Saturday, November 16, 2013

Home Again


We're home....There is nothing more sweeter than being home with the family. Our five day stay started to get tiring on all of us. Hospital stays are never fun. Poor Natalie was so bored. Her toys only kept her entertained for so long. She knew she was at the hospital, and was ready to get home.


So far she is doing well. She will go on a HOLT monitor Monday. Oh how I pray that the arrhythmia's are being managed by her medication. She will be closely monitored and will likely be on anti-arrhythmic medication till she is at least one.

She has been teething a lot the last few days. No teeth yet, but I'm sure in the near future one will pop through. She has been waking up during the night, and is becoming more habitual for her. All I know is that we need our sleep. Waking up at 3 am is not alright....

So we missed our ABR (hearing test) at OHSU. We go back the third week of November. We can't wait for her to get her hearing device. She is smiling and laughing more and more, and I know the device will encourage her to interact more. We've also noticed the quality of her voice is improving. Although she has a long way to go, I am starting to believe her vocal chord paralysis was likely due to her heart surgery, and not associated with CHARGE.

We're still patiently waiting to hear back from Dr. Reddy. I'm telling myself no news is good news. I can't tell you how saddened I am knowing that Natalie is going to need heart surgery again, and probably in the near future. The first time around was hard, but knowing what your in for makes it so much more difficult to except. I just pray that God works a miracle in our baby girl. He is bigger than any heart disease. Miracles happen everyday, and I ask daily that God would spare another heart surgery.

God is our refuge, and in him all things are possible. During our first hospital stay I met a wonderful friend and who also had a daughter needing heart surgery. She often reminded that it may seem as though we are living our worst fear, but in reality we are conquering our worst fear.

We're needing prayer for a multitude of things, but I ask that you specifically pray for Natalie's valve to grow, and that her arrhythmia's can be managed.



Thank you for your continued support,

Blessings,

The Pierce Family










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