 they weren’t going to worry about it (because of the small ASD they had left).  The first thing they did when they got him in his room on the ninth floor was put him back on oxygen but no one could answer me if that was the cause of the high heart rate.  I thought I was going to pull my hair out trying to get answers.  I had been spoiled in CICU where we had a nurse around all the time and I could get my questions answered right away.

The doctors and nurses were still concerned that he wouldn’t eat.  He would just play with the bottle for a while and that was it, the rest would go into the feeding tube.  He had a certain goal he had to eat before he could come home.  He also wasn’t gaining weight so they fortified what they gave him.

November 3rd, what a wonderful day.  We finally got the okay to go home.  DJ was being discharged!  We would go home with Lasix, oxygen and the feeding tube so I got the lesson on how to change and place it.  I felt bad sticking that thing up his nose but if it meant we were going home, I would do it.   We packed up and got out of there as fast as we could.  I kept looking over my shoulder waiting for someone to come running after us saying they made a mistake and we had to come back.

When we walked into my mom house to pick up Harrison we were “attacked” by my little sister (14), it was the first time she had seen DJ.  She wanted to hold him so bad and she was so happy to finally meet him.  My brother (also 14) would only touch him with one finger.  It was funny to watch.  We gathered our boys and went home as a whole family for the first time.

We had a small fight with an infection in his incision but other than that there haven’t been any complications.   My Christmas present was a mostly normal baby, we were off all medications, he was sleeping though the night, and there was no more oxygen or feeding tube.  It was the best thing I could have asked for.

Today I sit and watch my now 5 year old boy run and play and I’m thankful for every day. His cardiology appointment is coming up at the end of the week, he will have his usual EKG and Echo done and then for the first time we will sit with the doctor and discuss a cardiac MRI and a Holter Monitor for 24-48 hours. I live to hear his laugh and love every smile I get. So we are still laughing through our journey and learning new things every day!”

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DJ with his big brother!

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Heart check-up time! Look at how good he’s doing!

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The love that these two brothers share..it’s hard to not see it!!

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pulse ox and smiles : )

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The Reeder Family 🙂

Wouldn’t you agree that this dude is a true superhero? And it’s always a show of bravery for any parent to go through such a rough time and be able to share their story. Jenifer, thank you for that! As we know in the CHD world, stories never end, they always get bigger. I love this family for numerous reasons. Both of our warriors are the same age! We also live in the glorious state of Colorado. Aaaaand we are very familiar with Children’s Hospital here in Colorado. But most of all, this family enjoys the time they have together and it shows! It’s impossible to not feel inspired by this family and what they’ve gone through.

Keep on rockin’ DJ!

presenting our 11th warrior, Kelsey!

There is just something extra amazing about this little girl. I met her mom, Jessica, through The Queen’s Facebook page not so long ago. But this is one of those connections, one of those families, where I wish I had made the connection a long time ago. Kelsey and Natalie have a whole lot in common and we can only appreciate it. From their defects to time spent post-op with their Glenn procedures to Kelsey having the same birth date as Natalie’s grandma..I’m telling you..it’s kismet. It’s completely awesome. Here is Kelsey’s courageous “heart story” as told by her mommy, Jessica:

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“Kelsey was born November 11th, 2006. She was a whopping 8 lb 2 oz and 21 inches long. She was PERFECT. My whole pregnancy Kelsey was said to be a healthy thriving baby, which couldn’t have made me happier. But at 3 days old we noticed she was turning blue around her mouth a lot. We hadn’t yet been discharged from the hospital. The pediatrician came in to talk to me and said he was going to run some tests, but he was pretty sure it was a heart murmur and definitely heart related. She was air lifted to a hospital 30 minutes away that was more capable of caring for her. Once I arrived and spoke with the pediatric cardiologist it was determined that Kelsey had Tricuspid Atresia. She would need a series of operations to survive. Her heart and lungs were amazingly strong and we were able to forgo the first of three operations.

