The moment you take when you have to catch your breath…

Last night after dinner, Izzie and her dad were sitting on the couch having an ice pop. Addie’s latest obsession is NCIS, which was playing on the TV. After a few minutes, Izzie looks up at her dad and says “I wish I had a whole heart like the rest of you.” Chris was stunned and tried to see what caused her to say that. She said nothing else and went back to eating her dessert.

He told me about the exchange when he got back from the store. I had come by to put the girls to bed after my yoga class which gave him the opportunity to run out. Neither one of us knew what we could say to her to make her feel better. In all honesty, what can we say? The fact is she has one and a half atria, reconstructed aortic arch, and a single ventricle keeping her alive. The other side will never grow, a left ventricle will not magically appear. I am not looking forward to when she starts learning about the human body and realizes exactly how different hers is from her classmates.

It was inevitable that sooner or later, Isabelle would learn that she was different. We knew this. We thought we were prepared for it but last night shows me that we are definitely not. I don’t want to tell this sweet girl that she will never be fast, she will never be able to keep up with her sister, and that someday her heart will give out. I don’t want to have to tell her that someday she will wait for another to die so she could have a new heart because hers will fail.

Chris doesn’t want her to feel like we don’t love her how she is, so he feels like he can’t acknowledge that we also wish she had a whole heart too. We do wish she had a whole heart. He felt, and I agree, that she needed to hear that we loved her even with half a heart, and that we always will. It must have satisfied the inquiry since she didn’t mention it again.

After he told me the story, I sat on the couch struggling to catch my breath. That moment reminded me of the day after we found out there was something wrong with her heart. I woke up wishing it was all a nightmare that I could wake up from. I wanted the day to be like the one before, starting with great hope and joy. We went to Boston Children’s that day and met Dr. Levine who would tell me that my baby would need three open heart surgeries and that she had a 80% chance of surviving.

I remember asking her is she felt that it was worth it. I remember asking what if we did all of this, and it still failed. I wondered if I could do this to an infant – our child. I still can remember her expression as she said to me “You are asking me if it is worth it to have your child. I cannot answer that questions. Only you can make that decision.”

We did go through with the sequence, the doctor’s visits, the tests, the x-rays, the blood draws, the various studies. We watched her literally fight her way to existence, and then cheered her on as she began to thrive. It was not easy going through the feeding struggles, the worrying about being around other children who could get her sick, her color changes that were so alarming in the beginning. Her growing fear of the doctor’s office contributed to our burden and we would have to mentally prepare for her screams before every IV, every blood draw.

Izzie is becoming more aware that she has half of a heart. It is devastating to watch,  but wow- the strength it took for her to get to this moment is something we will never have. She truly enjoys every day to the fullest and has taught us to do the same. Every day is a gift that we are so grateful for. And I mean we- myself, her dad, her sisters Addie and Liz, my partner Melissa, her grandparents, aunts, uncles, cousins….the list of people she has impacted is endless. We are so blessed to have her smile, giggles, and hugs as part of our daily life. If anything, that is what I want her to be sure of. That no matter what she will have to go through in the future, she will be surrounded by all of us. Half a heart and all.

I’ll keep writing about this as more is revealed as she becomes more aware. It’s worth archiving in case other families run into this same issue. I’m sure they have, and more will join us in this part of the journey as our children grow up.

Please consider donating to our Team Izzie’s Hope for the Walk for Boston Children’s Hospital. They are working very hard on finding a solution for kids like her and they are the reason why she is thriving today. Without the care she received from before she was born, I know we would not be where we are now. Thank you! 

 

Keeping it in the day.

In 2012, I became acquainted with the Schultz family through Mike’s blog ‘Echo of Hope’. The description of hospital life with a great sense of humor added in lifted my spirits during our hospitalizations. You can imagine how excited I was to see the Schultz name on my trip to the patient family kitchen. I introduced myself to a weirded out Mike, and mentioned how much I appreciated his writing. His posts gave a sense of validation to the crazy unpredictable life we were having. I wanted to thank him personally for lifting up my spirits. I also met Ari on that day.

For the past 4 years, I have been following their journey, praying for their journey to get easier like ours did. Isabelle had her last open heart surgery in the Fontan sequence and was doing very well. When we got home after 7 days inpatient, she instantly wanted to ride her bike. Congenital Heart Disease was not going to keep her down and she has been that way since. Her Dad and I are grateful that she has been able to grow and thrive in ways we could not have imagined.

We wish everyone could have this outcome like we have. But that isn’t reality unfortunately. Not everyone has the experiences we have had with her being so active, and staying out of the hospital with the exception of a dehydration episode. Every day, I thank God for blessing her with good function for that day. I am aware that things can change without warning.

