Boston Children's Hospital, Family, HLHS, Miles for Miracles

Marathon Monday

On a day when many people I know are standing at the starting line waiting for the race to start, I am sitting here in my pajamas sipping the last cup of coffee out of the pot. People’s excitement is threaded throughout my FB feed and it is hard not to get excited for them as they make their way to the start of one of the most memorable run of their lives. I am happy for them and thrilled that they get to have such a coveted spot that so many people train tirelessly for and not get. The hope I want to talk about today is my fading hope that someday I will be one of those people.

When Izzie was accepted as a patient partner for Miles for Miracles, I was over the moon excited. This chance would bring me closer to that dream I had of running someday. This would also allow us to participate in the greatest race of the year. What I didn’t count on was other people around me not sharing the same excitement.

When you submit to be part of a great fundraiser such as this, everyone needs to be on the same page. Expectations need to be set and a strategic plan needs to come together. It also helps if the people you are partnered with make a connection to your child. The runners we had didn’t meet Izzie until we had our fundraiser for them before the race. I would be sending emails and forcing the connection. It felt very awkward. It didn’t feel as though they really understood what our life was like  as a medical family and how fortunate we felt to have Boston Children’s in our lives. I was hoping that we could be at the Miles for Miracles events together. That didn’t happen. On the day when we were to meet the runners at an event sponsored by the hospital, neither one was able to make it. I felt like my dream of having this inspirational experience was fading fast. This wasn’t what I had thought it would be. It didn’t get much better after that first event.

We planned a fundraiser and thanks to my in-laws, was a huge success. I guess it was a good thing that they took over where they did and made everything happen. There were many parts of the planning that I hadn’t though of but they did. As the days came closer to the date,  I began feeling like this was not a good idea. The parts that I did do – the brochure, posters, and news article, weren’t good enough. I felt very disconnected and not an important part of the process. To make matters worse, the runners who were running for Izzie didn’t understand that we were raising money for them. I can’t imagine how I would have felt if they didn’t show up.

After the fundraiser, things didn’t improve much. The benefit recognizing us for our efforts was very stressful. We didn’t meet or socialize with other families like I had wanted to. This wasn’t what I had planned for in my mind and it was very disappointing. My family knew that I was upset and chalked it up to my typical moodiness.

Race day was exciting and we all were at the BCH area in Wellesley to cheer on our runners. For a little while I felt like we had done the right thing and that we were part of something great. We were part of something great. We helped raise money for the best hospital in the world. We were just like all the other families that were there but we hardly chatted with anyone. It wasn’t the camaraderie that I had hoped for. None of the Miles for Miracles was what I had thought it would be for us.

I am not blaming anyone here. Chris did his best to try to make it be successful and so didn’t other people. My friend had his band play for free and that was a huge success. Other friends from my meetings and such came and supported us. It wasn’t a total loss. What I am starting to see now is that I had forced something to happen instead of letting it happen. I had taken a dream of mine and forced others to share this dream.

If and when I do apply to run for Miles for Miracles again, I will make sure that everyone knows my intentions and is willing to support me. I want to run for Izzie, and for many of the cardiac children who are her comrades in arms on 8 East. She still has her moments and our hopes for new treatments for her condition grow every day. Recently, she was hospitalized overnight and it was a stark reminder that she is not cured. We need more options for her and for others like her.

Tuesday we have a cardio appointment and we are taking Addie with us so she can see first hand that these appointments aren’t always fun. Sometimes it is really hard to be a patient and Addie needs to see that. She needs to understand that her sister didn’t ask to have a heart defect, and wants to be just like her. I think this non-invasive appointment is a great way for her to see this.

I wish everyone on the Miles for Miracles team great luck today and thank you for running for us!

 

 

 

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.

HLHS

‘Nuff Said

It has been quite some time since I last posted, and for that I apologize. I haven’t had the time to write the way I wanted to and since I can’t bring myself to write posts like “I know I haven’t posted in a while but I am really busy so I’ll catch up with you after the holidays 🙂 “, I just thought it every time I sat at my laptop. I have had so much going on in my head too but I wasn’t sure if it was holiday stuff or just my usual craziness. Right now I have a break between my presentation workload and thought to myself “Why not?”.

