I woke up this morning feeling overwhelmed at the thought of spending another day at the hospital. I'm tired of being there. We're all tired of being there. Of course I want to be with our girl, but that place just sucks the life out of us sometimes, especially when we're not sure how much longer we'll be there.
At the same time I felt an incredible tug and had to get down there right away. I needed to know what the CT said, I needed to talk with her surgeon. It was great - Aislinn woke up as soon as I arrived and I got to hold her most of the morning and even rock her to sleep. Her surgeon came in shortly after I arrived (great timing) and let me know that her CT looked great. There is only a very small air pocket left - small enough that he is confident doing the surgery at 8:00 Saturday morning! Praise the Lord! We're moving forward! I also talked with a couple other doctors and they felt good about her progress.
Her doctors also resumed weaning the meds. Even though they have it at a very conservative pace, I think it was a little too fast today. Just a mama's perspective. Poor baby girl wasn't feeling very well today and I just hate to see her so miserable.
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| we had good playtime today! she is looking more alert each day |
-a good CT and the go ahead for surgery tomorrow!!!
-the pediatric endocrinologist said her thyroid tests look good. There is no evidence of a long term problem. He said 5 out of 6 hormones look good. The cortisol is still low, but she is being treated for that
-it is so wonderful to see Aislinn's personality and preferences come through. She likes the same things she used to like (binky, snuggly owl, kisses on her hand and belly) and is calmed by the same things (rocking, binky, singing). It is such a relief to see these little things come back and to have greater hope that she will be back to normal in no time.
Prayers
-please Pray for a successful surgery tomorrow morning. Pray against infection, fever and any malfunctions of the new shunt that is being internalized. Pray that her body will lovingly accept the shunt :) and that she will have no problems with the shunt for many, many, many years!
-please Pray for God's comfort and healing as she recovers from the surgery and continues through the withdrawal process
-Ronan is having a tough time lately. He needs prayers as well for comfort, order and peace in his sweet little heart. This has been a very long ordeal for him and we still have a ways to go.
Thank you!
(and thank you to those who have left encouraging comments. We really appreciate them, though I have not had the chance to respond individually!)
3 comments:
Good girl, Aislinn! Keep up the steps to healing - God is holding your hand :)
Nikki, you CAN do this. The uncertainty is a bear, but hang in there. I asked my sister in law (Daniel's mom) to pray for you specifically - she has just gone through feelings at the hospital with Daniel and her prayers are extra special. She knows what you're going through. So now you've got Chicago AND Virginia in your corner.
Love you guys, Erin & Tim
Hi Nikki...this is Amber (Edwards) Petersen and I just found out about your beautiful little daughter via Facebook- my heart breaks to learn about what all of you are going through. Yet, I'm so inspired by how strong you are and to see that you have an unshakable faith that is helping you to see the light. It so hard for me to understand why we have to go through such difficult times in life, but I do know that they help us to realize many good things like what you have already mentioned in your recent posts. These times also help to mold us into more empathetic, compassionate, and courageous people who can help others when they go through their battles. I admire these qualities in you! When this is all over, I'm sure that the four of you will look back on this experience with the realization that it helped you to be thankful for the goodness in life (even in its most difficult times), as well as knowing how much you are loved. I have no doubt this time will turn you into an even stronger family than you already are. Just know that "this too, shall pass," and that you are never alone. Hang in there, mama! You are a beautiful person on the inside and out and keep on shining. You have people from all over thinking and praying for your girl! Sending love to you and your family from NC...xoxo
Thank you for your prayers and encouragement! It is amazing to think about how many people are praying over us and from all over the world!
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