6 Month Reprieve

You would think that I would have breathed a sigh of relief when we were given the news that we didn’t need to see the cardiologist for 6 months. That her heart is functioning perfectly for having three chambers. That there is no substantial fluid around her heart or that her squeeze was being affected by the new pressures and circulation. Nope. All I could think about was getting back to the office. Back to my laptop where I had multiple projects going all with deadlines of yesterday. My head should have been with my heart yesterday with rejoicing in knowing that we have made it through the Fontan tunnel. Instead, both my heart and my head were living in sheer panic of what ifs and how am I going to finish…blah blah.

How important is it? I remember being asked that a lot when I would get angry about…everything. How important is it that I be valued and appreciated? How important is it that I feel like I am getting assignments completed. How important is it that I have a computer that actually works and helps me get these assignments done. There are a few important things here but I can’t lose my head over every one of them. But I did this morning. It isn’t even 10AM and I already have mascara down my face from the pressure. I woke up later than I wanted to. Headed out much alter than I should have and stressed all the way into Boston on the train. I can’t work on the red line like I could if I were on the commuter rail. And because I came in late, I will need to stay late too causing me to miss more time with my children.

Which brings me to another sore spot in my chest. My girls are sick with colds and I haven’t been able to be available for either one of them. Last night Izzie threw up in Chris’s bed for the second night in a row and I wasn’t there to help. I couldn’t help anyone. It feels awful. I can’t be available to my kids when they are sick because they shouldn’t be shuffled around if they are not feeling well. I am the biggest loser in this situation and it hurts like a bitch today. They don’t come to me to be comforted anymore. The other night Izzie kept pulling away from me and reaching for her Daddy instead of letting me rock her to sleep. I don’t know what else to do other than keep putting my foot in front of the other and hold her anyway. She did give in and cuddled with me but it was agony not feeling like her mother. I feel more like an aunt these days than a parent.

And what is happening with my divorce? Absolutely nothing which isn’t good considering I have a deadline of financial aid forms I need to start. I feel like there is this elephant in the room with dollar signs for eyes and no one is saying anything for fear of breaking out into another argument. At least that is where I am coming from anyway. I know we have to talk about things and I know that I responsible for a lot of what is going on which makes talking about this even harder. I want to be able to help financially and I can’t. I want to be able to have more time but my schedule is ridiculous.

So we have a 6 month reprieve from doctor’s visits and that is a great feeling. The only great feeling I have at the moment. I am holding onto this with both hands. These feelings are so fleeting no matter how many times I get on my knees and pray in the ladies room they always disappear to be replaced by panic. Panic that I am being seen as someone who isn’t into her work. Seen as a bad mother. Seen as someone who is just out of control. I hate feeling like this and am hoping that like everything else it will pass. Until it does, pass me the tissues.

September 30

Tomorrow I turn 42. Tomorrow is the 42nd anniversary of when I was brought into the world thanks to the selfless sacrifice Patricia made that day in September 1972. I was handed over to my parents three days later. One act of selflessness gave another the opportunity to have…me. It’s taken years for me to reconcile the issue of being handed off to someone else, especially after I saw the original paper work showing her purposefully giving up her rights to me. I had an incredible home, living family and little reason to have discontent. But it was always there lingering in the shadows.

I cannot remember a time prior to 1993 that I felt comfortable in my own skin. There was always the feeling that there was something fundamentally wrong with me, regardless of how much I tried to be what I thought I was supposed to be. Something was always off. In 2000 I went up to Montreal with a friend and couldn’t believe all the people I saw who looked like me. It was enough to put the search for Patricia to rest. I no longer had that need to find out where I came from.

Last year i decided to do the ancestry.com DNA sample test to see what my genetic background had in store for me. What they don’t understand is, I only have the first and maiden name of my birth mother so….I can’t create a family tree from that. Please stop sending me emails encouraging me to find my origins. My origins are Newburyport, Chelsea and topsfield. That’s it.

I am so grateful Patricia made the terrible decision to give up her child so she could have a good life. I hope I have had a good life that made it worth the pain she must have gone through. There are times I wonder if she would be proud or pleased with how I turned out. There is no father listed on my birth certificate. Completely blank with nothing to go on. That’s ok. It was easier for him to make that choice obviously. I can’t really say that since I have no one to ask.