When you have a child with a condition like Isabelle or Ari, you find yourself between having hope for the future, and keeping expectations in the day. When I start thinking about Izzie’s future, there is a voice that reminds me that moment may not come and to enjoy what is happening right now. I want to believe that she will grow up and follow her sisters’ paths through school and other life events. But that voice is still there, and whispers in my ear to hold on to what is happening now, for that future may not come to fruition.

I hate being dramatic like this, but in the wake of Ari’s unexpected passing I can’t help but feel an indescribable sorrow for Mike and Erica and all of their hopes for Ari. They had just started to let themselves think about the future, and the unexpected happens. Their son was given a second chance with a new heart, and that still wasn’t enough to save him. I hope people understand my frustration or response when I am asked “So if Izzie gets a transplant, she’ll be ok, right?”

No. She may not be okay. We will always have to be on our toes regardless of how pink her lips are at the moment. We will always have to stay vigilant, check her saturation levels and worry about how hydrated she is. We will always be cautious when talking about the future. I am even reluctant to talk about her 5th birthday, which is a huge milestone for HLHS kids because it means her survival rate improves dramatically. We aren’t there yet.

There is no finish line to this race, and we are forced to remember that every time we see another family struck by the merciless heart of CHDs. All we have is right now, and that needs to be enough.

Please remember the Schultz family as they walk through this immensely difficult time. I cannot imagine how awful this is for them and for their children.

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!

 

 

 

Confessions of a frustrated heart mom

In a few weeks, one of my favorite heart mom friends will be packing up, heading onto a plane and flying to Boston so her son can have surgery one more time. He will need a repair on a valve that was just repaired not too long ago. I know there is a misconception out there that surgery can cure congenital heart disease. This is a prime example of how wrong that is.

I have a confession. When I see the St. Jude ads on the television, I get angry. I get angry for my friends who have to spend so much to stay in Boston to receive the care their children need. I get pissed that in spite of the hundreds of deaths that happen on a regular basis from CHD, it’s cancer that everyone seems to know about. What about that mom who is saying goodbye to her son right now? Any disease that takes children away is terrible. All of them, not just cancer. When I see those ads I want to scream. At least those parents can have their children go to that hospital for free. There is no such hospital like that for cardiac families who outnumber cancer patient families by the hundreds. It sucks. It sucks that diseases have popularity contests and that the same one seems to be on top every time. Cancer “wins” with funding. It “wins” with an entire hospital. And it when it comes to awareness, more people think of cancer than any other disease out there.  I am not saying a sick child with a terrible disease is winning because I know it isn’t. I know way too many people who have lost children to cancer as well. Thank God there are places for them where they can be treated. Thank God some can be cured. I am saying  I want a place for my daughter too. I want celebrities to go on TV and say “CHDs kill hundreds of children every year and a fraction of money raised goes towards research on how to improve these childrens’ lives.”

Surgery has not cured Izzie. It has not allowed her to be able to run as fast as her sister. It has not allowed her to not turn purple when she is outside for longer than 10 minutes. It has allowed her to live, thrive and be with us, which is a miracle that I thank God for every day. However, I will always be looking over my shoulder to see if the monster is right behind me. Someday I would love not to worry about what could happen. I like to pretend I don’t care or that I try to live my life as if she were a normal child but I can’t. A cough is never just a cough, I have seen too many children all of sudden have to be admitted unexpectedly and a cold still terrifies me.

I find those posts that are supposed to spread awareness about a fatal illness like cancer insulting. I don’t want to see them. I will never repost them either. Don’t you dare tell me that I have never witnessed someone suffering from a fatal disease. I watched my daughter carried away to surgery three times. I have seen her scream her heart out without making a sound because a tube was down her throat. Those awareness posts make me crazy. I know how much people suffer from diseases like cancer. I may not say it but I know what Izzie has is considered fatal. She qualifies for Make-A-Wish because of this. Only 75% of children with HLHS make it to five years old. There is a reason for that. Because CHDs kill children as much as cancer does.

Here’s a question: Do you know how much families suffer with congenital heart disease???  Do you know what it is like to have every hope extinguished one by one? Do you know what it is like to wait for another family to lose their child so yours can live? Do you know what it is like to know how important it is for your child to gain weight because it is key to their survival yet they continually lose because their heart is working too hard? Have you ever heard me say something as ridiculous as “You probably don’t care and won’t repost this because you haven’t been touched by someone who has CHDs?”

Everyone knows someone who has had cancer. Not everyone knows someone who has had open heart surgery three times before they are three years old. When you understand what it feels like to stand for 12 hours trying to comfort your child who is terrified of every nurse that walks into a room while attached to tons of tubes and wires and who has not slept at all, then talk to me.

