I would like to start out by apologizing for not posting sooner and for the long post. I will incorporate pictures in between text to make it more interesting. A lot has happened in the last 2 weeks, but if you looked in our Children's hospital room, you wouldn't think so.
Vaccines - Since we heard that vaccines are harmful, we decided to let our children decide whether or not to get their Shots. Surprisingly, against all credible medical advice, Ender and Rooney decided to get their shots. They immediately regretted their decision. Their cries temporarily drowned out the volunteer harpist who was playing in the lounge outside their door. They were tough though and handled all 3 shots each! We cuddled them and promised them as much screen time and sugar they want when they are older;)
Ender
1. Brain - He had an MRI last Monday. It showed that the blood clot in his brain had not grown. There is still puss in his ventricles, though they are dead infected cells and will eventually drain. Libby and I watched him obsessively for the next 5 days, asking nurses, NPs, and Attendings paranoid and sometimes ridiculous questions about any little change we saw in him. We found out today that if there was any infection in his brain left, Ender would be obviously sick within 24-48 hours. We were very relieved to hear this news, and can now focus on the next tasks at hand.
Yes, that is "Blue Steel", soon to be male model.
2. Lungs - Ender has had his Nasal Canula (set on the lowest possible setting) removed 2 times over the last 2 weeks. He did very well for about 24 hours each time, but eventually started having desaturations/apneas and needed assistance once again. The Attending gave him a week long break and we will try again starting this Wednesday.
3. Tum-Tum (3 Ninjas reference intended) - Ender is still working on his bottle feeds. He was not very good at coordinating suck/swallow/breath and the Attending thought he would do well with a week long break. Today he started up again and did okay but not great. If he doesn't improve soon, he may need a swallow study and need thickened formula for the next 2 months to ensure he is not swallowing breastmilk into his lungs. We obviously do not want this as he would be on formula for the next 2 months instead of Momilk:)
He obviously couldn't care less
4. Teenage Sleep Schedule - For the last 3 days, Ender slept almost all day. It was something that was worrying us, like maybe his meningitis was coming back. Everyday we would get a report from the night nurse that he was up and awake at night. We decided to spend a night at the hospital to see if this was true. Holy Crap! Ender was up and crying and wanting to be held for half the night, good practice for when they come home!
5. Water Weight - Ender has also been put on a diarrhetic to help him lose some of his excess water weight. It has been working!
Before (Turtle Boy) and After
Rooney
Over the last 4 days, Rooney decided she wanted to start eating from the bottle. She has increased the average feed from about 5 ml to 25 ml. It is nice to feed her ourselves and watch her progression. She needs to get up to 45 ml per feed for a sustained period in order to come home. She still has a lot of work to do, but we are so proud of her so far!
"How can I reech these keeds?"
On Sunday we walked into the room during a Steelers game. The nurses found out we moved to Pitt and decided we needed to raise our kids the Yinzer Way.
Rooney however, quickly responded saying she was Vikings 4 Life
Enders getting big
Mom!
(Bonus: Puzzle #2 "Who's Butt" was removed from the post due to Libby finding it too crude I'll send you the pic if you email me)
Are you guys still here? Post is over!
