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.
The website that I linked shows a really good diagram and if you move the mouse over the photo it shows exactly what the Fontan/Glenn procedure looks like.
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.