Saturday, May 8, 2010

Weekend Update.

Because when else is there time to update?

Ah, we do love drama around here lately, don't we? 2010 has been nuts, just plain freakin' NUTS and I would love to tell it to dial it back a bit, por favor!
An update for friends & family, or perhaps to explain to people at work why I don't seem to be quite right in the head:

  • Bob is 99% officially out of work for next year. He may be able to find something, he's looking, but he's also entertaining the stay-at-home-dad-who-gigs-on-the-side possibility.
  • Maddie is healthy (Thank you, God) and a fabulous, precocious handful. Preschool is set for next year, and we are thrilled. Shout out to Aunt Cyndee who saved our butts long after enrollments were done at most schools around here, when all the sudden the possibility of Miss M going to "Daddy's Work Preschool" was gone. I visited for a whole session with the eyes of a mother and a teacher, and I loved what I saw. We are psyched about Our Father's House.
  • My school district is in crisis mode, but what school district in this state isn't? What school district isn't, period? Here's where I stand: What do we teach the children? We have to look out for each other. Especially the kids first, principles be damed. That's "p-l-e-s", not "p-a-l-s". I have no problem with any of my principals, for the record. I think we should ride out this DONKEY of a governor and keep whoever we can on staff, for the good of them, their families, and the kids of our district. Did somebody say something about 34 in a classroom? Please guys. It's not about money anymore.
  • Ellie has had a bad cold, hasn't been eating (at least not from a bottle, and at least not well), and life is pretty much about how to get her to eat enough to stay hydrated and stay out of the hospital.
  • Oh yeah, and Thursday we found out that that harmless heart murmur that we knew was caused by a patent ductus arteriosus is actually causing her congestive heart failure.
When people asked me yesterday "How's the baby?" I responded: "Do you want the long answer or the short answer?"

Short answer: "She's sick, but she'll be fine."

Long answer: On top of the reflux and a nasty cold, she has a patent ductus arteriosus, or PDA. This is usually no big deal. It's a little tube that is present before babies are born so that they can get oxygenated blood from their mothers. It's supposed to close, but many times it doesn't. This doesn't usually cause a problem and it usually closes by itself in a few weeks or months anyway. In Ellie it seems to have no intention of closing. A lot of blood is flowing across it and that is causing her heart to be flooded with extra blood. This causes her heart to be significantly enlarged, and have to work two to three times harder than it should. She therefore doesn't feel well. She breathes fast, she tires very easily, she sleeps excessively, and she doesn't eat well or gain weight well. Except for the lethargy, these have all been treated as signs of severe reflux (making my previous blog post...well, not WRONG, because she definitely refluxes. Hello puke...but let's say it's only a "part 1".) But that's been a big part if not all of her problems, we're pretty sure. When I watched her sleep and just didn't feel right that she's never, not ever awakened US to feed her at night - we still set alarms - well, let's just say "always go with your gut!". When she falls off the bottle gasping and can't suck for more than few glugs in a row without tiring, when even in her all-too-still sleep she still breathes fast...that was her congestive heart failure, and probably not reflux. Holy. Crap. Well, anyway, here's an artists' conception. The little connection in the purple isn't supposed to be there:

She's being treated with two medicines right now (yes, on top of the two medicines for reflux, but those may be reduced if we see improvement from the heart meds). One is to reduce the swelling of her heart and one is to help her heart work better. Then she has three options:
  1. If she improves greatly we could possibly be able to wait and see if the PDA grows shut on its own.
  2. There is a procedure performed with a catheter to, uh, put a cork in it. This is minimally invasive but is often performed on older children. The meds might also be able to help her hold on till a pediatric cardiac surgeon thinks she's a good candidate for this procedure.
  3. There is also heart surgery, which would be a ligation (tie it shut) of the ductus. They would go in on her side to do it. This sounds terrified...ok, I'm her mother and I say it IS TERRIFYING, but her cardiologist says this is usually performed little bitty preemies and they do fine. Well, he didn't say "little bitty". But he did say "FINE".
He also says that they're on it, and not to be scared. Ha. Ha. Ha. He is clearly not a mother. But
she's in better shape now than she was for the first three months because now she's on meds to help her heart and she'll get the help she needs. I asked him what this meant for her future, 1 year, 2 years, 10 years down the road. He said, "She's going to need interventions, but she's in good hands, and this won't even excuse her from gym class. She probably would never know she had it." Thank you, that was what I needed to hear.

So, insert heart joke here. She's got a "big heart?" There's a hole in her heart that can only be filled by...Dr. Ritz?" Ok, too early for jokes. Honestly, I'm 70/30. Ok/freaked out. But I'm thanking the powers that be that this was diagnosed and that she has these fabulous doctors. I cannot say enough about Marlton Pediatrics right now. I believe we may be on their speed dial.

I also told her doctor when he asked me if I had any questions: "Just tell me she'll be ok."
"Oh, she'll be fine. I know it's scary, but she'll be just fine."
Thank you.
Still, Holey Crap.

Heh. Get it? Holey?


Anonymous said...

We were warned the babies were at risk for this as preemies and I know other preemies (esp. twins who've had this). It is scary but they are fine and totally normal. Still, I CAN'T believe Ellie has this. Poor baby. Poor you. Poor little guys don't deserve any of this. xoxo /h.

Shannon said...

We meet a couple of people in the NICU whose kids had this (it was one of the things Jack had that couldn't be treated unless he had gotten better). The one nurse said her son had had this and while it absolutely terrified her now that she is a nurse she realizes it's really common and totally treatable. Her son healed with the meds. He's now a healthy, crazy boy without any problems (heart or otherwise)
Praying the meds will work for Ellie!
Also, I'll be praying that all your recent trials are not in vain but good comes from them!!!

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