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!