So….christmas was good. We were all together for the most part and no one was hospitalized. It was a tad emotional when I would see posts on the Boston Children’s of the great activities they put on to make hospital life easier during the holidays. One of them being the Boston Pops performing classic Christmas carols including a reading of the Night Before Christmas. Of course this year Patriot’s very own Gronk read it to the kids. Beats being inpatient as my husband keeps telling me. Speaking of which….I am going to start with my favorite topic: Boston Children’s Hospital.

I understand there are people out there who are subscribing to the conspiracy theory that Children’s is stealing custody from parents and kidnapping their children. Namely, one family in particular whose child diagnosis is in question. I am not a doctor and will not presume any knowledge on mitochondrial disease. I do know people whose children have it and know that it is a tricky disease to treat. What I do know, coming from a family of lawyers, is that NO hospital would EVER take on a liability such as reporting a family to Childrens’ Services without a GOOD REASON. It’s too expensive, it could cost them more than a few patients and most importantly, it goes against everything the hospital stands for. And I am SICK of seeing posts about it. Sick of seeing people freaking out, sick of peoples’ ignorance and really sick of reading abusive messages directed at the hospital, as if they read their twitter feeds and Facebook pages to make major decisions. If you are one of those parents who think the hospital is trying to kidnap children, well, you better find something else to read because frankly, I think you are an idiot. After months of reading these posts I just had to shout from the rooftops how much I have pushed back on hospital staff and we still have Izzie in spite of my ‘outgoing’ personality. 

Boston Children’s hospital took my daughter’s broken heart, put a shunt in, created a hole in the atria, fixed a subclavian artery, created an aortic arch, took the shunt back down, and re-directed her blood flow so she could live. I got in those doctors’ and nurses faces when my instinct told me to. I participated in rounds and asked questions about next steps. I educated myself. Believe me when I tell you that there were days when my emotions got the better of me and my voice reflected my frustrations. I probably looked like I just stepped out of a trailer park some mornings. No one threatened me. No one told me that I was causing problems with treatment. If anything, Chris and I have been told NUMEROUS times that we are great advocates for our daughter because we do question, we  insist on stopping tests when we felt it was too much for her. I will never forget during a barium study Isabelle was screaming to the point of her entire body turning purple and I turned to the staff and said “We are done NOW.” My favorite nurse was with us and she backed me up. They followed our cues. They did NOT tell us that we were wrong. So I will not make any apologies when I write back on twitter or Facebook with my guns blasting. Those of you who know me know that I am the opposite of shy, quiet and demure. And that’s ok. It has saved my daughter’s life.  I have seen miracles walk the halls in there and I think until both sides are presented, the haters need to find something else to do. 

I also have recently seen posts rating the attendees and staff on the cardiac floors. Ummm….what is this, ZAGATS? Sure, I have had to deal with nurses and doctors who drive me crazy but I don’t pass that on unless someone asks me PERSONALLY what my experience has been. I have never sent messages to people the night before their child is to have surgery and tell them bad things about their surgeon. I can’t imagine why anyone would do that personally, but I have heard of that happening. If you are having issues with the medical staff, take it up with them or perhaps a therapist. Don’t tell a parent who is in the process of preparing to hand over their child to a surgeon that their surgeon is a murderer. Common sense should tell you that, but I guess some people are lacking that as well. I know not everyone feels the way I do about Children’s, and I have toned it down where it counts, but when I hear that parents are terrified to question staff due to wrong information, then I just can’t keep it to myself. 

I was looking at the calendar and saw that in two weeks we have a cardio appointment. 2014 will be the Year of the Fontan for us, beginning in the spring when she has her cath and sedated echo. It also marks our first year raising money for Boston Children’s Miles for Miracles. We have two runners assigned to Izzie and they don’t live too far from us.  I cannot wait to meet her runners and have already started to make plans for her fundraiser (March 22 is the tentative date so mark your calendars!).  We also participate in I Run 4 Michael program, and have an amazing runner named Lindsay Tritabaugh running for Izzie in Minnesota. Every time she works out, she dedicates her efforts to Izzie. She has been such a great person to connect with and I feel so lucky that we have been blessed with her as well. 

