Worth A Thousand Words

It wasn't until recently that I realized what the saying " a picture is worth a thousand words" truly means. The following photos, a small selection of the amazing gift of a session my friend Mabby Lavoy of LouLou Photography (Alexandria, VA) bestowed upon us, contain a few of secrets.

It took many incredible people to make this, Memphis's first and only trip outside possible. In our case, when we were making end-of-life arrangements (yes, it's a thing and still pains me to say that) two of our nurses discussed at shift change how we could maximize how special his last days with us were. They were able to convince me that it would be no problem (and so worth it) to get him outside. We worked with several other nurses to make it happen, and were accompanied on our outing by two nurses, a respiratory therapist, a doctor and two child life specialists who were instrumental in entertaining Harleigh so she could be a part of our only outing as a family. Also, my friend and fellow heart-mom, Heather, pushed the wheelchair I sat in which we figured was better than wheeling him out on his bed. 

Sarah was our special nurse guest on this day. We met her when we were first admitted to the NICU at Children's National Medical Center and she came down to visit and helped to transfer Memphis from his bed to my arms.

It really does take a village! See that door on the left? That's Memphis's room. He became well known for his room decorations which almost always incorporated sloths. His sloth wall decals I'm told continue to brighten the walls of his last room in the CICU.

Something else that isn't obvious in these photos is that they were taken the day before he would pass, and although we knew at that point this would be his fate, nothing could steal away the joy we felt in being able to do something so normal as a family. 

Something I will never regret is our approach to celebrating every milestone and holiday (no matter how significant) throughout his life. Before that last week we had (validated) high hopes that he would come home one day and slowly (as a sloth does) progress. A window of opportunity in which he was stable and there was enough staff to get him down for a CT scan gave us a lot of soul-crushing information that sends a very powerful message. No matter how things may appear on the outside, it's no testament to how sick someone actually may be on the inside. Simply put, he would never sustain life without all of the support he was receiving. We decided that we had a rare opportunity to make his passing peaceful and loving and since it was inevitable we wanted to avoid the very real odds that something traumatic could happen which would claim him in a way that would not allow us to provide him the comfort we were able to.

We took a quick FaceTime break to include a few very special people in our outdoor adventure.

Many of you who know us know we aren't very religious. We are, however spiritual people and believe the universe, a higher power or whatever it is sends us signs. This is why I think Memphis knew his time with us on earth was nearing an end. He never looked scared or sad. In fact, he seemed quite content. And he left us with a gift to ensure we would be okay. That gift is yet another thing you can't see from simply looking at these photographs...

They're the only ones that exist which include our family of FIVE. Memphis may have gotten his angel wings, but that won't stop him from getting promoted to BIG BROTHER!

Memphis's story is far from over. We hope you'll follow our blog and stay tuned to his Facebook and Instagram pages. 

Talking Through the Trauma

Privately working through anything is not my strong suit. I'm not an attention seeker, nor do I publicly share my trials and tribulations for sympathy. It's my coping mechanism. Writing brings me a kind of therapy that makes me feel productive, especially in situations where I may otherwise feel helpless. I may be judged and criticized for my lack of filter and willingness to publish information which may make others uncomfortable. But this isn't about them. And frankly, everything you do as a parent is scrutinized anyway, so I'll take my chances.

You go through a lot when your child is in an ICU. When we had Harleigh and learned of what it meant to be the parents of a preemie with a month-long NICU stay, we had no clue she was simply introducing us to all that life entailed. And I had no clue there was even such a thing as a Cardiac ICU. But enter Memphis, and our world was rocked as he wasn't just premature, but found to also have a heart defect contributing to his chronic lung disease that would require open heart surgery. And that's how we landed in the CICU. More on that in a later post.

This experience changes a person in many ways. It keeps you incredibly humble, for one. And although from the outside you may envision us sitting crib side all day and night, next to machines, cords and tubes, there's so much more to it. You form relationships and bonds when you open yourself up to taking in all this journey has to offer. It's so easy to isolate yourself and be pissed at the world during these times, but if you really want to cope, you involve yourself with your surroundings.

The Support Staff - Everyone begins to play a role in your new daily normal. It's quite honestly like going to work. The sweet homeless man on the corner when you exit the 395 tunnel. The parking garage attendants and valets. The front desk staff and security, summer student volunteers and unit receptionists. The cleaning staff, food service workers and even the kind man who transports the blood from the blood bank to patient rooms. I've sat down to meals with some of these people and learned personal details of their lives and will always remember them and appreciate the company they provided, whether they realize it or not.

The Caretakers - This list is longer than you may expect. In addition to the doctors (fellows, residents and attendings) there are nurse practitioners, surgeons, respiratory therapy specialists, physical therapists, occupational therapists, speech therapists, electrophysiologists (I like to call them the "heart electricians") hematologists, trach nurse and others who follow up often, some on a daily basis. There are social workers, case workers, charge nurses, resource nurses, nutritionists, pain management specialists and more you also encounter daily. And, of course, the most important relationships we form are those with our RN's. When you've been a patient for over 4 1/2 months like we have, in 2 different hospitals and 3 separate units, and there's a day shift and night shift, you meet a LOT of nurses. They may have seen you at your best and worst. In pjs, with unbrushed hair and teeth approaching day 2 (or 3) unshowered. They'll remind and encourage you to take care of yourself. They make discharge bittersweet. You'll be excited to finally take your little one home, but you're also closing a very stressful chapter of your life in which these people were key players with whom you may very well leave a piece of your heart.

The Other Families - Our newfound friendships have become amongst the most important. Your other friends and family are still very important, of course. But these guys "get it". They're going through it right alongside you. They feel everything you feel. You celebrate the small things together. Every. Little. Wean. Many of these are formed in the unit waiting room, where you tend to be only when there are other visitors and your child's room has reached capacity, or your little one is undergoing surgery. These relationships have been a blessing not only to us as parents, but also to our families (grandparents, aunts/uncles, and siblings) as our relatable experiences allow us pass the time sharing stories assisting with easing our anxiety about what other traumatic things may be occurring. You speak to each other in what may have previously seemed like a foreign language, using medical jargon in a way that flows freely and understanding exactly what it all means. You may cry tears of joy and sadness when you watch as family after family bring in their car seats and discharge. And you'll become Facebook friends, because like us you're probably millennials/Gen X'ers and that's what we do. You may bond over faith, hometown connections, careers or other commonalities, but you'll be forever connected as a priceless support during one of the most difficult times of your life. And if you're really fortunate, you'll stay in touch outside of social networking and watch your kids grow up together. We've been very fortunate to have gotten connected with past NICU/CICU families who formed non-profit foundations as a result of their experiences to assist other families, like us, and provide support and little treats and comforts. In this situation, it really is the little things that make a huge difference. We're so incredibly grateful for our paths to have crossed with all of these amazing people!