Again and again and again.

We will see Cardiology again tomorrow at 3pm.  I have a feeling this is another one of many visits over the next few weeks.  We will be repeating the chest x-ray we had last Monday at the pediatrician’s office to see if some of the fluid that had collected in Dolly’s lungs has resolved.  She is currently taking a diuretic to help her pee it out.  We know she’s been doing that because she soaks through a diaper completely in about two hours.  We don’t know if it’s enough though.

Without a significant improvement in the amount of fluid in her lungs, anesthesia will be even more dangerous for her then it would be regularly.  If we find out that she has improved, we will schedule her cardiac catheterization.  If we find out she hasn’t improved, well, let’s not go there, shall we.  It’s 11 o’clock at night, and I’m already having enough trouble sleeping.

Day-to-day, I try to focus on the positive.  Dolly has learned to feed herself a little, she stuck a fig newton in her mouth yesterday and worked on a cracker today.  She is more smiley each and every day.  She is constantly learning new baby signs, and she is bonding with us really well.  Her brothers and sisters adore her, and she is starting to warm to them.  I love her a little more and more each day.  Honestly, I didn’t think that was possibly.

In the long term, I worry about that all being ripped away.  It’s a little lonely feeling this way too.  FPD is bonding with her, but he also wasn’t with her in China.  She isn’t as bonded to him, so when I’m around she would much prefer to be held by me.  I think it makes all this a little less real to him.  She isn’t quite  his yet the way she is mine.  

This is where marriages are made or broken by a child’s chronic illness.  I can see how that happens a little better now.  I can also see the beginnings of why this is so hard on siblings.  We’ve had three kids down with some sort of virus this week.  At a time they should just be worrying about getting better, we’re all panicked that Dolly will get it.  Dolly’s health adds an extra layer of anxiety…to everything.

All I can do is work harder to make sure that none of this breaks us.  The problem right now is, I don’t know how much more work I can do.  I’m spent.  I remember this feeling with Bubbly, and with the Duo.  I work so hard to be everything to everyone, to make the adjustment smoother, that I lose a little of myself.  Dolly’s health has added an extra layer to that loss.  I need to eat a decent meal.  I need a nap.  Heck, I could REALLY use a shower.

Even though I’ve done this again, and again, and again, it gets me every time.

who needs a fork stuck in her.  She’s done.      

One thought on “Again and again and again.

  1. Just remember that you are the perfect parents for this little girl. You have already given her more in the short time you have had her. I don’t pretend to k ow what you are going through but wish I could have been in china to wrap my arms around you and hug you. We are praying for good changes

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