Thursday, January 30, 2014

"Red, Red, My name is Red. Red, Bed, I am in Bed"

Unlike Charlotte's family, our family is surrounded by a very different color palette.

We are blues, greens and hippie browns - like the soothing, natural and earthy kind of life we live. So thinking about red was hard. All I could think of was the day I arrived in CICU (our 5th stay, I believe) when Judah had torn out his scalp IV just before I arrived. He was still laying on a fuzzy baby blue blanket decorated with airplanes and clouds, completely drenched with blood. I have seen my son's blood more times than a mother should.

But this should be happy, powerful! Recent! Our lives are generally so earth-toned, thinking about red was a difficult theme.

But the answer was staring us in the face every night.

In our home, we are lucky enough to have an "Art Studio" - an extra bedroom filled with crafts, paint, sewing and creating materials. As well as a whole host of computer gadgets and Daddy's Main Computer Station of the home. It is also where Daddy and Judah begin their evening routine, watching Raffi sing while Mommy gets everything set up for trach tie changes at night.

Daddy and Judah cuddle in Daddy's big chair in the bright red room, also painted with a giant heart and flower, swirls and glow-in-the-dark secret messages. While Judah chews on his red chewy toys.

I am grateful for this room - a space for creativity and fun (which is a lot like our friend Charlotte's) that Judah will be able to explore, with Mommy's supervision, someday soon.

It is a much better memory than the first, to think of Daddy and Judah in the red Art Studio, singing with the music, getting ready for bed.

Thank you, red.

Tuesday, January 28, 2014

Passion in the paint colors.

If our family was to be defined by a color, it would most certainly be red. Red has been my husband's all-time favorite color; our wedding colors were black, white & red, and when it came time to pick colors for a certain little boy's nursery, red was a heavyweight contender. Red is vibrant, full of life, intense, artistic, and unforgiving. Our family life has been anything but boring and our color choices have always reflected that.

Elliott Wilde was named after a favorite musician of ours, Elliott Smith, and we excitedly painted a mural in his room that was inspired by an Elliott Smith album cover. Changing the colors to a blue gray and a rusty red, we wanted to inspire our first born to be passionate & raw, but also sentimental & thoughtful, when he chose a path for his life. Little did we know when we painted the mural that we were choosing a palette similar to CHD awareness colors. Now it seems only fitting. We want our son to feel inspired by his surroundings and circumstances but not confined by them. It is our strongest desire to see our little man rise above this diagnosis and his lifelong relationship with it, to see him live his life with spirited passion.

Sunday, January 26, 2014

Scar tissue

Our wounds. Stories told by a mark seared deep into our skin only to have been healed with time leaving behind a stronger tissue… scar tissue. They are marks that not only show outwardly, but they have left an impression deep within our souls. They comprise our personal and unique story and tell of a time when we discovered a strength we didn't know we possessed. They represent a battle won and they serve as a reminder that the journey is real. When we look at Elliott’s scars we don’t think of it as a symbol of his defect, but more of a badge of honor, something that signifies his strength and how far he’s come.
In those early days, just hours after he was born I wanted a lot of photos of his chest untouched. I suppose I wanted to remember what he looked like without his scars. And while I’m glad I have those photos, I realize now that those scars tell his story and will forever be a part of who he is. I wouldn’t want him any other way. I want him for everything he is now and for everything he’s always been. We will raise him to wear it proudly, to never be ashamed of his scars, and to use his story to encourage and inspire the world around him. Our Elliott, a fighter, a true hero.

Wednesday, January 22, 2014

Evidence of Healing

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." Khalil Gibran

It is an overwhelming, frightening, and source of never-ending pride to see my infant son "seared" with scars. I think pride is the right word. I am endlessly proud of the war my baby has fought to be with us today.

He is a warrior. A smiling, cherubic warrior, and still today without a single clue that he even HAS scars, or that his life is any different from anyone else's.