The past few months I have seen people struggle post-Fontan, and I keep praying that a new way to help cardiac babies like Isabelle comes to fruition. I’ve been coveting other peoples’ bi-vent repairs, and as happy as I am for them, there is a part of me that is sad for Izzie. I’m sad that her heart doesn’t have two ventricles to repair. I’m grateful she is doing so well, but as my three year old pointed out to me not long ago, she needs 4 chambers, not just 3. I cling to the hope that Dr. Emani is working with colleagues to find a better way than the Fontan but for now, it is the best shot she has. 

These are things that plague me when I try to sleep at night. These and whether or not I will be hired by someone. My current contract is awesome, but I do want to belong somewhere eventually. It’s getting harder and harder to ‘just keep swimming’ but it beats the alternative. I know I am doing everything I can to contribute to our finances. I am doing my best to make a good impression and to land a job. I am keeping all of my options open and my best foot forward. The other goal is to join a gym and get rid of this fat ass. I cannot believe how I have been stress-eating. It’s insane. That is another topic for another day. Until next time….

 

HLHS

Day 22 of 30 Days of Gratitude: I am grateful for Dr. Levine

We met Dr. Levine on March 6, 2012. We had just been told that our baby had a severe defect, and that we needed an appointment at the Advanced Fetal Care center at Children’s for an echocardiogram. The first person we met at the center was the social worker. She went over the general procedure of delivery, preparation and surgery. We were asked if we had any questions and I had no idea what I wanted to ask about. 

The tech doing the echo was not gentle. It was very uncomfortable and the baby pushed back whenever the tech pressed very hard against my belly. The heart was so small it was hard to get a picture, but soon in became apparent that something wasn’t right. I had to move into various positions for better views and none relieved the pressure I was feeling from the inside out. After being tortured for about 45 minutes, a woman with long curly hair, glasses and wearing a white coat came in. She introduced herself and began getting images for herself, relieving the tortuous tech. I liked her immediately because she didn’t need to press hard to get the images we needed. 

Dr. Levine confirmed that the baby did indeed have Hypoplastic Left Heart Syndrome. She drew us a picture of a healthy heart, and then one similar to our babies. She explained the three surgical procedures of the Fontan Sequence. She tells the survival percentages and what the odds were. I asked about a transplant and was told that BCH likes them to try to keep their original anatomy for as long as possible, especially since newborn hearts are really tough to find. 

She told us about some of her Fontan patients who did sports activities and how these children seem to limit themselves. She told us about the recovery times of each procedure, mentioning that the Norwood had the toughest recovery but the survival rate at Boston was 80%. She told me to stay away from Google, and to look up Little Hearts, Mended Hearts and CHOP website if I needed more information. 

We left Boston feeling better about the outcomes and we saw her a few more times before Isabelle’s arrival. I had become connected to a few heart groups, such as Sisters-By-Heart and Heart Mamas. I would come to each visit with lists of questions about possible complications. Dr. Levine answered every one of them, and if she didn’t know something at that moment, she would call me later with the answer. We planned everything for the second week of August. She was going on vacation the week after but wanted to be around when she went into surgery. 

Isabelle had her incredible Norwood and we saw Dr. Levine almost every day. She would make a point to stop by regardless of what her day looked like. She answered my phone calls full of questions about sats, arterial lines and feeding issues. While she was away, she had one of her most trusted colleagues be available to us. 

During the Interstage process, I called her a lot. I called when Isabelle didn’t take in very much and I called when she did. I called about how many calories she should be taking, whether or not I should feed her past the 30 minute mark and whether her sats were in the OK range. One day I called and didn’t like how she looked. That’s all I needed to say. They were waiting for us at the ER in Boston. 

Dr. Levine has been with us from Day one. She has been supportive every conversation we have. She is always amazed at how well Isabelle looks, and how great she is doing. She is just as proud as we are of her accomplishments and loves getting the pics I text to her. I couldn’t have asked for a better cardiologist to care for our daughter. 

HLHS

Day 21 of 30 Days of Gratitude: I am grateful, grateful, grateful for Dr. Emani and his incredible skill to give Isabelle a ‘perfect repair’.

