Since Natalie was diagnosed 3 years ago with a serious heart problem, we did our best to filter out any negative and scary stories about other families. Once I read from a support “buddy” who had lost her child to CHD on my old Myspace page that said “Natalie may not make it..you have to accept that.” I don’t think that she was trying to be mean and clearly she was going through a really tough time..but that wasn’t what I needed to relate to at that point. I needed something other than talk about how my child will die. Death was something I acknowledged as a possibility and to this day I still have to, but I really needed stories of survival..or at least those going through exactly what I was going through…what Natalie was going through. Because let’s face it, it’s not just all about me. At all.
It’s horrible that you have to filter it..but to stay sane and strong for your child and for yourself, you have to surround yourself with something you can assimilate with.
We needed to somehow positively focus on our child..our child who was like a ticking time bomb every day for 5 whole months until she received her first open heart surgery- the Glenn Shunt.

Before Natalie had her first repair, we struggled to feed her. I remember sitting for hours getting her to drink an ounce of formula. In the middle of feeding she would just fall asleep and seemingly have no interest in eating. I remembering spending countless hours documenting her feed schedule, crying, and just feeling so horrible that my new baby was so tired, and so tired that she couldn’t eat. I didn’t blog about it. I didn’t talk much about it. I was way too scared to freak everyone else out. We mentioned some slightly unsettling aspects of what was going on and my mom-in-law called worried that Natalie was dying. Neither Rick or I could scare anyone.
I pretty much just focused on the positive with this blog and tried my best to not compare Natalie to James as a newborn. I was quickly learning how different they were and coping with that. Let’s face it, we were extremely lucky to have first experienced a “heart healthy” baby.

And then one day it all came together.
As soon as we were so scared and worried and desperate for answers, every doctor (and many of them have come and gone for sure) helped us get through it. They helped us prove that there were reasons behind our worries. We weren’t going crazy. As soon as everyone noticed a dip in her weight and received her heart diagnosis when Natalie was about 3 weeks old, we increased her caloric intake which was more powdered formula and less water. As with that, our cardiologist noticed that she arched her back when she fed. “She has acid reflux”, our Hopkins pediatric cardiologist stated and quickly sent us home from a heart checkup armed with a prescription of Zantac. So, there were 2 reasons for Natalie’s strange eating habits. And sure enough, not long after beginning her medicine, Natalie was still a sleepy eater, but she was a chunky sleepy eater. She packed those ounces on fast and everyone, especially her daddy and I, were so SO happy. I couldn’t keep up with her growth spurts, but it was a joy to worry about getting her new clothing at the last minute.
Every weekly weight and pulsox check up until her 4th month went well. She was growing and growing and her oxygen saturations stayed in the low to high 90s, which was always remarked as “amazing and interesting” by our Hopkins team. To be honest, I’m still blown away by that too. When we were close to finally getting fitted in for her Glenn Shunt operation, it came almost too late. Her blue and purple spells were so frequent and once again, she was struggling to eat. But out of all of that, Natalie skipped the BT Shunt altogether and it was a surprise to everyone. Because you never know when that bomb will explode and unleash some serious trouble. Natalie’s heart condition carried on without much of a hitch but at any time her ASD could have closed and Natalie wouldn’t be with us. The Atrial Septal Defect that usually comes standard with Tricuspid Atresia needed to stay open for her to survive. Granted, she was so closely monitored that something detrimental to happen was less of a chance, thank god. But there was still a huge chance that she would have suddenly passed away.
I don’t like to talk about that. I hardly ever talk about that. I hate it.

