Today is by far the worst day of our lives. We went to the hospital early this morning...around 8:00am to make sure we were there for rounds. Dr. Spector (the cardiothoracic surgeon) and Dr. Chan (the nephralogist) met and discussed Hope's kidney function and how it will affect the outcome of her open heart surgery. They decided that because her kidney function has not gotten any better, they don't believe that surgery is the best solution. They don't believe that she would survive the surgery and if she did survive, her kidney function would be further compromised or she would not have any kidney function at all.
Jerry and I are heartbroken and devastated and not sure what to do right now. I have a call into the Cleveland Clinic to get another opinion, but I really don't expect their opinion will be any different. I guess I was deceiving myself into thinking Hope was in better condition and this came as a shock to both of us. We never thought her kidney function would be the determining factor in whether or not she would be able to get surgery, but after talking to the doctors it seems that the heart surgery would compromise her kidney function and she would probably not survive the surgery.
I know this comes as a shock to us and probably to everyone reading this blog. We have a huge decision to make (after we get another opinion) about when, where, how, etc...to let Hope go be with God. We are hoping we don't have to make this decision and are praying like crazy. If you are reading this blog, please pray with us that her kidney function gets better today. Prayer is all we have left and we are waiting for our miracle to happen.
Hope is beautiful! I am so sorry to hear this news about her kidney function. Your family is in my prayers. I hope you get better news and you can take her home. I know when we were in the hospital we wanted nothing more. Please accept a cyber hug from a fellow heart momma. I'm praying for you ...
ReplyDeleteDo they think maybe she would be able to start dialysis to help her kidneys? I am so sorry, Paula! I will continue praying for you guys!
ReplyDeletePaula, oh my goodness I am in tears now!!!
ReplyDeleteDon't give up! I wish I could promise you that things will be ok but I do not have super powers. I will continue praying for you and Hope. I wish I could be there to help you in any way possible. Sending hugs your way. Take care and thank you for keeping us posted. If you need to talk you know how to reach me.
Paula, I know you don't know me...but I'm the one who contacted you via BBC. I will continue to pray for your beautiful Hope and that her kidneys improve giving you more options. Just wanted you to know I was following your blog and praying for your little girl.
ReplyDeletePaula & Jerry, this news has just blown me away. Remember that God is still in control and he is still a God of miracles. Faith is the substance of things hoped for the evidence of things not seen... Prayer is the most powerful thing we have. Keep yourselves strong, Hope's a fighter. I love you all and all our prayers are with you. I'll see you soon. Love Kaitie and Kim.
ReplyDeletePraying...praying for strength, a miracle and mercy.
ReplyDeleteSending love to all of you.
I came across your blog as I, too, am expecting a baby with HLHS in December. Due to the particulars of our baby's diagnosis, there has been talk of not being able to go ahead with the Stage I/Norwood at birth and instead having to go with a fairly new (I gather) procedure that simply places a stent in the ductus arteriosis to keep it open until the baby is strong enough to withstand bypass and surgery. We are being seen at Boston Children's Hospital, and I hate to get involved when you are in good hands but I wanted to pass this along. This Plan B is inferior as it does nothing to address the decreased oxygen saturation levels, but I am thinking of you and your beautiful little Hope and wanted to pass along this info if it is at all helpful.
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