Saturday, May 22, 2010

Zoe has Firepower

Sorry for the delayed update, however, better late than never.

On Friday, much like the day before, our focus with Zoe was on her eating. The dietitian, nutritionist, and physicians decided to adjust Zoe's feedings a bit, taking them from 50 ml a feeding to 45 ml a feeding, however, they want to fortify her milk with additional calories, to help her gain weight. As before, if Zoe doesn't meet her goal at each feeding, then the remaining milk, up to her quota is delivered through her NG tube.

As has become her pattern, Zoe rose to the challenge. Since the new goal was set, Zoe has taken all she needed, plus more, via her bottle!! She has been drinking 55, 60, 55, 50, 60, etc...way more than required. Her performance provided hope that the feeding tube could soon be removed.

Friday was also mine and Stacey's 11th anniversary. Under the circumstances, we weren't up for a traditional celebration, but I scheduled a massage for Stacey and we went out for dinner. Dinner was excellent, but we couldn't stop thinking about Zoe and her feedings, so we decided to return to the hospital for a late night visit and just in time for her 9:00 p.m. feeding.

When we arrived, just before 9:00 p.m., Zoe was sound asleep. We woke her up to start her feeding. As usual, before we started the feeding, we told her what her goal was and that we knew she could do it. I started feeding her and she was drinking like a mad woman. Every time she feeds, I feel like I'm holding my breath, and nervously watching the liquid in the bottle slowly pass the measurement marks. Then I do the math in my head and start to calculate how far she is from her goal, at every moment of her feeding. Her feedings are stressful. If she hits her goal, I immediately breathe a sigh of relief. So, back to the 9:00 p.m. feeding, Zoe starts off zipping along. We started at 60, she quickly hits 50 ml, then 40 ml, then down to 38, then she starts to slow down. Often, when she slows and starts to doze off, we will change her diaper, to get her riled up in hopes that she'll take the remainder of her bottle.

The diaper change started off like any other. I had the old diaper down, then started to clean her up, then...SQUIRT!!! A cannon of bowel movement erupted from tiny, sweet Zoe!! The launch was audible and the contents were propelled with velocity, so much so, that when the launch occurred, I immediately yelled "Oh shit!" (How appropriate.) After I quickly recovered from the shock of what happened, I thought, we need to change the sheets on this bed, so I panned down to see how bad the damage was. As I panned down, however, I quickly realized that Zoe's propulsion sprayed all over my shirt. My immediate reaction - laughter. The nurse heard me yell, so she walked in the room, then she saw my shirt and started laughing and said she'd never seen that before. I'm glad I could be a pioneer of something. Stacey was turned around so she had not yet seen the damage, so I turned around and showed her, she immediately started laughing so hard that she spilled a bottle of milk all over her shirt. The whole thing played out like a scene from a National Lampoon movie. After we all stopped laughing, the nurse said you must have another child, because a first time parent would not react like this. Although, even if Zoe were our first child, after what she's been through, and will go through, I can't imagine reacting any different, even is she poops all over my shirt again.

Oh, I know what you're thinking, of course I took photos of the poo stained shirt.



I even got one of Stacey's shirt after she spilled the bottle of milk.



One more thing, after I cleaned up Zoe, and myself, we resumed her feeding and the all star took 60 ml.

On Saturday morning, I called Zoe's nurse to find out how her overnight feedings went, both feedings were 60 ml! The girl is on fire.

We arrived at the hospital a few hours later and immediately noticed that her NG tube was removed. We asked the nurse when the doctors decided to remove the tube. She said, "they didn't, she did" as she pointed to Zoe. This girl never ceases to amaze me. She told us that rarely does an infant remove her own NG tube; usually 3-4 month olds do this, not an infant. Obviously, she doesn't know our little Zoe is feisty, just like her mom.

Zoe, sans NG tube (and preparing to ask for one million dollars a la Austin Powers).



About an hour later, one of the attending cardiologists, from the CCU, came in and reiterated how well Zoe is doing. She said because of how much she is eating on her own, at this point, there is no reason to reinsert the NG tube. She also confirmed, pursuant to Dr. Spray's request, that a cardiac catheterization was scheduled for Tuesday. This will allow the physicians to have a better look at the anatomy of the heart and to prospectively determine if there is a problem or a potential problem, before we return to Arizona.

We were also scheduled for an NG tube training class on Tuesday, but it appears that Zoe will get us out of that. Good Girl!

After spending most of Saturday morning with Zoe. We, along with Grandpa and Grandma Muenich, took Emerson to Healthy Kids Day. The event included performances from Hip Hop Harry and the Laurie Berkner Band. As always Emerson loved the music.



She also got to meet Hip Hop Harry.



Oh, and they were passing out plenty of healthy foods and beverages, so we stocked up. Emerson even took inventory at the end.



Saturday evening, we returned to Zoe's bedside and discovered that she continued to take as much or more than she needed at all of her feedings. We stuck around for two more feedings and she continued to meet or beat her quota.

Overall, she is doing phenomenal. She is only on two medicines - lasix and aspirin - and the only wires she is connected to are simply to measure and record her vital signs.

Thanks again to all who have Zoe in your thoughts and prayers. Even though she is doing very well, she still has a long road in front of her, including a second, of three, open heart surgeries which will likely occur in August or September. So, please continue sending positive thoughts and prayers to Zoe and our family.

Love,
The Lihns

4 comments:

  1. Tears of laughter and joy... As I was reading this I was thinking Zoe was like her mom - and then read it. Too funny! Channel of positive energy flowing your way. You can't stop it. :o)

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  2. What terrific progress! She sounds like she is a tough little girl and listens to everything you are telling her to be able to come home! Can't wait for the next update!

    Barb G

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  3. Zoe is amazing! Love that she pulled out her own NG tube. She knew she didn't need it! No sense in keeping it in!

    Love everything about your blog update, except Caleb's Phillies shirt. That is UNACCEPTABLE!!! :) But really, unacceptable!

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  4. Great update! So proud of ALL of you! Literally laughing out loud. I am not sure how I would react to that, but I wish it had been all over that Phillies shirt. :) Copying Meg...UNACCEPTABLE. However, positive thoughts will continue to go your way.
    Dave Bilek

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