Not such a good day

I'm having a really rough day today.  I've been spending a lot of time reading the blogs of our CDH families and learning their stories.  And i know their stories are not going to be Maddie's story, but there will be a lot of similarities.

While I was pregnant with Dillan, I couldn't wait for him to be born.  I just wanted to meet him and hug him and hold him.  I ached for my baby.

With Maddie, its totally different.  I just want to keep her inside of me - she is safe there and our lives can go on (more or less like normal) as long as I'm pregnant.  As much as I know she will be a blessing to all of us, I look to her birthday with dread.  It means having to leave my boys, our home, my job, our dog, my bed - my entire world, behind for a while so that I can become Maddie's entire world.  It means day after day of sitting there, helpless, jut hoping that my presence and my touch are enough to help her fight.

From what I've read, a lot (ok most) of CDH moms don't get to meet their baby in the first 24 hours.  if they are lucky, someone snapped a photo right after delivery that they can hold onto until then.  I read one story where mom and dad did not get to hold baby in their arms until 11 days after birth - and that was the shortest I've read so far.  While I plan to pump, I have no idea if she will ever be able to nurse - that is, once she starts eating without the help of a feeding tube.  many moms report not being able to talk to their babies - it overstimulates them and can be fatal.  pretty much everything i remember and cherish about my first few days of being dillan's mommy are going to be impossible as maddie's mommy and i just can't figure out how to do it differently. and i haven't even started to think about all of the challenges we will face after the first few days and weeks.

It just all feels so bleak right now.  Even the best stories are heartbreaking.  I guess I should be thankful I have time to prepare - I couldn't handle all of this today.  I can't even handle the thought of it today.