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.

I posted this on his blog before his birthday, I still feel the same though & wanted to repost it here for others, so they can have HoPE for the future also.

♥     ♥     ♥     ♥      ♥     ♥      ♥     ♥     ♥     ♥

As London’s 10th birthday comes around I am very emotional.  When he was diagnosed at just 2 days old we were faced with the very real possibility of losing him, we are still faced with that possibility, it is something that we must think about every day.  I didn’t dare dream of the future until he was safely past his required surgeries.  We wondered if we would see him grow up and we vowed that he would be happy and we would have no regrets.  Now here we are, 10 years down, many many more to go!  London has come this far with flying colors and will surpass everyone’s expectations!  I now, finally, dare to dream…. Dream about his 16th, him driving, his 18th, his graduation, his 21st, college, marriage, and even holding my grandkids!  Things that most people take for granted, these are the things that we, as London’s parents, dream about & hope against all hope that London will be with us & be able to achieve these things.  And something that I know all HLHS & CHD parents will understand, but may sound morbid to everyone else:  MY SON WILL BE BURYING ME!  (Not the other way around)  No parent should have to bury their child, but as a person with HLHS, we do not know what his future holds, the oldest people living with HLHS are only in there late 20′s & early 30′s, but medicine has come a long ways, more & more kids with HLHS are living & my son is one of them!  I love you so much London Max II!  You are my sunshine!

PS. I also want to thank Dr Delius, his surgeon for his 1st 2 surgeries; his surgeon at UCSF; Dr Choy, his cardiologist; Celia, Dr Choy’s wonderful head nurse who has been there for us through everything!; Dr Yumul, his wonderful pediatrician for the first 8 years of his life, and everyone else, dr’s & nurses alike, who helped to keep my son alive and helped us get through it. Thank you to my family for being there for us and to our friends also. Thank you Shannon, for showing me that there were other people out there who felt the same way we did, and for taking the idea of starting our support group & running with it. I know that not only me, but over a thousand people thank you for getting the group started in 2002! ♥

Right after Norwood (1st open-heart surgery)August 2, 2000 ~ 5 days old

Just after Glenn (2nd open-heart surgery) February 1, 2001 ~ 7 months old

After Fontan (3rd open-heart surgery) August 1, 2002 ~ 2 years old

London earned his Yellow Belt in Kajukenbo July 31, 2002~10 yrs old

Abby was diagnosed with Tetralogy of Fallot at three-days-old. I never experienced the infamous 3 options presented to mothers who are diagnosed in-utero. I don’t know what that would feel like or what kind of emotions would run through your mind, both upon hearing the diagnosis and during the remaining months of pregnancy. I had a breathing little baby in my arms that I had fallen head over heels for. Her silky black curls, her beautiful blue eyes, the smell of her sweet breath, her soft skin…I knew that I would fight to keep her alive. I would go to whatever lengths I had to and beyond to keep her here.

This post has nothing to do with my stand on abortion or whether I think it is right or wrong. It has to do with a medical professional giving incomplete information to parents who were diagnosed in utero with Tetralogy of Fallot and trisomy 21. It has to do with that father spreading the word, to who knows what ends of the Earth, that Tetralogy of Fallot and trisomy 21 are conditions that are incompatible with life.

I came across a pro-choice blog in my searches. The blog had a post by a father. They were expecting twins. A healthy son and a son with birth defects. The “sick” son or the child this father refers to as “angel baby” was diagnosed with Tetralogy of Fallot. After receiving the diagnosis, the father stated that the doctor told them “the baby’s condition was inconsistent with life outside the womb.”

Here my heart skipped a beat. I caught my breath. My stomach flipped. I immediately thought of my beautiful ten-year-old daughter who lives everyday to the fullest. She loves Taylor Swift and Lady Gaga’s music. She watches ICarly. She loves to curl up on her bed with a book and she READS and READS like no child I’ve ever met. She is hardly inconsistent with LIFE!

