"I know it sucks and it's kinda scary, but you're going to have to fight for her.  The doctors aren't going to do it.  It all lies with you."  Clara's provider told me this earlier with serious concern in her eyes, and I knew as she was saying it she was right.  She was agreeing with what I had just told her:  I plan to voice my concerns to Clara's pediatrician next week and convince him we need to find a plan of immediate action, even if it's within the same group of cardiologists.

I can't let this sit.

I know that if Clara was the cardiologist's daughter she wouldn't wait three months to find out if she was developing pulmonary hypertension--a condition that progressively gets worse and in which the life expectancy is just a handful of years.  I can't wait either.  I can't wait for it to progress to the point that it's irreversible.

It's so easy for a doctor to say, "I'll see you in three months."  And during that time the doctor doesn't worry.  She'll forget about us and pick up where she left off when we show back up; and if something is worse then she'll deal with it then.  That's the way it is in the medical world.  They can't worry about everyone.  They can't save everyone.

Clara smiles so big.  I hold her in front of me and her mouth opens and turns up, her eyes shrink into cute little half moons, and her cheeks lift in response.  She doesn't know.  There's a chance she could be getting very sick.  She doesn't know that her mommy's eyes are extra sparkly because she's fighting back tears every time she looks at her now.  She keeps smiling.

There is so much beauty with her.  Beauty that I have plans to live a long life witnessing.  Beauty that I don't mind if I'm the only one who sees it.  I don't mind if I don't have to share it.  But, I do mind it being taken from me.

Regarding my update last night, I guess I should have waited at least one more day to update.  Last night all was wonderful and my baby girl was doing so well.  Today I find out there could be new signs of trouble.

I'm angry.  I'm pissed.  But I have no one to be pissed at.  Who do I blame for this?  If I was a religious person the obvious answer would be God.  It's tempting to become religious just so I can lay that blame.

I haven't even cried yet.  I want to and I can feel it's in there, but I have to stay strong, or at least appear to stay strong.

Clara's platelet levels are high.  Normal is 150-450.  Her's are at 517.  But that's not the sign of trouble, because as of right now I have no idea what that means.  The hematologist wasn't in today.  She may want to see Clara back sooner than three months.  I guess they will call me if they do.

Our second appointment of the day was with the cardiologist.  That woman.  She makes me mad just because of who she is.  As she explains Clara's diagnosis to me she closes her eyes as if she's flying high on drugs.  It's annoying.  I don't know if she values Clara's life because of a question she asked me on our first visit.  I've dreaded seeing her again, and then she goes and delivers us bad news.

She begins by telling me the right side of Clara's heart is still slightly enlarged.  Still?  I'd never even heard this!  But she says it's nothing to worry about.  I have nothing to worry about.  And then she tells me the echo-cardiogram showed pressure from Clara's lungs.  This could be pulmonary hypertension developing.  I ask what that would mean and she replies it would be bad.  But 2 minutes ago she told me I have nothing to worry about--there's nothing to worry about.

But, the pulmonary hypertension is something to worry about.

She wants to see Clara back in three months for another echo-cardiogram.  If the pressure is still there then the next step would be to put a catheter in her legs and go up to her lungs to verify the high blood pressure in her lungs.  If it's verified they would go ahead and perform surgery to close the hole in Clara's heart, which, by the way, hasn't gotten any smaller.

The hole in her heart and the pulmonary hypertension are supposedly unrelated.  However, the hole makes the PH worse because of the extra blood it lets into her lungs which adds pressure to the already existing pressure (at least, that's the way I understand it).  Also, once they close the hole there's a chance the PH could go away.  If they are unrelated this doesn't make sense to me.

It also doesn't make sense to me that the right side of her heart is enlarged and from my super-fast-self-education via Google this afternoon, that is a symptom of pulmonary hypertension.  What if she already has it?  Why are we waiting three months to take care of this?  I'm not really down with that.

Clara's 4-month check-up is on the 10th.  I'm going to go over this with her pediatrician and maybe he can make things happen fast for us.

I have serious concerns about this.

Now, I have to go feed a fussy baby.

Things couldn't be more fantastic around here.  The babies are healthy, my oldest daughter is out of school for the summer, and I get to stay home and enjoy them all.  But I'm afraid my time with them is coming to an end as I've started looking for employment.  I'm more afraid of not finding employment.  As I sit now I might be able to stretch another six months out of my savings, but I don't want to cut it close.

Clara continues to grow and thrive.  She's awake more now.  I remember a couple of months ago I worried she was going to sleep her life away.  Now it gets difficult to catch a break.

Her provider has us working on neck and trunk exercises so she can hold her head up on her own.  But, Clara can hold her head up.  She just often chooses not to do so.  If I hold her high against my shoulder, she holds her head straight up to check her surroundings.  If I prop her in a chair to sit up, her head flops over.  I don't quite get it.  But, that's Clara.  She doesn't explain her choices to me.

I don't believe I've written here since Clara's last hematology appointment, so I should report that a month ago her platelet levels were entirely normal--even on the high end of normal.  With that our doctor visits are finally slowing down.  She hasn't seen any doctors since that appointment.  For us that's a big deal since for a while we were having a couple of visits a week.

She is being put on a quarterly schedule to check her platelets and make sure they plan to stay normal.  That new schedule kicks off at 10 am tomorrow, and then tomorrow afternoon she goes to the cardiologist so we can look in on the hole in her heart.  Both appointments are routine.  This little girl is strong.