No one wants to even think about the possibility of a major organ inside of their child suddenly ceasing to work. We didn’t mention it much to our family or friends because to us, death wasn’t going to be an option. We were going to fight with every tooth and nail to make sure that Natalie would be okay. Sadly, many parents do that and still lose their child. That’s why this battle with heart defects is so complex and leaves you a bit powerless. The weight of your child’s health rests on your shoulders and you have no idea how it all will pan out.
Every time I look at Natalie I see a miracle. I see a kid who, yes has a life expectancy that’s uncertain, but so does every child– heart healthy or not. It’s easy for me to say that. I know. My child is alive and has handled everything she’s been put through with no complications. Why my child is one of those without any complications I don’t know. I just can’t feel guilty for that anymore. I just can’t.
Most parents who endure the long road of severe CHD with their child (or children) are supportive to us no matter who we are or who our child is. There are some, however, that don’t want to have much to do with your support if your child doesn’t have an almost identical heart problem and that’s what makes me the most sad.
It can be a slightly discriminating world out there. I’m sure the same goes for those looking for support for their child battling cancer.
“Oh, your child has skin cancer? Oh..well mine has brain cancer, therefore you don’t understand.”
And you can’t really get mad at people like that. You just can’t because most people understand that a kid with cancer of any kind is ..well… A KID WITH CANCER..dear god. Plus, how we all cope with such a severe disease can have anyone unintentionally offending others.
Most do not care one tiny bit if your child has HRHS (such as Natalie) as opposed to their child battling HLHS. Most do not hold it against you that their child was in the hospital recovering from open heart surgery for months compared to my child that spent almost a week. Most heart parents don’t mind chatting with you if your child doesn’t need a heart transplant even if their child needs one. As a matter of fact, many parents (with me included) with be right there along with you celebrating each milestone to recovery and staying healthy..well as healthy as any heart kid can be. An RSV or flu free winter for a CHD kid, alone, deserves a celebration.
A kid with any type of CHD is.. well.. A KID WITH A CHD. I completely “get” that some heart defects are technically more severe than others. I totally understand that some kids need more surgeries and medication than others. But to be discriminatory in your support system is beyond my comprehension at this point.

Parents who have lost their child are in, what I like to call, across that “acceptable” divided line. They are across that line because they are dealing with something so severe and life-altering that no one should say they understand unless they have lost a child, too. I can’t completely relate, but these parents don’t want me to because it’s so unimaginably difficult and this is a guess..but I think the last thing they’d want to hear or read about is another little child passing away in another family. There’s such a deep level of respect that I have for heart parents who have lost a child..that it’s hard to measure or even put it into words.
I want to hug every one of those parents so bad…
When I hear of another child passing due to CHD complications I just can’t bare it. I can’t stop thinking about that family and I do my best to pray for them, regardless of how “non religiousy” I am.
I can’t ever say that I completely understand what they’re going through. But what still brings us all together is that we see how scary the CHD world is and in reality, we are all in this together. If we don’t do that for ourselves, we have to do it for the kids.

I can’t ever apologize for how well Natalie has always done. I just can’t and I definitely won’t. She is a small child born with a complex heart that she didn’t ask for. Every open heart surgery..every heart catheterization and every test that she’s had deep anxiety over and still endured has brought her to where she is today. Alive, kicking, and as feisty as ever.

The other day, I once again, felt that kick in the gut.

In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.

So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt’s file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can’t go to that base.

Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.

The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.

Since I always feel the need to read every report I’m ever given, I decided to read this one too.

I read through Zachy’s. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.

I then went to Natalie’s. Her diagnoses read TAPVR, <i> and </i>Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.

So here’s where I felt the kick in the gut….we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won’t. But the fact that it was written in her records, it just makes it that much more real.

I’m sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.

Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It’s just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.

I cross-posted this to my blog.

It is fairly common for children to have a security blanket of sorts. Now, this doesn’t need to be a literal blanket ala Linus, but can take on many forms such as a stuffed animal or other keepsake.
I started off with a blanket, but due to a Grandmother who thought “out of sight, out of mind” cold turkey was the best method to break a six year old out of a thumb sucker habit, I had to switch to stuffed animal. (Totally didn’t work, Grandma. Old school child psychology FAIL!)

Specifically, my yellow Puffalump bunny who my mom officially dubbed Boo Boo.