Someday we will talk about his scars and why he has them, and we will tell him the amazing story of all the things he's already done, and the responsibility that means for him in the future.

For right now, before the questions and the stories, we will just watch him in wonder and awe, remembering to be grateful for what God, love, and science have done for our family.

Monday, January 20, 2014

Scars: Healing with time.

 It's fitting that I write this post today, because one year ago to the day I wrote a post on my personal blog on the same subject. Elliott's scar. For a long time that scar simply reminded me of how fragile my son was and how different our life would be as a heart family. Sometimes it made me a bit queasy, taking me back to the days when I sat by his bedside in the hospital while they left his chest open, literally seeing his heart beating under a thin piece of sterilized gauze and plastic. Thankfully, scars fade with time. What I hated about that scar in the first weeks it appeared hasn't phased me much lately. These days I talk about Elliott's open heart surgery with a certain nonchalant tone as if everyone has had open heart surgery at some point in their life.

The truth is, while our scars have faded, I can't un-see the things I've seen. I've seen way too much in my short stint as a mama and I wish I could just wipe it all from my memory. I can't. I will always have moments when I am taken back to that hospital room in the cardiac unit. Visiting the echo-cardiogram lab will always leave a bad taste in my mouth. It's like an old tennis injury, acting up when the weather is cold or you're particularly stressed. Elliott's scar will fade, but it will never, ever leave him. The scarring left behind on my own heart feels like it's slower to heal, and my nonchalant tone isn't a total coverup because I still have to talk about Elliott's surgery to anyone who will listen.

Thank goodness for time. Time heals wounds. While we will be looking at another open heart surgery some day in the future, in the present we spend time healing. Elliott is going about his days as a silly toddler having no recollection (thankfully) of his surgeries. His scar is hardly recognizable, and maybe someday we'll sit with him on the couch with some ice cream and tell him the story of how it got there.

Thursday, January 16, 2014

A battle beyond the heart

Doctors always warned us. And I knew that after I googled pictures of babies with Hypoplastic Left Heart for hours on end that those pictures told stories... stories of kids struggling to eat by mouth, struggling for days and weeks on end in the hospital just trying to do something so instinctive. Weight gain slowly turning into weight loss and tired, frustrated parents were in tears because they couldn’t understand why their baby wouldn’t eat. The words “discharge” hesitantly roll off the tongue of nurses, because they want to be hopeful, but they know that without weight gain these babies would stay put, and if you want to go home a g-tube is sometimes the only answer. I never gave it a second thought that upon hearing the diagnosis of our son a multitude of other concerns and worries would follow. I guess, then, I didn’t fully grasp what a victory it is when a heart baby can feed by mouth. Elliott, despite what we were told was a fantastic eater from the moment he was born. He even breastfed, but in the days prior to his discharge doctors wanted his milk fortified in order to gain more weight. So I pumped and pumped so that we could fortify the milk. I remember there was one lactation room in the ICU where mothers could pump. In the early hours of the morning moms would walk to and from this room in a tired daze holding their yellow bucket enclosing their pumping kit. The sheer determination of these mothers amazes me still and kept me going in those early days when all I wanted to do was sleep.
He was a great eater during the first stage, but after Elliott’s second open heart we experienced what all the doctors warned us about. He wouldn’t eat. He was older now, more alert and full of plenty of meds that if given to any adult would make them lose their appetite too. We tried everything we could. We rocked in a dark corner of the room to keep away from distractions, we upped the pain meds in case that was an issue, we took away pain meds to see if they were making his stomach sour, we tried feeding upright, we checked for ear infections, we checked for thrush; we exhausted every possible idea as to why he wouldn’t eat. They talked of NG tubes and for the first time my husband and I experienced that searing pain and frustration that comes with your child not eating. And it felt even harder knowing how he was before, how eating was NEVER a problem, and didn’t foresee this being an issue. We cried and we prayed that he would eat enough for them to feel comfortable sending us home because I knew once he was away from the hospital things would get better. And they did! As soon as we were discharged and back in a quiet setting he began to take his bottles almost immediately. The fear and anxiety washed away and we felt like we had our Elliott back. We jumped and kicked and screamed when we successfully introduced solids because we get it, we know what a big deal that is and there’s not a day that does by that we aren’t extremely thankful. These victories, while small to some people are HUGE for him, HUGE for us.

