At 10AM this morning, our Community Health Nurse Amy came to visit. She is such a sweet person and we are really lucky to have her. I basically went over everything that has taken place since we were discharged from the hospital and the plans we have with each of Zoe's doctors. She usually measures Zoe's weight and length but since we had a check yesterday, we didn't want to get Zoe all worked up and do it again. Amy is so helpful in connecting us with all of the right resources. Just last week I called her to see if she had any information on in-home physical therapy and she was able to give me the number for a company called Beyond the Clinic. They take our insurance and service our area! Our first appointment is next week! Without even asking, today she offered to help us start the process of applying for Supplemental Security Income (SSI).
At 11:30AM Zoe and I headed to our pediatricians office to have Dr. Rollin check a rash that she has that goes from the right side of her face, down her neck and upper back. Luckily, Dr. Rollin says it looks like it is just a combination of baby acne and heat rash. Considering she sweats so much because of her hardworking heart, the heat rash makes complete sense. Zoe has also been unusually fussy over the last couple days and Dr. Rollin thinks that since Zoe has grown so much, she probably needs an increase in the volume of her feeds. We will now be running 700 mils of 27-calorie Enfamil formula over 35 mils per hour. Hopefully her fussiness is due to just needing more food and this 5 mil/hour increase will make her a happy baby again!
After every appointment, I leave feeling overwhelmed and in over my head. I walk out of the door with a long to-do list... appointments to make, changes in meds, feeding regimen, exercises to do with her and much much more. It is tough not to feel defeated sometimes by this new way of life. We have become hypersensitive about every little cough, sneeze, long nap and cry. I often have to do what I tell my 3 year old and just take a deep breath, enjoy my kids at this very moment- no matter what shape they are in and just love my family. I know that it won't always be like this and that she WILL grow and she WILL thrive because she is the strongest kid I know. We will look back at this time in our lives and be better for it. Until then, I just have to keep on truckin' along because I am a mom and that is what we do.
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