Boo Boo with her hospital bracelet

I tried to give her a proper name for when the nurses and doctors asked, but Boo Boo always stuck.

This noble, stuffed bunny was dragged everywhere I went – sleepovers, doctor appointments and surgeries being her most needed moments of comfort. I never went a single night of my childhood without her either closely hugged to my chest or as a makeshift pillow under my head, her ears as a substitute for my long, lost blanket.

She was there with me during cold echocardiograms, annoying EKG’s, painful IVs, obnoxious student doctor visits and those frightening moments between being wheeled away from my mother into the operating room and officially under the anesthesia.

When I woke up from every procedure and operation, Boo Boo was right there next to me. I wouldn’t know until I was twenty-two that she was never kept in the OR with me (note to parents: Please don’t tell your kids. It’s easier to believe than it is to know).

Over the years she has needed a few surgeries herself – stitch-ups and patches, and years of love has given her a permanent cannot be washed worn look. Since my last major surgery in 2004, Boo Boo has enjoyed a peaceful retirement, sitting quietly on my pink bedside drawers next to where we sleep at night.

I put on a brave, loud and fairly obnoxious front as a child, but part of the ability to do so was having my bunny clutched tight next to me, providing comfort, love and security.

Gabriella is our Heart Baby.  She was born 3 ½ years ago with TAPVR, a condition in which the pulmonary veins instead of attaching from her lungs back into her heart, attached to her liver.  She was misdiagnosed at birth, and not diagnosed until 3 weeks of age.  We almost lost Gabriella because of this misdiagnosis…her oxygen sats were only 30-40% when she was finally admitted to the PICU (located 2 hours from our home) and she crashed and had to be intubated just 7 short hours after arriving at the hospital.  She had emergency surgery within 24 hours of being diagnosed, which lasted about 11 hours.  When she was finally brought to the ICU after surgery, her heart was too weak to beat on it’s own and so Gabriella remained on ECMO (a bypass machine) for a couple days while her heart recovered.  She spent 6 weeks in the hospital recovering from surgery.  She suffered from severe Pulmonary Hypertension post-surgery, in addition to developing Pneumonia and a Chylothorax.  When we finally took her home we were told she would need no further surgeries and we looked forward to a “normal life”.  But God had other plans.
Gabriella was home for only 6 weeks after discharge, and at her first outpatient check-up was found to have Post Repair Pulmonary Vein Stenosis.  The Pulmonary Veins that had been attached to her heart had closed off from scar tissue in the veins and she had no blood flow to her left lung.  Another complete repair was done, and due to inflammation found in her heart, Gabriella was given a 50% chance of continuing to have her veins close off and for it to be eventually fatal.  We were told to “hope for the best but prepare for the worst”.  Again post-op, Gabriella developed Pulmonary Hypertension, Pneumonia and a Chylothorax.  She was discharged after 3 weeks in the hospital this time, and a residual ASD (hole in her heart) was left to protect against future Pulmonary Hypertension.

Gabriella’s second repair was a miracle and her pulmonary veins remained open and flowing!  She did well in the coming years, despite oxygen saturations that were always in the low 90′s or high 80′s.  By age 2, she was seen on Echo to have a severe narrowing of her Superior Vena Cava that needed to be fixed.  When a pre-op cath was done, it was found that the patch from the previous repairs had given way.  In addition to the severe SVC stenosis Gabriella also had a large ASD, blood being rerouted out of the heart that should be going in through the Azygos Vein, and blood was flowing into both Atriums at the same time.  Although Gabriella’s heart was “a mess” as the surgeon called it, she was showing no symptoms other than the slightly low oxygen levels due to the “rerouting” her heart had done on it’s own.  A repair was done in April 2009, and was successful and Gabriella now has normal oxygen levels.

