Wednesday, January 21, 2009

Preemie Parenting 101

I would love Lydia to be almost 3 months old. In preemie language, she is reaching a gestational age of 40 weeks at the end of this week, a chronological age of almost 3 months, and we will finally be able to talk in terms of adjusted age which starts once she hits her due date. Waiting for January 24 is somewhat bitter sweet. It reminds us of how far we have come, but it also reminds of all that we have been through, still have to go through, and what we missed out on in the last trimester of pregnancy. There are a lot of emotions that we deal with including feelings of guilt, frustration and a sense of exhaustion that we are still riding this preemie roller coaster that we know will last a little longer.

The preemie adjusted age is how we measure milestones. Whereas a typical newborn will start smiling socially at around 2 months, preemies start smiling at 2 months adjusted age. So it's almost like she is being born again! It's great, but it's also a pain. The, 'How old's your child?' question is a difficult one to answer. She looks like a newborn, acts like a newborn, but isn't a newborn. They say that preemies will start closing the gap around 2 - 3 years of age. I am hoping that I don't need to adjust her age for too long. That in a few years 24th January will be a distant memory and 2nd November will be what was always meant to be. Until then, it's a constant reminder of things not going quite right. Oh okay, I hear you. If it was meant to be, it will be. She came early for a reason. Be thankful that she's okay. We're lucky she didn't have any more problems. Yeah, I know, I hear you. And for those who have hotline training, and especially to those who don't, thanks for knowing when not to go there.

Now I don't want to come across like things aren't going well. They are. Do I feel lucky to have Lydia? Sure. Do we love her a lot and have fun? Sure. Do I want to leave her at all right now? No! Although I'm sure there will be a time when I will pawn her off to anyone that remotely shows interest! I am still absolutely optimistic about her progress, and feel lucky to have had her home longer than she was in the NICU (WHAT?!?! YES it's true!). Yet I am constantly reminded that she is not quite there yet. She is still dealing with apnea of prematurity - apnea and bradycardia episodes (where she stops breathing and/or her heart rate drops) - at 40 weeks. What does this mean? It means she still has to have a nasal cannula stuck up her nose (which, btw, is not nice as she likes to cry in disgust at anything that annoys her these days), as well as stay on the cardio-respiratory monitor. The episodes are supposed to decrease as time goes by... she had 1 on boxing day, one on the 8th.. and wait for it... FOUR in the past week. You what? Oh, THANKS textbooks for not telling us the 'episodes decreasing' is not always the case! In the grand scheme of things, it really just means that Lydia isn't quite ready to be off all the equipment yet. What surprised me and caught me off guard was that it took me right back to the NICU, '2 steps forward 3 steps back' feeling again. That there is that nagging feeling that it might be something else. Of course, I am the 'worst case scenario' girl and Gary is the 'everything will be fine' boy, so we balance each other out.

ANYWAY. It's the middle of the night. Lydia's been fed, Gary and the dogs are snoring. All is well. I am always scared, I am always worried, I am always cautious. And I also know that we are supported, we are loved, we have so much to look forward to. Thanks for listening ;)
Sonia: I love you minif!
Lydia: OMG, so NOT cool. Get off me.

This is not the best family pic, but it's the first one. And if you look closely you can see that Lydia has my hair and nose. She has Gary's cheeks and chin! That's about all we can make out for right now ;)

Lydia was making a fish face which is why I am doing the same. Except she fooled me by not looking at the camera... so I look like I'm making this face just for kicks!

Haha she looks like a mini baboushka doll. WAKE UP you lazy bum!


Cathy said...

What can I say? I love you and Lydia and Gary and even Toffee and Chilli!
If any of us do try that false reassurance or cheering up thing--bad Hotline skill person--just give us a kick.
We can't fix it or change it but we are always here for you.
When Lydia is in that teenage-whatever face - period, you can always use this as the "guilt" card thing. Maybe that is not in the Good Parenting 101 book.
Hugs to all of you.

April said...

I love how real you are about your thoughts and struggles and etc. Very touching.