This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, October 19, 2009


Twice now, Scarlett has used her non-IV arm (her right arm) to pull her feeding tube out and her oxygen cannula out of her nostrils. She did it yesterday and she did it again this afternoon, so now she has to wear this arm cuff called a "No-No". It prevents her from bending her arm... thereby preventing her from reaching her nose and pulling out her NG tube.

But this afternoon her alarms started going off. Her oxygen levels were getting low.  I looked at her and say that my clever little girl figured out a way to bend her IV arm too... and she pulled out her oxygen and NG tubes out again. So now she has a sock around that hand to stop her fingers from grabbing. She has a sock with a wrist rattle wrapped around it as seen in this pic:

This morning, I woke up to a puking baby. I saw nurse Becky with some syringes and I pop out of bed and accuse her "What are you doing?!", and she says "I"m giving her her medications", and (I'm still half asleep), I practically yell at her "I thought they weren't going to give her anything by mouth? I thought they were gonna put in a feeding tube and give her her meds by tube?.." I was sooooo upset. I know it's not Becky's fault and I apologized for biting her head off, but I was pretty ticked off.

Becky said "they want to try to feed her by mouth today to see how she does", at which point I went off... (poor Becky) I said "That's what they've been doing since Friday?!! and she's just throwing up!, how much more can she take?! Don't they know? Didn't the doctors tell u what happened last night? I thought she was gonna be tube fed today??!!!!",  She calmly said (because obviously it wasn't her fault, poor thing) "well, all I know is they want me to give her the meds and try to feed her a little by mouth".. and I say "Can't I protest?! I a parent, can I refuse to do that?"  and poor Becky is like... I'll let Dr. Gramaldi know. 

I did keep apologizing to Becky, I know it's not her fault... but when I woke up to Scarlett vomiting again...then realized why she was vomiting... it was not pretty. I immediately got very upset.

Dr. Gramaldi came in and I said "Did Becky tell you I had a fit?", and she's so diplomatic.."she said you had some concerns.. etc.etc.". So the three of  us decided to put down another feeding tube (her 3rd) give Scarlett her meds, then to a slow drip continuous feed through her NG tube. 5cc's an hour for the first 4 hours, then 10cc's an hour for the next 4 hours. 

She's tolerated her feeds today with no vomiting. (yay!). And except for her pulling out her ng tube and putting in a new one (her 4th ng tube in 3 days), she hasn't had any gagging or choking either.

So far so good.

We're still trying to pinpoint what is causing her to barf. There are a lot of theories.
1.) She is in withdrawl from all the narcotics she was on last week.
2.) Side effect from the Viagra
3.) Lactose intolerance from my breastmilk
4.) She actually has some sort of bug/virus causing tummy problems
5.) She's constipated/backed up and the food has no where to go until she empties her bowels

There was talk that vomiting is being caused by her gag reflex or that her gag reflex is in overdrive, but I don't believe that because she loves sucking on her binky (as seen in the pics). Also yesterday and Friay she was able to keep down (suck and swallow) 2-3 ounces at a time for up to 4 hours before barfing. If it were her gag reflex, she wouldnt've been able to keep anything down.

Little by little we'll get to the bottom of this. I'm happy that she's been able to tolerate her ng tube feeds today. Here's hoping for a vomit-free evening.


  1. Melodie,
    You are a Wonderful Mother and a OUTSTANDING ADVOCATE for Scarlett. You have been with her 24/7... experiencing every day, every minute. You 'knew' what Scarlett needed and what she didn't need and you stood your ground. One large part of Family Centered Care is medical professionals beleiving in the importance of family and listening them. How great that they listened.

    I too am hoping for a vomit free evening!

    with Hope,
    ~ Chris A ~

  2. What a blessing that Scarlett looks so good considering everything she has been through for the past few days! Scarlett is strong, and smart, and WILLFUL too?!? (Gee, wonder who she gets THAT from? Maybe her MOM?)I did wonder if she had developed a lactose intolerance though. I've been steady praying that whatever was causing the horrible, excruciating barfing episodes would just cease and desist. I'm sure it doesn't help much to know that everyone who knows and loves you and Scarlett felt helpless right along with you, Melodie. I just wanted to take it on myself or whatever it took to make it stop happening to Scarlett! It's truly amazing how good she looks right now knowing what she's been through in the past few days. That can only be proof positive of how much the repair improved her overall health. The fact that Scarlett knows that her Mommie is there with her and there for her and has been every moment since she first got there is what keeps Scarlett on the recovery fast track. The overall improvement in Scarlett in a single week's time is nothing short of a miracle. You'll be taking her home (barf free and tube free) before you know it!
    With Much Love!