Tuesday, May 25, 2010

We could all learn something from her.

So, things did not turn out as we'd hoped. Once the doctors were inside the heart and took a close look at the shunt, they immediately noticed some pronounced narrowing at the top of the shunt, the same location where the shunt originally kinked, during the Norwood. Where there's smoke, there's fire and apparently Dr. Spray smelled smoke when he ordered the cath. We were told this evening that "Dr. Spray hardly ever orders caths." The original kinking of the shunt apparently made him nervous. Good thing, because the shunt was pretty narrow. the cardiologist told us we were lucky, because all her numbers/vitals were good, such that you wouldn't expect narrowing to be present, but it obviously was, so had the cath not been done, at any point the shunt could have failed or become compromised.

In order to fix the narrowing in the shunt, the doctors placed two coronary stents, the exact same stents used in adult hearts. At the time of the Glenn surgery (the second of the three required open heart surgeries for HLHS), in approximately 3-4 months, the shunt and the stens will be removed. In the interim, however, the stents traditionally do a good job of holding open the shunt, but with that comes the increased risk for blood clots, also a potentially fatal side effect.

Tonight, Zoe will go on a round of Heparin, a blood thinner, then tomorrow through the Glenn, she will be on a daily dose of aspirin and Plavix, both thinning agents to aid in the prevention of clots.

To make the night harder, after we were able to go see Zoe in the CICU, the nurse said Stacey could try feeding Zoe, since she hadn't eaten since 5:30 this morning. She has to remain flat, however, for six hours post cath, so we had to feed her on her side. She immediately latched on to the bottle and started eating with a fury. After taking about 8 ml she starting gurgling. I immediately recognized that she was choking, but our nurse was in another room. Zoe's gurgling and gasping grew in intensity and volume and it was quite clear there was a problem. I ran and grabbed the first nurse I could find and said "get in here now!" She came in and as she examined Zoe, we saw her oxygen sats drop into the 50s, a dangerously low level. The nurse could not see anything in the airway, but I was not shy in pointing out that she was still choking. The nurse then grabbed suction to vacuum the liquid out of Zoe's throat, then they put a oxygen mask over her face. The blue in her lips started to fade, her gasping began to subside, her sats started to rise, but none of this did anything to eliminate the panic we felt. I was immediately overcome with anger. Not at the nurses, but in wondering why does Zoe have to go through all of this.

Minutes later, on rounds, the physicians needed to obtain some blood for labs. For some reason they were having trouble and they stuck her in both arms, multiple times, then went to her groin. After spending the day in a cath, then choking, she was being poked and prodded an inordinate amount of times. Just seeing her go through this brings tears to our eyes. While they were taking blood, the charge nurse turned to me and said, "Dad, you really have a brave one here. We could all learn something from her." "Damn right," I said. "I've already learned a ton from her."

Zoe is resting right now, after a very hard day.

To anyone reading, please send positive thoughts and prayers that Zoe's stents do their job and she has no complications or clots and nothing but smooth sailing until her Glenn procedure. Then ask people you know to send the same thoughts and prayers. Zoe is tough as nails, but she can use all the help she can get.


  1. Zoe is a champion and she has wonderful parents. Stay strong and tell her she has a bunch of people cheering for her back in Phoenix. John, Carrol, Mackenzie & Trey and everyone in our family is praying for her!

  2. Sweet Jesus. Zoe is a rock and her parents are indeed wonderful.

  3. All in Ohio are praying hard as we can. Stay strong as your little baby and fight this next battle with her. You guys are great. Much Love and Prayers for all. Aunt Mary

  4. What a tough day for Miss Zoe. She is a fighter and will continue to fight. Thank God you have Dr. Spray watching over her. I think about you all daily (hourly, minutely, you get the picture :)

  5. So glad that this is behind little Zoe -- a tough day for sure! Hope that she has calm days with great O2 sats from now on! Emerson is so cute in the birthday photos -- she is quite a trooper as well! Sending good thoughts and prayers.


  6. A co-worker of mine mentioned your baby to me and sent me a link to your page. I to have a miracle heart baby who is has overcome so much in her short 7 months here on earth. Your story reminded me so much of my own, and I know how important it is to be able to relate to others and find different outlets of support. It brings tears to my eyes re-living your pictures, just know in the end Ms. Zoe will be a much stronger women because of it. For me prayer pulled me through a though 2 mnts that we remained in the NICU. You are blessed in many ways- I pray you and your family continue to be strong as Ms. Zoe shows every one what she made of. If there's any questions you have or interested in support form another heart mom please ask away cjackson1820@cox.net.... If there is any advice I can give you it would be to be as involved as possible- ask questions, questions and more questions! Always follow your heart and if there is something you don’t understand or don’t feel is right intervene. No one knows your baby girl like you do!

  7. Sending positive energy your way. Reading what Zoe, you and Caleb are going through brought back memories of when Lianne was a preemie, being poked and prodded in much the same way. Your little Zoe is very strong.