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At one of what would be many cardiology appointments, her cardiologist told me she would need an operation once she started showing signs of lower oxygen saturation. He was right. One night after dinner I sat down to feed and change Kelsey. It was hard to wake her up. So I changed her diaper, thinking maybe she was just really tired. She woke up once she was changed, but she didn’t want her bottle. She wasn’t very lively at all. So I made the decision to take her to our emergency room. Her pulse ox was the first test and it was enough for them to say that she needed to be taken back to the Children’s Hospital. Her o2’s were in the low 60’s and she was still lethargic. We were transported via ambulance and at 3 months old Kelsey had her Glenn open heart procedure. She was such a champ. We went in on February 9th and came home on February 13th. She did so well and continued to thrive and grow for many years.

It was right before Christmas of 2009 when we noticed that Kelsey was having a hard time tolerating a lot of activity. She was now 3 years old, but was not able to keep up and run around due to her fatigue, shortness of breath, and turning blue again. We consulted with her pediatric cardiologist on the matter, he suggested a trip to the cardiac cath lab to check her pressures and if she was ready for the next surgery, the Fontan. Her pressures were great, everything was a go for the Fontan. We opted to wait until after the holidays for her surgery. It was scheduled on January 20th of 2010.

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She came through surgery well, but due to scar tissue she had developed an arrhythmia. The Dr’s assured me that it would either go away on its own, or it would be controlled with drugs and a pacemaker. I was in such denial and grief. I didn’t want her to have a pacemaker. At all. I prayed against it, I wished it away, but nothing was stopping it. On January 27th, exactly a week later, Kelsey woke up at 5 a.m. with really bad arrhythmia’s. To the point of her whole face turning blue and her holding my hand as I brushed her hair back off of her face with my hand. She was miserable and it was getting worse. Once she was stable, I excused myself. The nurse told me she needed her rest more than anything. I stayed close by her room, but not in it. I let her rest most of the day.

That evening my mother and I went down to the hospital cafeteria to have dinner. I wasn’t in a mood to eat, but I tried nonetheless. Until I received a call from her nurse. Kelsey had flat lined for 10 seconds and although her heart had started back again by itself, it was for the best if she had a pacemaker immediately. So at 7:30 that night I signed a bunch of papers for her to have the surgery. I was told that it was a high risk surgery because Kelsey had been on so many drugs in the past week that when combined with anesthesia it could become lethal to her. I was scared, nervous, and so worried. I have never in all my life cried as much as I did that night as I awaited for her to come out of surgery.

Surgical waiting rooms are never fun. The one I was in, was worse. It was a pretty good-sized room, with one wall lined with phones. Nurses and techs would call to let families know how surgery was going. They were rotary style phones, the kind with a ring that was sure to send a chill up your spine. I waited through what seemed like a hundred rings before I picked one up. It was a man named Henry calling to let me know how she was doing. He was the pacemaker tech. He told me she was doing great, that she sailed right through the surgery and they were closing her as we spoke. I thanked him thousands of times and even asked again if she was okay before hanging up the phone.

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Kelsey is now 3 years post op all of her operations.

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Being such a big kid at her many heart checkups!

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Who put those there?

She is doing remarkably well, although we are still battling arrhythmias. She has had a cardiac ablation, a cardiovert, and numerous drugs poured into her body to fight them off, but she still remains strong and resilient. She is the greatest blessing. Oh, and we got to meet Henry at our clinic appointment not long after she was able to go home. He was just as kind then as he was when he called us. He wasn’t afraid to show Kelsey how proud he was of her and how amazed he was at how far she had come.

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Kelsey with her little brother : )

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A fighter who’s kicking CHD’s booty.

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She is in Girl Scouts, and this spring she is going to play Tee Ball. My girl is a fighter. And I am so blessed that she is mine.”

What a fighter!!

Presenting our 10th warrior, Alexia!

I connected with Alexia a few years ago through Facebook and blogging. You can read her updates at her blog “Life”. There are lots of things to love about Alexia. One of the biggest things that I love about her is her ability to connect with fellow CHD parents, letting them know that it’s okay to let your child live their life. Through Alexia, I’ve learned that it’s okay for me to let Natalie run, play, skip, jump, and wrestle her brother. Life allows her to do that, despite a heart condition. I cherish my own child’s abilities more than anything because of learning this through her. Alexia is very inspiring. She’s smart, pretty, and very unique. Like all adult survivors of congenital heart disease, Alexia is not defined by her CHDs. She has been a critical part of keeping me sane with Natalie’s diagnosis. She is selfless and full of Life. Here is her story:

“I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation. It wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSDs and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done.