These parents later were told that their son also had trisomy 21. A condition that is nearly identical to Down’s Syndrome and often present with Tetralogy of Fallot. They were told by a neurologist that he had definitely had a stroke in utero. They were also told he had a webbed neck, clubbed feet, tumors and cysts, a small brain, a deformed face, and a deformed nose high on his face.

Granted, this baby sounds like he had severe defects…as far as they could tell by the 26th week of gestation. They were told that if “Angel Baby were to survive birth, and the first 30 seconds of life, he might never attain any degree of consciousness or have any meaningful life or interaction with any one or anything.” The doctor went on to tell them that “to call Angel Baby “retarded” would be a great compliment.”

The parents decided to inject their angel baby with a shot of potassium to the heart, killing him. At 35 weeks both babies were delivered C-section. A healthy son and the deceased fetus, whose “profound malformations of his heart and nervous system” were “inconsistent with life outside the womb.”

I don’t profess that these parents should have attempted to have and raise their angel baby. I don’t profess that the choices they made were wrong. They made choices based on their medical advice and the choices they felt best served their son’s twin and the mother’s life. They did what doctor’s encouraged.

What I do profess is that the article is presented in a way that makes it seem like Tetralogy of Fallot is an untreatable heart ailment. And I profess that the article makes it seem like having trisomy 21 and Tetralogy of Fallot is something so terrible that death is preferable to these abhorrent conditions, when in fact I hope beyond hope that it was other serious defects that made the medical doctors encourage abortion. What I profess is that the article is close to negligent and leads others who find it to believe that children like my daughter and others who have trisomy 21 to deal with as well, should be aborted because their lives are not compatible to living. I profess that the doctor’s who handled this case were also negligent if they led the couple to believe that it was because of the heart condition that made the life of this baby not worth giving a chance.

I am so happy I found out about my daughter’s beautiful heart…after. The emotions were hard to deal with. The grief was overwhelming for days. The fear and anxiety compounded the normal emotional task of birthing and caring for a newborn. But, no doctor ever told me my baby’s life would not be worth keeping. No one ever encouraged me to abort the life of this baby…who also had other congenital issues that could have led them to believe she was severely handicapped as well. No one ever made me think that my daughter’s life wasn’t worth every last ounce of fight we had to keep her here. I hope that all those of you who find this know that Tetralogy of Fallot is most definitely compatible with life. I hope you know that trisomy 21 children are amazingly beautiful children. I hope you know that those of us with children with perfect broken hearts wouldn’t trade them for the world!!! They are worth every second or minute or day or week or month or year that we get to spend with them in our arms…loving them and feeling of their amazing and tremendous spirits.

They are most certainly compatible with LIFE!

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 really love it when people ask me, “Is Abby done with heart surgeries?”

To be honest, the answer to that question is we hope so…at least OPEN heart surgery. Dr. Kaza at Primary Children’s was able to put a valve that technically should last Abby through her full grown body. Of course, replacement valves wear out but, he is confident that by the time Abby needs another valve replacement, it will be done through a vein in her leg in the cath lab! So, while we feel so relieved that our little warrior has fought this battle with CHD so valiantly, Abby has an additional congenital defect we have to deal with–Congenital Scoliosis.

I have learned that in children with Congenital Heart Defects, especially Tetralogy of Fallot, 23% will have congenital scoliosis as well. In the general population 1 in 10,000 children will be affected by congenital scoliosis. This makes information less common to come by, additionally, most people confuse CONGENITAL scoliosis with FUNCTIONAL scoliosis. They are different and will require radically different treatment.

FUNCTIONAL SCOLIOSIS is a much more common scoliosis. This is the type of scoliosis they test for in Jr. High and High School by having children bend down and touch their toes while their spine is examined. Functional scoliosis is caused by a factor outside the spine, meaning that a muscle on one side of the spine develops more, pulling the spine slightly to the right or left. Or, one leg may grow slower than the other leg, causing an imbalance in the hips which pushes the spine to one side or the other. In this scoliosis they attempt to treat the cause of the curve. Most often it is treated with a back brace, shoe inserts, or chiropractic care. It is easily treated and rarely causes problems–keep in mind that the spine essentially FORMED straight in the womb.