And trust me when I say that St. Jude has plenty to fund their operations. Plenty. Thankfully some of their experimental treatments can open doors for cardiac patients. Then I don’t feel so bad seeing the gold medalist snow boarder who was born with a CHD (Tetralogy of Fallot) advocate for them. I wish that children could be allowed to be children and not have to endure the hardships that sick ones do. I wish to God that this family who has fought so hard for their son didn’t have to say goodbye to him today.  But they do, please keep them in your prayers. They are one of many in the Heartland that will not have a merry christmas.

https://www.gofundme.com/gillythegreat

Thank you for reading.

When Geography Matters.

Today Isabelle had an appointment with Dr. Sadhwani of the Cardiac Neurodevelopmental Program at Boston Children’s Hospital. She was not happy being trapped in the car for over an hour and decided that the chest clip on her car seat was far too annoying to bear. By the time we reached Hanover she was halfway out of her car seat demanding goldfish. I complied, and tried to keep her amused in spite of the “No.” I kept getting from the back seat.

“Do you want your milk?”
“No.”
“Can I get your tummy?”
“No.”
“Do you want to sing a song?”
“No.”
I turned to look at her at one point and heard “Noooooo!”

You get the idea. She was not happy. Neither was I since I had to listen to more discussion about the Patriots, balls, deflated whatever, and what an ass Goodell is all the way in thanks to the various sports stations in the area. I welcomed the “Traffic on the Threes” to break it up a little. I even tolerated Jon Keller as he shamed the Boston Olympics peeps for being stupid enough to think the City of Boston would want the Olympics here with that up and down voice he has when being condescending. Or is that really how he talks?

After a cookie, goldfish and a few “Look Izzie, the city!” exclamations, we made it to Longwood. Usually it takes us about an hour to get to BCH. Today was a little more than that but we were still on schedule. We figured out how to get to Farley through Fegan (only BCH peeps would know what that is) and to the 6th floor we went! She was weighed and measured. She didn’t cry. There wasn’t any sign of any distress of any kind. As a matter of fact, when we were in the lobby waiting for an elevator, Izzie exclaimed” I want to see the doctors!”

After waiting a little bit the doctor came in and greeted us with lots of activities. Izzie was going to play with the “toys” she brought in. Izzie wasn’t keen about sitting at the table but relented when she saw the different items she would be playing with. And so it began. The repetitive questioning about which crayon was which color, did she know her shapes (she did. She even knows octogon but we didn’t divulge that information) and which duck was bigger commenced with little bribery. Izzie enjoyed completing each task. Perhaps it was my expression of joy (and relief) when she recognized objects appropriately. Soon she learned that every time she completed a task, we were so happy so she went along with what the doctor was asking her to do.

We played in the hallway. She ran when asked, tried to hop on one foot and jumped with two feet. The doctor was happy to see how well she moved but noticed that after a little while she began to breathe heavy. We shrugged it off, she breathes heavy but it doesn’t stop her. It didn’t this time either. Izzie proceeded to run after a soccer ball and go up and down the stairs to show coordination. Today she took some steps by herself without holding onto anything. First time ever. Chris and I were thrilled.

The doctor gave her a snack of crackers and juice to give her a break and reward for her hard work. Izzie obliged the doctor and completed a few more tasks with some prompting.  I could see that she was showing signs that she was over it with the puzzles and if this lady asks what color this crayon is one more time….The doctor knew she was running out of time, so she offered Izzie the chance of a lifetime- to cut paper with scissors.

“Izzie, do you want to play with the scissors?”
Izzie’s eyes widen in amazement and she responds with a resounding “Yes!”
“Ok, three more pages and then you can have the scissors.”
If Isabelle could say “Really?” in appropriate context, I think she would have at that moment. The next few pages were an agonizing “Izzie, do you see the picture here? (flips page) Ok, where on this page do you see that picture?” “Scissors. I want scissors.” “Ok, soon you will have the scissors but I need you to answer this question.” I bet you know where this is going.

Eventually Isabelle was able to use the scissors and she cut paper for the first time ever. I am not sure Chris was too thrilled that she learned this skill but I was happy she could do things I didn’t know she could do. Including use scissors. The doctor then told us that she would gather the results and let us know what her thoughts were for Izzie. After a few minutes (and for me a few text replies later) she came back in and I prepared myself to hear the results.

She did incredibly well. It is rare for her (the doctor) to say this but she agrees with the staff from Mt. Pleasant and felt strongly that Izzie did not need services any longer. She reached her milestones appropriate for a three year old. She is ready for preschool emotionally, socially, and physically. She may need a medical plan because of her HLHS, but other than that, she is on point for where a heart healthy child should be at age three.

I thought back to our first appointment with the Advanced Fetal Medicine center where Dr. Levine told me that our child may be significantly delayed and a few IQ points less than my other two children. The memory of sitting there not knowing what the future held for us struck me. The fear enveloping me, not wanting to have hope because what if I get my hopes up only to not be able to take her home with us. And the thought no one wants to admit they have “What am I going to do if the child is significantly behind the others?”  Yeah. I asked myself that question as I sat listening to the obligatory statistics Dr. Levine had to tell us. And then I heard “Tennis.”

