so a bit more history...

so anyways... where was i? oh yes..

once we got our baby girl home from the NICU we started to get used to life with a new baby in the house. we had lots of new doctor appointments and a ton of info to take in. we were started on a list of meds. lung treatments, vitamins, creon (enzymes) before every meal, etc etc.

at one of her cf clinic appointment's we learned that she had contracted MRSA at some point. not good for a CF'r.. its resistant to most antibiotics. it wasn’t a problem until the end of July. we went in for a routine apt. and got a chest x-ray and showed a lot of infection in her lungs. we were admitted to CHLA the next day for a 2 week stay. she was put under for a bronchoscopy & lavage then put out again 3 days later to place her PICC line. she would receive IV antibiotics every 8 hours for 2 weeks.

the hospital stay was very draining. while she had a roommate, only one of us could stay with her over night at a time. we had to sleep in a chair. no in room bathroom or shower. we had to use a communal shower that the patients all shared.

after her roommate left we got the room to ourselves and we were both able to stay in room with her day and night. once morning Christopher woke up sick (sore throat, cough etc) and the next day i woke with the same. CHLA contacted their infectious health manager and we were both sent home for a minimum 3 day stay to rule out swine flu. it was very hard to leave our baby girl for 3 days while we got well. the last thing we need is to pass this illness to her. so we stayed home. after we got better and were able to rule our swine flu, we returned.

we had some very amazing things happen while we were there. some very special women made our life a little brighter during our dark hour. we received a very large and delicious basket of get well cookies :D an adorable little elephant with a big bunch of balloons just for cookie.

we received a precious onsie for cookie and a few books to help pass the time. we were also very blessed to have the help from one woman that just.. I don’t have words for. she’s truly amazing.

in our time of need, she gave us the help to get our daughter a crib wedge to help relieve her painful and dangerous reflux.

she’s just so brave. she’s happy even through the worst of it. she has taught me a lot. she makes my world go round.

oh and she was released from CHLA on august 6th with a clean bill of health. we haven’t been back since!