Screen shot 2013-02-10 at 1.32.09 PMAt six months old I had the Blalock-Taussing shunt put in.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. It was decided that I was an excellent candidate for the repair and that was the surgery I had done in August of 1990. In 1998 I had emergency open heart surgery to replace my aortic valve. I had a very rough recovery period.
In June 2005 I was told by my cardiologist that I would need a second Aortic Valve replacement. I was starting to experience symptoms that were indicative of heart failure. The doctors wanted to do the surgery right away because my right ventricular function was still really good. In the weeks that followed it was decided that we would go with a mechanical valve this time.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 7:30am I was ready and waiting to get going. The following Tuesday, just 8 days after surgery I was released.
I have had minor issues since then but have not been hospitalized for them. I have a full life with a close family and great friends. I am getting ready to launch my own photography business and I look forward to helping people capture their memories with photographs.”

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Now that you have read Alexia’s story, please visit her Facebook page right away!

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Go send some love!

She has also created a Carepage that her mom will help update starting tomorrow. There are updates pre-surgery right now, so feel free to sign up and follow Alexia’s heart health. She’s having a catheter ablation on Monday to help ease, hopefully, erase her arrhythmias. Please send love and support for Alexia. It’s been 7 1/2 years since her last heart surgery, so as you can only imagine, it’s a good reason to want this catheterization over with and have it be successful.

Presenting our 9th warrior, Eli!

As CHD Awareness Week is in full effect and photos of red hearts are splashed across my Facebook newsfeed right now, it’s becoming more and more clear that connections are being made and they are meaningful. Jessica is Eli’s mom and she has been an incredible part of the connections that I’ve been so lucky to make since starting this blog. Meeting wonderful people like her is why I do what I do and why I want to do way more. Her family inspires hope and faith (and even some humor..which I LOVE) in this confusing and overwhelming world of heart defects. And she blogs! Please visit “With Every Little Beat” and congratulate her on keeping her cool with having 2 boys AND for achieving her state’s CHD Awareness Week proclamation with the Mayor! And here is Jessica telling Eli’s story:

“Eli was born October 27, 2010 after an uneventful pregnancy. He was 8lbs 12oz, 21 ½ inches long. He had chubby cheeks and a bottom lip that quivered with his cries. Our first few weeks as a family of four were full of happiness.

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Eli’s hospital photo. : )

As time went by, there were a few things we noticed about Eli that just didn’t quite add up.  Individually, nothing was of major concern, but as we were making a list of things to talk about at his 2 month check up, the combination was worrisome.  At the doctor’s office, the first thing they did was weigh him.  When the scales showed 8lbs 5oz, I insisted the scales be zeroed and to reweigh him.  Unfortunately we got the same answer; at exactly 10 weeks old he was 7 ounces less than his birth weight. 

Something was seriously wrong with our baby.  

We initially thought it was a gastrointestinal (GI) problem because of the weight loss accompanied by some of the things we had on our “list.”  A chest x-ray was done and it showed an enlarged heart.  That could have been secondary to a GI problem or it could be a cardiac issue.  Further testing would reveal more answers.  It was decided to transfer him that night to a larger facility an hour away so we would have more availability to specialists as we worked through this puzzle.  Eli was taken by ambulance with a Pediatric Intensive Care RN, a respiratory therapist and an EMT.  Bryan and I went home to pack a few more items since we’d be an hour away from home instead of 5 minutes.  We also needed to see Zachary (our older son who was 3 at the time) before we left.

Eli arrived about midnight and Bryan & I got there shortly after.  He was stable and testing was scheduled for the morning.  Unfortunately his heart rate dropped several times in the night and it was decided to proceed with the echocardiogram at 3am.  The pediatric cardiologist examined him for a long time. Then she sat us down and started drawing pictures.  The first was a picture of a normal heart and its blood flow.  Then she drew Eli’s heart; drastic differences.

