Thanks so much to everyone for your collective good will, as Laura put it. You have been amazing, and we really appreciate all the positive thoughts, care, and concern being sent our way.
I don't have any new information to report, but after speaking to the geneticist this morning (who also happened to work with Julian), we are feeling less hopeful than we did over the weekend. Although we were initially told that our chances for recurrence were only 2-3% because genetic disorders were ruled out in Julian's case, we were also cautioned that sometimes the only way to know for sure if something is genetic is if it happens again. It sounds like if the doctors were betting money on it, they would say that this is one of those rare cases. If so, that means that our chances of recurrence are more like 1 in 4, which doesn't bode well for our chances of raising a healthy biological child. That, and the idea of interrupting this pregnancy are two of the worst things I could ever have imagined, and here they are staring us in the face.
The only thing we can do right now is wait and hope, but hope seems to fade the more we think things over and talk to the doctors. I started the digoxin, which I seem to be tolerating okay, minus the nausea, diarrhea, and headaches (which may also be caused by my emotional state), and on Wednesday, a team of 50 doctors will be reviewing our case. We go back on Friday for a follow-up ultrasound, fetal echo, and EKG for me to make sure the medication hasn't had any ill effects on my heart.
Stay tuned.
17 comments:
i will be waiting to hear how things go friday and hoping for the best for all of you until then.
I couldn't stop thinking of you all weekend. I'm so sorry you're going through this, and I will be hoping so hard that you get some more reassuring news on Friday.
I'm praying for you and your family this very moment. Lots and lots of hugs.
Alysse I feel ill just thinking about what you are going through. I am so sorry that you are under this stress and that Natalie's health is in question. You are not far from my thoughts.
Christie
Alysse, I have been praying for you and thinking of you everyday. Hoping for the best on Friday.
Sending you strength and the hope that Friday will bring you some reassurance.
I am thinking about you and Natalie, hoping and praying for you. Sending many (((((((hugs))))))
dear alysse, hoping that friday will bring you some glimmer of hope and the answers you need. sending you all my love and support. you are always in my thoughts. love, jen
I am crossing all available appendages and hoping hoping hoping that the odds will fall in your favor. And how crazy/scary/frustrating/awful is it that this is what we're talking about here, sheer probabilities?!? In that sense, I am sending you all the luck I can find. Strength, patience, and hope to you, Robert, and Natalie (hang in there wee one).
Love,
Pam
Heart trying not to break while hoping still for that miracle.
A 1 in 4 chance of recurrence is indeed a scary thing to face - I know because I face it, with a quite different genetic issue. I hope that everything works out.
Try taking the Digoxin with pineapple juice. I had to take it for several weeks before my son's birth, and for whatever reason, it seemed to cut the nausea and diarrhea down to a tolerable level.
Lots of good will and well wishes sent your way.
i'm thinking of you and will be pulling for you tomorrow. i'm hoping for a miracle for you and natalie!
Just wanted you to know I was thinking of you today.
Thinking of you/praying for you and Natalie today...
Oh Alyse,
My heart is so heavy for you. I am thinking of you and want you to know that we are all here for you. I too am praying for a miracle.
Rach
Alyse: I just want to add my voice to the chorus of prayers and good thoughts that are being sent your way. You have such a beautiful soul and I am so sorry you have to deal with this.
Post a Comment