From the first time I shook his hand I knew that this man was going to be our surgeon. The mere fact that he called my husband back after he left a message with Dr. Emani’s admin that he wanted to make an appointment for us to talk about him possibly doing her surgery- that SAME DAY- amazed me. We met him and as he went over the various scenerios, he was very confident in the images he had seen of the echocardiograms that it would go well. He encouraged us to ask questions and of course (thanks to my Heart Mamas) I had a few. What are the chances for chylous effusions? Do you clip one of the sinus nodes? Could that affect her rhythm? I was told she had good rhythym and NO ONE was messing with her rhythym. 

He backed me up in the CICU when I told the attending I wanted her extubated after she was breathing room air. I knew that the odds of her having an oral aversion were high and would only get higher if they kept that tube in. The opinion was “Why not keep in a few days? She’s having surgery on Monday.” Me, “Get it out, I want it out.” Dr. Emani: “There’s no need for her to be intubated, we have a few days and I am comfortable with it coming out.” Attending: 0, Me: 1. 

The day of her Norwood was the most emotional day of my life. I knew about the preparation, that she was going to be on bypass and that her aortic arch had to be reconstructed. I knew the shunt would be put in. What I didn’t know is whether her heart would start beating after being ‘shut-off’ momentarily. I wasn’t feeling well almost a week out from the C-section and I saw Dr. Emani as I was leaving the restroom. I knew he was coming to talk to us so I practically ran him over trying to get into the family waiting room. He took us into the consultation area and  apologized for taking so long. I’m sorry, what was that?

Apparently her arch was so small, he had to create a new one. Technically, she has two arches like McDonalds but only one of them works. He explained that it took a while for it to be stitched correctly and then went on to go over details of the surgery. He told us he used a Sano shunt and how he used a newer way to attach it to the heart muscle without causing too much damage. Went on to explain the conduit, and why he chose the size he did. He was very pleased with how well everything started back up again and was able to close her chest. I asked him what size her arch was, because I had seen research that suggested a tiny arch didn’t have great outcomes. “She had the smallest aortic arch I have ever seen.” Alrighty then.

He then went on to say he found something that he didn’t expect while he was in there. There was some tissue in the wrong place cutting off her subclavian artery. Basically she had some duct tissue cutting off the artery that feeds the left arm. He could have left it alone but one of the side effects is having one arm longer than the other.  He decided that he would just create a new section of artery and fixed it up. The surgery took a total of 5 hours. I was expecting more like 8. And this guy is apologizing to us for taking too long. Really?

Our cardiologist is one of a few who read echoes for patients. She couldn’t wait to tell us how incredibly perfect Isabelle’s repair was. She had never seen a repair that was as well done as that one. Other doctors have said that to us too, but I was stunned to hear that from someone who reads echoes all day. Every time we had a clinic visit, Chris and I would hear how great her heart sounded. Now our job was to fatten her up. 

When it came time for her second surgery, we had an informal meeting by her bedside about the next steps. She would have a cath, and then we would schedule the surgery. Her cath was incredible. Seeing her heart illuminated as the dye ran through was magical. I wish I had images from it. Dr. Emani thought they looked great and she had a few collateral vessles but nothing major. We were good to go.

Once again I handed her over to him and once again she came back to us. Her shunt was taken down, various pipes were attached to other pipes, and now all we had to do was to recover and go home. We were out of the CICU the next day and went home after a week. Everyone was happy with how everything looked and we couldn’t wait to go home and start living. After a few days home we noticed a red bump on the base of her incision. Long story short, we ended up at the ER with a staph infection in her incision. 

When I saw Dr. Emani this time he was standing by her bedside shaking his head. He was upset at himself for not remembering that her body doesn’t like the dissolvable stitches that he used both on her Norwood and then on the Glenn. He promised he would fix her scar when he did the Fontan. He wanted to see everything to make sure she was healing. He knew everything that was going on. We ended up going home and then coming back after a night of profusely vomiting. Turned out she was having a reaction to the antibiotic. Were we ever going home? This is the moment, by the way, when I began to wonder if we were going to be able to  leave. 