“I’m sorry, what?” I asked not sure if I heard her correctly.

“One of my kids plays tennis. Another is a gymnast. Some are delayed and some are right where other kids their age are. Some only are a few points less than their siblings are on the IQ scale.”

And here we are. Izzie is meeting her milestones. Sometimes I wonder if it was her high oxygen saturation levels after her Norwood that allowed her brain to grow the way it was supposed to. Other times I think it is the incredible staff at the Kennedy Donovan Center who sang songs and engaged her every week. And then there is her surgeon, Dr. Emani, who did one of the most perfect repairs other cardiologists at BCH has ever seen. (Direct quotes people- I heard them say it) Or maybe it is the fact that Chris and I have put our differences aside, and parent our girls together. We try hard to be available for them and provide stability for them, which is essential for brain development.

Whatever is the reason, Izzie is ready for what every three year old is ready for- playtime and snacks. Ok, playtime, circle time, recess, fun activities, letters, and maybe a few snacks. My hypoplast is ready for whatever her school path will take her. Thank God we live an hour away from the best hospital in the world we could have gone to. Thank God I live minutes away from where they live with their dad so I can be there in a flash if he needs me or they need me. Thank God I live in a state that provides supplemental medicare (thank you taxpayers, I mean that) on top of her health insurance so we can provide her with the care she needs. Thank God we live in a country where we have religious freedom to pray to whatever God we need to pray to and a healthcare system that will not leave her behind because she was born with a condition she didn’t ask for. Thank God. And so I will.

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.

Blessings of Life

I took a few minutes to view the movie I made for one of our fundraisers a year ago. We have come so far in one year I don’t know where to start. Isabelle is doing incredibly well and acts more like a typical toddler every day. Her delight in recognizing various objects around is contagious. “The MOOOON!” She yells and points to the sky. I will never get tired of hearing her big little voice. She can point out every object in the room and it won’t get old. She is thriving in a way I never thought possible. I never thought I would see her climb the stairs with such vigor or a ladder on her swing set over and over again. I never imagined her running, hitting a ball with a bat, or dancing to the Backyardigans theme song in the living room.

When I was pregnant with Izzie I was in a constant state of fear. The “What Ifs” plagued me throughout the day and I did everything I could to apply the principals of my recovery to the situation. Staying in the day, staying in the moment. Being where my feet were. Looking down and making sure I was where my feet were. I stopped going to the meetings that helped me in the past. I stopped hearing answers to my problem. I began to try to deal with this on my own. I severed my spiritual connection  the minute I found out about her heart. My thoughts would go back to the night I sat in a synagogue and asked for a healthy baby. Tears would flood my eyes as I thought we were given one that may not make it to their first birthday.

Once again, the Universe has decided to prove me wrong again. Not only did she make it to her first birthday, but now she has made it to her second. Two years she has been in our family. We have enjoy another year of smiles, joy, hugs and milestones. We have experienced heartache, pain and loss this year. We had a fundraiser that went beyond my wildest dreams and raised over $13,000 for Boston Children’s. People came out of the woodwork to support us and Izzie. It was an incredible experience and one I hope to have again. Only maybe this time, without the police coming.

If you told me the blessings I would receive from having a baby with such a severe heart condition that surgery would be essential to save her life, I wouldn’t have believed you. Never in a million years would I ever think that I would consider HLHS a blessing. It kills hundreds of babies a year. It devastates families, and robs them of their beautiful toddlers and children. It puts them through such suffering you wonder how much more any of you can take.

It also brings families together. It has taught me to enjoy every moment with my girls and to take steps to ensure that I can enjoy every moment with them. It has forced me to take care of myself and my recovery. It has given us a child whose joy for life is so contagious you can’t help but smile when she is in your arms or presence. I have learned to give meds, O2 saturation levels and surgical procedures that people sometimes mistake me for a nurse. It has given me strength I had no idea existed within me. It has allowed me to walk through situations I never could have imagined before. It has given me a level of empathy I feel blessed to have, and I love being there for my fellow Heart moms out there in the Heartland. It has given me friends I have never met, and some I met for the first time picking them up at Logan Airport. It has given me opportunities for service- such as passing along my experience with different procedures that I can share with new HLHS families.

I have gotten so much from Isabelle these past two years I can’t fit it all on one post. HLHS has robbed her of a half a heart, but it has given so much in return. Not a fair trade by any means- I would much rather her have four chambers than to have her undergo three open heart surgeries any day. It is not a diagnosis anyone wants to have or hear. At the same time, I consider myself fortunate for the blessings it unknowingly bestowed upon me. She truly is a blessing in every sense of the word.