I get to celebrate with my girls and I am happy about that. Hearing that Izzie won’t need to be seen for a while would make an awesome birthday present . My children have my genes and are the branches on my tree. The roots start with me. Thank you Patricia, for giving me the chance to plant them and thank you mom for taking such good care of them for 42 years.

I would be amiss if I didn’t mention my mother. If anyone was meant to be my mother it was her. She couldn’t wait to pick me up that day in October. She continues to support me even when she isn’t sure how she feels about the choices I make. She is always there when I need her. Maybe ten minutes late but there nonetheless.

Just Do It

One of my favorite ad campaigns is the Nike “Just Do It” one that basically says quit complaining about your fat ass, just run. Ok, maybe that’s not what it says to everyone but that is what it says to me. Just run. Just go to the gym. Just register for a race. Stop whining and just do it.

When you are thrust into the Heartland ‘Just Do It’ has a new meaning. You aren’t given the luxury of time to weigh pros and cons. You never know how much time is on the clock because it isn’t clear. There are no guarantees and nothing should be taken for granted. You don’t have time to waste.

I don’t ever want to look back at my daughter’s life and say “I wish I fought harder to get better care. I wish I kept pushing for another look, echo, or cath. I don’t want to have regrets if I can avoid them. I live with many regrets, the biggest being not telling my best friend how much she meant to me while she was alive. How I wasn’t there when I could have been. How I should have followed my gut instinct to reach out and tell her how sorry I was that she couldn’t live with me anymore. Instead I am left with an emptiness of what if.

And then years later I get blessed with a child that has one of the most severe congenital defects you can have. Thank God we live 40+ miles away from the number one cardiac center in the world. I don’t have to arrange for transfers, be on the phone with insurance companies begging for better care. Instead we have been blessed with being here but I watch many out there suffer trying to get their children the best possible care they can get.

And I also watch people not understand the severity of their child’s condition and wait too long or do nothing at all. No, retracting isn’t normal. No, Hershey’s isn’t a great hospital when CHOP is not far from you. No, not vaccinating your child with a CHD is not a good idea. No, blue tint to the fingernails and mouth isn’t a good sign combined with no weight gain.

I see moms, aunts, and grandmothers trying to get children they love the care they need and can’t for various reasons. It’s hard to watch. It’s even harder to watch a mother wait on getting transferred until her child is too sick to recover. Even with people giving suggestions and providing help. I wish I lived closer to the city so I can offer what living space I have to someone who needed to be here but couldn’t afford housing. I ask myself every day “what can I do to help someone get here?”

Boston is the reason why Isabelle is doing as well as she is. Period. I know there are other good centers out there, but there is no doubt BCH is a huge part of her success up to now. I want my heart mama friends to have the same success. I want their children to get the best chance possible even when every other center thinks its impossible. I have witnessed too many examples of people who were given another chance here. It’s amazing. The Heart Center has been jammed with patients because so many parents are just doing it and making the transfers happen. Yes, it bumped our surgery a few times but when I think about what other people have done to get here, it doesn’t bother me. And her surgery happened anyway.

Just do it. If something isn’t right with your child and CHD runs in your family, just get an echo. Get a second opinion. Find answers. Don’t settle for less. Your child is worth every effort regardless of what center you are part of. I just know this is true for me. And this applies to my constant complaining about how out of shape I am. Just lace up and head out.

And while I am writing this, Izzie had another famous vomiting spell. It was brutal to watch while I was holding her. This was her second one today. I know it’s normal to have a crazy stomach post op, but this has been crazy. I demanded Zofran after this last bout. Yes, demanded it. Watching her writhe away from me helplessly was enough to get the demands going. No hesitation here. I used to think that my impulsivity was a major defect until I became a heart mom. Now I see it as an asset in certain situations. Like the one we just had a half hour ago.

Moment by moment. There is no time like the present.