Under her recommendation, Eli was transferred by helicopter that afternoon to Peyton Manning Children’s Hospital at St. Vincent in Indianapolis.  We had heard of it and also figured she did this more than we did, so we’d go with what she suggested. Eli arrived before we did. By the time we got there he had been admitted (his third hospital in less than 24 hours!), had a bath (he threw up after the flight) and had been seen by the PICU intensivist and two pediatric cardiologists.  Another echo had been done and the doctors were ready to talk to us about their findings.  Eli was born with multiple heart defects:  Tricuspid AtresiaVSDTransposition of the Great Vessels, and Coarctation of the Aorta.

Basically our little boy was dying and our only chance was open heart surgery.  All this was on Thursday.  The cardiologists & surgeon had developed a specific surgical plan by Saturday and surgery was scheduled for Monday, January 10.

We met his surgeon, Dr. Simon Abraham the day before surgery. When we met, we all shook hands. To this day I remember the chill that went through my body as I touched his hand…the hand in which we were placing what was left of our baby’s life.

He was very thorough about the risks and problems we were facing.  The surgery (a modified Norwood) is very complicated and risky, but even more so for Eli.  We were told most babies with his defects are diagnosed during pregnancy.  The few that aren’t usually have problems at birth and are diagnosed within hours of delivery.  The longest anyone we spoke with could remember a baby surviving at home before being diagnosed was 5 days, and medical personnel were amazed at that.  Eli was 10 weeks old.  They couldn’t believe he was without symptoms for that long.  You would think that being a little older would be an advantage before surgery, but not in this case.  It was actually complicating things because his heart had worked wrong for so long and was so enlarged.  His condition was rapidly deteriorating.  There were major differences between the Eli we saw in Indy from the Eli we had at home just a few days prior.

Zachary was with us for a few hours on Sunday and gave Eli (and us!) lots of kisses.  Then he was taken back to Washington and we spent the night saying goodbye to our baby who was still so perfect in our eyes.  Dr. Abraham had said there was a 1 in 3 chance Eli would not make it out of the operating room. Of course we were hoping & praying for the best, but we had to prepare ourselves for the worst.  Even if he made it out, we were told he’d be on ECMO, a machine that acts as his heart and lungs and pumps his blood for him so his organs can rest.  Our prayers were beyond answered when Eli made it out of surgery & was NOT on the machine.  His heart was beating on its own.  He was on a ventilator and had 493,271 tubes & wires attached to him, but we didn’t see any of that.  We only saw that perfect baby boy whose chest was moving with his own beating heart.

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Hours after Eli’s Norwood procedure. We were so happy he was alive that we barely saw all the equipment for our sweet little baby.

He was off the ventilator by Thursday night.  He was out of the PICU and in a regular room eight days after surgery.  We left the hospital exactly 3 weeks after he flew there.  Our original expectation was to be in PICU for 3 weeks.  I guess Eli didn’t get that memo!  The only “complication” was that he didn’t want to eat.  He only wanted his pacifier.  We had to feed him through a tube that went into his nose, down his throat & into his stomach.  Bryan & I changed that weekly for a while, but opted for another surgery in February to place a feeding tube directly into his stomach.  That was a tough decision for us at first, but now we know, without a doubt, we did the right thing. 

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Eli being held by Cody Zeller (current Indiana University big man) after Cody’s high school team won regional his senior year.

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Feb 11, 2011, a few days before surgery to place his feeding tube. The nurses always talked about how “laid back” Eli’s demeanor usually was. He’s the only 3 month old I’ve seen lay with both hands behind his head and ankles crossed.

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September 7, 2011 a few days after Eli’s Glenn surgery.

