153 Holes in My Heart

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.

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The Spohrs are Multiplying is a guest blogger on Bridges.

Guilt

The disconnect between what my brain knows and what I feel emotionally is incredible. My brain understands that I did the best I could do for the babies. My emotions, on the other hand, are having trouble realizing that.

I have always had a mountain of guilt. Even as a small child I have felt guilty for things that I have had no control over. I don't know if I was over sensitive or had an over-inflated ego, but I felt like somehow I contributed to almost everything bad in my world. I felt guilty about everything.

I felt guilty when the class would misbehave when my teachers were gone. Surely the teacher was yelling only at me. I felt guilty because my parents were the only parents still married among my circle of friends. I went for some time not talking about my dad because I felt bad that he was still at home with my family. There was nothing for me to feel guilty about in these situations. I was always too afraid to do anything bad while my teachers were gone. Why should I feel guilty for having a family with two parents? Still, the guilt was there.

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Stacie is the contributing editor for Prematurity. She writes regularly at her personal Heeeeere Storkey, Storkey, where she writes about her life, family, and most especially, her twin boys, Sh.awn and Ja.son, who were born at 28 weeks and 3 days due to PPROM.

Stacie's Story

Stacie is the contributing editor for Prematurity. She writes regularly at her personal Heeeeere Storkey, Storkey, where she writes about her life, family, and most especially, her twin boys, Sh.awn and Ja.son, who were born at 28 weeks and 3 days due to PPROM.

For the longest time, my life was meticulously thought out. I am a planner and list maker by nature, so I knew exactly what I was going to do, how I was going to do it, and when it was going to happen. There were some minor surprises thrown in along the way, but for the most part, everything went as expected.

That is, of course, until we started trying to have a baby. Nothing went as planned from that point forward. But, three years, 3 IUI's, 3 IVF's, 2 miscarriages, a clotting disorder diagnosis, and twelve weeks of blood thinners later, I was finally pregnant with fraternal twin boys.

My pregnancy was less than stellar. It seemed like anything that could go wrong did. Starting my 20th week, due to a funneled, shortened cervix of 1.2 cm, I spent six weeks on complete bed rest at home, up only for bathroom visits, a shower every other day (oh, how I loved the freedom a shower brought), and my weekly doctor visits. Then at 26 weeks, the thing I feared most happened, and twin A's sack ruptured. I was hospitalized for the remainder of my pregnancy, delivering our boys by cesarean section at 28 weeks and 3 days.

Then all hell broke loose. My boys were born sick, apparently with an infection that ultimately affected me as well. Within hours of their birth, they both became gravely ill and nearly died. Brain bleeds, hydrocephalus, and surgeries became my life. Fear, stress, and adrenaline were my constant companions for the 104 long days the boys spent in the NICU.

While the trauma of the events surrounding their birth and early days are slowly fading from my daily thoughts, I continue to struggle with the fear of what lies ahead for my miracle babies.

Still, I have hope that my boys will live full and productive lives without any major issues. I pray that the hard times are behind us. And most importantly, I know that I am blessed. How could I not be with two beautiful 9 ½ month old boys?