Extraordinary measures for an Extraordinary Life

It takes a certain type of woman to make a heart mom. It doesn’t always come naturally. Some slowly evolve into the advocates their child needs while others jump in with both feet. Some have a hard time accepting that their lives have changed while others seem to go with the flow because…well…what else are you going to do?

I am a combination of a few of these characteristics. In the beginning I had a very hard time accepting that our child was not going to be the healthy one I asked for. The next stage for me was an insatiable desire to learn everything I could about congenital heart diseases, hypoplastic left heart syndrome, and surgical options. I became connected to other moms and learned what questions to ask, what surgeons to ask for and what to bring to the hospital.

Chris and I have always been vigilant with Isabelle’s care. During interstate we were inpatient at least 7 times and tried our best to give her the best chance. I was a total bitch when I had to be and sometimes when I didn’t have to be. I have her cardiologist on my ‘favorites’ phone list. Her surgeon is on my email contacts list. He responds within a few days to my inquiries. Her pediatrician is open with communicating to her team her and has always made sure she was on the same page as Boston. Extraordinary.

There are some downsides however to being a heart mom. You become a germaphobe in a way that is hard to justify to others. Viruses that send children to the ER are your worst nightmare. Tonight a little girl was in the family waiting area on the Cardiac Intensive Care Unit with a wet cough. I stood at one of the tables horrified that her family member had her there. She then went over to the water fountain and put her unwashed hands all over the ice machine and water dispenser. All over it. Fuming, I went to the front desk and asked what to do about another family being sick in the area. The admin wasn’t happy and sent a cleaning crew to the family room. Tonight we went to have pizza in the family room and the child was still there. Needless to say we ate somewhere else.

You have to be prepared to see your child in the most helpless state possible. You have to prepare to see them hooked up to machines, see their blood run through tubes that painfully exit their bodies and let other people poke and prod them. People tell me how strong I am because of what we have gone through. I’m not sure if it’s strength or plain shock at the sight of seeing your sweet child in pain and not being able to do a damn thing to comfort them.

But the worst moments are the ones where you feel like grabbing the tubes and taking them out yourself. The moments when your two year old looks at you with pain in their eyes, silently screaming. The ones when every fiber of your being wants to pick that child up and soothe them but you can’t. All you can do is sing softly to them, rub their heads, hold their hands and keep your eyes locked onto theirs as if you were holding them with your gaze. Those moments are the ones that separate us heart parents from the rest of the world.

Please don’t complain or stress to me about your child’s shots. Be grateful that is all they need to have. Please don’t complain about having to keep your child home from school because of a minor cold. It’s not minor to us. Please don’t assume we ingested something so horribly wrong out children were formed this way- as if we heart moms are responsible for our children’s suffering. And if you do have the good fortune of a mistake on an echo meaning your child doesn’t have HLHS, don’t go on an HLHS page and say that God was on your side. I guess He wasn’t on ours then? To all of us who prayed for healthy children comments like that are a slap in the face.

No one wants to be a heart mom or dad but I am convinced that some people are just not cut out for it. We are extraordinary people who are willing to go to any lengths to get the best care for our children. We do the footwork to have them transferred even though it is very overwhelming to move to a city you have never been to or get the paper work lined up to make it happen. We research the various medical centers to see what the outcomes are, and if the center doesn’t comply, we demand transparency to make informed decisions for our children. We take matters into our own hands and drive to another hospital hundreds of miles away with oxygen so that child could have a chance instead of hospice. We hand our children over to doctors with the possibility they may not return to us or that we may never feel their kisses on our faces.

This is what my life has become and here we are at the last stage of her repair. I am very grateful for the support I have received from fellow mamas here, across the country and around the world who have sent prayers and words of encouragement. We get excited as a community when our children do well, and we cry together when they don’t. We band together when someone wants to transfer their child to a different center and do what we can to make their journey a little easier. We sell t shirts for each other’s children to help raise funds for our friends so they can have one less thing to worry about.

This was not a club I wanted to join but I am sure glad I made it in. Membership is a heavy price but I didn’t have a choice on paying it.

Izzie is doing well tonight. She is breaking a little more comfortably and we should be on the floor tomorrow. I am so proud of how much she has been able to get through!

