Month: February 2018

CHD Awareness Day 7

Giving your child over to a stranger to perform surgery is extremely conflicting. You know it will be painful. You know it will be traumatic. You know that it’s risky and even dangerous. It goes against every parenting instinct you have, but you know that it is necessary. So you do it.

You sit in an uncomfortable plastic and vinyl chair and hold your newborn baby in your arms and let the tears stream silently down your face while you wait for them to take her. You do your best to memorize every detail of her face- because…. well, you can’t think about why. You breathe in her sent and try to distinguish what’s her smell and what are the smells of the hospital blankets she’s wrapped in. You watch her body rise and fall with every breath and feel the beat of her heart and try as hard as you can to believe that this will not be the last time you get to do this. You pray to your Deity of choice,  whether you believe in them or not because it can’t possibly hurt to beg for their intervention on your behalf.

You watch the clock. You don’t want to. You hate the clock. The clock is a physical representation of your enemy. Time had never been a concept that you ever considered overly important until it became vitally clear that each tick of that second hand is not guaranteed. It keeps slipping away which means your moments with this perfect little human are slipping away too. You tell yourself to ignore it. You tell yourself not to look. You tell yourself it won’t change anything to sit and stare at it, but you still position your chair squarely in front of your tormentor because all of your will power is otherwise engaged merely keeping you sitting in this room waiting for a stranger to take away your whole world. So you sit in front of it and volley between memorizing your daughters face and doing the math to figure out how much more time you have to memorize your daughters face.

And then suddenly it’s time. The nurse who had been handling you with more patience and compassion than you ever knew possible gently guides you to the pre op room. They talk about things. They have you sign paperwork and when they ask you if you want to read it, you answer firmly that you don’t. You’re going to sign it not matter what it says because you have to. They introduce you to all the strangers who are going to be holding her life in their hands and they ask you if you have questions. You can only think of one and you’re too afraid so say it out loud. The surgeon senses your question, though, and answers it without making you ask: there is a 80% chance of survival. 80% seems so inadequate- but without this intervention, the odds are 100% that she will not survive.

They begin to wheel her away. You are still giving kisses and making promises to her you’re not at all sure you can keep. You watch until they disappear behind the double doors and you crumple into the arms of your spouse and they crumple into you. You hold each other for a while and cry and pray and push the doubt as low as you can. When you feel like you can breathe again, the same nurse who has been caring for you during this process is there and guides you to the waiting area. She has a box of tissues in her hand and she pulls you in for a hug and you feel like shit because you can’t even remember her name. They explain how you will get updates and they tell you where you can get coffee and snacks and then tell you to go find a spot and get comfortable.

You are calm now. You don’t feel tears tugging at your eyes or the shallowness in your chest. It all somehow seems less real in this room, like maybe this is all happening to someone else. You spot your family already seated and you walk over to join them. You put a small smile on your face because they need to see you strong- they need to see that you believe it will all be fine. They wrap you in a quick hug and then immediately begin conversation about anything to distract you and you find you’re eternally grateful for their presence. You settle in and continue to watch your nemesis tick the time away…. and wait.

End part 2

CHD Awareness Day 3

The dog in the picture below is Pru- She has been with Ellie through all of her heart procedures and surgeries except for her very first at 8 days old. Pru watched over Ellie and helped my sweet girl be brave. She guarded over her hospital bed and was right there when Ellie would emerge from her anesthesia. This stuffed dog has been through it all with us.

 

CHD Awareness Day 2!

Rocking red (stripes) for National #WearRed day! Did you know that there are 100-200 deaths in newborns due to unrecognized heart disease? Did you also know that this number could decrease by just doing a simple oxygenation test at birth?

If you’re wearing read, share a pic! And thank you for helping raise awareness for CHD!

 

 

CHD Awareness Part 1

I’m excited. I have been for weeks. They told us that this appointment would be the one where we find out if what I’ve suspected since I found out I was pregnant is true; we’re having a girl. The whole 30 minute car ride to the hospital I can’t stop talking. Not really about the appointment, just in general. I’m too excited to sit in comfortable silence with you. You are quiet. You are always quiet, but I see the small tug at the corners of your mouth; you’re excited too.

They call us back to begin the scan. The room is dark and warm, almost like a cave. It might be cozy if not for all the medical equipment everywhere. I have started to become comfortable with the fact that my dignity is of no consequence here as I adorn the hospital gown and get situated for the scan to begin. The tech performing the scan is sweet. She’s young, maybe younger than we are. She is very friendly and I think immediately that I like her.  You take my hand as she squeezes warm goop from a tube and digs the probe into my belly.

I’m still talking. I love new people, especially people who are about to show me my little kiddo, so I make conversation with the tech as she begins searching for features and charting measurements. She is animated too and I think that she may like me as much as I like her. The conversation ebbs and flows as I try to contain myself so she can do the work she is here to do. She tells us what we are looking at- a hand, a foot, a back- and finally tells us exactly what I have been hoping to hear: we are having a girl. I grin wildly at you, and you smile at me. I say “see I told you so!” and you chuckle and assure me that you never doubted me for a moment.

