Tuesday, November 5, 2013

Positive Changes

This morning John called Children's for an update right away and Grace had been stable through the night and they had not been able to insert the pic line. They had wanted it to use for more nutrition as right now she only gets sugar water and electrolytes through the IV's in her belly.

John has been with Grace for 4 days with no real significant change and decided he needed a break so he took the kids to their homeschool class then went to work for the morning. Mom and Dad took me down to Children's hospital. I texted John all throughout the day and soon he was wishing he had come down to see all of the improvement she had made.

First off, the Surfactant (click the word to learn what that is) they put into her lungs yesterday made what Dr. Khalil said, "massive improvements, massive" and tipped the scales in her favor. He was very optimistic. At one point today he told me that Grace "is motivated". The first thing we noticed was that she was moving around so much more and that was because they decreased Fentanyl that had sedated her. They want to get her more awake.

After lunch she was really awake rather just flailing around in her sleep and her eyes were open and looking around for about an hour. Oh my! That was so wonderful to see that newborn kind of dazed look where eyes go every direction. Of course that was at the end of our day and it made it much harder to leave. Which made me wonder what I'll do when she is awake and without the ventilator.

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She is on the ventilator but they were able to decrease the amount of oxygen they gave her. She had been given 100% when she arrived. Yesterday she was given 88% oxygen and today it was down to 47% when we arrived. As the day went on and they began to decrease medications they did have to go up again to 60% which made the doctors decide not to be quite as aggressive and let her get used to one before starting another.

Dr. Konduri (the world's best doctor for pulmonary hypertension) decided that Grace will not need a pic line inserted for nutrients because he doesn't think she will need them in a few days if they gradually get her off of things. He did begin lowering the nitrious oxide which is what has been opening her lungs. The Doctor is doing a study on Pulmonary Hypertension and Grace is now a part of that study. As I walked around today I saw a group of doctors all discussing and learning from the "top doctor".

Grace is slightly jaundiced but they aren't concerned about that right now, especially since she hasn't eaten yet.

Yesterday's ultrasound of her brain showed no blood clots. We are still waiting on results from the EEG on her brain but they need a top specialist to read that with all of the other variables Grace has going on in her body.

We wondered if Grace was truly a preemie being that she was so close to 36 weeks. Technically she is but they aren't really looking at the age so much as the symptoms she exhibited. And most of them were a result of such a traumatic birth. If she would have been born at this same gestation by a normal c-section most likely she would have been home with us.

The talk is that we may possibly hold her in the next day or two. John and I are looking forward to that day so much. And we are so thankful for the direction God is taking Grace. As my Dad said, just because we see improvement doesn't mean we sit back and say, okay, things have improved and be lax about praying. No, we will continue to lift little Gracie up to the Great Physician and praise Him for His goodness to us. So many things could have been different and we recognize that and our Thanksgiving this year will be all the sweeter for the realization of all we have been given in the past week. So overwhelming.

Thank You for outpouring of love on our family! We are also learning how the body of Christ should function, helping one another and then us being willing recipients of that help.

Love to you all,
Amy for the Masons

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