Boston Children's Hospital, HLHS

Lacing up.

For those of you who don’t know, I am participating on the Miles for Miracles team for Boston Children’s Hospital running the NYC Marathon in November. I have goal of $3,000 to raise. I am hoping to have $500 by Aug 5th, but that seems like a lofty goal after checking my fundraising page. Overwhelmed doesn’t come close to describing how I feel right now, especially since my credit card will be charged the $500 because I haven’t made my deadline.

So far I have had $0 donations. That’s it. Goose egg. It’s my own fault, really.

I’m not as aggressive this time around but that will change. I have had other things that I am trying to balance in addition to training for 26.2 miles and going forward I need to come up with some strategies for fundraising. I know people have donated to all different charities on GoFundMe, PMC Challenges, and other causes. I appreciate others’ hard work in their fundraising efforts. It’s just disappointing when I look at mine.

This blog is for me to express myself and perhaps I am shooting myself in the foot by voicing my disappointment in the fact that I have nothing. Here is what my page has said to me today: It makes the people who told me I was crazy to do this fundraiser right. It validates the expressed concern over why on earth would I run a marathon and try to raise an additional $3,000 total towards Boston Childrens. In spite of allowing my shoulders to cave in a little with my deep sigh, it doesn’t deter me from continuing on moving forward.

Ok sure, so no one has donated anything yet. Yet. I have big plans for the fall when she is post fontan and I am a little more focused. With each mile I run I become one step closer to Staten Island and that is important to me. Running this marathon, after years of saying “I wish I could run a marathon” is huge. This is a huge moment for me as a person, as the mother of a chronically ill child, and as a runner. This is a really big deal to someone who first laced up her sneakers in 1997 to run a 5K with a friend and decided at Mile 2 that this is what she wanted to do for life. I quit smoking that day and bought a pair of Nikes that evening. I haven’t looked back since.

Running has allowed me to get through many difficulties in my life. To me, it is a metaphor for life’s challenges. You get out what you put into it. Same thing with this event. I will get out what I put into it and frankly, I need to put more into it. I know this. When I ran my first half I didn’t train very well. I thought I did, but when I followed a training plan for the second one, I noticed a huge difference in how I felt at the end. Amazing. Like I accomplished something I never thought I could do. I can’t wait to have that feeling again as I cross the finish line- hobbling, running or crawling. I will never forget telling  Isabelle’s namesake that I had run my first half marathon and his response was “Why didn’t you run a whole one?” I will be wearing one of his track medals in November.

This training has been hard. Last night I ran an ‘easy’ three miles but I pushed myself anyway by increasing speed and effort. My heart pounded and I struggled to  maintain my breath with each step. As I tried to catch my breath I reminded myself that this is how Izzie feels every single day. I call it putting myself in her shoes because it is the only time I can feel what she feels. Every day she embraces life with all her half of a heart. She hasn’t slowed down yet, and shows no signs of her illness other than her grayish-purple lips. I watch her try to keep up with her sister and I love watching the excitement in her eyes as she runs after her. “I run!” she yells with a big smile on those purple lips. You can’t help but smile back. Her joy in spite of what she has already been through and will be going through this September amazes me.

The link to my fundraising page is below. If you have an extra $20 (or anything for that matter) please consider donating to a hospital that has helped so many children- not just mine. Thank you as always for reading.

Boston Children's Hospital, Family, HLHS

Mixed Celebrations

I know I haven’t written in a long time and I am not sure what my excuse is this time so I won’t insult your intelligence with one. As some of you may know, I am in the process of separating from my husband by my own decision. There are days when I feel like the most selfish woman in the world. There are other days when I feel like I can breathe. And then there are days like today- when I feel everything at once.

There was a post that Sisters by Heart posted today about medical children and the effect they have on how you look at your spouse. I read part of it as I was on the T coming in to work. The author writes about how she viewed her husband differently after their child was diagnosed with an illness. How he was her source of strength, and their love grew stronger than ever. My experience started out the same way and then kind of went off on its own.

When the OB told us about Isabelle’s heart, I cried from a place inside of me I didn’t know existed. Chris was right there, holding my hand, and crying with me. We had no idea what this would mean for us or for our family. All we knew is that our baby was going to need life-saving surgery otherwise it wouldn’t survive. We didn’t even know what we were having and left the office holding each other as we made our way to the car.

The next day we went to Children’s and learned about Hypoplastic Left Heart Syndrome and what we could expect. The picture wasn’t as bleak as we had originally thought but I couldn’t find any joy in the pregnancy. I didn’t want to hear stories about babies born with holes in their heart and how all of sudden they didn’t need surgery and were FINE. I didn’t want to be called out for not wanting to hear those stories either. Yes, I was bitched out on FB because I was emotionally posting and trying to manage my feelings.

