Remember that I had sepsis with e coli after the girls were born? And Kaitlyn also had e coli that had to be treated. Well, the docs took a swab of the red swelling in Kaitlyn’s throat and they cultured something…..yup, e coli!
At least that hopefully explains what the red swelling was all about, so Kaitlyn is taking antibiotics for 14 days. She never showed any other sign of infection (fever), so if it weren’t for the scope test they would never have found that. That still doesn't explain the 2nd cord though, just why they couldn't see that cord due to the swelling.
Additionally, because she was given steroids, her oxygen needs have gone way down, in fact, she’s basically on “room air” - 21% oxygen which is what you and I breathe. She’s still on the cannula, but it’s turned down all the way. Unfortunately, I heard from one nurse that the effect of the steroids might be temporary so I’m trying not to get too excited.
There is another blog mom of preemie twins that has been visiting my site, and sadly, one of her twin daughters has been diagnosed with Cerebral Palsy. My heart just goes out to her and her family. It has made me afraid of what the future holds for Kaitlyn. She didn’t find out for months after her girls came home. It’s terrible, because she is going through so much and I’m now so worried about my own daughter.
This road we are on is no fun.
I’m going to talk to the Doc tomorrow about the steroids (whether the effect will go away), complications from the steroids (brain development) and what her chances are for disabilities long term.
Kaitlyn had a new gavage tube placed – it goes through her nose. As much as it sounds terrible, it was killing me to see her so uncomfortable with the mouth gavage tube every time she had to be fed. She just gagged and gagged. She has also been showing signs of oral aversion – not liking anything near her mouth, which is not good for nipple feeding. The one now in her nose can stay in place for 30 days. It’s not pleasant to look at, but I don’t think it seems to be bothering her much.
At her feeds she’s taking about 1 ounce (30 cc’s) more often than not, so that’s good news, but her “full feed” is a bit over 2 ounces, so she still has to be gavaged the remainder. I’ll start getting very excited once she starts to take more full-feeds on her own.
My friend Diana was here from Los Angeles to meet Miss Kaitlyn for the first time. I blew it and didn’t get a picture of Diana holding Kaitlyn, but it was so great for them to meet each other. I hadn’t seen Diana in quite some time, (a year I think) so it was a great treat for mom to have girl sleep-over when Brian was at work and catch up on old times. Diana spoiled Kaitlyn immensely with all sorts of great pink girly things, blankets, clothes and more. Kaitlyn is one lucky girl with all the people who love her! I can’t wait for her to come home and grow so she can wear non-preemie clothes.
Today I took a break from driving to the city and going to see Kaitlyn. I miss her so much, her smell, holding her, touching her skin, but I actually don’t feel guilty (for the first time in a while), I needed a break… which allowed me to get some work stuff done. I send out a monthly email real estate newsletter which I have not done for a very long time, due to everything that’s been going on. It takes me hours to complete and my current “full time job” of going to the hospital every day has made it difficult. Now that January is here, my plan is to get back into work mode – I have to financially. I haven’t worked for 7 months now – hard to believe. Dad and I also got to spend some quality time together for a change, which was also a nice treat.