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.

Friday, October 16, 2009

My Secret's Out...

The people in room 12 got discharged, so that room is empty now. Rooms 8 & 7 are also empty, so I only got to peek in room 9 tonight when I went to get my 2am glass of ice water. I think the people in rooms 11 and 10 read my blog, because their curtains were closed right now ; ) secret is out.

Speaking of pumping, I just pumped 9 ounces right now! (Youch, no wonder my boobs hurt when I woke up).  They said that once Scarlett is extubated (when the breathing tube comes out), we can start tube feeding her.  So all the milk I've been making since Monday can finally be used again (yay!).  Nurse Kim (or Nurse Practitioner Courtney) said that when they do start feeding her again, it'll be a 20 calorie diet which means no more fortifying! Yippee. Now I just have to thicken her milk without having to add the formula too. I hope Scarlett is able to gain weight on just breastmilk alone...because fortifying and thickening really sucks.

Nurse Jessica just came in to reposition Scarlett and assess her. Scarlett wakes up a little bit everytime Jessica comes in to do that (every 2 hours). It is heartbreaking, because her eyes open, she stirs a little and she always chokes on the feeding tube. Yesterday evening, she even spit up a little from choking on the feeding tube. Nurse Jessica said that's a good sign, it means she's strong and her gag reflux is good even with the tube down her throat. Jessica suctioned (used a machine to help remove secretions and mucus from the airways) Scarlett a couple of times both through the feeding tube which has a suction mechanism inside of it and also with the external suction tube (like the one they use at the dentist office). Scarlett had a few secretions (loogies/mucus) in her lungs and airways. Since she can't cough to get these out, that is why nurse Jessica has to 'suction' them out.

And let me tell you.... Suctioning SUCKS! (pun intended). Literally and figuratively. Watching your baby gag and choke because a tube is being shoved down their throat through a tube that's already down their throat is miserable for the baby and heartbreaking for the mommy to witness. But thank goodness Jessica was able to get the loogies out when she suctions Scarlett.  Otherwise the mucus can stay in her lungs, and she could get a lung infection or worse...pneumonia.

So, everytime she's suctioned, Scarlett gags, chokes and her face turns colors. It was the same Wednesday night too. I still haven't heard my baby cry since Sunday, and you can tell when she wakes up she wants to cry but no sound comes out. Jessica just gave her a half dose of Morphine (pain medication), and Scarlett settled back down and went ni-night again.

Todd is spending the night tonight, so I let him have the couch/bed thing I've been sleeping on since Monday which in and of itself isn't terribly comfortable but when compared to the 'hospital cot' a.k.a 'roll-away-bed' that I'm sleeping on tonight it makes the couch/bed seem like a Tempur-Pedic Memory Foam matress (super duper comfortable mattress).  My Golly! I woke up in actual pain from sleeping on that cot. My back, my arms, my legs, my sides, my tummy felt like I'd been beaten with a meat tenderizer. It's more like a torture contraption than a bed. Thank heaven Todd usually doesn't spend the night, he usually visits during the day then goes home to be with Violet at night. But tonight Violet is spending the night with uncle Kevin and aunt Kerri. I don't mean to sound like such a complainer, but seriously... that bed is NOT comfortable. I miss my bed at home.

Well, I know I've been saying it everyday for 3 days now, but I really think she's gonna be extubated today (Friday), so I'm knocking on wood, and keeping my fingers crossed.


  1. The suctioning was horrible to watch. I hated when they did that to Hope and I know she hated it too. I am jealous that you have a couch/bed in her room to sleep on. We were able to sleep on the window sill (it has a thin mattress thing, but it leaned toward the floor and I was always afraid I would end up on the floor).

    I am praying extra hard today for her to get extubated. Maybe the extra prayers will help!

  2. My fingers are crossed that they get her extubated today!!!