Today has been CRAZY!!!
Many Happy and not so happy minutes of today.
Happy Minute = Mia slept from 9 - 6 am (until her scheduled blood draw)
Sad Minutes = The lab people came into draw her blood and couldn't get any. I kind of have a reputation with the lab. When we were initially on the floor there were standing orders for the IV team to try and get her labs. I don't know what it is about the lab kids (I say kids because most of them look like they're twelve) that cause such a sick feeling in my stomach. They walk in the door- and I know that they are going to stick her again and again with no success. We have had one lab person draw blood from her... ONE. Anyway, Mia has been a pin cushion today- and it hurts my heart to see her cry so hard. Her blood draws are necessary, I just wish they were a little less cruel. It would be so wonderful if there could be a one poke a day guarantee. It's not that the lab people aren't trained- they are. Mia has had an IV in every inch of her body, and her veins are shot.
Happy Minute = Mia is playing with toys hanging over her crib- it's amazing what a new heart will do. She is changing right before my eyes.
Sad Minute = Mia had a swallow study today because she hasn't been progressing with her oral feeds. The study showed that she aspirates when she swallows. She does have some clean swallows but will occasionally aspirate- which is dangerous to her. She will get re-tested in 6-8 weeks to see if we can re-introduce the bottle. I am totally bummed, she was doing so GREAT! In the beginning of all of this, I just wanted to feed her, now I have to wait longer. I guess if there is one thing I have learned it's patience. This also means that my days of pumping aren't winding down. Pumping is my least favorite thing, but I am determined to stick it out. Mia will be sporting the NG tube for at least another eight weeks. Little set backs are rough, but we can handle anything compared to a few weeks ago. I know she wants to eat so badly, but just needs to heal and get organized- She is my baby hero!
Happy Minute = I passed my quiz for all of the medications. They make sure we are ready to handle home life giving so many meds. The pharmacist guy was a crack up.
Sad Minute = I have to not concentrate on all of the meds because I can already see the side effects.
Happy Minute = She Smiled so much today. She had a huge grin on her face when she was getting an ear nose throat consult. I don't know why she was so happy to see him.
Sad Minute = Her smile was quickly replaced by screaming when he placed a scope down her nose. He looked at her vocal chords and confirmed the suspicion that her chords are swollen. She was intubated for quite some time and it isn't uncommon for kids to struggle with swollen vocal chords. I feel so bad for the little one. I see her smiling at him...she is so trusting and loving. Then she is so confused by having someone gag her with a scope. I don't know how to explain it- but seeing her sweetness only be punished (in mommy eyes) is humbling to the core. I am glad she is a sweetie and won't have memories of these day to day tests.
Happy Minute = We are out of Here on FRIDAY
Sad Minute = No more eating the delicious cafeteria food :D
Happy Minute = Komo 4 news is coming in the morning to interview us.
Sad Minute = I look like I haven't slept in DAYS.