Thursday, July 25, 2013

Pity Party for One, Please

I didn't ask to be a heart mom. I had 4 freaking sonograms ( 2 in 1st trimester, 1 in 2nd tri, and 1 the day before my EDD) and not one picked up on anything that was wrong. In hindsight, that was an amazing blessing, which I will explain later, but for now, I'm just going to rant and ramble.

We meet with the surgeon tomorrow morning. I'm a bundle of nerves, can't sleep, and my 20 week old baby is sick. Again. For the fourth time in his short life. His immune system is weak, I have 3 older boys, and I have to get out of the house sometimes. This time we picked something up and one is on steroids for croup and the baby has a fever. My panic button goes off. I know his oxygen levels are too low. You can see it in his eyes, his face, and you can hear it when he cries. His cry changes when his levels are low. I don't need a monitor to tell me that.

When I saw the surgeon's office phone number pop up on caller ID, my heart sank. I immediately went to "that" place. You know, the one that gives you negative thoughts and you believe them. Yeah, that place. I figured the office was calling to tell us they were bumping us again from the hour long consult appointment. While they did bump us a second time, this time it was just an hour. Whew! I felt like throwing up after that call.

I haven't had a cry about being a heart mom because honestly, I'm just too damn busy with being a heart mom. Managing appointments, keeping records, dealing with insurance, SSI paperwork, more forms, more calls, well, it is overwhelming at times. I need a good, ugly cry soon though.

We are exclusively breastfeeding. That is incredibly fabulous and scary at the same time. Here are reasons to breastfeed a baby with CHD:

Why breastfeed?
Babies with heart problems that breastfeed:
  1. Maintain higher and less variable oxygen saturation levels while feeding (Marino, 1995)
  2. Maintain higher transcutaneous oxygen pressure levels during and sometimes for several minutes after feeding (Hammerman, 1995)
  3. Gain weight much quicker than their formula fed counterparts. 
  4. Are released from the hospital quicker. 
  5. Breast milk protects babies with heart conditions (who are more at risk) from getting respiratory illnesses
The scary part is that his weight gain is all on my shoulders. If he doesn't gain, it's my fault.

I've caught myself saying things like, "He has an easy CHD." Umm, I need to shut my mouth. Anytime a baby, who will be barely 22 weeks old, is preparing for heart surgery is crazy. They should never have to undergo open heart surgery. His heart is not in a happy place. No CHD is easy. I need to accept that.

He is in my arms right this very minute. I see his beautiful face, feel his slumbering body next to mine, and realize, I can't fix him. I can't change him. I can't do this fight for him. I can only love him.

That is all heart moms can do.


  1. I love you Mary! You are such a fantastic mom. I'm so glad your appointment didn't get bumped again. I'm praying for you.

  2. Oh, that scared me wondering if they bumped you but I'm so glad they didn't push it back by much. You were the first thing on my mind this morning and I'm praying your visit is able to answer questions as you prepare. Miles is always in our thoughts and prayers and I hope he recovers quickly from this fever.

  3. who's the doctor? tam? praying for you. we had our date tentitively set for 9/6 for surgery/cath