IMG_0452.JPG

Stage 3 – Third Time’s the Charm

Having a child with a complex heart defect is pretty challenging. The first being accepting that something went wrong in those first 8 weeks that caused the defect and doing your best not to second guess everything you ate while you were pregnant. The second is when you hear about the proposed solution and the surgeries your child will need to go through in order to live. The third challenge is an ongoing effort to learn how to navigate this new world of hospitals, doctors, nurses, health insurance representatives and pharmacies without losing your mind. I am afraid I haven’t done a great job with any of the challenges, but I can say that I did my best to meet them and never expected this experience to change my life the way that it has.

I never expected to be so well versed in medical terminology. Of course I can’t think of any right now but I sometimes people ask me if I am a nurse which I find hilarious. I am not a nurse, just a heart mom.
I never expected to be able to live in the moment. My mind is always racing, always somewhere else and never where my feet are. Having a sick child with an unpredictable life span really makes you appreciate every moment you have with them because you never know when situations change.

Most importantly, I never, ever expected to be so supported by my family and friends over the past 2 1/2 years like we have been. Today I have received an outpouring of kind messages, prayers, texts, and Facebook posts all with encouragement. I don’t have enough words to thank everyone. It is truly amazing to hear from people from my life starting from elementary school to college, colleagues, friends and fellow heart families. I needed these messages of comfort this morning. I wasn’t emotionally prepared enough and looking at all of the messages of hope is allowing me to get through this.

This morning was very difficult. She was frightened. She knew something was going on and she wasn’t liking it at all. Izzie had a a hard time with the medicine and after getting the dose proceeded to vomit profusely in my arms. Tears coming down her face the whole time. She finally calmed down after the medicine began to kick in and after a few hugs and kisses, the nurses and anesthesiologist took her back. This time truly was the hardest as we watched them take her down the hallway.

The fontan is the final stage of the three staged repair. Dr. Emani plans on doing a lateral tunnel approach, meaning he is creating a tunnel through her heart using her tissue and a few scraps of paper. No, I really am not sure what the other material is but that is what it sounded like when he was explaining it to us. This new circulation will allow fresh oxygenated blood to her body instead of the mixed blood she has been living with. Her oxygen saturations have always been good. We have been very fortunate in how well she has been doing overall and I know she is going to run circles around us in no time. I know she needs this in order to stay the course of doing awesome. My fears are purely selfish ones. How am I going to handle seeing her wake up while intubated? How am I going to deal with her pain? Will the hospital throw me out as every character defect I have decided to make an appearance?

I have faith that her surgeon will do an incredible job. I know she is going to be fine. Well….kind of. Most importantly I know that no matter what the outcome is- I have so many people holding me up right now and it doesn’t get better than that.

6 Days and Counting

Tuesday is looming over in the distance like a lone dark cloud on a sunny day. Izzie is blissfully unaware that 6 days from now she will be on an operating table with her chest split open and her body on ice. She has no idea that they are going to stop her heart and put her on bypass so they can do the final repair of her Fontan. She does not know that this will hopefully be her last surgery for a long time, or even that there is still a possibility of a future transplant when she gets older. She doesn’t even know her heart isn’t like everyone else’s. All she knows is that the Backyardigans are awesome and that Dora needs her to say “Swiper no Swiping!”

I know other parents have tried to prepare their child for surgery by talking about it, reading stories about the hospital and explaining what is going to happen. With a two year old it is really hard to explain the concept of what is going to happen since I barely understand what Dr. Emani is planning on doing. To be honest I am very worried as to how she is going to deal with being poked and prodded again. She has made the connection of white coat=owie. I don’t know how to abate those fears and am hoping I get some answers today.

Her upcoming surgery affects all of us and I am also worried about how to is going to affect her sister Adeline. Liz I can talk to and she is pretty good about telling me things (most of the time). Addie has already said she wants to see Izzie every day. She doesn’t like that idea that she won’t wake up to her sister every day for a little while. I am so grateful she has no idea what is about to happen otherwise I would have a very worried four year old on my hands. All she knows is Izzie is going to be at the hospital because she needs her heart fixed. She knows a healthy person has four chambers while Izzie only has about 2 1/2. Chris and I have made a big effort to make Addie s secure as possible since we both are going to be back and forth to the hospital and she will be with family a lot.

