Saturday, March 23, 2013

Quick Updates

I have a whole lot that I want to say that's more thoughtful then what I'm going to write here, but I honestly just don't have the time.  The last time I opened the computer was the last time I posted, which has been really hard for me because I have a lot I want to talk about right now and just no time to do it. Anyway, here are some quick updates and thoughts.

- Thank you!  Seriously, to all of you who have been commenting, thank you.  Why can't we all be friends in real life?  The things that have been said recently are like salve to my battered soul.  Maybe that sounds dramatic, but that's how I feel and I'm very thankful to be able to come here and find such support.  You're all amazing.

- Birdie has been doing well.  It seems like the medicine is still working and she's growing and changing.  I am still nervous for sure, I still check her heart a lot, and I feel sad a lot thinking about what she's been through in the first weeks of her life, but I'm adjusting to it all I think.  I've been struggling a bit lately just because I feel like I'm behind with her.  By the time we came home from the hospital, Birdie was already three weeks old, but I had no idea what she was like.  Her first two weeks, when I thought I was figuring her out, weren't really her, and the hospital, well that was just a blur.  So by the time I actually got to start getting to know her, she was three weeks old but in my head she was much younger.  I keep forgetting how old she is and can't figure out what she should be doing, or really what I should be doing.  You'd think I'd have a better idea the second time around, but I don't.  All I can do at this point is just go with my gut, in lots of ways.  I've tried to convince myself that my instincts led me to get Birdie to the hospital when she was sick the first time, so instead of worrying all the time I just need to trust that those instincts will kick in again if need be.  I also am trying to just trust my gut day to day.  I may not have her figured out yet, but I just love her so much, I'm just trying to start from that and do my best.

- I still have no real idea what I'm doing as a parent of two.  Bean is, amazing.  She just has so much patience and love for Birdie.  I am in awe of her most of the time.  Usually I'm the one who gets frustrated that I can't spend more time doing the things I want to, or used to be able to do with her.  She on the other hand seems to be adapting very well to the situation at hand.  So I try to use her as my barometer instead of myself.  If she's okay then I'm okay.  I just try to give her every free moment that I can and make sure that she gets my undivided attention when I can give it and hopefully feels all the love that I have for her.  I'm hoping as Birdie gets a little older and her schedule maybe gets more predictable, it will be easier to balance all of this.  Right now I have good days and not so good days.

- The not so good days are wearing on me a bit.  I feel more of the social isolation of a new mom then I did with Bean.  There are days when I don't have a free moment, not even to shower, from when I get up in the morning until when I go to bed at night.  Don't get me wrong, I wouldn't trade it for the world, but I'd be lying if I didn't admit that I miss having some amount of time to myself.  I need a few moments to recharge and I don't count washing dishes or doing laundry as recharging.  I need time to talk to the people I care about, get my thoughts and ideas written down here, or just stare at the tv or read a book.

- There are times when I think about finding a therapist or counselor or something.  I've thought about this a lot in the past as well.  There's a lot about infertility that I haven't recovered from and while there are a lot of things that I wouldn't change, there are ways that infertility has changed me that I know I need to deal with. Besides all of you, there isn't really anyone in my life I feel like I can work through that with.  So I've looked into therapists with a background in infertility.  After what happened with Birdie, I feel like I could use some help working through that too.  Sometimes I feel like I have some small version of PTSD.  Like last weekend when we went on our first outing (doctors appointments don't count) as a family since Birdie was born.  Birdie has done really well in the car up until that day, but she wasn't happy then.  She was just crying and inconsolable.  I had to sit in the car with my eyes closed for awhile working to mentally keep myself in the present because all I could think about was that day in the ER, when she was crying a very similar cry, and all the things that were happening at that moment.  Obviously I don't have time to follow through on this now, but I kind of wish I did.  I feel like it could be really helpful.

Well, so much for my quick updates.  Clearly I need to find more time for this because as soon as I start, it all just comes pouring out.  So hopefully life will allow me to come back soon.  I'm trying to keep up with everyone else's blogs and comment as much as I can.  Please know that I'm thinking of all of you even if I don't manage to though!

