Friday, April 22, 2011


She had a quiet night and uneventful for a change!

This morning the EEG machine has been taken off so we will actually be able to hold her in a few minutes! We can't put into words how much this means to us.

We received an update from cardiology and after consulting with the surgeons (Walters & Delius), if her MRI looks good, and her NEC coninues to improve, Delaney is expected to have her operation next Thursday. Her blood pressure is still better, but does still show a discrepancy in upper and lower. This is still from the Coarc, which was relieved from the Cath but not cured.

Her blood count is low today, so she will be receiving a boost through transfusion to help her hemoglobin and platelets. Her O2 sats have remained in the high 90's which is even better than yesterday. However the boost in hemoglobin will only help.

Her urine oupit has been helped along with diuretics and her puffiness has diminished considerably. Related to that we learned that she has gained weight since being here at Children's which initially we were told that she would likely lose weight. Upon clarification this weight gain is due to increased fluids and her sedation makes it more difficult for her to eliminate. As a result, we will actually see her lose some weight in the near future which is a good thing.

Yesterday we had a wonderful conference with Dr. Sood. She wanted to touch base with is became she was aware of our anxiety regarding many of the procedures that they have been wanting to do. She gave us some very encouraging news that they as a staff collaborate and communicate regularly on each of these diagnostic measures. Further, they never allow one "test" to determine intervention. In addition to that, one of the conversations they have routinely is to determine whether a baby will benefit from intervention...she has felt that without reservation that Delaney will absolutely improve from everything that they have decided to do.

In addition to that, we learned that the head of neurology at CH is the most well regarded in the country (if not the world). He regularly speaks at Harvard and many universities around the world. Dr. Sood reassured us that this is the best hospital she could possibly be at for her conditions. We beleive that, and the pride that all of our doctors take in their work is evident and appreciated.

There are a lot of days between now and her surgery, but we are hopeful that the stability she has achieved over the last 24 hours will maintain and she will be that much stronger and prepared.

She's about to go for her MRI, please pray for a good result!

B & L & d

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