BCH vs….

The last few days I have seen posts about Boston Children’s Hospital and the comments have been less than glowing. The rivalry between Boston and Philadelphia plays out on various pages I frequent and frankly, I am so done with it. Yes, I am sure CHOP has amazing facilities that give many families comfort and excellent care to pediatric patients, it’s also in Pennsylvania, which was a state founded by a Quaker, I believe. A Quaker who didn’t believe in violence, and seemed by historical accounts to have a gentle disposition.
Boston is not Pennsylvania. Boston was founded by a handful of colonists who started a ruckus by throwing tea into the harbor and set off the American Revolution. The hospital is smack in the middle of this community and the Yankee mentality may just be part of the reason why people don’t get warm fuzzies when they come here.
Warm fuzzies didn’t save my daughter. Medical ingenuity did. Medical ingenuity, sparked by the competitive drive and combined with brilliant graduates from the top academic institutions in the country saved my daughter and many others. People were blunt with us. They told us that in order for her to live, we had to get through three surgical procedures. Our cardiologist was matter of fact, was as gentle as she could be and made herself available If we had questions or concerns. The kindness we received along the way was the gravy. It just happened, evolved, I guess you could say. There were times when I had to be a strong advocate when I felt that certain things weren’t being done or there was too much being done at the time. We put so much trust in doctors and nurses, we forget that they are human and that they are following the best course they feel appropriate for the situation. It isn’t always right, and I am lucky I have had the education I have received from the Heart mamas and Sisters by Heart.
Thousands of patients come to this hospital confined by concrete walls and limited space. Some Boston streets were originally cow paths that didn’t make very much sense. It wasn’t a planned out city. There isn’t a lot of room and everything is expensive. I count my blessings that we live an hour away so we have access to the best healthcare in the world. But believe me, start knocking my hospital and you will get an earful from me. They saved her. She is sleeping in her bassinet, peacefully and I enjoyed a wonderful day with her today. Right now, I would trade bedside manner for her to thrive. And that is what she is doing, she is thriving,
If you a looking for someone to be nice, or large open spaces that you can park an RV in, then Boston isn’t for you. And that’s okay, but don’t slam the place that treated my oldest when no one had a clue what was wrong with her and that has allowed for Isabelle to be with us.
This Masshole will most certainly bite back.

A Popularity Contest?

Over the years I have donated money to various causes. I’ve run in all types of road races, walkathons and fund raising drives. Never in a million years did I ever think that I myself would be in the position of relying on a charity to provide hope for myself and my family. I never thought I would be the one to ask people for help, to donate what they could to a cause that would mean so much personally. 

Fact: more babies die from CHDs than all pediatric cancers combined. When I first started participating on various heart pages on Facebook, I had no idea the impact this statistic would have on me. For months I was surrounded by mothers who were losing their children to all sorts of congenital heart disease, not just HLHS. Babies who were born with such promise only to lose the fight before it even began. Others would lose their fight when parents would least expect it. Even now when I see that one more family has lost their angel, it hits me in a way I can’t explain. I don’t want us to be next. 

Then there is the hope that research provides, such as Dr. Emani and Dr. Del Nido’s latest work on rehabilitating the left ventricle of HLHS babies through a series of surgeries that will make it possible for them NOT to need a transplant. The day I called our cardiologist asking if there was a slight chance that Isabelle would qualify was not a good day. I was told that she doesn’t fit the mold for that particular treatment. She needs to have a partial ventricle which she does not. I also brought up the statistic that gripped my heart of only half of these children making it to adulthood. Long pause. Well, that is based on older data and there are new discoveries happening all the time…look how far the palliative treatments have come in just a decade…yes, I know. 

So my hope for Isabelle really does hang on what discoveries research can bring. Research funded by organizations like The Children’s Heart Foundation. You can imagine how this feels- to be dependent on something that hasn’t been discovered yet to keep my child alive. I can tell you exactly how it feels- it sucks. It scares me to death. I hold her every chance I get, enjoy every moment with her. I admit it is morbid to think about the what ifs, but its hard not to when you live in this world of heart disease. It’s unpredictable, it chooses its victims randomly and it devastates families for reasons science is still figuring out. 