Unfortunately, because of having so many surgeries in the area where the sinus node is, Gabriella’s sinus node (the heart’s natural pacemaker) was damaged and her heart rate continued to slow.  Her heart and liver were enlarging and her pulmonary pressures were increasing.  Gabriella had a pacemaker implanted in Dec. of 2009.  Because of her size, she had to have another full sternotomy and the pacemaker was implanted near her stomach.  Today, Gabriella is the happiest child you’d ever know.  She has boundless energy and surprisingly, except for getting shots, she seems to enjoy going to the Hospital and for Doctor Visits.  She climbs on her Cardiologists lap and asks her to read her a story and always charms treats or some toys out of the nurses.  This is not the path I expected to take when she was born, yet it has now consumed me and I am working on starting a CHD support group in my local community.  You can follow our adventures over at www.reachingmylimit.com .

It’s been 6 months this week since Samuel’s aortic stenosis was diagnosed and he had his cardiac catheter. Thinking back to that week I really feel we’ve all come a long way and emerged the other side of the big scary cloud we were stuck under.

There was a time when I felt his heart defect heavily weighed on my mind and I never thought I would be able to ‘forget’ it and get on with my life. It was a very lonely time but I’m genuinely in a much happier place now. Samuel’s health is very good which has helped. The uncertainty of the future is still there but I can put it in perspective and its at the back of my mind. I know his valve replacement will be a difficult time for us but I am able to forget about that anxiety for now and will cross that bridge when we need to.

I’ve met many new people and been very thankful that the heart parent community on the internet is as strong and big as it is. Whatever the anxiety – however big or small – there has always been someone who has been through the same and can offer some help.

I’m now busy making plans for the future and feel clear about the direction I’m going in – and I will get there regardless of what Samuel’s aortic valve decides to throw at us!

Happy Father’s Day to ALL Dad’s out there!! This is the first time I have ever posted here. I am having a heck of a time gathering my thoughts about the post I’d like to leave…

I am Sevanna’s Mom Ricki and I do my best to advocate for her and everyone suffering from the effects of CHD. I have a page on FB for her, a blogspot blog, a caring bridge site and even an official webpage : http://www.Sevannasstoryofhope.webs.com PLEASE JOIN!!

But my post today is not really about me, its about today and the people it impacts and HOW it impacts them, especially the creator of this site Levi Beers. Levi means the world to me, to Tracy & Aiden and hundreds & hundreds of other people. He is one of the most powerful & inspirational Daddy’s I have ever been blessed to know!!

Before finding out about the Angel community, Special needs children community & CHD community on facebook I felt very very alone. I have lots of good personal friends but only a couple people who knew & truly understood my journey and pain about my daughters condition.I dont even quite remember HOW I found the CHD community a little more than 2 months ago, what I do know is that I now can not live without it. I have met SO many amazing people and formed very tight bonds & friendships. I have laughed, cried and vented with people that TRULY understand what my unique fight is about, why I push for answers for my child like I do, what it means to live this challenge of a life everyday ALL day, and even as an Angel parent the fight and the life doesn’t stop when your precious Miracle has been called home to God.

Today I want to praise the men out there that make a world of difference to everyone they can.. Levi, Ben McCormick, My Dad, My husband to be Nathan.. I love all of you so very much. You guys touch others with very little effort and affect people forever and today is about wanting to spread that ripple effect for you…

If a prayer, a thought, a hug ~ anything can lift your heart, your spirit & make you smile, I want that for you guys. For you give that to me and others and so much more…There just arent the ‘right’ words.. Today isnt just any old day. Today is the day where we remind you how lucky we are to call you friend.. lover.. husband and most of all Dad. All of you are in my heart.. May you all have a loving, peaceful, gentle day