Eli’s second heart surgery was on September 1, 2011.  That was his Glenn or Hemi-Fontan. Eli was so much healthier going into this surgery and, of the three he will require, this one is the “easiest.”  The risk of death was estimated to be 1-2%.  Of course we were still worried, but also felt that he was as ready as he could be for it.  Again, he did wonderfully.  He was off the ventilator 12 hours after surgery (actually a little longer than they had estimated he would need it).  He did have some fluid on his lungs, but that was taken care of by medicine so we didn’t have to place a chest tube to drain it.  His heart rhythm changed during surgery, so a temporary pacemaker was placed while he was in the OR. Eli’s heart was in a junctional rhythm.  During his recovery, he would return to a junctional rhythm every time the pacemaker was turned off.  It’s something one can live with, but it’s not ideal, especially for a baby with only one working ventricle.  As of now he’s still in a junctional rhythm. The only way to fix that is with a pacemaker. Overall his recovery from the second surgery was great.  Surgery was on the 1st and he was home on the 9th.  It would have been sooner if not for the heart rhythm issue.  

Later this month, Eli will have another echo and EKG to determine when his Fontan completion will be. His oxygen saturation is consistently in the mid 70s these days and he’s been steadily gaining weight. Right now we’re guessing his surgery will be in the spring or possibly summer 2013. He will have the pacemaker placed at that time as well.

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Eli’s 1st Birthday photo! Yea, we didn’t know if we’d see this day or not and here we are!

To look at him, you’d never know what he’s been through. You’d never know how special his heart is. You’d never know how many hours of physical, speech, and occupational therapies he’s had because he’s now walking, talking, and eating like most other two year olds. You’d never know how many people and prayers it’s taken just to have him with us today. If you saw him today, you would see a chubby cheeked two year old who adores his five year old brother. You’d see a beautiful brown eyed boy with an infectious laugh and feisty streak a mile wide (we think that feistiness a big reason he’s done so well!). You would see Eli, not his defects. But believe me, they are there.

Eli’s defects are not correctable. The goal with these three surgeries is to make his heart as functional as possible for as long as possible. We are buying time. He will probably require a heart transplant at some point, which brings along a whole new set of concerns when/if that happens. We’re hoping for more advances in the field of pediatric cardiology that would allow for other options, thereby postponing or eliminating the need for a transplant.

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Receiving the Proclamation for CHD Awareness Week from our mayor!

It’s been a quick two years for us, full of stress and tears, but also full of achievement, growth, renewed faith, and lots of learning. These precious boys are our life.  It’s surprising and comforting how our love for them continues to grow…..With Every Little Beat……”

And now, hope over to Eli’s freshly pressed Facebook page! It’s called: Eli’s MVPs! How cute is that?? Let’s spread CHD awareness like crazy and help to support this loving family!

Presenting our 8th warrior, Owen!

741151_149094351909337_1110414223_oOh Mister Owen, you make our hearts melt. Is it okay if I nibble your cheek? Ok, I won’t but I want to! Not too long ago I came across this cutie on the Facebook. Immediately, I thought “Why are all of these battling CHD warriors so adorable? They seem to be the best looking kids. Maybe I’m just partial.” Maybe I AM just partial and I don’t care. Because look at those eyes! Blue as they ocean, they say. That face! This warrior is incredible. Here is Owen’s story, bravely told by his mom, Cassie:

“Kevin [Owen’s daddy] and I went to grade – high school together. We started dating my Junior year and Kevin’s Senior of high school.  Kevin asked me to marry him in May of 2009 and July 9, 2011 we were wed.  We decided we were going to not really try and not really prevent after we were married and three short weeks later, we found out we were pregnant with our little Owen.  The first trimester was rough, I was on and off pelvic rest because of bleeding and we were trying our hardest to keep it a secret until at least the 12th week, although I don’t think we were very good at that!
Then came time for our 20 week anatomy ultrasound, that’s when we found out we were having a boy.  The tech couldn’t get a good view of Owen’s heart, which we didn’t think anything of at the time, so they scheduled a second anatomy ultrasound for about a month later.  Our second ultrasound came around and they still couldn’t get a good view of his heart and referred us to Dr. Hayes, a high risk OB/GYN in Green Bay.  Again, we weren’t too worried, no one had said a word to us about anything looking different, however looking back we now know that “we aren’t getting a good view of baby’s heart” was code for “I can see the heart, but it isn’t normal.”