CONGENITAL SCOLIOSIS is a different type of scoliosis. It is much less common. The word congenital means “at birth”–this type of scoliosis was present at birth and was caused by a birth defect in the spine. There are two different kinds of birth defects in the spine: A Hemivertebrae (or butterfly vertebrae), and a unilateral bar. The hemivertebrae is where one side of the vertebrae forms and the other does not. The unilateral bar is when a number of the vertebrae are fused together on one side so the spine grows lopsided, so to speak. Congenital scoliosis requires surgery to correct since bracing can in no way fix the deformed bones. In a small percentage of children, congenital scoliosis may be outgrown or the curve may remain stable. In 70% of cases, the curve progresses as the child grows and will require surgery to ensure that the child can walk uprightly and has no problems with other organs in the chest cavity.

Abby has both Hemivertebrae and unilateral bar defects in her spine. The picture above looks very similar to Abby’s X-ray of her spine. She has a curve of 53% (which is considered severe) in her mid-back where she has unilateral bar and a smaller curve in the upper back area where she has Hemivertebrae. We are now looking at surgery to correct this defect around 12-years-old or so. One-and-a-half years time.

This surgery always felt far away…and for some time it sounded like it might be possible for her orthopedic surgeon to remove some growth plates on one side to correct the curve; however, at our last visit it became clear that her curve is progressing faster than he likes and is already a severe curve. Her surgery will require fusing of the vertebrae affected with bone grafts and metal rods and screws. The ICU stay is 2-4 days and the total hospital stay is 5-7 days. Children are then required to wear a brace for 6-9 months to protect the spine while it heals. Additionally, some patients require rehab therapy for 1-2 weeks after the surgery to help with walking, moving, and loosening the spine. This rehab is usually done with the child sleeping at the rehab center, although sometimes children are allowed to go home and attend therapy close to home.

Having said all that….so clinical and matter-of-factly….I want to cry when I think about this sweet girl going through ANOTHER surgery. It is true this surgery is not as “serious” as open heart surgery, although children with CHD do run a higher risk of contracting staph infection which can cause serious problems to the already repaired heart. Whether it is serious or not…it inflicts pain on her. It involves a hospital stay, which is scary to her. It requires ICU stays, arterial lines, catheters, intubation, and invasive procedures on her body. It scares her. It BREAKS MY HEART.

I would love to ask WHY? But that really doesn’t matter and I won’t get the answer answered. So, we take a deep breath. I have shed a few tears over the thought of more. I have realized that it could be worse and she could have had much more to go through like so many other heart children do. And, I remember that she is a huge ball of fire in a little body and she has a soul full of fight. She can do it and so can I. So here’s looking ahead to yet one more mountain Abby must climb…and that I will follow her to the top and over the other side.

As many of you know, I volunteer for Camp del Corazon – a non-profit organization that sends kids (7-17) living with cardiac issues to a five day camp. We have space left in sessions 2 and 3 and I’d like to give you a Top Ten List of why you should send your special heart child to our wonderful heart camp!

1. There is absolutely NO COST to your family! That’s right, your child is granted a lovely five day camp journey with boat ride (to AND back!), room & board, activities – all at no cost to you!

2. Your child is amongst their peers with dozens of fellow heart buddies to spark new friendships and forge bonds that can last a life time!

3. Camp del Corazon is an ACA (American Camp Association) accredited camp!

4. Camp del Corazon was founded by a pediatric cardiologist and nurse! Trust me; round the clock care is there for your child with nurses, doctors and a fully equipped infirmary. ALL activities have a nurse stationed at them!

5. PIRATES! How can you go wrong with an awesome theme like pirates? Costumes, props and decorations are thoroughly encouraged for campers AND counselors alike to get into the spirit of our theme!

6. Your child’s itinerary may include just a sampling of these awesome activities: Swimming, kayaking, archery, arts & crafts, boom ball, court games, climbing wall, high ropes course, nature PLUS a free choice activity of their choosing!