Today May 6th in 2007 I did not realize Khloe had multiple heart defects. Today was one of the scriest days of my life, I got up to feed Khloe after her crying all night (little did I know she was crying because her heart was killing her) and went to her bassinett around 4:30-5 am to feed, she was gasping for breath it was the worst sounds I have ever heard in my life I could never explain it other than I now know that it was blood filling her lungs and she was gasping for air suffocating on her own blood from her heart backing the blood through her pda, I remember how cold she was like ice and her color she was blue, I called my mom that’s all I knew to do I was in shock and I know mike was too. I know all I could say to my mom was she is so cold she is so cold. My mom had my dad drive me to the hospital at the time I don’t think mike or I were thinking and mike went to work, we ended up driving to the ER and they looked at khloe and got the specialized doctor that had done her internship at children’s and one look at Khloe and she knew something was wrong but what? Thank you Dr.Ferguson for realizing that it was her heart, Dr. Ferguson said that thanks to my motherly instinct to take her in soon rather than later was what saved her, to tell you the truth I think her PDA not closing let us know something was really wrong otherwise I think she would have died in her bassinet that night. I thank all of the men and women that saved my daughters life, not myself I should have realized something was wrong way before that time and taken her in when she was crying that evening. I still to this day feel horrible that I didn’t realize something was wrong we both had knew it in our gut feelings before she was born that something was happening with her that wasn’t right. *am we were flight for lifed to children’s that was the longest drive I have ever had in my life, the nurses kept Khloe alive in the ambulance but she was not stable until May 9th and that is when she finally had her surgery but we will get to that day here soon. I remember engorging in the ER and had nothing to pump with me, I had no choice I had to pump while I watched them put lines into khloe and try to save her life. I remember seeing the lactation consultant that I had when I was in the hospital and just losing it, she asked me why I was here and all I could say is my baby is really sick and just breaking down after that, She got my a pump kit and a pump for the er and I pumped right there a few feet away from Khloe at that point she was already on a coma. The lactation consultant was wonderful stayed with me to help me get the pump set up and I remember saying to her I guess I should just throw this milk away I had nothing else to do with it she said NONONONON and ended up going and looking for an ice pack and a lunch bag I still have that lunchbag. Khloe got to Children’s and I waited for hours and hours to see her they said maybe an hour they didn’t realize I was her mother. When I went back to see her I coudn’t believe my eyes she was bloated and yellow and purple and not breathing on her own and just not what I had ever expected to see, she was really really sick and all I could do was look at her and hope she came out of it. Our journey had begun and it was not where I expected to be. Khloe was sterile so I couldn’t touch her and my parent’s stayed with my until mike got there which was around 9pm he got stuck on a job and had no way of getting there I kept him updated but I don’t even know what went through his mind I can’t imagine having been in his shoes through this he had a very hard road to endure and I thank him for being so strong and supportive and woking when we needed him to most even when he couldn’t be with us. He was and is my compassionate and loving husband that has taken care of us through everything. So on this day in 2007 we learned the hard way about Congenital Heart Defects and it changed us forever.

Hi!  Let me introduce myself.  I’m Dylan’s mama, Emily.  So nice to meet you!  I’m a full time working mom, loving wife and advocate for CHD awareness.  I never even knew what a CHD was or how common it was until March 11th, 2008…the day Dylan was born.  This is his story…

Dylan Blake weighed in at 5lbs. 11oz. and was almost 18 inches long (a little guy!)  We had no complications at all during my pregnancy and he was born one day before his due date via c-section.  At 5 hours old, he started looking a little blue and the docs could hear a heart murmur (oh, how many times have I heard this similar scenario since then from other parents!)  Within the next hour, Dylan was down in the NICU receiving prostaglandins through what was left of him umbilical cord and I was stranded in a hospital bed being told by the neonatalogist and cardiologist that Dylan had Tetralogy of Fallot and would need surgery soon to help his heart.  My initial reaction?  Confusion and nausea.  My husband is a scientific-kind of guy so he wanted to know what exactly theywould need to do for Dyl’s heart and all I could say was, “please just fix my baby’s heart.”  I remember the neonatalogist putting his hand on my shoulder and telling me that I was very brave and asking if I was okay.  I didn’t cry initially, which I think worried some people (Dyl’s grandparents especially).  The utter shock was consuming and I immediately felt the need to be brave for my baby.  Dylan’s variation of TOF included a rather large VSD and pulmonary atresia–no valve had formed at all. 

