It is a good thing that my tears don't compromise my strength because tonight has been a night full of them.
We finally got to see a doctor. Not the doctor we wanted to see, but a doctor with some information. My mind is still reeling from what she said. It was so surreal to watch her mouth move and know that what she was saying was so important. I just couldn't process it all. Or so I thought. I really had been listening to her. I knew what she was saying. I just didn't want to hear it.
While she said she wasn't part of the "team" for the babies, she had "heard" that we wanted to talk to a doctor. (Wonder what gave her that idea? Suppose it was the MANY calls all day or the I want to talk to a doctor speech we gave when we got there?) Both boys have hydrocephalus. The neurosurgeon (who we have yet to talk to) has decided that they will have a reservoir put into their heads so they don't have to have needles inserted repeatedly in their heads to relieve the pressure. Then, when they get to 2 kilos (which they both are already so she must be wrong with this number) they will put in shunts.
Shunts. That scary word. It gives me chills.
She gives us all this second hand info and proceeds to take her two little med school flunkies (sorry to those of you in the medical field--I am just not in a good place right now) a few feet away and talks about the other babies in the room. "So and so has had this happen...I would not try that anymore, it is useless. Go to (insert something awful) and then do (insert something even worse). You guys should be there when they do that. It is a fascinating procedure." Blah, blah, blah.
They weren't that far from us. I could hear it all. And it broke my heart to know that they talked about my babies that way, too.
I just started crying and couldn't stop.
I cried all the way home and still cry when I think about it. The guilt is back big time. If only...
I want to talk to the neurosurgeon.
I want all of this to go away and for the babies to be healthy.
What if they aren't? What if they have permanent damage because I failed them? What if, what if...
The evening had started off so well, too. I got to hold both babies at the same time. It was heaven. They were so comfortable there together. Then the nurses put little Santa hats and Christmas socks on them and took our first family picture. It was so nice...
and then back to reality at a hospital I hate with doctors that I am beginning to hate even more.
I am so sorry! I wish I had some words to help you and your family or to make this easier for you. You are all in my prayers.
ReplyDeleteDear Stacie,
ReplyDeleteI am so sorry this is so hard! Here's a little comfort for you: Little babies are remarkably resilient. To me, it seems like Shawn and Jason are way out of the woods, compared to what my born-at-24-weeks nieces went through, being born a pound each. I know going through this is horribly brutal and it stresses you beyond what you thought were your limits. And the freakin doctors aren't helping!
I am praying for you.
Best wishes, Anne
Stacie may you be blessed with comfort and a good nights sleep soon.
ReplyDeleteI can't imagine how scary and surreal this must all be for you.
I do know someone who has a TOTALLY normal, and quite smart grown child who went through exactly what you are talking about.
Brain bleed and hydrocephalus. They put shunts in...he grew. He struggled those first few years to catch up and now...he's married and expecting his first baby.
Have faith and continue being strong.
stacie- you are always in my thoughts and prayers. like my doctor said yesterday- those little ones are very resilient. your family is beautiful. there is nothing more you could have done- remember that!!!!! just keep holding your boys and sending them love.
ReplyDeleteThis post really made me mad. I understand (too well, unfortunately) why doctors behave like that, but it is completely UNACCEPTABLE to pull that crap in front of family. Who in the world wants to hear medical professionals talking about their loved ones like some kind of science experiment?
ReplyDeleteI'm sorry. You have enough on your plate without listening to me rant.
I'm so glad you got to hold them, especially at the same time. It'll be good practice for when they come home.
Don't let the doctors get to you, stacie. You just need to find the one doctor who knows exactly what the plan is and then get all the info you need.
Hugs coming your way.
I wish you didn't feel like you have failed your boys. Love never fails. You did everything you were supposed to do, whenever the doctors told you to. I don't see that as failure. You were prepared to spend twenty weeks in bed for your boys, it is far from anyone's fault that it was only eight. That being said, eight weeks is a long time, yet you did so, gladly. As long as you love your boys you will never fail them. I think that is what motherhood is really all about.
ReplyDeleteI think a good cry is very theraputic. I hope tomorrow is a much better day.