7. Your child will stay off the California coast at Howland’s Landing, a private cove on the leeward side of beautiful Catalina Island! Gorgeous ocean view, fresh air and balmy, beachy days.

8. All of our activities center on building a camper’s self-esteem & teamwork skills through positive reinforcement and encouragement.

9. Thoroughly enthusiastic counselors (such as myself!) are there for the kids ~ to mentor and lead by positive example, to provide safety as well as fun. Did you know we also have quite the number of former campers turned counselors?

10. This is a completely unique experience no heart kid should have to miss, as it was designed specifically with them in mind. <3

Camp del Corazon (website)
Session 2: August 30th – September 3rd
Session 3: September 3rd – 7th

Camper Registration Forms here.

Feel free to email me with any questions, or call the camp office (provided at the camp website)

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 .

In Oct. 2008, at about 17 weeks into my pregnancy I was devastated by the news that my precious baby girl would be born with a congenital heart defect known as Hypo Plastic Left Heart Syndrome.  My pregnancy with Arayah was filled with many tears and fears, would she be okay? would she survive?  Arayah was born March 26, 2009 at 12:46pm by c-section. She weighed 6lbs and 7oz and was a tiny 18.5 inches long.  Arayah was born motionless and not crying, I remember screaming “Is she breathing, what’s going on?”. At that moment I remember a sound so soft and weak, it sounded like a newborn kittens cry. It was beautiful and it was Arayah. She was okay and breathing. At that moment they wrapped her up and handed her to her Daddy to hold. He was so nervous, she was our tiniest baby of all. I got to kiss her face and then they whisked her off to the NICU.   Around 4 hours later I finally got to see our Miracle when Childrens Hospital brought her in to see me before they transported her to their hospital. The only thing I got to do was touch her in the incubator and blow kisses to her and then she was off. I remember sitting in my room crying like a child, praying and hoping to see her again and soon.  The next day my hospital gave me a day pass, meaning I had to report back by 6pm. My husband and I got up early and headed over to Children’s Hospital to see Arayah. Seeing her with all those lines broke my heart, I couldn’t hold her I could just touch her and cry. I went through every emotion “What had I done wrong this time around, what did I do to deserve this, and better yet what had she done she was a precious newborn. I now can understand that everything happens for a reason, even if I don’t like the reason.  The only thing that matters is she’s here and she’s a MIRACLE. On Arayah’s third day of life I got yet another day pass and went to see her. A precious nurse realized that I had never gotten to hold her yet and she then broke a ton of rules and allowed me to hold my baby girl for the first time. It was the greatest moment in my life. She was so warm and cuddly, so soft, and smelled so great. I will always remember this moment and 1 year later I do..  On day 6 I got to the hospital at about 5:30am the nurses got her out and allowed me to just sit and hold her, we were waiting to kiss our daughter goodbye for her first open heart surgery.  I remember her surgeon’s nurse coming in and talking with us about the surgery and how since Arayah was so small they thought they could make her left ventricle work, I was so excited..  About an hour later they came to take her down to the surgery dept. I remember that being the longest walk of my life. We got down to surgery and we got to spend about an hour with her while waiting for the surgery to begin.  