The first time I got a real look at Maddie, the medicines being pumped into her had swollen her body and stretched her skin to its limit. I didn’t know her eyes were blue for two weeks because they were swollen shut. The tape that held her ventilator in place covered her face. The tubes were everywhere. She had a PICC line in her right arm, an IV in her left arm, an umbilical line, a forehead IV, and three chest tubes. Punctures in my brand new baby’s skin. Punctures in my heart.
I’d never heard of chest tubes before Maddie. Basically, it’s a tube that goes directly into the chest to help remove excess air. Maddie needed chest tubes because the ventilator she was on kept popping holes in her tiny, weak lungs. Air would seep through these holes into the pleural cavity, or the area between her lungs and chest wall. That air would prevent her lungs from expanding, making it impossible for her to breathe. From all my reading, chest tubes are extremely painful – not only the inserting, but also the removing. Maddie had five chest tubes at one point, and when one would stop working, it would be moved. She has a roadmap of scars all over the right side of her chest. Scars all over my heart.
Maddie’s umbilical line only lasted about ten days, so after that when the doctors needed blood – always daily, sometimes multiple times per day – the nurses would prick her heel to draw it. Maddie had so many heel sticks that toward the end of her stay in the NICU, she would sleep through them. After one of her IVs became infected, the nurses would only insert an IV when abolutely necessary – for a medicine that couldn’t go through her PICC line, or for a blood transfusion. She’d sleep through those insertions, too. My heart felt the pain her skin had grown accustomed to.
Every new baby gets vaccines, that’s nothing new. Maddie had to get an extra vaccine every month to help prevent RSV. That’s six extra shots in her chubby little thighs. Both times she’s been re-hospitalized, she’s had IVs and blood draws and heel sticks. Her last few illnesses have required blood tests. Her cystic fibrosis studies needed blood. Now that she’s older, she doesn’t sleep through the needles. She always cries out, but then she gets quiet and waits for the blood draw/shot/medicine to be through. So little, but so brave. It makes my heart break.
One of Maddie’s NICU nurses once told us that while Maddie would never remember her hospital time or the pain, Mike and I always would. The pain of her pain will never leave me. When my shoulder hurts or my c-section incision is bothering me, I just have to remember what my little baby went through to keep the complaint from passing my lips. I thank God every night that Maddie will never remember the difficulties she faced in her first year of life. If I thought for one second that she would…well, I don’t know what I would do.
I’ve thought a lot about the physical scars on her chest, the scars that she will surely notice and ask me about. Scars that will show when she’s old enough to wear a bikini. A chest tube went directly through her right breast tissue, so there may be some growth issues there when she starts to develop. Right now, I call the marks her kissing spots. When I’m dressing her in the morning, I kiss each spot on her chest until she shrieks with laughter. If I could remove any reminder of her difficult start, I would, but since I cannot, instead I will teach her to celebrate them, cherish them. They are marks of life.
So far in her eight months, Mike and I have counted one hundred fifty three shots/IVs/sticks/pricks/tubes/holes in Maddie’s skin. Life-saving holes. Each hole in her skin is a hole in my heart I will carry with me until the end.