Remember the Tooth!

Seraph might have a cavity!

I keep switching back and forth between thinking it's a cavity and thinking it's some paint she chewed off a toy.  (Ya, I know that's bad, too.  Those painted toy trains are supposed to be out of her reach.)  I hadn't thought much of brushing her teeth since she doesn't eat orally and has HUGE oral aversions.  Her aversions stem from being repeatedly intubated when she was smaller.  I guess not brushing was a mistake--worse because my brother is actually a dentist! (....but not a pediatric dentist.)

So, if you have a heart baby, remember to brush his teeth!

If it does turn out to be a cavity, we'd have to take her to a pediatric dentist.  They'll sedate her then take care of the cavity.  Taking care of it while she's awake is NOT an option because of her aversions.  Her heart rate would shoot thru the roof!

Also....anytime a heart baby has dental care, they take antibiotics first.  Otherwise they're susceptible to a specific bacteria that will damage the heart.

That said.....the dark spot seems to be getting smaller.  So, I'm hopeful that it's just a spec of something that I haven't been able to brush out.  Yes, I'm brushing her teeth now.  No, she doesn't love it. Yes, I'm doing it anyway.  No, I don't know how this will affect her aversions.

Good Report from Cardiology

Seraph visited her cardiologist today.  She was wary, but playful.  The x-ray was traumatic:  2 gals holding her against the wall while her mommy walked away. :( Everything else went well.  Cardiology wants to see her every 3 months.  She had labs (they might tweak her meds).  Overall the Doc was impressed. He even mentioned the possibility of Seraph being able to have the 3rd heart surgery (Fontan) if her pressures go down.  He's a pretty pessimistic guy, so him acknowledging that hope was huge for me :)

We also found out her cardiologist is also working from the clinic at the new hospital that's only 5 minutes from my house.  They'll be able to do all her future visits and tests there....except for heart caths and sedated echoes.  I'm thrilled!

My emotions have been all crazy lately.  Here's a picture of Seraph last year on Christmas Eve in the PICU:

Last year, after spending ThanksGiving, Christmas, and New Year's in the PICU, she came home on hospice care.  They didn't think she'd live to see her first birthday (in June).  My sweet little girl decided to stay with us.  She's a fighter and God has blessed us to keep her with us for now.  I'm holding my breath, but I really think she'll be home for Christmas this year.  Yay!

She has changed so much since last Christmas.  She's army crawling; sitting by herself; doing baby talk.  She's invented her own sign language to communicate:  "I like..", "I'm happy", and "that's bugging me".

At the end of her appointment today, she wouldn't let me put her down without screaming.  I pushed her stroller out to the car.  As soon as she saw our car, she made her sign for "I like.."  All her tears stopped.  She smiled and giggled and played all the way home.  I think she must've been scared that I'd leave her at the hospital.  I was just as happy to be bringing her home.  Love you, lil girl :)

Thank you for all your prayers and support - and Merry Christmas to you and yours :)

and then everything blurred together....

Dealing with NICU stuff is much harder than dealing with inpatient stuff. My emotions are too close to the surface. I tear up over nothing...and sometimes feel nothing when I could be crying.

Angel:
All good news :) Angel is in the step-down nursery. (Not ready for normal nursery but doesn't need intensive care either.)
1. Food.
They're upping her caloric intake based on her weight and expenditures. She has a feeding tube (through her nose and down into her stomach). They only use the feeding tube for every other feeding. Otherwise I nurse her (if I'm there) or a bottle (if I'm not there).
2. Breathing
She's been breathing room air on her own from the start. They warned me that 34-weekers often regress on breathing after the first few days. I guess they just get worn out because they're so tiny and eating/breathing/staying warm is too much to do all at once. Angel has never needed any help breathing and they're not worried about it.
3. regulating her own temperature.
Angel is in an incubator (we call it her condo). She stretches out and lounges around all day like she's laying out in the sun. Today her condo was set to 30.0 degrees. Once it's down to 29.0 Degrees they'll switch her to an open crib.

Angel just needs to keep gaining weight. I expect she'll be able to come home when she's 2 weeks old.


Seraph -
1. food
Because she'll most likely need heart surgery soon, Seraph is fed through IV's instead of real food. She seems to be a natural nurser--she roots and sucks and loves her binky. She's always trying to get more of her binky into her mouth :)
2. breathing
on day 5, they finally put Seraph on a liter of oxygen. She just has the tiny nose tube - like I had when I was doing an NST that said my oxygen was low. Her lungs are working extra hard because of a heart problem. This was expected - actually we thought it'd happen sooner.
3. regulating her own temperature
Seraph is really good at this. The first 3 days she was just in a crib. She's under a heat lamp now...but that's mostly because she has so many tubes and probes that it's easier for the doctors to heat her air than to keep wrapping and unwrapping the blankets.
4.jaundice
The doctors have Seraph on a bili-blanket as a pre-emptive strike against jaundice. her count wasn't that high, but it seemed to be going up so they started helping her.
5. heart problems
the cardiologist is still watching her closely. At this point when asked if she needs surgery, the answer is "not yet".