I wanted support from family. I wanted people to talk about it with us. I wanted to talk about it. I was in mourning for my happy normal pregnancy. I didn’t need to field questions about names, or if we wanted hand me down stuff brought over. I was alone with these feelings. I was alone feeling like no one understood how I felt. My husband didn’t understand the place I was in because he was dealing with his own stuff, but unlike the couple in the story, we didn’t meet back together in the end. I felt so confused, torn and had no idea how I was going to get through my pregnancy for the next 4 months. Then Sisters by Heart came into the picture and told me it was ok. It was ok to not want to give her a name right now. It was ok to have all these mixed feelings and to not have faith at times. It was ok to be sad and to mourn the pregnancy I wanted to have.

I think I would have lost my mind if it wasn’t for those moms who reached out to me.

I know Chris meant well, and he does in fact, mean well. Sometimes he hit the mark, but other times he didn’t. He handles things differently from me. I need to learn about everything that could possibly happen and he was on a need-to-know timeline. I asked the doctors questions, chatted with other heart moms and talked to a therapist about what was going on. He just talked to me. I needed my family to give me words of encouragement and support and his family passed along to him their encouragement that he neglected to tell me. He didn’t see it as being important to me while I harbored a huge resentment at his family for not saying one word to me about what we were going through. Not one word.

I tried sharing the care package we received from Sisters by Heart and update people on our appointments. We had a heart walk to raise money for the Children’s Heart Foundation. I was disappointed that people weren’t supportive at first. Pediatric cancer was a bigger cause than a niece’s heart condition that was fatal. Eventually we did get some support there and even had people walk with us which was nice. I felt better about the road we were on and that people weren’t pretending like her heart was going to magically grow the other half. We met other families whose children had CHDs. Once again we were together going in the same direction.

But it wouldn’t last. I would get more anxious as the date grew closer. I knew soon she wouldn’t be safe anymore and I relished every moment of those last few weeks. We got through labor and delivery, her first surgery and her recovery. I started to feel disconnected when we began our inpatient stays. My personality is such that I am aggressive when I think something isn’t going right. He is the opposite. I would ask questions. He figured if the doctors had concerns, they would tell him. Eventually I would text questions I would want him to ask during rounds so I could get answers even when I wasn’t at the hospital. Compromise saved the day.

But again, it didn’t last. I signed us up to be patient partners for the Boston Marathon Miles for Miracles event because of my love for running and to raise money for the hospital that saved Isabelle’s life. I was alone in my enthusiasm for this. As the fundraiser came closer people joined in the efforts and it all came together with the help of many people. I would have liked it if that enthusiasm was there from the beginning, instead of feeling isolated in my desire to do something different.

There are two families whose children are having major surgery today. People all over the Heartland are rallying for them and it is awesome to see and be part of. I think that has made me think about Isabelle’s upcoming Fontan surgery, and how I am going to deal with soon to be former inlaws. They will be there to support him but will I be able to be in the same room? Am I going to get glares and angry comments while waiting for surgical updates? I know I am projecting which is never a good plan.

Isabelle is turning two in one week. One week she will be one year on this earth longer than I thought so many months ago. We are having two separate celebrations- one on Saturday and he is doing his on Sunday. I am sad that we can’t be celebrating this incredible achievement together. My hope is eventually we can get through this separation and meet in the middle someday. Going back is not an option, but moving forward is. Unfortunately our partnership was missing some fundamentals that needed to be in place to weather the storm of having a sick child and getting through major differences in personalities. My heart knew I couldn’t stay and I was tired of constantly being at odds with everyone. And I mean EVERYONE.

Lots of stuff going on in this head. Stuff I can sort through during my training runs for the NYC marathon I am participating in for Miles for Miracles. This time I get to lace up for Izzie and the honor is all mine. These mixed emotions have fueled some miles and I am grateful I have a new sense of purpose. I know there are people out there who think I am the most selfish woman on the planet. They can think that if they want. I know what I have been feeling and how I feel now. That, and the love of my girls is all that matters to me.

Boston Children's Hospital, HLHS

Home Turf

Over the past few days I have been witnessing people at their worst. People who are making assumptions without knowing the facts, and people who are blindly posting their ignorance in response to a public statement made by Boston Children’s Hospital on the recent Pelletier case. Even Beck, in all his funky glory, has weighed in on the conversation. He claims to know the story, yet still believes this girl is at BCH. She is not. I don’t know where she is but I do know the hospital is no longer ‘holding her prisoner’.

