It's been a while since my last post. Everything has been so busy and time has gotten away from me. Monday will mark 2 weeks since Lu's surgery and everything has been going great. We were discharged from the hospital on the Friday morning following my last post. It was so exciting. Around 8am, the nurse came in and started the discharge process, which surprised me because I figured it would be later in the day for some reason. They did another echo to make sure everything was fine after they removed the pacing wires, the day before, and then we started getting ready to leave. When the doctors did their rounds, they went on and on about how Lu was the ideal patient. She had recovered so quickly and with such grace.
By 10am, we were on our way out of the hospital with our healthy baby girl. I knew, in my heart, that after I walked out of those doors, everything I had been hoping and dreaming of for Lu, and for our family, would finally be happening, in the days to come. We went from giving her 4 different medications, several times a day, to only two different meds, twice a day, with lower doses. She is on Lasix for fluid retention and Zantac for reflux but can be taken off of them in a few months. I edited all of my alarms, on my phone, that reminded me to give Lu her meds and smiled as I deleted the 6am and 10pm doses. I couldn't wait to start having a normal routine with an earlier bedtime and having less medications made that much easier. I also looked forward to feeding her, watching her enjoy eating, and watching her gain weight. For 6 months, I had been worrying about her health, checking on her often while she slept, weighing her nonstop, and bringing her to the doctor twice a week and now I could just enjoy her and let her be a kid without worrying about every little thing she did. Needless to say, I was ecstatic!
Since we have been home, Lu has been a normal baby. We are amazed by how much she is eating. She has been gaining about an ounce a day and has been eating almost twice as much as she did before the surgery. She is also adjusting well to her new routine. She has a bedtime of 8 or 9pm and sleeps for about 12 hours, waking only twice to eat during the night. Next week we are going to move her from her pack n' play, next to our bed, to her crib in her own room. She is pretty easy going so we expect that it won't be too much trouble.
We saw her cardiologist, Dr. Appleton, in Orlando, last Wednesday. She got another echo and it showed some "mild to moderate" mitral valve leakage. He said that this is a common thing with these types of heart repairs and could improve over time. He also said that it shouldn't cause any problems in the future if it doesn't get worse. If it does get worse, it can be treated with medications and/or a possible surgical correction in 5, 10, or even 20 years down the line but it is still early in her recovery so we are hoping it will be okay. She still has no physical restrictions, which we are very excited about. She sees Dr. Appleton again in 2 months and can be taken off of her Lasix and, possibly, the Zantac as well since reflux usually goes away after the congestion from heart failure resides. After that she probably only need to see a cardiologist every few years.
Now we are just adjusting to our new routine and our hungry little girl but most of all we are enjoying Lu and her true personality, without the stress. :)
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| No more wires! |
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| Time to go home! |
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| Home and happy to be reunited with my cousin Sailor! |
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| Piggy! |
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| I love food! |
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