Maria had two difficult feeds this evening and afternoon. She completely pooped out before her feeds ended, and more disturbingly, she alarmed very frequently while eating.
The nurse removed her NG tube (feeding tube) at 4pm today. She looked so cute with a tube and tape-free face! I took some photos, but decided not to post them yet, as we are both convinced that she'll be back on her feeding tube and probably her cannula by morning.
We don't know why she is slowing down with bottle feeding; she was doing so well! We are concerned about her, of course. We don't want her to be losing oxygen and dropping her heart rate so often. We certainly don't want her to be in pain or discomfort. Will she ever become independent???
(that was a hypothetical question, we're not looking for anyone to answer it)
We also struggle with this setback personally. Each hurdle she crosses is a step closer to home in our mind, and therefore, we find it very easy to allow our expectations to rise too high. We thought that once she mastered her bottles, she'd have it mastered permanently. That's obviously not the case.
Thanks all for your love and support. We are trying to remember what Dr. Deacon Pregler said about Maria's setbacks...this time of growing in patience will teach us innumerable lessons about parenthood (and for Joe, lessons about being a good physician, too). Fight the good fight, right??
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I know that setbacks are hard and to keep moving forward and pressing on can be very tiring. Just dealing with sick kids in general is draining for a week, let along, what you guys are doing constantly and now going on two months.
ReplyDeleteHang in there. Maria is a fighter and has been doing very well. God is the one in control of this situation. He is the source of your strength and peace, as well as Maria's. Cast all your cares on Him, for He cares for you.
Know that we are praying for you all to have strength, to be upbeat, healthy and know God's love and peace.
love,
Christy