Three to Four weeks

I asked the pediatrician today for his estimate of how much longer Maddy will need to be in NICU. He said probably another three to four weeks. I was pretty shocked - she's doing so great, she's not on any of the machines at all and is only on a feeding tube. She's meant to start oral stimulation any day now so that she can come off that as well and feed via her mouth instead. 

I think that the doctors are being super cautious with her. Maddy is the first case of Diastrophic Dysplasia that they've ever seen so they are taking their time to do all the relevant tests and examinations, which all take time. They decided to cancel the MRI and to do a CT scan instead. They think it will be better for Maddy. I don't mind what they do as long as they decide what she needs done and then do it so she can come home already...

Maddy's two weeks old today - that means that she'll likely spend her first 5-6 weeks in hospital. It also means that we've got another three to four weeks of going up to the hospital every day at the same time for those ridiculous visiting hours (unless it becomes possible to breastfeed directly, in which case I'm allowed at any time and don't have to honour the visiting hours). Another three to four weeks of our lives being on hold...

When Maddy was first born, the pediatrician mentioned that she may be in for two weeks. Now that those two weeks are over, I can't believe that we're probably not even half way through this NICU stay... 

Having a child in NICU is a weird thing... it's like having a baby but then not really having a baby. Our every day life is so similar to before Maddy was born, we have no newborn to feed every few hours, no little nappies to change, no stroller to push around as we go out. But my mind is on Maddy practically the entire day.

I know that in many ways, life will be "harder" once Maddy comes home. I know that she will be demanding (particularly if she's gotten used to being fed every 2 hours around the clock! That's not a schedule I relish). I know that we will have worries about her health too. But I feel as though our family is incomplete without her here... 

I've heard parents who have lost babies talking about how they feel like they have empty arms. They have gone through a pregnancy and have no child in the end, and that leaves an empty hole in their arms and heart. Women aren't meant to go through pregnancy and not have a child to hold in the end. I don't pretend to know the pain of losing a child - but I do know what it's like to feel that emptiness, like something very important is missing. 

I miss Maddy, and I don't want to go another three to four weeks before we can be together as a family for the first time...