HLHS

Echos of Denial

So here we are with 2 days until the fundraiser and one day before Isabelle’s sedated echo. I have been pretty preoccupied with so many different things- people, work and the fundraiser that I haven’t thought about our appointment on Friday. It’s going to be a rough one. We have to have her abstain from milk after 2am, and then she can have juice until 6. Awesome. Then we have to keep her awake so the chloral hydrate will be effective. The whole process is pretty overwhelming in itself. Anyone who has a toddler knows that if anything sets them off, it’s being hungry AND tired.
I remember our first echo after her initial diagnosis at 17 weeks and praying there was some mistake. Maybe the left side would miraculously grow and we can all laugh and thank God this was a terrible mistake. But that isn’t what happened. It took forever for Dr. Levine to find her aortic arch. Her left side hadn’t grown at all. It was all the same and nothing had changed.
Going into this appointment tomorrow I am praying nothing has changed. I am praying there is no tricuspid regurg, any surprises. I pray her ‘squeeze’ remains good and that her function remains good. I have learned by watching others that there are always surprised lurking inside like ticking time bombs we don’t know are there. It’s scary and I didn’t know I was scared until I forced myself to think about it just now.
Please let everything be the same because this is hard enough as it is. Listening to her try to breathe after chasing Addie for a few minutes sucks. Seeing her lips turn purple from having ice cream because she gets cold faster gets old. And after witnessing a fellow heart mom lose her child after he had a transplant reminds me that once again there is no cure for what she has. Not even a transplant will be enough to feel safe. 75% of HLHS children make it to their 5th birthday. I hope to breathe a little easier by then.
Just another moment where I realize that as lucky as we have been, there are no guarantees in the heart land. Each moment is precious. Every giggle, smile and snuggle.

HLHS

Preparations

In a few weeks, we are having our big night celebrating Boston Children’s Hospital, Isabelle and our amazing runners. Our runners are preparing for the marathon with their training and disciplined mileage. This event is requiring lots of preparation which is being expedited by some incredible family and friends. There are many kinds of preparations I participate in daily. From packing my gym bag, getting the kids ready for the day, or preparing for a presentation, I am in a constant state of in between. That is a good thing. 

Tonight, a family is preparing to bury their niece, daughter, granddaughter and cousin. Another senseless victim of narcotics she succumbed on saturday night to an overdose. One of many that have plagued this town over the past few months. Tonight a mother is preparing for one more night without her son. 30 days later after he died when he should have been enjoying post-fontan life. All around me people are preparing themselves to walk through another difficult moment in their lives. 

And there is the preparation we are  starting as we slowly trudge towards open heart surgery number 3. Now I can see what is happening when she runs. I can see her lips turn purple at the drop of a hat or a few degrees. Her sister tries to get her to chase her around the rom and she can only make it around the coffee table. She doesn’t realize it’s because she has half a heart that doesn’t have the stamina to follow suit. I do though. I know I am looking at a toddler who is ready for this next step. And I am far from prepared mentally to hand her over once again. Oh I talk a good game, Dr. Emani rocks…we got this…but when I stop to think, my stomach twists into knots.

A few new developments since Izzie’s last surgery. She’s older. She panics when she sees a white coat. Or scrubs. She knows what they are and her fingers instantly grip my shirt in fear. She cries and looks to us to get her out of whatever situation we have her in. But the situations are to keep her safe, like the vaccines for RSV. Thanks to that vaccine we have been fortunate enough to fight off respiratory infections. She doesn’t know that it helped her she just knows that every time she sees Nurse Laura she gets hurt. Just like she won’t understand that we have to get her sleepy so we can see pictures of her heart, that the blood draws that will hurt her are so we can make sure she is ready for the surgery that will save her life. Surgery that will hurt. Chest tubes that will hurt. It all hurts and it hurts me to think about it.

I run in the morning not just so I can get back into shape but so I can feel for a few minutes (sometimes for longer) what it feels like to be Izzie. What it feels like to run and not be able to catch my breath. To have limitations. I run because I want to understand how she feels. And I run because I can. 