She has become a ward of the state because of evidence that none of us other than the defense and the prosecution saw. Her parents are riling up the general public in hopes for support. They claim she was kidnapped and that they lost their parental rights to her and her care. All the claims make Boston Children’s responsible. My question is, responsible for what? For acting on their conscience and reporting something they felt strongly about? For taking on a liability as expensive as getting the state involved in this situation and taking a child away from her family because they felt it was for her own protection? Here is what people don’t understand- it takes a lot of evidence for a child to be taken like this. A lot of evidence none of us has seen. If it comes out that these conspirators are correct than by all means, serve me a crow on a plate sunny-side up.

Both sides of this have not been presented because of the gag order that apparently, not everyone paid attention to, including Mr. Pelletier himself. Claiming her life is in danger, he is breaking his ‘silence’ on what is going on. The support he is getting is ridiculous. People have been posting about how they themselves lost control over their loved ones’ care at hospitals, about how BCH is like Auschwitz, and how they should storm the hospital to free her themselves. Here’s the thing: for every procedure that was done to Isabelle, we had to sign consent forms. Staff went through what we were signing with us. We never felt coerced to do anything we didn’t feel was in her best interest. I have copies of the forms in a folder that is 2 inches thick. We signed consent for everything they did. Everything. There is absolutely NO WAY I could ever claim that I didn’t know what I was signing. No way.

So I don’t believe these people. I don’t believe that they are 100% innocent bystanders while the nurses and doctors ‘chained’ their daughter to her bed. I don’t believe that she has mitochondrial disease on the grounds that if she did, they would have found it when they were covering their bases for this case. I don’t believe a doctor’s ego has the power to make decisions against a family’s wishes. It didn’t happen to us because I have learned to be my daughter’s best advocate. I have learned to speak up in a way (ok, not all the time.) that allows me to be heard during rounds, tell the staff things like “no vitals, she needs to sleep” and not have Dept of Child Protective Services at my doorstep. It didn’t happen to us. I can be pretty aggressive when a primal instinct like protecting my daughter is set off but not once did anyone at BCH say to me “You need to leave.” Ok, maybe our NP did tell me that but it was in the interest of me getting rest so I would be able to handle the challenges that lay ahead. And she was looking out for her nurses.

The way I feel about Boston Children’s is kind of how I feel about my high school. Let me explain.

I have had a lot of mixed experiences in high school, some great and some not so great. I have had to endure some hard times, loneliness and feeling like it was never going to end. I also felt joy, made some incredible friends, and have a sentimental connection to all who have been there. At Plymouth North, I walked through my own personal fires and I carry those experiences with me. I feel passionate about both places because they are my home turf. Places where I had gone through intense emotional growth. I had my heart broken in these places. I had it put back together. I met incredible people with whom I would run into a burning building for. When I used to go to the old high school, as broken as it was, it was still where I spent 4 years of my life day in and day out. A piece of my life was in those walls. Same with BCH. We have spent many days in those halls, rooms, labs, and offices. We have gone through such great emotional upheavals in those halls. And it isn’t over yet.

Yesterday Izzie was having a blast singing “Twinkle Twinkle Little Star”. She was singing it when her new GI doctor came into the room. He smiled and began singing it with her. I thought to myself “I love this guy. He gets it. He knows she has been through a lot, and wants her to be comfortable.” It was our first appointment with him and I am so grateful we have another incredible experience to add to our collection. BCH gave me that experience. It gave me a beautiful daughter who loves her family and enjoys life in a way I can’t describe. She is a blessing that we weren’t sure we would have. I will never turn my back on the place that gave her to us. The place that showed us how to take care of her, how to help her thrive. A place that will keep her heart beating and that respects us as parents.

Boston Children's Hospital, Family, HLHS

Day 18 of 30 Days of Gratitude: I am grateful for the support we receive from our friends and family

I may have already mentioned this but it certainly is worth posting twice about- the support we have received from our family and friends during this past year. Not only has our little one gone through two open-heart surgeries, hospitalizations and various infection, reactions, etc., I also lost my job this year which was devastating to me. People reached out, sent suggestions on where I should look and what I should do to try to get some work. People offered to watch the girls so I could go on interviews and client meetings. It has not been easy, but I am slowly starting to see the fruits of my labor with a returning client and another good relationship.

I was encouraged to broaden my horizons a little and have enrolled in a WordPress course. After walking through some of it in class, I realized I knew more than I thought, which is always a good thing. My husband supports my yoga, and watches the girls so I can go find some peace for 90 minutes. 90 awesome minutes.