2 days later, Dylan and I were transported to Riley Children’s Hospital and the next day he underwent surgery for a BT shunt.  He did so well…he was so strong which allowed us to be strong too.  I felt so helpless as a mother.  I couldn’t do anything for him except go to the nursing rooms to pump every few hours where I could go cry and release all that I had been holding in.  I wouldn’t allow for myself or anyone else for that matter to be sad in Dylan’s presence because I had so much faith that he would pull through and that he needed as much positive vibes and prayers that we could give him.  When Dylan was 10 days old we got to take him home.  Before his birth, I had anticipated the moment of bringing him home for the first time and it was even more emotional than I could have ever imagined. 

Dylan did very well once he came home.  Trying to calm him when he cried always proved to be stressful for us.  He would start turning blue, sweating and would get a glazed look in his eyes.  Luckily, he never passed out but there would be plenty of times where we would cry right along with him.  He never took a bottle very well, and although he was always on the very low or not even on the charts for his height and weight he did follow his own curve up which meant he was growing and would probably just be a smaller guy.  Developmentally, he was hitting all of his milestones physically and socially so that was reassuring.

His O2 stats continued to drop, and we opted for surgery when he was 8 months old.  His levels were ranging between 58%-62%.  On the day of his 8 month birthday, Dylan underwent open heart surgery.  It’s hard to prepare yourself to see your baby after surgery.  However, it’s a moment I’ll never forget.  8 hours earlier before surgery, he was blue and his O2 levels were 58%…after surgery he was pink all over and his O2 levels were at 100%.  It was an amazing moment and I remembering crumbling at his bedside and holding his pink feet and just sobbing.  He did so well during surgery.  He came off of bypass very well and had no ventilator.  They were able to patch up the VSD and the opened up his pulmonary valve. 5 days after surgery, we all got to go home! 

Our heart journey has completed changed the direction we were headed in our lives.  Since Dylan’s birth we have been volunteering and speaking on his behalf for the American Heart Association and this past February we started an Indianapolis chapter of Mended Little Hearts.  It’s been very humbling to say the least to meet other heart warriors, some heart angels and their families.  I’m so thankful to have a community of CHD advocates, parents, shoulders to cry on, etc.  Dylan just turned 2 last month and is a spunky little boy who shows no signs of slowing down. He’s the toughest person I know and has made me into the type of person I didn’t realize I wanted to be.  He will require another surgery as a young adult to put in an adult sized pulmonary valve and in order to ensure that this surgery will be less invasive and a success, we’re trying to raise funds for CHD awareness, research, education, etc. 

Thanks for taking the time to read Dylan’s story and sharing your stories!

SO I should be excited and happy(and I am) that Khloe is here celebrating her third birthyday on May 4th but my mind goes back to those last few weeks of my pregnancy and the things that I was soon to learn. As the time approaches I think if her being flight for lifed and literally dying in my arms. Daddy wasn’t there but my dad was he watched me crumble he tried to help me keep it together and for that I thank him. I remember watching them shoving things into her umbilical cord and her being gone and not looking at me anymore. I remember not feeling any of the pain from the c-section I was in to much shock to think about myself and from may 9th on I don’t think I have ever thought about myself the way I did before and probably never will. I remember Mae at the front desk at Children’s Denver thinking I was the sister or family and me finally after four hours of waiting to see my daughter having the thought to ask if I could finally see her and her response being I thought you were her sister or something. I remember going into Khloe’s little room and her yellow jaundiced body bloated and sick, but I knew she was in good hands there was nothing that I could do but watch as they did everything to save her. I think of daddy finally get there at 9 pm and thank goddess that he wasn’t there to see everything especially her going into a coma I don’t think he was at the time strong enough. I think back to May 12th and remember not being able to touch her only her hands and fer feet and then rolling her down to ER for surgery… They gave us a private room and promised to call half way through surgery to let us know how things went, They did call and mike answered we were all on pins and needles waiting for that call I look back and I can’t imagine what everyone else was thinking. I remember the call daddy answered and they said everything was looking great a few issues but they were fixing them as we spoke. All I could think is miracle workers. I remember after getting out of CICU and back onto Nicu Khloe’s poor little lungs collapsed for the third time and they put her on CPAP she hated it, she wriggled the whole time and at that moment I seen the fight she really had in her. I remember her really waking up and looking at us and breathing a little sigh of relief but not exhaling completly. I Can’t believe it has been three years they have flown by. All I can say is here is another year and the memories I have are still vivid as if they were from yesterday, I am so proud to have my warrior and even with every issue and mountian of worry and appointments and everything in between I can’t wait to enjoy this third birthday with her and everyone that loves her as much as I do. So happy birthday Khlobugga mom and dad love you to the heavens and beyond. I will always remember that sick baby that I couldn’t touch for weeks and I can’t wait to see the beautiful woman you are going to turn out to be, Happy birthday baby girl a little early. I love you.