We did, and since that time we have been in for a PEG removal and Mic-Key button placed. We have had a tear duct opened and her neurological development assessed. When I saw Dr. Emani walk into the cafeteria, you KNOW I had to talk to him. I drive my husband nuts. He calls me an ‘Emani Groupie’. Yeah. I admit it. I am enthralled with the man who saved our daughter’s life and gave her such an incredible chance at life. When I brought Isabelle over to see him today, she gave him a big smile and he was thrilled with how great she looked. He asked me how everything went the other day. I was thinking maybe he was referring to her tear duct surgery. Nope. He knew about her cardio-neurodevelopment assessment and wanted to know how she did. The man knows everything about his patients and is concerned enough to ask. Love it. I said to him “I don’t know what you did in there, but she has more energy than I could have imagined!” He laughed and said “Good! That’s good!” It is good, and we owe it all to him. 

When you are first told that your child needs surgical intervention in order to live, once you get over the shock, you want the best surgeon doing that surgical intervention. When I am told by numerous people how great Isabelle looks, how pink she looks, I know that he is responsible. One of the esteemed cardiologists on the floor enjoyed using her as a teaching moment. She pointed out to the med students how difficult it was to see her cyanosis. When I asked her why that was she said to me “That is what happens when you get a perfect repair.” 

Image
Successful snapshot of Isabelle’s happy personality!

Thank you, Dr. Ram Emani. Dr. ‘MacGuyver’. You have given us a child with boundless energy, a matching smile to that energy, and a chance to enjoy a relatively normal life. She can walk. She tries to run, we aren’t there yet. She goes up the stairs and down the stairs. She would do that all day if I let her. Isabelle is thriving in a way we didn’t expect, but are so grateful for. LHS

HLHS

Day 19 of 30 Days of Gratitude: I am grateful for the Cardio-Neurodevelopment Program at Children’s

I remember taking psychological exams, stacking blocks, looking at patterns and being asked lots of questions. After the tests were over, my parents would be told that I had something called Attention Deficit Disorder. It was a relatively new diagnosis and very few medications (if any) were prescribed for it at the time. An ed plan was designed and I made it through school. End of story. That was my neurological experience. Basically, I remembered the blocks. 

We brought our assessments and paperwork, and were instructed to wait in the lobby of Children’s (which has completely changed, by the way). Izzie is old enough to notice the musical sculpture outside Au Bon Pain and CVS. She loved looking at the fish and I had fun watching her point at each fish and laughing. I know what these doctors are going to say. They are going to tell me she should be speaking more. She should be understanding more. And she isn’t. I watch her delight as the fish swim by her fingers on the glass. Time to head up and play with some blocks!

She saw the toy car in the hallway and made a bee-line for it. We had to go into the boring office instead and she voiced her displeasure of being denied the car. We went over the paperwork, went to get some coffee and waited for the psychologist. A nice woman was waiting for us with a little desk and lots of toys. And notebooks. She asked us questions, asked Izzie questions, and as we went through each part of the assessment, we could see how much she had grown in the past few months. It was phenomenal to see her do tasks I didn’t expect her to be able to do. 

She can feed a doll, point to certain objects she knows, figure out how to get cheerios out of a bottle, and stack blocks like a champ. She can’t, however, say more than our names, or follow more than one step. Her expressive language is behind, which is what I had been thinking. She should be speaking more than a few words, and be able to make sounds that mimic names of objects. Just a new focal point for Early Intervention to follow, I guess.

The experience was such a mixed bag. At one point I wondered about the limitations I put on her without realizing it. Then I see what limitations she has and think about my other two (both were speaking at least two word sentences by this age). I think about my heart mama friends, whose children can’t sit up without support, walk independently, or share in our joy of going up and down the stairs after her. She truly is remarkable for someone who has has two open-heart surgeries and compromised circulation. One interesting fact we heard while we were there- at 15 months she already has a hand preference, and they think it has something to do with the circulation being different than a heart healthy child. Apparently, children who have gone through what she has tend to show hand preference early. [Cliff Claven moment over]

I am so grateful they have this set up for these kids, and I am glad we are participating. I think knowing where she is at comparatively to other cardiac kids is important for me to truly understand how fortunate we are. Yes, being alive is a good sign right there but she is doing more than living, she is thriving. I feel so relieved that her gross-motor skills are at an 17-month level. That rocks. Talking is overrated.

 

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.