CHD Awareness week Tidbit of the day:

Did you know that not all newborns are screened for heart problems? I mean, obviously we don’t do an EKG or ECHO on all newborns, but there is a simple, simple test that would identify possible fatal heart defects, and the cost is almost nothing.

With certain heart defects (such as Annabelle’s) a baby’s blood oxygen level is lower than ideal. However, until it gets “too” low, you may not be able to tell by looking at them. And when it gets too low… it may be too late, especially if you’ve already been sent home from the hospital.

Annabelle – 1 day old

A simple pulse-oximeter test prior to discharge would catch many of these.

A handful of states have passed bills for mandatory screening of all newborns. Today, a similar bill in TN is going to the financial committee. I know zero about politics or how this works, but I know a lot about congential heart defects and how critical it is to find out about the problem as soon as possible.

We were blessed in that they found Annabelle’s defect during an ultrasound. What looked like at first just the baby not in a good position ended up being a potentially fatal heart defect. So when she was born, we were as prepared as we could have been.

Some mom’s don’t get that heads up. Cora’s story has long been one that is near to my heart, and her mom is a HUGE advocate of the pulse-ox study. If you go read her story, you’ll see why.

Annabelle Update:
We had a slight issue last night. She threw up (major) twice yesterday. Once while at her GI appointment (how appropriate) and once in bed. Actually, the time in bed she threw up multiple times. And it was a whole 5 minutes after giving meds! I called the on-call cardiologist, and they advised not regiving them. If we “overdose” her rejection meds, it could give her some serious issues. And if we overdose her blood pressure medicines… well, let’s just say we don’t want a massive drop in BP! So, just hoping she didn’t throw those up was the best course.
That said, Annabelle has a pretty yucky cold. In fact, my whole family (besides my husband) has had a cold on and off for the last week, so I’m not really surprised or worried about it.
We did go to our GI appointment yesterday. They are doing a whole bunch of screens to rule out other GI ailments non-heart related. They mentioned the possibility of doing a scope eventually just to make sure there isn’t something they are missing. To be honest, I really like this idea, however I do NOT really like the idea of her being put to sleep again. 
I mentioned to the doctor that Annabelle has her heart cath end of March… and maybe we could do it at the same time so she doesn’t have to be put to sleep again??? Evidently that makes too much sense though, as she noted it’d be too hard to coordinate schedules. BLAH.
She also gave us a new feeding regimine and some pretty big changes, but I’m nervous to start it, especially with her junky anyway which always affects her GI. So, I might keep on as we are and change once she’s gets over this bug. 
Yesterday rease her weight. They wanted me to add a 5th feeding throughout the day, but I stomped my foot.was a super frustrating day. The appointment went FOREVER. Literally we
were there for THREE HOURS. And it was Annabelle’s naptime and she would
not sleep so she screamed about 90% of the time. And I’m not loving our
new feeding thing either, although I understand we need to do SOMETHING
to inc
Okay, I won’t go into that now, because I will get on a soap box and I feel like yelling at the moment, and blog-yelling won’t help the matter. *deep breaths*
Anywho, I do have a few little YEAH’S to share though!
Annabelle officially likes to clap her hands! She’s a clapping fool and this momma LOVES it!
She also did GREAT in feeding therapy on Monday for the first time in pretty much ever. And that night, I put “crumbs” on her tray for her to play with, and do you know what my baby did???
She licked her tray! I turned around and there my baby was, crumbs all over her lips, and a funny look on her face saying, “holy crap what is this stuff on my face!”
It was priceless!

1 Comment

  1. Oh man, I'm sorry you had such a stinky day yesterday! (literally and figuratively, right? LOL) Hopefully the stomach thing resolves itself soon. Sounds like you're using your wise mama brain to do what's best.

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