Today was amazing. As a complete suprise to me, Riker was allowed to have her central line capped and was able to leave the hospital for several hours :) I was able to take her out in a stroller and have a "normal" day - just her and I. We took a long walk in the very old scenic part of Portland that surrounds the hospital. Then we stopped a lovely cafe and had lunch! We ended the day laying on a blanket enjoying the breeze in the shade. That is until it started to rain!
When we got back to her room, we played on the floor and used to her bumbo so that she could sit up for a bit. The nurses and I decided to put her in an exersaucer, too! She's not quite ready but we packed her in with blankets and she did very well. Our days in the hospital are feeling more and more like days at home would. This place is slowly becoming our home.
Obvioulsy, she continues to do well. She has been completely taken off her TPN and is getting all of her nutrition through breast milk. I've done enough pre and post weights so they are allowing me to feed her "ad lib" while I'm here. When I'm not here, she's been getting 80 ccs (Almost 3 oz) per hour while she's awake and at night she's getting 10 ccs per hour countious (1 oz every 3 hours) She's been tolerating this so we'll be slowly increasing her to 100 ccs (just over 3 oz) every 3 hours during the day and 20 ccs (almost an oz) continuous at night. We are finally over the food slump! Back to her normal self, Riker nursed every half an hour from 7-10pm :) It's nice to have my baby back.
There are only 2 more days left that she'll be getting chemo for this cycle and she's handling it amazingly. After that, we just need to wait to see how quickly her white blood cells take to recover. When they do recover, we start all over again.
For now, we take each day, one at a time. I'm getting better at appreciating today and not worrying so much about tomorrow. Tomorrow, Valentine will come to the hospital to visit. It is these moments that I really cherish - when I can be with both my girls at the same time.
I think that that is awesome that she is doing so well! Me daughter is the same age as Riker, And my son is also two years old just like Valentine. So I could not imagine how you are doing this! I have been praying for you and your family and hope that your life can get back to as normal as possible soon. If you have access to a jumperoo instead of an exersaucer, they are a little bit easier for little babies to sit in without the need for support.I used to work in the infant room at a child care center, and I preferred the jumperoo much better. Good luck with everything and I will continue to pray!=) Stacie Daley, A friend of Amanda knight.=)
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