Monday, March 09, 2009

Update

I thought I might update you all on what's going on. I know that lots of you have been calling, sending emails, contacting us on Facebook etc etc and we've been pretty slack at responding.

I should say first that Teddy is fine.

I guess in response to our failure to communicate I might say that it's difficult to feel like talking about it (hence this post).  The update is:
  • Teddy has successfully moved from Neonatal ICU to the High Dependency Unit and now on to the Special Care Unit. Next stop will be home
  • Originally he needed some oxygen to support his lungs, but that stopped some time ago now (it's hard to remember how long ago, as the days become a bit mixed up)
  • Until recently Teddy had some difficulty keep his temperature within normal range, and he was in a humidcrib. This stage has passed as well and he's in a little open cot
  • He also couldn't suck, and therefore couldn't be fed through any normal method, hence he had a tube that led to his stomach to feed him through. We/the nurses would use a syringe loaded with breast milk to pump the milk into his stomach. At the moment this still happens sometimes
We're he's at now is that he needs to spend a 48 period getting a "sucking" feed every 4 hours, either from the breast or bottle (expressed breast milk in that case) and then he should be able to come home (on the 4 hourly feeds when he doesn't "suck" he gets intubated and feed with the syringe again). We're hoping that he will get to 48 hours sometime this week, but it could conceivably be a week or two yet.

Cass and I have (obviously) been talking about this a lot, and it's quite weird to have a child who has never once been in your house. Last Friday I finally had a chance to hold him for the first time - he was two weeks old. I can't begin to explain to people how crappy that is, particularly in the light of the way that Cass and I parent. For her part, Cass is able to feed him and spend a bit more time with him that I can, but it's in no way the same as having him home. Cass said to me today then when he eventually does come home she won't be putting him down for the next 2 years!

And, just a sample of our days:

James
- get up
- get Harry ready for pre-school (she loves pre-school, but still has difficulty separating from me when we get there)
- get on the bus and go to pre-school
- drop Harry off, usually amid a flood of tears and sadness (although after I've gone she loves the place)
- walk to work
- work all day (breaking some times to talk to someone about Teddy)
- get the bus to the hospital, where I usually meet Harry and Cass
- spend about 5 minutes with Teddy before Harry drags me off (not that I resent this, I completely understand)
- go home
- get dinner ready & eat it
- put Harry to bed
- fall asleep in front of old DVDs of "The West Wing" (as an aside, I'm starting to view the show as a management instruction tool, I'm not sure that's a good sign)
- go to bed far too late

Cass
- get up
- express breast milk
- get Harry ready for school
- say goodbye to Harry and James
- get showered and dressed
- go to hospital
- feed Teddy
- hang around making sure he's ok, all the while wishing he could come home
- get something to eat and drink
- feed Teddy
- hang around making sure he's ok, all the while wishing he could come home
- pick up Harry from school
- talk to little miss excitement for 2 hours about how awesome pre-school is
- go back to the hospital
- try to wrangle the family so that everyone gets a chance to hang with Teddy
- go home
- sort out dinner, Harry's bath
- get Harry into bed
- go back to the hospital
- feed Teddy
- hang around making sure he's ok, all the while wishing he could come home
- come home
- express breast milk
- go to bed far too late

So you can see, that doesn't leave all that much time for conversing with you all. But that doesn't mean that we don't appreciate everyone's love and support, and even though I've painted this all as pretty tragic, we are managing to get through it all.

7 comments:

Margaret said...

Hi Cass and Jim,

I sent an email and I didn't expect a reply (and haven't had one) so I hope it got to you ok. My first (now 18) was 6 weeks early and it is really hard, especially as about halfway through the pregnancy we'd decided that we'd cosleep when the baby was born.

He was 3 weeks old when he came home (I still consider it the hardest and most painful 3 weeks of my life) and we were able to do things the way we wanted. I would say it was 24-48 hours and it was like he'd never known any other way of doing things - cosleeping, no feeding schedule, etc. The months and years of the rest of his life with you doing the parenting your way will blot out anything you don't like about his situation now.

As I said in my email, I'm thinking of you all,

Margaret

Sif said...

Gosh, guys, it sounds so hard, I can't even imagine it :(. I really hope you get him home soon and can move on to the not-putting-him-down-for-two-years stage... Thinking of you constantly!

loz said...

Keeping you all in my heart and thoughts I hope Teddy is home with you all very soon so you can get started on some form of normal as your life as a family of 4.

Margaret aka mum8 said...

Just occurred to me that I might need to identify myself as mum8 rather than just Margaret so you won't be confused about who I am.

JennieMo said...

You know I love you all! And thanks for the update! My study is wrapped up on Friday. So if you need any help...in the form of house cleaning or entertaining little Miss...just call! SERIOUSLY!! Or if you need a nice veggo meal on wheels...let me know! I make a mean split pea soup! And even veggo chili beans! Though Teddy might not like the chili. Hugs! Jennie

Lara said...

Hugs. We couldn't hold Inigo for days, and it nearly killed us. I hope things get better soon - this really sucks.

Melissa said...

Oh guys, I hope he's home with you all soon. He's truly beautiful, there's something about that most recent photo, I keep coming back to look at it, I just want to pop a tiny kiss on that forehead.

West Wing is my most effective stress reliever. Even Joel (my husband) knows when things are rough, and I'm struggling, to encourage me to curl up in bed and watch some WW.