Our pediatrician is so supportive of my questions, my enthusiasm for sharing information that I myself am learning about Isabelle’s disease. The office allows us to be placed in a room immediately so we aren’t waiting surrounded my germs. When I have made calls to the nurse, our nurse is always placed on the phone because she knows Izzie so well. They care when she gains an ounce. They celebrate when she gains a pound, shows off her walking skills and big smile.

The support we have gotten from our awesome cardiologist never ceases to amaze me. She lets me call her about the most minor thing and responds to the pics I message her with great enthusiasm. She was the first to give us the details on what we were up against, and she provided the best information possible. She didn’t leave the room until she felt our questions were answered and if they weren’t, she never minded a phone call. All of those days when Izzie would lose grams, not eat what they wanted her to, and would just get so sick- she always answered the phone. It got to the point I didn’t have to introduce myself, she knew it was me. When we were inpatient, she would always check on us. When Izzie would be so aggravated that an EKG may not be a wise move, she said she was ok with not torturing her anymore. Same thing with the blood pressure cuff. It was ok, she didn’t need to be upset anymore. Her encouragement to let Izzie live like a normal child is something I am so grateful for. It would be so easy to shelter her, but she pushes me to let her do what kids do. It is exactly what I need.

Our family has stepped up every time we needed to go to the hospital, whether it was my sister in law who took Addie in while Izzie was born, or my parents coming over to stay with the girls so we could rush her to the ER. My aunt who came over to help me when I needed someone to watch Izzie during the week before she could go into daycare. People joining us for the Heart Walk we have done every year. This year, our charity is Miles for Miracles and I know I don’t even have to ask for peoples’ support.

Our surgeon is incredible too. Taking the time to go over the procedures, even going ahead and fixing a situation that wasn’t necessary at the time. Feeling bad about not having a better solution for Izzie but telling me he isn’t going to stop trying to find a solution for HLHSers like her. Can’t get much more support than that. Plus, I have a whole post dedicated to him later.

I am indebted to my friends- some old, some new- who have all posted on my page, asked me how she was doing, and cheered her on. Friends whom I haven’t seen in years have wished us well, donated to our cause and continuously send positive messages that make my day.

My heart mama friends. Fellow trench-dwellers. I value the encouragement, prayers and cheers I get from you as much as everyone else. Some even more so, because I know you have walked this path too with more adversity than us. The support I get from another mama who is in the hospital sitting by her child’s bedside is priceless. I know it helps me to reach out when I am in the same place, I am so grateful when others did that for me.

All of this support and love have sustained us during some pretty difficult times- some heart related, some not. Tomorrow we bring Izzie in for a cardio-neurodevelopment assessment. I am hoping she is further along than I think she is, and that we are on the right track. It’s hard when I see other peoples’ children who are the same age do a lot of things she can’t yet. But then again, Izzie is Wonder Woman.

Boston Children's Hospital, Family, HLHS

Day 12 of 30 Days of Gratitude: I am grateful we live 59 minutes away from Boston Children’s Hospital

The day we found out that our baby was going to be born with such a severe defect that surgery was necessary to sustain life was a very painful day. We sat in the doctor’s office listening to the next steps of getting an appointment at the Advanced Fetal Center for an echocardiogram that would determine how severe the defect was while trying to process the information we had been given 30 minutes prior. My husband made the call and we had an appointment for the next day at one of the top pediatric cardiology centers in the world. Not just the US…the world.

We met Dr. Levine on March 6 and began one of many trips to BCH. As we went through the pregnancy we would reassure ourselves that we were at one of the top hospitals and that the outcome would be good. Of course, I would have moments of sheer panic when I would think about what this surgery would mean for all of us. We would be separated from our two daughters. How long would I need to be out on leave for? Would I even be able to keep my job? What if something awful happens? Would I be able to get through if something happened?

The road to BCH became more familiar every time we had to go in. First we had the echocardiograms.Then we met the surgeon who was going to save her life. After another appointment we had a tour of the Cardiac Intensive Care Unit where we were to spend her first week of life. Total number of days we stayed at BCH after the first surgery was 22: 7 days in the CICU and 15 days on the floor. We had many more appointments after she was born, starting in Cardiology clinic, moving to gastroentralogy, and landing in Neurology for the cardio-neurology program. We also traveled for minor emergencies and feeding issues. Every time we were inpatient the nurses and medical staff went above and beyond to make our experience as comfortable as possible.