Nineteen years is a long time to do … anything. Be married, have the same employer, or be a parent. But 19 years is especially long when you are the parent of a child with serious congenital heart defects (CHD).

Our family has never liked the word “defect” but we realize that is the most appropriate word. What my daughter has is not congenital heart “disease”….it was not acquired…it was merely a hiccup in the creation process. God knows what He is doing at all times and we are okay with that.

Nineteen years ago this week our daughter was born with Single Ventricle, Transposition of the Great Vessels, and Pulmonary Stenosis. She was whisked away about one minute after she was born and the whirlwind has seemed to continue for the most part…with some lulls along the way.

In 1991 there was no internet access and we were clueless about what this diagnosis meant. Perhaps that was a good thing. We listened to the physicians and took their advice to try to raise our little girl to be as normal as possible.  We knew it was “serious” but didn’t have any idea with 19 years might bring. Actually, we didn’t know if we would have her with us for 19 years.

She was our first child so we were also clueless about being parents and what it meant to have a baby. We just dealt with things as they came…same way we do it today! We made it through her first surgery at 3 months of age. Then her second at 3 years of age. And then her 3^rd, 4^th, 5^th, 6^th, 7^th, 8^th, 9^th, and 10^th surgeries also. No matter how old your child is, it never gets easier handing her over to a team of physicians who will put her under anesthesia and operate on her.

If you have read any of our entries before, you know that we have a positive attitude about CHD and life in general. What choice do we have? As I reflect on 19 years though, the diagnosis of CHD certainly has its valleys. Yes, our CHD children are living longer than they ever have in the past thanks to research, medicines, etc. But with that longevity comes many more unknowns. Lately we have been getting calls from our college age daughter because she keeps getting new and weird symptoms. Dizziness is the main one right now. Yes, she has seen many doctors and had many tests. But, as is the case so often, these are uncharted waters and there aren’t necessarily any solid answers. Adults with CHD are a new phenomenon.

CHD sucks.  It’s hard for a young adult with CHD to face their own mortality on a regular basis. It’s hard to have symptoms every day reminding you of defects. It’s hard to have physical limitations. It’s hard to try to explain your situation to new friends in college. It’s hard to have to grow up so fast. It’s hard to be “normal.”

But as we have done for 19 years, we must go on reveling in each day that comes along. We have to go into overdrive to get through those valleys and back up to the top of the hill to enjoy the sunny view. Life doesn’t stop for CHD. Sometimes those valleys are few and far between. Sometimes they seem to last forever. But CHD parents and “kids” have to understand that after the valley comes a great view on top of that mountain. And a great view it is. CHD kids appreciate that view more than most people.  

What advice can I give my 19-year-old daughter? Even though I have had a lot of life experiences, I don’t feel right giving her some great insights into her future. How can I relate to what she is going through? All I can do is be there for the ride. I can strap in, hold her hand, and laugh along the way. I can try to help her go into overdrive to get back on that mountain top. I can empathize. I can love her every day.

She is an adult…with CHD.