Last night I did a little housecleaning. I took out the bags I will need for the hospital. I also sat down and wrote out a personal inventory of what has been going on the last two years. I can’t believe I finished it in one night but I was able to be honest and get out a lot of junk that has been floating around inside. I woke up feeling much better than I have in a long time and am so grateful I was able to take care of myself in spite of the focus being on the girls.

I know how fortunate we are that Isabelle is doing as well as she has been doing. I know that there are many children who still struggle post-Fontan. I haven’t been able to get myself to check Facebook this morning because I am afraid of what I will see today but I care about my fellow heart mama friends who are at their children’s bedsides sick with worry. I will check in a few minutes. But for now, I wanted to sort through my anxiety of dealing with Izzie’s reaction to walking through that revolving door. I know we have many people praying for us and for that I am so grateful. I don’t know how I would be able to get through anything that is going on in my life if it wasn’t for my family and friends. Thankfully today all I have to do is show up at my job, do what is asked and see my girls tonight. Oh- and bake cookies for snack for my home group. I don’t have to get a parent badge, hold her arms while they try to get blood, listening to her crying in my ear and watch the tears roll down her face. I can just enjoy the day that I have.

6 Days and Counting

Tuesday is looming over in the distance like a lone dark cloud on a sunny day. Izzie is blissfully unaware that 6 days from now she will be on an operating table with her chest split open and her body on ice. She has no idea that they are going to stop her heart and put her on bypass so they can do the final repair of her Fontan. She does not know that this will hopefully be her last surgery for a long time, or even that there is still a possibility of a future transplant when she gets older. She doesn’t even know her heart isn’t like everyone else’s. All she knows is that the Backyardigans are awesome and that Dora needs her to say “Swiper no Swiping!”

I know other parents have tried to prepare their child for surgery by talking about it, reading stories about the hospital and explaining what is going to happen. With a two year old it is really hard to explain the concept of what is going to happen since I barely understand what Dr. Emani is planning on doing. To be honest I am very worried as to how she is going to deal with being poked and prodded again. She has made the connection of white coat=owie. I don’t know how to abate those fears and am hoping I get some answers today.

Her upcoming surgery affects all of us and I am also worried about how to is going to affect her sister Adeline. Liz I can talk to and she is pretty good about telling me things (most of the time). Addie has already said she wants to see Izzie every day. She doesn’t like that idea that she won’t wake up to her sister every day for a little while. I am so grateful she has no idea what is about to happen otherwise I would have a very worried four year old on my hands. All she knows is Izzie is going to be at the hospital because she needs her heart fixed. She knows a healthy person has four chambers while Izzie only has about 2 1/2. Chris and I have made a big effort to make Addie s secure as possible since we both are going to be back and forth to the hospital and she will be with family a lot.

Last night I did a little housecleaning. I took out the bags I will need for the hospital. I also sat down and wrote out a personal inventory of what has been going on the last two years. I can’t believe I finished it in one night but I was able to be honest and get out a lot of junk that has been floating around inside. I woke up feeling much better than I have in a long time and am so grateful I was able to take care of myself in spite of the focus being on the girls.

I know how fortunate we are that Isabelle is doing as well as she has been doing. I know that there are many children who still struggle post-Fontan. I haven’t been able to get myself to check Facebook this morning because I am afraid of what I will see today but I care about my fellow heart mama friends who are at their children’s bedsides sick with worry. I will check in a few minutes. But for now, I wanted to sort through my anxiety of dealing with Izzie’s reaction to walking through that revolving door. I know we have many people praying for us and for that I am so grateful. I don’t know how I would be able to get through anything that is going on in my life if it wasn’t for my family and friends. Thankfully today all I have to do is show up at my job, do what is asked and see my girls tonight. Oh- and bake cookies for snack for my home group. I don’t have to get a parent badge, hold her arms while they try to get blood, listening to her crying in my ear and watch the tears roll down her face. I can just enjoy the day that I have.