Wednesday, January 15, 2014

Eating with a tube

Feeding has always been a struggle for my son. He never took to the breast or bottle very well, and after he recovered from his first surgery at 9 days old, a swallow study showed silent aspiration. When he was a month old, we were transferred from Children's Hospital of Pittsburgh to the Children's Institute, an inpatient facility a few miles away with a specialized focus on feeding. At the Institute he worked with therapists 3 times a day to try to relearn how to eat. Since the surgery he was getting all of his feeds via an NG-Tube.

NG-Tube -- 1mo

He was beginning to make some progress feeding from a bottle, but then two weeks into this program, Judah returned to the hospital due to oxygen desaturation and arrhythmias. This led to a chain of events resulting in a trip to the Cath lab to place a stent, and a reperfusion injury leading to a Cardiac Arrest, ECMO cannulation and shortly after a tracheostomy and the placement of a Gastrostomy-tube. The G-Tube operation placed a Mic-Key button directly into his stomach, and all of his feeds now go  through it via a feeding pump. The g-tube made an incredible difference in the weeks to come. Judah had always been a tiny, underweight baby. A common problem with CHD babies is their hearts have to work so hard during feeding, that they end up burning more calories than they take in. The g-tube allowed Judah to really put on weight, and some times it seemed like it was all going straight into his giant round cheeks.

g-tube in the tub

Months later, while we were still living in the hospital, one of the nurses came into our room and asked if my wife and I would be willing to speak to the parents of another patient. We had seen them in the halls and waiting room many times and knew their story, they too had a baby with a CHD, and she was about to be diagnosed with "failure to thrive". Though a bit scary for them as it would require another surgery, we recommended the g-tube and told them about our experience, and were able to calm their fears a bit. When we ran into them again many months later, they were grateful to us and able to tell us how much the g-tube had helped their child grow too.

Today, now that Judah is home, he still gets all of his feeds via the g-tube. It started with straight breastmilk, and then moved to a breastmilk/formula mix, and now we are looking to the next phase, beginning a blenderized diet of real food pureed to allow for all of the nutrients he needs, and less of the processed sugars and fats found in some formulas. Judah still has feeding therapy with mommy every day, but with the difficulty swallowing and the stenosis in his throat, now the focus is for just taking food into his mouth, touching and tasting the textures and flavors. Though not always his favorite part of the day, it is building the necessary framework for a future eater.

Monday, January 13, 2014

Eat: An evolution

A toddler, making a mess of his yogurt for breakfast wearing a beanie knitted by a neighbor and a puppy apron. There's nothing extraordinary about it. At least, not on the surface.

Contrary to what many may think, cardiac defects do not affect just the heart. We often say that the heart is the seat of the emotions. Emotions affect every aspect of daily life. Thus, it is only natural that a heart defect would affect something as simple and instinctual as eating.

Elliott had trouble breastfeeding. He pretty much starved his first few days of life as I, a desperate, exasperated new mom, tried to make it work. I eventually gave up. There's a good chance his cardiac defect made it difficult for him to nurse.

He took to the bottle well, but he still often tired out while feeding, and rarely finished two ounce bottles his first few months of life. He weight gain slowed.

After his surgery, he failed a swallow study after silently aspirating his feeds. It's possible that his respiratory issues caused by his heart defect were to blame. Or, maybe it was the methadone wean he was on at the time, or maybe an issue with his vocal chords after surgery. He was sent home with a feeding tube.

After two months of the NG tube he passed the test with thickened formula, but was slow to eat. I mean, slow.  It would take him an hour to eat four ounces. The weight gain slowed again.

