Why Meeeee?!

This is something I found myself asking over and over again when my newborn daughter was diagnosed with Tetralogy of Fallot - a congenital heart defect.

You see, my pregnancy was totally normal. Idyllic, even. Only a few weeks of "morning" sickness, a Buddha-like peace, and a giant burst of energy in my second trimester made things run perfectly smoothly. I worked my company's busy season, planned my high school's 10 year reunion, and even hunted for and moved into a house, all while big-bellied.

Then came my 40 week check-up. My blood pressure was high, which was vaguely worrisome. Then my doctor informed me that they couldn't even find one pocket of amniotic fluid. The fix for this, she said, was to be induced and have my baby. Needless to say, I was a bit freaked out. I called my husband and had him leave work. In the meantime, I went home, showered, shaved my legs, curled my hair, and put on make-up. I figured there'd be pictures at some point, and I'd be far too tired to do any of this after labor.

I was induced on my due date, and had my daughter the next day. She was only 5lbs, 9.5 oz. It turns out my placenta decided to just stop working late into the 3rd trimester, so she hadn't been getting the nutrients she needed to grow. They took her out, and placed her on my chest, and my husband cut the cord. I was in heaven. Then they took her away, and I heard the words "respiratory distress". No one was talking to me. They whisked her to the level 2 nursery, and a nurse filled me in. She had a pneumothorax - a pocket of air outside of the lungs. I was worried, but they said it would likely resolve on its own.

When I finally got to really meet M, she was under an oxygen hood that she was valiantly trying to push off with her teeny-tiny fingers. She was also jaundiced, and ended up under blue lights. Whenever I fed her, her bandaged IV hand would beat against my chest, desperately trying to make contact. Then the doctors told us she had a hole in her heart. They didn't have the proper tools to diagnose it, so they'd be sending us to a pediatric cardiologist when we were released. She also had a white spot on her eye that would require us to see a pediatric ophthalmologist (at this point, she wears glasses for astigmatism, but is doing just fine). When I started to tear up, one of the doctors put her arm around me and assured me the hole would resolve itself, and M wouldn't need surgery. She called later to check on me, after we'd gotten the official diagnosis. I refused to speak to her. I'd taken her word as medical fact, not mere comfort.

We took her straight from the hospital to the cardiologist when we were released 4 days after she was born. He apologized when he was late getting into our room - he had just had to tell a set of parents that their baby needed heart surgery - never an easy thing, he said. M had an echo, and a few other tests. Then Dr. B came back and told us that she needed heart surgery at around 6 months. Never an easy thing, indeed. I held it together for about a full minute before I started to sob. She was so tiny. So helpless. I knew as a parent my child's heart would get broken and I couldn't do anything about it, but I didn't think she'd be born with a broken heart.

The defect, Dr. B said, was Tetralogy of Fallot. It's a cyanotic  defect, which means that deoxygenated blood was mixing with the oxygenated blood and circulating throughout her body. Her pulse ox was about 96 at that point, but we could expect it to go lower. We also had to keep her from crying to prevent "tet spells" - spells where her oxygen could drop, turning her fingers, toes, and lips blue. How do you keep a newborn from crying, you ask? I don't actually remember. I held her a lot.

Some days I was sure she would be just fine. Other days I would stay up until 2am, holding her tightly and composing her eulogy in my head. Chastising myself because it sounded too much like the one in "What Dreams May Come". Failing to imagine a coffin tiny enough for my little pixie. Ending all of my prayers with "Please don't take my baby."

They put M on heart medications to prevent tet spells. They made her so cold that her sleep outfit was a onesie, pants, socks, a footed sleeper, a sleep sack, and a hat. Despite this, she was so cold that, upon feeling her hand in the middle of one night, my husband thought she had passed away. Our lives were a rotating blur of medication doses, doctor's appointments, and juggling the usual new parent problems like lack of sleep and a million outfit changes from diaper blowouts.

In the meantime, Dr. B. put me in touch with a mom whose son had gone through surgery for ToF the year before. She and I had a long conversation, and discovered that our reactions (and, oddly, our husbands') were much the same. She shared her experiences, and gave me an idea of what to expect. It was wonderful to talk to her - someone who actually knew what I was going through.

Finally, at 2 months old, her blood oxygen level was hovering around 60%. The surgery, Dr. B. said, would have to be moved up. So on the day she turned 11 weeks, I sat in a waiting room with my husband, mom, sister, and niece, while my 9 pound baby had her chest cut open, a Gortex patch sewn onto her heart, and her pulmonary valve removed. When we were shown to her room, she was the most beautiful, heartbreaking mess of tubes I'd ever seen. She had her first tet-spell then, not from the disease, but from holding her breath in annoyance over the breathing tube.

I couldn't pick up my baby. I held her foot while they suctioned her tubes. I stroked her hair and sang her "Simple Man" by Lynard Skynard (seriously her favorite song at the time) while they drew blood and changed bandages. The day I got to barely lift her while they gave her a sponge bath felt like a miracle. I slept in her room while she went through morphine withdrawal. I read her books when she was weaned enough off the medications to really look at the pictures.

When we took her home, it was still a whirlwind of medications and follow ups. We couldn't lift her under the arms for fear of interfering with the healing of her breastbone. I was alone for most of that week, and it was exhausting, but it was so amazing to have my baby home. To have her healthy. To be able to hold her, and to know she would be ok.

Still, through all of this, I wondered - why me? Such a selfish thought, but there it was. Why my perfect baby?

And then it hit me. God blessed me with the gift of gab. I prefer the company of books, or one or two people, but I love public speaking. I can talk to anyone about anything. And I will. I'm the person who compliments someone's manicure at the bathroom sink and ends up knowing their life story by the time our hands are dry. And I thought about the other mom I'd talked to (who I'd also texted nearly constantly while I was in the hospital with M after my husband had to go back to work and could only be there at night). About how much talking to her had helped me. And there it was - I was going to start a non-profit. I was going to make sure that no parent had to go through this alone - that everyone had someone like I had.

So today, that other mom and I are steadily working through the process (along with Dr. B) of forming a non-profit for just that purpose. To educate. To help. To comfort. To make sure our babies know that their zipper scars are badges of courage. To make sure that other parents know that their baby isn't defective, even if their heart started out that way. To be a resource at 3am when a mom would feel like a crazy person texting her cardiologist (although I texted Dr. B on New Years...).

I don't always know why things happen to me. We can't always know. But this one I'm sure of. My brave, beautiful, healthy, happy baby girl (who will be 2 in November) is my inspiration. Because of her, and because of her special heart, I will be able to reach thousands of people. So now, to me nearly 2 years ago, I respond - why not me?