We are lost in that moment for a while until I realize how quiet our tech has become. I look at the monitor. By the rhythmic movement on the screen I know we are looking at her heart. We aren’t just looking, though. The tech is scrutinizing. She is measuring and re-measuring. She jabs the probe harder into my gut. It hurts, but I’m more interested in what she is looking for. The smile she had been wearing has completely faded and her brow is furrowed with concern and determination. This goes on for what feels like an eternity- the silence becoming loud, uncomfortable, frightening. I know you feel it too. You just keep watching her. Your hand starts to sweat and I let go because it’s too much to add to everything I am feeling right now.  My heart is pounding. I finally ask.

“What’s going on?”

The tech jumps slightly. Sound has become so foreign in this place that it has startled her. She composes herself and tells me she is just doing a more in depth scan of the heart. She is back to silence. I go back to it too. I don’t know what else to do. It’s you who speaks this time.

“Is something wrong?”

She falters. She is thinking carefully about what to say.

“I’m almost finished and then the doctor will come in to discuss the scan. I’m not really allowed to interpret anything.”

She looks at me briefly with concern, but then immediately sets back to it. Once she has all her images and measurements, she helps me clean the goop off my belly and tells us that she is going to get the doctor.

We sit in silence. I’m not excited anymore. I’m terrified. Even though we haven’t been told anything, I can feel the tension from what has just transpired. Adrenaline is pumping as my fight or flight instincts are in full force. I’m talking myself down. I’m telling myself to relax. I look at you. Your leg is bouncing and it’s shaking the table I’m sitting on and it’s making me furious. I have to bite my tongue not to yell at you to stop. I have just enough of my wits about me to recognize the anger is from fear and it’s not fair to be so angry with you. It’s been an eternity. What are they waiting for? Where are they? Don’t they understand how long we have been waiting here?

You start to pace. You’re tense and frustrated.

“I’m going to go see what the hell is taking so long.”

“Go for it. This is unreal. They can’t just leave us here all day.”

You head for the door but it opens before you can reach it. It’s the doctor. I don’t know who he is. He introduces himself calmly. I’m trying to read him, but he has mastered his poker face from years of practice. His tone is casual as he begins.

“Mr. and Mrs. Crawford, we saw some anomalies on the scan with your baby’s heart. It appears to be much smaller than is typical at this point in gestation. It could just be the way the baby is positioned, but just to be on the safe side, we will have you meet with a pediatric cardiologist next month and do another scan.”

1 month. We have to wait one month to know if there is something wrong with our little girl’s heart. The month is long and we are exhausted. The drive back to the doctor this time is somber and silent. There is no excitement here. We don’t talk about it or set any expectations. We are preparing for some kind of battle and we cannot arm ourselves with false hopes.

The scan is much as it was the last time. This tech is not as friendly or as happy as the one before, but I find I don’t care. We are all quiet this time and although the silence is heavy, I can’t imagine having to engage in small talk right now. When she’s done, she tells us the doctor will review and come see us in a moment.

Dr. Bramlet comes in. He is young and handsome and dressed impeccably. He is confident, bordering on arrogant.

“Mr. and Mrs. Crawford, your daughter’s heart did not form correctly. Based on what I’m seeing, it is likely she has something called tricuspid atresia, but it’s too difficult to tell in utero. When she is born, we will do a scan and determine what exactly is wrong and make a surgical plan based on that. Likely she will need several surgeries, but I can’t really be more specific until we know exactly what we are dealing with.”

He continues. He is matter of fact. He is neither warm and bubbly nor cold an unfeeling. His approach is clinical and I appreciate that. I need someone to be clinical. I need him to be this way because I cannot think critically right now. He begins talking about different surgical options and they all sound like science fiction.

He’s still talking, but it’s become hard to hear him over my own thoughts. The more things he says, the more I realize the dreams I had for this little girl and our family is gone. I’m not crying yet. I don’t really know how to mourn this. I can only sit there and listen to this man tell me medical terms I don’t understand and explain procedures I didn’t know existed.

“It’s important to remember that kids born with congenital heart defects, even ones as severe as your daughter’s, can live fairly normal lives.”

Hope. He offered us hope. I cling to it. I mentally start to pull back out all the dreams I had just thrown away and start to smooth them out again. You take my hand. It feels rough and warm and so good right now. You’re here. You’re in this with me. You and I together. We continue to listen, and I squeeze your hand to let you know I’m here with you.

When it’s all over, we have new appointments, a new hospital, new testing, more scans- our docket is full and our heads are swimming. We drive home, talking a bit more now. It’s the first round of a game we will play countless more times in the future: focus on the hope.

 

End part 1.