Eventually he got faster at bottle-feeding, was starting to eat solids, trying finger foods. Elliott went from being fed formula by a machine to fully thriving on real, honest-to-goodness adult foods. A bit slower than an average child of his age perhaps, but still, he had put those struggles of eating behind him. Today, we don't just eat our breakfast. We eat, we taste, we make a mess. We celebrate how far we've come.

Thursday, January 9, 2014

Seeking Light

I remember his breaths, his chest slowly rising and falling as we walked around the dining room where light streamed in from half drawn blinds. I was captivated by his tiny features, the way his lips pursed and his newborn scent. I remember feeling afraid. Here I was, a first time mom holding this beautiful, fragile and precious life so vulnerable and dependent on ME and like most first time moms bringing home a newborn felt scary, but one with a critical heart defect? One who just had open heart surgery a mere 8 days earlier? Terrifying. “Would I catch the warning signs if something was wrong? Would he be ok?” I asked myself.

 I remember taking the photo that morning. We had done this routine just about every day, but that morning was particularly hard. I woke up feeling doubtful about my ability to handle everything. We had experienced so much heartache and it was far from over. I looked down and saw how he melted into the crook of my arm. He trusted me, he loved me, and he NEEDED me. I decided then that I wouldn’t allow fear to steal our joy. I wouldn’t allow our suffering to be meaningless. We would make light of this, we would fight and we would not lose heart. I took the picture so I wouldn’t forget. I hope I never forget… That while our pain may be momentary the lessons they leave behind are the ones I will fight to hold on to.

Once you’ve experienced darkness, only then can you truly understand and appreciate the light.

Wednesday, January 8, 2014

Cherish those moments of Light

Light can bring hope, it can bring peace, it is the opposite of darkness. When your child is sick and hospitalized, you look for any ray of light, any break in the darkness you can get.

Almost exactly one year ago, my son Judah had spent every day of his 4 months in this world in a hospital bed. He had endured surgeries, therapies, and countless procedures, enough to make even the toughest among us cry out. The doctors continued to work hard to stabilize his heart, his breathing, but he was still very sick. Some days the setting sun would wash over his hospital bed, fighting with the darkness to grant him just a few more minutes of peace, of light. 

Sometimes just seeing the sun set over your peacefully sleeping child's face is enough to make you forget about the stress, the hospital beds and your lack of sleep, all of the blood draws, tests, doctors, and pain, even if just for a minute. And when a minute is all you get until it starts up again, be sure to cherish those moments of light.

Monday, January 6, 2014

Looking into the light.

This is my boy, Elliott Wilde.

Today I went back to work after four months of maternity leave. Elliott's little sister is just three months old and I was chatting with a co-worker & friend about how hard it is to separate from your kids for an entire work week. This is my second return to work in a year and truth be told this time was a bit easier. Going back to work after having Elliott was hard. Hard! He was diagnosed with his CHD at two months old, had surgery at three months, returned home from the hospital at four months, I was back to work at five months. I was a total, utter wreck during months two through five, and my friend mentioned how she couldn't even fathom how I had handled it all. The surgery, the stress, and then returning to work.

You just.... do, I said to her. Honestly even now I am not sure how I handled it. I just did. Even on the hardest of days the fight was never over. Elliott fought everyday in those months and I fought right beside him. Each new day meant putting the day before behind me. I think about so many of the heart families I have come into contact with since becoming a heart mom and I have become aware of how blessed we are that we get to continue to fight. Elliott is amazing. He is growing and thriving everyday, inching step by step toward becoming the amazing little guy he was always meant to be. In spite of all he's been through, what we've been through, he is doing so well; I have to look into the sky and know there is so much goodness that has come from this experience.

Being a heart mom isn't easy. There are days that are downright hard. But with the setting of each daily sun is the promise of a new beginning the very next day. A chance to look into the light and feel the warm promise of the next day ahead.