Once they came in I kissed my precious baby and prayed to GOD to return her safely to me we were than escorted to the waiting room.  I remember sitting in the waiting room waiting for updates that seemed like it took an eternity. I remember sitting there and the lady running the waiting room calling our names and saying that the doctor was coming out to speak with us. That’s not right he’s not supposed to be done yet, something is wrong, these were the thoughts running through my head.  Next thing I know Dr. G was there wanting to speak with me in private, I broke down in tears.  He began by saying “Arayah is doing fine, I promise.” then I’m sorry right now her aorta is just to small and we have to do the stage 1 hybrid, I just can’t chance the repair right now..  Okay, that’s not the end of the world, I can live with that.. A few hours later we were escorted to the CICU to see our baby girl. When I first saw her I was so relieved and saddened at the same time. All the wires, tubes, and c-pap machine, so much for such a tiny baby. By this point Arayah was down to 5lbs 6oz, so tiny and so much stuff on her tiny little body. All together Arayah spent two weeks in the hospital before coming home for the first time. Bringing her home was the happiest and scariest times.  I was so excited that she was home yet so scared. Everything was okay until about the time Arayah was 2 and a half months old. Arayah began having trouble breathing while eating, she was hospitalized for about a week and they decided that she needed a heart cath.  We came back to the hospital not even two weeks later for her heart cath, other than Arayah deciding not to eat for two days everything went pretty smooth. We went home about a week later. At six months old Arayah developed RSV and was hospitalized for a few days for observation, she did great. On November 2, 2009 Arayah underwent her next open heart with the bypass.  Arayah’s surgery lasted 10hours the longest 10 hours of my entire life.  At last we got to go up to the CICU and see her it was horrible she was on a vent, she had 18 IV pumps running, chest tubes, cath, so much for someone so tiny. Arayah was 7months old and 10lbs 8oz.  The the unthinkable happened, all her alarms went  off, she was in heart block. They tried pacing her heart and shocking it back into rhythm.  We had horrible ups and downs, lots of oxygen, tubes, wires, pacing attempts, this one really just broke my heart.  My baby girl spent another two weeks in the hospital fighting for her life. Now we had high blood pressure to worry about, but two ventricles working. And now a new diagnosis, Hypo Plastic Left Heart Complex and Shones’ Complex.  What a trade off. Finally we got to go home, but something just wasn’t right, Arayah was having trouble breathing. Two months later my baby was in the hospital again she was just struggling too much when breathing, another surgery was scheduled. At 11 months old Arayah went in for her fourth surgery, this one on her airway and ears. On March 11, we went in for her surgery, man it was fast to about 30mins start to end, WOW..  The Dr. came out the tubes in her ears went fine and that she had a scar tissue band connecting her vocal cords that had to be removed, she would have come back in 6 weeks and have a broch scope to make sure it hadn’t grown back.  We spent four days in the hospital, mostly because she caught rota virus. Finally, home.  Now today is March 26, 2010 My baby is 1 today. This is one of the happiest days of my life, to celebrate the Miracle of life with one of the greatest Miracles of all, my Hero, My CHD Warrior, My daughter…

