Made of Gray

Frustration & Patience

201 Days in the NICUHolly D Gray8 Comments
Today I finally got to talk to the surgeon about Caleigh's progress and what the 'game' plan is. In a nut shell, we really need this new formula to work. This is it.....the last straw before surgeries some experimental, some a guessing game and others involving many serious life threatening outcomes including transplant. Caleigh's small intestines are too 'stretched' out from damage. This makes the motility poor and the passing of food almost at a snails pace. Hopefully, this formula will help the intestines soak up the nutrients like they should and get things moving along. Right now Caleigh is on continuous feeding for 3 hrs on and then 3 hrs off. 3ml an hr for 3 hours and then resting and digesting for 3 hrs all day and night. Prayers & faith are needed for this working.

We're king and queen of the positive police but sometimes it's hard to be optimistic all the time. The doctors asked for patience and say they understand our frustration, but do they? I think they have a frustration of not knowing, not being able to 'fix' it, but do they understand what it is like to be the mother and father of a baby that has never seen her nursery, never been held by most of her loved ones and never been outside on a warm sunny day? I'm not asking for them to understand but I would love for them to not mention the rollercoaster or long road ahead when we are feeling tired, weak and alone with our situation. That being said, we are so blessed to have a great team of doctors, surgeons and nurses that really do care about Caleigh and our family deeply. It's hard to console a family who has a baby in the NICU especially when things aren't going as well as they could and we completely understand that. So, Frustration is an understatement at this point, but Patience is our only choice.
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