The overdose really gets me because we may lose our daughter to a physical anomaly that we never asked for. At the same time, no one asks to be a drug addict. No one wakes up and says “I think I will get drunk, yell at everyone and lose my job.” I woke up and thought “It will be different this time. I won’t make the same mistakes again.” And lo and behold- ia made the same mistakes. Any premature death feels senseless- whether it is from complications caused by a condition or self-inflicted. The result is still the same- a loss. And how do you prepare for that?

HLHS

The Club No One Ever Wants to Join

When we were first told of Isabelle’s diagnosis exactly two years this week, I was filled with many different emotions. Anger, sadness, fear, and grief. Grief for the joyous pregnancy that I enjoyed up until that moment. Anger over God ignoring my request to bless us with a healthy child. Sadness that we may give birth to a child we would lose. Fear of what this diagnosis meant for us and our family. Open heart surgeries. Percentage of outcomes. Outfits she may never wear. Toys she may never play with.

Two years ago my world was shattered with four letters. HLHS. Today, I am in such a different place I wouldn’t have believed it if you showed it to me. Today I view Isabelle as a blessing to our lives. She is doing so well you can barely see the evidence of her CHD. I speak a language I didn’t know existed. I can participate in discussions about my daughter’s care and be her advocate. I am not intimidated by the letters “d” and “r”.  I have friends that I have never met but would send encouragement and support across the miles when I need it. And I like to think I do the same for them. My days are filled with moments, instead of labels like ‘good’ or ‘bad’. The God I was so angry at is now the one I rely on to help me get through those moments of panic that can still strike without warning. I am at a point where I realize that losing that job I loved so much was truly a blessing that set me free from an unhealthy relationship.

My whole life I have always wanted to fit in. When I was young I wanted to fit in with my classmates and not be the unusual child I was. In high school I wanted the experience I saw my older sister having- lots of girlfriends, a boyfriend, a job and incredible wardrobe. In college, I wanted to be one of the hippies, the radio station crowd, and the fellow communication majors who seemed to have their shit together a whole heck of a lot more than me. I ended up joining a fellowship after one particular bad year and that was my first club membership that I wasn’t aiming for.

The day we were told our baby would need surgery in order to live, we were taken from a parenthood surrounded in normalcy, to another world we had no idea about. When another mother reached out to me at my workplace, I had tears running down my face because I had someone I could talk to about what we were about to face. Someone who knew what it was like to hand over a tiny baby to a surgeon and not know if  they would be able to hold them again. When Sisters by Heart sent us that care package full of things we would need in the hospital, my pregnancy went from dark to one full of hope. I was able to give her a name. I could daydream about first smiles, and little coos. Because of those connections, I was able to move forward and step into this new world of the Heart land.

I have had my struggles for sure. My life in the first unlikely fellowship I became part of taught me to reach out to people when I needed it. It also taught me the importance of passing on what was so freely given to me. Saturday I was given the gift of an extraordinary night out with my husband. We went to a fundraiser a fellow heart mom had put together to raise money for research on heart valves. In spite of the beautiful jeweled gown she wore and the glamourous atmosphere, she was so happy to see her fellow heart moms there to support her. As I sat listening to her speech sitting in between two incredible heart moms, I felt like I belonged. I fit in. I got my wish. It wasn’t how I wanted to come true, but what a blessing to finally have it. One of the emcees last night used the phrase “The club no one wanted to sign up for” to describe the Heart Land. Part of that is true. I wouldn’t have asked God to give me child whose future is uncertain regardless of percentages. But the tradeoff of being a part of a world that is full of such love and caring for one another is a blessing. We care about moments like when a surgeon has made the first incision, when the child has been put on ice, and when their heart starts beating on its own. We hold our breath alongside a family who could be miles away in another time zone. We get excited about first steps, ounces gained and first words.

Today we picked up a mom flying into Boston for the first time for a visit to Children’s with her little 20 month old girl. We went to Faneuil Hall and then met up with another mom whose son is in the CICU recovering from a very intense surgery to help make his heart more whole. Dinner at Bertucci’s with excellent company was a perfect way to end an incredible weekend. I am so grateful that in spite of those gut wrenching sobs that took place on that table two years ago, I can see the silver lining.

 

Picking up Sarah V and Miss Cecelia
Picking up Sarah V and Miss Cecelia

 

 

Good friends, food and family
Good friends, food and family