Improvement

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!

Love,
B & L & d

Post Heart-Cath

Since last night after the Heart Catheterization she has been very stable. Her heartrate continues to be solid and bloodpressure has been much better. She has only had very brief instances of O2 dropping, usually related to either being moved due to nursing care, or subtle and not so subtle movement of her own volition. (As our good friend Dr. Weinhouse says, "let her move, it tells me she's healthy!" - and if you don't know the backstory, we must tell you that sometime).

We sat with the specialist who performed the procedure and he was very pleased with how she tolerated. We also saw ultrasound film which showed the before and after of her Aorta. It was so releiving to actually see blood the improved bloodflow. In short, her blood is mixing very well. They no longer see a disparity between Pre and Post. Not only that but I've spoken enough doctors to know when they are feeling legitimately positive. Dr. Gowda was extremely proud of his performance which tells me that we can really trust that when he says the procedure was a success that it is indeed. I asked him if there was a possibility of the Aorta retracting to it's previous state and he said that while it may slightly, this was a long term procedure.

In some cases Catheterization is all that is necessary. In Delaney's heart there are a total of three defects and so for her, open heart surgery to repair the Coarc is still required. We just have more time now to allow herto heal from the initial trauma. Blood sugar and potassium and sodium are also improving. Her urine output is also improving but still needs some help. They are administering diuretics to assist her with elimination of fluid. Now that her circulation is improving the puffiness in her extremities and eyelids should be improving as well.

They are still treating her for NEC, however the most recent x-ray/ultrasound showed improvement. They also have changed from using suction for draining bile/matter from her stomach, to a passive drain and nothing has been coming out (just another indicator of improved function).

They are feeling more comfortable with weaning off support with blood pressure and heart function meds. Also, weaning the O2 since her lung functions have improved.

Today she was originally scheduled for an MRI, but because she was just under sedation yesterday they (and we agree) to postpone the MRI until possibly next week, although it may happen as soon as tomorrow. In it's place they are performing another EEG which the neonatologist feels would be a helpful diagnostic, and may inform us as to what urgency we may need for having an MRI done.

We are always keeping in our hearts and minds our personal experience that her reactivity has been so positive. Despite that fact they do want to rule out siezures so if this data will be helpful in that regard, so be it.

What we are focusing our prayers now is on the doctors and that they will be empowered with all of their knowledge and expertise to provide her as much calm and rest necessary to heal and prepare for surgery. Please share with us these intentions, as you have been with us every step of the way.

We hope that this message reaches you with peace, and happiness.

Love, B & L & d