Tuesday, April 19, 2011

Delaney Update

Thank you all so much for checking on us, we feel very blessed to have such caring, friends, relatives, doctors, nurses, and staff helping us through this difficult time. We love you for all the support you have given us and helped to facilitate.

It's been a whirlwind the last 36 hours. Delaney is stable but very fragile right now. We've spent a lot of time with her today. She was the most responsive that she's been since Sunday. She responds to our voices, presence, and touch. Keep in mind that while the medical updates below are scary in part, we have become much more positive with every physical contact we've had with our precious little girl. We see glimpses of normal responses that we've come to expect from getting to know her this first month of life - which is so reassuring. She tries to speak but can't because of the vent, but her eyes are active and her little arms and legs move when we touch her. I know that she just wants us to pick her up and soothe her, but we can't right now. We give her all kinds of gentle strokes, and speak softly to her with all of our words of love and affection. We know she hears us and know that this is the kind of "medicine" for which she can't get enough.

Last night her color had returned and she seemed a bit more responsive despite the sedation, which has only improved. Her vitals have been getting better, although they are monitoring her O2 levels and they have had to decrease and increase support accordingly.

Last night they reported that the Prostiglandin had not reopended the vessel. While this is unlikely to occur, it has had an unexpected positive effect of opening the coarctation which has impoved blood pressure in her lower extremities and digestive system. She is also still receiving dopamine to maintain good heart function.

They are prescribing meds to prevent siezures, there have been some concerns since the EEG was done yesterday. According to the findings, her brain activity has been intermittent and his is the most scary finding, however infant EEGs are very diffcult to get as clear a picture as they can for adults. While the EEG was not normal we are focusing on what we are seeing as parents and trusting our instincts; which have been spot on from the start.

They also had an echo of her brain, for which we have not gotten a full report, however based on that report they plan to do an MRI tomorrow morning.

They are also taking precautions against Necrotizing Enterocolitis (NEC) and added another antibiotic. Although, surgery for this has been ruled out. The last blood count was of concern so they asked us to authorize a transfusion of plasma, and also give them permission to transfuse all blood products if necessary. They seem to be balancing the most parsimoniumous approach with truly covering all bases. So far all of the doctors and nurses have been fabulous, we feel she is well monitored and looked after. It's just very hard not to be able to hold her and have her with us.

The doctors feel she is improving however everything is a delicate balance. They are monitoring everything very closely, making subtle adjustments to meds as needed. We are staying at the Ronald McDonald house and glad we were able to sleep a bit last night. Although sleep right now is the least of our concerns, their facilities are amazing and the people who run the house are the most kindhearted and caring individuals. If you ever feel compelled to donate to charities we fully support you doing so to the Ronald McDonald House and Children's Hospital, these are very special organizations.

Love, Brian & Lindsay & Delaney

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