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


I hate being out of control (out of my hands/not in control) and feeling completely helpless and worthless when it comes to my baby's care. I am forced to watch her suffer and there's practically nothing I can do about it.

I can't even count how many times my poor baby has thrown up in the last 3 days, because it is so many. :(  Yesterday and last night were no different. No improvements whatsoever. She ended up pulling out her feeding tube with her finger and we were able to keep it out all day... but then when it came time to give her oral meds, we put them in a bottle and Todd tried to feed it to her. She wasn't having it..she threw it up. So, Todd slowly fed her a 'medicine free' bottle and she took  2 ounces and seemingly kept it down.  Nurse Tiffany ended up putting the NG tube back in and giving her her meds through the tube.

Yesterday evening around 9pm (4 hours after Todd fed her), I fed her a 2 ounce medicine-free bottle.  She didn't even take that much... 15cc's (out of 60cc's), then from the depths of her poor little gut, I hear it coming. She started gagging, then choking and finally completely vomited the 15cc's, and all of the 60cc's from 4 hours earlier. : (  I started to cry. I hate watching my baby suffer.

I hate throwing up myself. It takes a lot out of you. I can't even imagine how it feels to be post-op open heart surgery and throwing up 5-6 times a day. When I had my gallbladder removed last year, it hurt to cough, laugh and anything related to straining my abdomen. This poor little baby is uncontrollably, forcefully vomiting and I feel like she's practically tearing open her chest again every time she does it.

I was very upset. Dr. Underwood came in to comfort me. I don't understand why Scarlett's having these setbacks. She's so delicate and fragile, she doesn't need to be throwing up the way she has been. We tried to pinpoint when and why and what triggers a vomiting episode. No no avail. Dr. U ordered a abdomen x-ray, and nurse Nicole had already given Scarlett another suppository to try to get her to poop again. After she threw up ,we decided to tube feed her the 2 ounces and let her rest. So we did.

The abdomen x-ray showed that her NG tube was kind of in her intestines.  So nurse Nicole pulled it out a little. and said she'd be feeling a lot better once she rested. Well, shortly after we tube fed her and after the x-ray, after I had just laid down to go to sleep...she started coughing, then gagging, vomited again! Only this time she dry heaved and spit up bile. 

Everytime she barfs, her ng tube comes halfway out, then nurse Nicole gently shoves it back in.  Same thing was happening now. As Scarlett is puking up bile, out pops the tube again, then Nicole taps it back in, then Scarlett gags and dry heaves again and out comes the tube again. Then Nicole gently puts it back down, then the same thing for Scarlett....after 3 or 4 times of this I Finally say: "Do u think the tube is making her throw up?", and Nicole said: "it's possible." So we just pulled the darn thing out.....and Scarlett almost instantly fell asleep. Poor, poor baby. Physically exhausted from all the vomiting. :...(   So now I'm worried why she can't keep anything down. Either orally or via NG tube.

They had to start her on another IV drip (they had stopped it in the morning since they were going to try to let her eat again). So right now, she's resting. She is still on 1/2 ml of oxygen. They tried to wean her off of that earlier today too, even took her oxygen nasal cannula off. But she was de-sating (oxygen levels dipping into the mid 80s), so they had to turn it back on.

She did not have a good day today. I don't know if these are considered setbacks, but I just feel soooo sorry for her...and so helpless as a mother.  : (


  1. I am so sorry Scarlett is going through that right now. It is so hard to watch your baby throwing up and knowing there is nothing you can do to help her. She seems to be doing good other than the eating and throwing up, so focus on all of that. They will figure out why she is throwing up and she will be back to normal soon.

    I continue to keep you in my thoughts and prayers. Will be sending some additional anti-vomit prayers your way.

  2. I know it is SO frusterating! I read Avery's post about the NG after I wrote mine...we are both on the same page with the NG after living with it for over a year. It is horrible, yet they need their nourishment. I feel your pain with the throwing up tho.... those were always the things that got to me the most. It is so hard to watch and so frusterating, I know. Once they get her digestive system back in shape, things should get better. It just takes time and it's a HUGE balancing act. It isn't necessarily a setback... just a road block....She'll get there and her heart seems to be looking good, so that is AWESOME! I think she is doing AMAZINGLY well considering she less than a week post-op. Keep your spirits up and have faith in her medical team. They will get all the glitches worked out :)

  3. I so remeber the setbacks. Just hang in there, she is strong. She has a lot of people and Angels pulling for her. I will keep you all in my thoughts and prayers.

  4. I wish there was something I could do. I just keep praying and now have my mom praying and all their church family. Hang in there. Here are big hugs for you and baby Scarlet. XO!

  5. I agree, watching your child suffer and having no control over it is the hardest thing any mother can do. I've heard that sometimes during surgery a node/nerve that controls the gagging reflex can be damaged, have they mentioned this at all? I really hope it is not the case, but just wondering what the docs are thinking at this point? I will pray for your sweet girl to get over this soon.