Tuesday, March 12, 2013

I'm a worrier

Thank you all for the words of support.  I wanted to write back to each of you, but I literally think this is the first time I've had my computer open since we've been home.  I still plan to try.  I should be napping as it's also one of the first days since hubby went back to work that both of the girls are sleeping at the same time, but I have too much bouncing around in my head that wants to come out.

Birdie has been doing great.  She went to the pediatrician and the cardiologist last week and they both said she's doing really well.  The cardiologist warned us that she may have a relapse at some point and experience SVT again.  She may need to be re-hospitalized to figure out her meds.  So I know it's possible and I hopefully won't be as scared next time because I know what's happening.

I can't help but worry though.  I'm a worrier by nature, when I have nothing to worry about.  So now that I have something to worry about, watch out.  I check Birdies heart multiple times every day.  If she's too sleepy, not eating as much as I think she should, if she feels cold, if she's overly fussy.  Can you see how this could lead to a lot of checking since she's an infant and this essentially describes every infant out there at some point during a day?  I worry that she seems smaller then Bean was.  That maybe she didn't grow as much in my belly because she was fighting this.  I worry about going back in the hospital because I feel like we can't keep asking my dear friend to stay with Bean and hubby has to work.  I don't know what we'll do if I have to go back to the hospital with Birdie for an extended period of time.  I worry about Bean.  The cardiologist suggested we get her tested too, since this is an inherited disorder.  On top of all that, I'm struggling with the reality of having two little ones.  Yesterday Birdie had an especially fussy day.  Bean was incredible and didn't seem to mind at all that she had my attention in very small bits and pieces, but I felt like I was flailing.  Like everyone else has this mama thing figured out and I'm struggling.

I could go on and on.  I'm exhausted both mentally and physically and I haven't really had a chance to let my guard down.  At the hospital I felt like we were in a fish bowl.  Our room had a window so that the nurses could keep an eye on Birdie at all times.  There were moments when I wanted to just sob because I was scared or worried or just tired.  But I didn't.  I leaked tears down my face a lot.  Especially when they were trying yet again to get an IV in Birdie.  But I never just let down and sobbed, which is out of character for me.  I remember sobbing once when I got in a fender bender, but I didn't this time.

I know part of the reason was because I was trying really hard to be strong for Birdie.  If anyone had the right to cry it was her.  She deserved all the sympathy and compassion.  The only moments I felt like I could have really let loose and let it all out were when I was out of the PICU, which didn't happen very often.  I would go for a walk occasionally while hubby was there and at those moments I thought I could release some of my emotions.  Then I would walk down the hall and pass another room on the floor.  There was a little baby in that room too.  I never saw any other people in the room besides a nurse who was there all the time.  This baby was hooked up to every machine you could imagine.  I never saw it move.  I could only imagine the horrible things that might have happened or what that babies family must be feeling.  And then I thought of Birdie.  Flailing and screaming as they put in IV's.  Happily snuggling and nursing whenever she got the chance.  She was going to be okay.  It was scary yes, and I live my life by the clock now, always scared I'm going to somehow miss a dose of her medicine, but who cares.  She's going to be okay.  I can't say that about the other baby.

In the hospital, that was my reality check.  Things could be infinitely worse.  Now that we're home though I think about that baby a lot and it's more then that.  You always know that bad things can happen to kids and babies.  Being part of this community, you learn it very quickly.  But actually seeing it.  Seeing a little baby hooked up to all those machines, that brings it home.  That's someones baby, and the terrifying part, is that it could just as easily be mine.  So now I don't just worry about our current reality, in the quiet moments when my brain settles down I worry about the bigger picture.  The scarier world that's out there.  Maybe that's why I fixate on the clock and on Birdies current body temperature.  Because those are things I can do something about.  I can give her her medicine.  I can check her heart. I can make sure I know everything there is to know about her condition and do everything in my power to have it make the smallest impact on her life as possible.  But it's made a huge impact on me.  I am incredibly grateful and always will be for the fact that what she has is very treatable and that she's going to be just fine.  I've also seen more of the reality of the world though, and it makes me worry and hold my babies that much closer, wishing there was a way that my arms could protect them from everything.