Liviana loved her swaddle bath, that is, until I got her out, at which point she protested loudly. She was completely content and now also clean.
Nursing is continuing to go well and the nurse today explained the "pathway" to discharge as it relates to feeding. Yes, that is right, I said "discharge". I am hoping we can work up to this weekend at which point I will nurse her most of the feedings if possible so we can get her home. We of course have a lot of "going home" issues to discuss and long-term health issues but the eating is the only thing still keeping her in the hospital.
Dr. Cusick, our wonderful surgeon talked with me this morning. He always stops by and checks on her even if he is not on rounds. Today he talked to me about malrotated (I edited this, my tired brain mistakenly said malpositioned) bowels and twisted bowels. Basically, all CDH babies have malrotated bowels. This is not necessarily an issue unless they become twisted. When surgery is done with the open surgery method the scar tissue helps adhere the bowels and keep them from twisting. Because Liviana's surgery was done laproscopically she does not have the benefit of the scar tissue. Dr. C. consulted some other surgeons in Portland and elsewhere about whether they were doing the abdominal surgery as a preventative measure against the twisted bowel following laproscopic hernia repair. They are not. He agreed with their thoughts and will not do it, as it is only preventative and it has a 15% rate of complication, which he is not comfortable with. I also shudder at the thought of Liviana having another surgery now. I greatly appreciate Dr. Cusick and his partners exploring the options that are best for our little girl. I also found out today that he goes down to the Dominican Republic each year and performs surgeries on children for free. His goodness extends well beyond the hospital.
Liviana has her repeat echo tomorrow morning. I am so anxious for the results. I hope and pray that her pulmonary pressures have decreased. If they have not they will discuss the options including Sildenafil.
I have given Dr. Kerr the heads up that I want to discuss the Ventricular Septal Defect and Hemivertebrae issues this week. Of couse I will share what I discuss with you all :).
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2 comments:
I love the pictures, Amy! She is a doll!
What a fantastic doctor you have found at that hospital.
Thinking of you as always.
Amy, she actually looks like she is growing. She looks stronger in these pictures, somewhat less fragile. She is gorgeous!
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