A week later we met with Dr. Haye’s and had a third anatomical ultrasound. We had three different techs come in to see what was going on and the last one brought Dr. Haye’s in.  So here Kevin and I are sitting in this little dark room while my stomach was being probed and guked up by ultrasound gel hearing the words “unusual”, “that’s strange”, “abnormal”, “stenotic”.  Our panic level rose a great deal and I began to freak out asking if something was wrong with our baby.  Immediately the doctor straightened up and the tech stopped and started cleaning up all the disgusting goop she and two others lobbed on my abdomen.  Dr Hayes said “we will discuss the results in my office in a few minutes” and he left the room. The tech kept sighing and giving us looks of pity until a nurse came in and brought us to a little room with an overused leather love seat and an empty book shelf.

I was so upset and worried that I couldn’t think or see straight, what was only 5 minutes of waiting seemed like 5 hours.  When we were summoned to his office he had this plastic model of the heart and he said “your baby has a hole in his ventricular septum and will need open heart surgery” It was like a foreign language, I had no idea what he was talking about. He continued to go on about valves and ventricles and blood flow, but I was not processing anything.  Then he said they couldn’t do anything for us there and handed us a little pamphlet from Children’s hospital and their Fetal Concerns Program and told us they would call and have us enrolled and someone would call to schedule an appointment for a fetal echo and an ultrasound.

It was three weeks before we went down to Children’s hospital and those three weeks were full of buckets of tears. We finally received some useful information and hope after going down to Children’s.  We were told that they have a very low infant mortality rate in surgery and that he was going to be at the best facility in the mid west for a congenital heart defect of this stature.  They told us that Owen has Tricuspid Atresia, transposition of the great arteries, and hypoplastic right heart syndrome.  Owen is an infant who was diagnosed in-utero with Tricuspid Atresia with a Transposition of the Greater Arteries. Tricuspid Atresia is a Congenital Heart Defect in which the Tricuspid Valve doesn’t form causing the right side of the heart to become under-developed. Transposition of the Greater Arteries is when the Aorta and the Pulmonary Artery are switched. We met with neonatalogists and pediatric cardiologists once a month  and we also had weekly anatomy ultrasounds and biophysical profiles until Owen was born.

Since we live an hour and a half away, they recommended that I come and stay with family.  I went down to Milwaukee to stay with my Aunt three weeks before my due date. Kevin stayed at home to work.  I was still having my weekly bpp’s only at Children’s hospital. We scheduled them for every Friday so Kevin came down the first Friday I was there. They did the ultrasound and the Dr. was concerned about not seeing much amniotic fluid so she asked us if we could come in on Saturday morning(they are actually closed Saturday mornings so she had to let us in).  She did the check and looked at me and said ” You are having a baby today!”.  HA. Yeah right. Owen is so stubborn that he didn’t make his entrance for 39 hours! And by c-section too! As soon as they pulled him out I asked if I could have a cheeseburger. The whole not being able to have food thing for almost two days was horrible.

Owen was born on April 2nd, 2012. We saw Owen for about a minute after he was born and they took him down to the NICU and stitched me back up and sent me to recovery. After an hour in the recovery room, the nurses brought me down to the mother and baby unit so I could finally get some rest.  It was unsure when Owen was going to be having his first surgery until he was properly examined and given an echo.  It was decided that he would have the Norwood [procedure] at 3 days old. In the Norwood procedure they place a shunt between the Aorta and the Pulmonary Artery. I was still in the hospital, so we were able to hang out up in my hospital room instead of down in the waiting room for 8 hours. Everything went smoothly.775608_156230881195684_818991560_o

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Owen spent the first month and a half of his life in the hospital and didn’t return (except for appointments) until he was almost 5 months old for his Glenn procedure, which was on August 28th, 2012. We were in the hospital for 5 days and we got to go home! Since then we have been enjoying home life!”

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From Owen’s Cloud (his Facebook page):
Screen shot 2013-02-08 at 6.23.23 PM“Owen’s parents, Cassie and Kevin Krajnik, have been so inspired by their son that they have decided to make Owen’s Cloud a non- profit organization and raise money to donate to Children’s Hospital of Wisconsin, Ronald McDonald House, and to create care packages for families that are in the CICU at Children’s.”
You can also read about Owen’s story and updates about this adorable warrior at:
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