It was a rough one

As Andy indicated in the post on Monday, we had a very rough week. The steroids are just not very kind to Maggie. She cried constantly from Sunday until Wednesday. Wednesday and Thursday she moaned whenever she was awake. So, I guess we moved from a cry to a moan--neither of them easy to handle.

On Thursday Maggie did not feel well. After eating during the morning, she got sick early afternoon and refused to eat after that. She would lay her head on our shoulder all day, clearly not feeling herself. She gagged and dry-heaved throughout the day. I thought that perhaps she was getting the stomach flu because she didn't eat for almost 18 hours.

On Friday, she continued to refuse to nurse in the morning, but did take some cereal and milk. We had an appointment for outpatient chemo on Friday and I feared that either they wouldn't start it or that they might admit us to prevent dehydration. Though Maggie wasn't eating much, she was definitely becoming more herself by talking and smiling again. We were so happy to see our Maggie back. You don't realize how much you miss that smile and babbling until you only see a solemn baby all the time.

We went to our appointment yesterday and they did in fact administer the chemo. It's a low dose of Methotrexate. She also started a chemotherapy that is oral that we will administer at home. She will take this basically the rest of her treatment. The drug cannot be administered with milk and so Maggie can't drink an hour before administration and must wait until 2 hours after. This provided a bit of a problem last night and Andy and I took turns entertaining Maggie. She hadn't really drank anything throughout the day and so she was ready to nurse some.

Maggie is beginning to eat a little better now, however she still gags after eating. Dr. French thinks that her uneasy stomach and vomiting is associated with the steroids. He described it as Maggie being on a high throughout the week and then once off steroids her body was trying to manage. We also think that Maggie might have some acid reflux as she continues to gag.

Our nights have still been very horrendous. During the time that she was on steroids, Andy or I held her quite a bit to ease her crying. I think she has grown accustomed to being held while sleeping again (seems like we are regressing to the newborn stage). Maggie will fall asleep immediately when held, but as soon as we put her in her crib she screams in panic or as Andy calls it, desperation. She is unable to soothe herself either. Last night we both camped out in the living room as I held and rocked Maggie in the chair and Andy slept on the couch in case I needed assistance. This worked for about an hour until Maggie woke from her sleeping cycle crying. We finally decided to give her Ativan and finally around 3:20am, Maggie was out (thank you Ativan). I was able to put her in her crib and she slept for about 3 hours.

Though you might not care for the details of our nights, they have been very challenging. I have been very patient with Maggie because I know that her sleep cycle is messed up due to drugs. Last night I did find myself getting a little frustrated and angry as she screamed in bed, but immediately slept in our arms when we picked her up. It's hard because prior to steroids we were getting back into a routine and schedule with Maggie sleeping better at night. We long for consistency and normalcy. We are tired of medications getting in the way of normal development. Maggie doesn't deserve all that she has encountered.

We are thankful that Maggie's happy demeanor is back, however, her food intake and sleeping has not yet returned. We pray that she will begin to eat again without having any gastrointestinal problems and that she will sleep better. We also pray that the low dose chemo drugs will not give her any side effects.

Thank you all for your continued prayers and support. They are much appreciated.