Peoples’ reactions to our requests for help amaze me. Some in good ways, some not so good. I am speechless when I hear from people I sat next to in elementary school giving me support, even donating and pasting links on their pages. At the same time, it shocks me when people close to us do more for other causes. 

I was out with some fellow runners at a breakfast a few months ago to get some feedback on possibly putting a road race together. Before I had the chance to throw the question out there, someone was talking about the road race she had put together for her school’s club. “The best part of this race is that it isn’t like all the other races out there for diseases and sick kids. It’s to raise money for our hygeinists club, something different.” I felt like the wind was knocked out of me. Sick kids? Oh, you mean like mine? After being quiet and listening to the plans for this glorious race unfold, I softly said “So I was thinking about putting a road race to raise money for my daughter’s heart condition. I suppose that would be a stupid thing?” Of course people back-pedaled from their previous stance of Anti-Sick Child race. For me, it was a moot point. I just wanted to leave. I haven’t had the heart to run with these people in a while, to be honest. That really upset me and I left that place hurt that my idea was considered so overdone and ridiculous. So you can imagine how I feel now when we are trying to get people to walk with us and only a handful of people have signed up. 

I never thought diseases had a popularity contest. I didn’t know that cancer trumped heart disease or that MS counts more than an obscure heart defect. Or that putting on a road race for a dental club is more meaningful than helping someone get help for their loved one. 

Thank you to all who have supported us this far and who have lifted my heart when I have my moments of panic- when I realize how precarious Isabelle’s life really is. When I feel like I can’t breathe at the thought of losing her. thank you for making me feel not alone in this, and in spite of distance or time since I have last seen you, you have reached out to me. 

It wasn’t on my Top Ten list

You know, some nights I check in on fellow heart parents’ pages and see how others are faring in the world of CHDs. Some are inpatient, others are interstage and trying to figure out what’s next, and others are dealing with feeding issues similar to what we had. Isabelle is continuing with the vomiting and I plan on making various phone calls. The GI said that she was ‘okay with one to two episodes a day’ but I am not. I am not okay with her eyes rolling back, her face becoming very flushed, and feeling her little body heave against my shoulder. I am not okay with a lot of things this CHD has given us and sometimes when I read about other peoples’ journeys, I find myself getting upset.

I would love to be the righteous person and say how happy I am that there are families out there who were successful in avoiding the feeding tube route. If I did say that I would be lying. Truth is, I am not happy. I am not happy that we are still, STILL dealing with issues after the Glenn. I am angry when I see how these people were able to get their kid to eat when I struggled in tears desperate for her to take the bottle. I tried three different types of nipples, bottles and the breast but nothing worked. Eventually we had to get the tube because she wasn’t gaining and there was a real concern about dehydration.

It wasn’t my fault. Just like her having this condition wasn’t my fault. If I see another advertisement on Facebook for a class action suit against a pharmaceutical company for causing her defect, I am going to lose it. I didn’t ask for this- getting a feeding tube wasn’t on my agenda. I wanted to breastfeed, remember? I wanted to give her a chance to be as normal as possible and was denied because of this crazy, stupid heart disease. 

Tonight I saw another post about feeding issues and once again, I see a lot of negativity about placing a tube. It makes me feel like I didn’t do enough to get her to eat on her own. Believe me, if we could have avoided  it, I would be a very happy person. I am not crazy about the looks she gets from people when they see the tube coming out the side of her clothes. I don’t like that very few people know how to run the pump in our family. I am not crazy that my living room looks like a medical supply closet. 

I know there isn’t anyone out there who thinks that I am a bad mom. But I do know human nature and I know how some people think. They may not post these thoughts, but I am sure there are people out there making judgements on whether I tried hard enough. Especially when I see posts like “My son drinks whatever ounces a day and didn’t need a feeding tube because HE ROCKS.” 

Well I guess we can’t all be rockstars, but I think Izzie is one because she didn’t have a lot of the complications that I see others have. Would I post that on a page full of people who are still in the hospital struggling, whose children didnt fare as well? It just pisses me off when I see so much crap about feeding tubes.  Listen, I did everything I could- EVERYTHING- and it still wasn’t enough. I am reminded every time I have to hook her up, every time she gags, every time her little body involuntarily presses against my shoulder.