On March 12 2010 Kimmy turned one!! I didn’t know if we would be able to celebrate this day with her!! I know the feelings that I have felt when we found out that Kimmy hadCHDs is still there. I think I felt every emotion possible scared sick to my stomach joy proud sad every emotion showed through. I would cry alittle then I would cry an ocean. We were able to bring Kimmy home early November. Thank God!! I was so glad she would be home for her big sisters B Day and the holidays. We had just moved in October to a house!! We were sohappy but then the visits to Chicago started up again. UGH we go up there for a 0930 appointment endup home around700 Pm!! The drive the waiting the Echos the ultrasound the Vitals the catching up and trying to leave with out seeing somone else on the way out we want to share Kimmy with her “2nd family” but on our terms sometimes we are just to tired we want to get back home ASAP. Every appointment I relive all the emotions everytime I see a baby in a store in the hospital resturant where ever I yearn for Kimmy when she’s in Chicago!!  We bring her up to Rush and it’s the same thing We are asked by security whose the patient when they had the Swine Flu precautions out I had just told him we were going to the 7th floor to the Pediatric cardiac clinic!! Is Cardiac such a foreign word??? We go to pre op and we just want to get it over with andare pretty confident but then that Dark Cloud starts to lurk behind us. We follow the nurses up to a exam room for the temp weight etc. Everyone is admiring Kimmy she’s so cute she’s so small and then What’s she here for. Cardiac cath we answer she has multiple CHD’s there’s that feeling that sick to my stomach feeling the emptiness. The whispers as we are taking Kimmy to her little spot in Pre op.Oh look at the Little baby wonder what’s wrong with her ? That feeling starts to come back. It’s time to say that word again CHD but to make sure everyone knows what it is we say the hole meaning too.The Joy when we hear she looks so good and is so strong Yup she’s our little fighter and miracle!! We get to hear five hours later she’s doing good but her shunt was closed a bit!! So they ballooned it and we will be spending the night! The Dark Blob is tapping on my shoulder again but he didn’t get through this time She made it through with flying colors they were taking her off the vent right away she was very alert!! Yes the wait  was over!! Nothing like pushing an empty stroller around a hospital!! We had a little Baby Bear coverup buttoned in it was dads way of it not falling out or off I thought it was funny here we are pushing an empty stroller around till we put it in the van. The stares were interesting to say the least. We get up to Recovery and there’s Kimmy rollin around trying to pull everything out. Yup she’s fine back to her normal self.  Felt bad for the nurses though they would walk up to her and she would cry. We got upstairs and Becki one of her favorite nurses was going to get her set up in her bed!! She calmed down alittle. Two weeks went by we learned yes she will need the Glenn procedure and the repairs that they were putting off. We had Early Childhood services come in and we had requested a dietician even though we thought it would be good to have so close to home and that maybe we might learn something. From the start she kept telling us Dad wasn’t doing things right and we shouldn’t be giving her certain things it wasn’t age apropriate. Rush said give her anything and everything!! We have a long list of foods. She does require a lot of attention and she aquried Seperation anxiety in the Hospital we can’t leave her sight sometimes otherwise she starts crying and gets all sweaty and will keep crying. Sometimes we are so tired that we might leave toys on the floor we will pick them up the next morning. Kimmy has CHD’s but she can go outside it was 60 and dad had her in her coverup oh and heaven’s to betsy she was in the stroller and had a bottle of Chocolate pedia sure next to her. We are over joyed that she will pick up her bottle and drink from it and yes pedia sure leaves chocolate mustaches we know that but when you are trying to get things done in the house or outside is a chocolate mustache really that bad??  You want Mom to call you sorry Dad knows what he’s doing and so do I ?? Dad mixed her formula from day one and so have I we have put NG tubes in so many times it would make your head spin. Dad and I had to learn CPR and warning signs that Kimmy could be in distress. We know how to use a pulse ox!!  When we tell you Kimmy is labeled as failure to thrive and she won’t gain weight in the hospital either. We thought you were here to help! Instead you made more stress. I should of cancelled your services after the second time but i thought you would call the DRs and read the countless papers we have from the hospital. We thought since you are a RN LPN this would be familar wrong it wasn’t. I keep having the Dark Blob tapping me on my shoulder. I try to shake it away but he keeps creeping up. Iam pretty sure that everything will be ok on the 23 but I will still have the blob bringing that sick feeling back and the pain of turning you over to the nurse to take you to the OR! I will never get used to that Feeling a nd I will cry me an ocean when I see children in the waiting area etc! I will keep fighting to get people to understand our life with CHD. I will fight for you. I can’t call CHD a monster it has taught us alot of things lifes little lessons. WE will never take anything for granted and again and we will always be grateful to have you.  So I guess CHD is bad but also has a purpose in our lives. It’s amazing how many people think they are god and theirword is golden. I hope that each one we encounter that we end teaching them something like compassion understanding and that theree are cases of complex CHDs that cannot be solved on the first try and that you shouldnot judge a book by its cover!! This has become our life we can put off picking up toys we can put off other appointments  we can wait to go to the mall to do normal things but we can’t let Kimmy miss her appointments and if it takes awhile to feed her it usually doesn’t but if it does then we will take the time. If we have to do things with Kimmy on our hip we will because that makes it less stressful for her. We wouldn’t wish this on anyone it’s that we would like some understanding that we are doing everything for Kimmy and that we know what we are talikng about. Iam praying that CHD will be known as much as cancer and that it does affect babies!! If anyone knows where sleep is hiding could you send him my way??  We didn’t chose this life with CHD but we are adjusting and coping the way we know how!