During the holidays last year we were inpatient. Right before Christmas as a matter of fact. We were given a pass to attend a shopping event that would take place at the hospital for families who couldn’t get out to shop. We didn’t have to pay and there was even a gift wrapping station! We were able to attend the Boston Pops Holiday concert that Keith Lockehart conducted in the Family Entertainment Center. Santa came to visit, and the nurses gave us little christmas trees to decorate if we wanted to.

During rounds I would be told by various attendings that Isabelle looked amazing. One doctor even said to me that the repair done on her heart was ‘perfect’, which is why she is doing so well. I can’t imagine if we didn’t have access to the doctors we have or the surgeons who have made her well-being possible. I know when I read other peoples’ posts about the hospitals their children are in, there are times I thank God we are where we are.

I will never forget one day during Isabelle’s stay in the CICU after her first open-heart surgery, and the hospital clowns came by to visit. She was sleeping in the isolate hooked up to a ventilator, monitors and numerous IVs. They played the most beautiful song to her, and even though I can’t remember what the song was, to this day when I think about that moment I have tears in my eyes. At that moment, they were singing softly, playing the ukelele, as if she were just another baby in a crib. I stood by where her head was stroking her hair. It is a moment I will never forget and there were many other moments like that but none have impacted me the way that one has.

After we were discharged after her second surgery a strange lump appeared on her incision. It became angry, red and full of god-only-knows-what. I took a picture with my phone and sent it to the cardiologist who immediately called me. “You need to head to the ER right now.” I am never crazy about the ER. I feel like it takes forever to get out of there. This time was no exception and I was at a breaking point due to being scheduled to fly out for a conference that weekend and knowing that I had to be at the office in 4 hours. I was a mess. The nurse went out of her way to get us a bed. They listened to me rant and handed me a pillow. It was not one of my finer moments but when I did come back, no one said anything other than it was nice to see me.

Perfect repair. Human touch. Beyond excellent medical care. These are some of the reasons why I chose to participate in Miles to Miracles as our official charity this year. I want to raise as much money as possible for the center that saved our daughter’s life and blessed us with such an amazing little girl. I can’t keep her from getting into things like every other toddler. She constantly disappears on me. I usually find her either in the bathroom trying to get into the tub or doing her usual stairs workout. And she is hardly out of breath. Hardly. Out of. Breath. It’s almost like she has no idea that she only has half of a heart.

I owe this all to Boston Children’s. I am so grateful we had access to the best care possible. Chris is grateful they never incarcerated me when I would have my Mama Bear moments. I knew how incredible the hospital was before when Liz was treated for her infected cyst years ago. Seeing what they have done for Isabelle just renders me speechless.

Boston Children's Hospital, Family, HLHS, Sobriety

30 Days of Gratitude – Day One

An Intro

Last November my newsfeed was filled with posts of gratitude and thankfulness each day. Thirty days of thankfulness was the theme but rather than do something to make myself feel better, I decided to read everyone else’s posts and not write my own. This year I decided that not only would I post 30 days of gratitude, but I would take it one step further and write a thankful blog post every day. A long time ago a wise woman told me ‘A grateful heart doesn’t drink’. Unlike some of you I do my best to keep myself from drinking since alcohol and I do NOT get along so this advice was very instrumental my first year of sobriety. Every day I had to make a list of everything I was grateful for. In the beginning I would get really mad, since I no longer was allowed to feel sorry for myself or be negative anymore. It was very uncomfortable but with each list, my attitude began to turn around. I learned how to flip things over and for the first time in my life, I was able to redirect my thinking.

You see, I don’t like being negative. I don’t enjoy being miserable. I just thought that was how life was to be for me. By focusing on the positive in my life I could pull myself out of the negative vortex I had created for myself through gossip, selfish behavior and dishonesty. I still need to practice gratitude lists every month, not just for November. Anyone who has followed this blog knows that I have been very negative at times during our Hypoplastic journey. So I am going to shock you with what I am about to say next:

I am grateful that we have experienced a critical illness such as HLHS.

I am grateful that from that fateful day on March 5, 2012 on, I have been forced to truly live in the moment until it has become part of my everyday life. Today, I can appreciate every giggle, every cry, every mess, every smile. I can relish snuggling and kissing cheeks. I was able watch her take her first steps with joy and enjoy searching for her around the house. It’s all good- ALL GOOD, because a year ago, I was in the middle of interstage hell trying to keep her healthy. She wasn’t eating well and no one was able to give us answers on how we could help her. I felt like a failure as they placed her feeding tube down her throat causing her to gag and cry.

Day by precious day we have gotten to this point of enjoying life with our family. We don’t have one person staying at the hospital while the other goes home and takes care of the kids. As tired as we both were last night after patrolling the Candy beat, I know I was so thankful to have a halloween with all three of my girls.