Sunday, January 08, 2006

e Coli again?

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.


Jodi from PROM said...

I know it's hard with the unknown of Kaitlyn's long term prognosis. I think it's another grieving process you will go through. But let me tell you from experience, that you will be so proud of your little gal, no matter what. And you will always be in awe of what a miracle she is. Her milestones will be so when she takes a full feed for the first time. No big deal for a "normal" newborn, but a HUGE deal for Kaitlyn. It actually makes life so wonderful. So try not to worry about the unknown, and try to focus on the positive things. Your Kaitlyn is a beautiful miracle and has made SOOO much progress. And you, mom, are her rock.

Hang in there, this road is well worth the sacrifice.
:) Jodi (Anthony's mom from PROM)

julie deruvo said...

Hi Liz,
I have been thinking about you and wanted to check your site for an update on Kaitlyn. I am soo glad they caught the e-coli and are able to treat her! I am anxious to see what the dr's find in her 2nd scope in a few weeks. I pray the news is good.

I was just reading Jodi's message from above and she is right--- you need to focus on all of the positive right now. Look at how far Kaitlyn has come in 3 months -- she has grown by nearly 400%!!! She has conquered so many hurdles thus far... she will get through whatever comes her way. Its difficult to try to stay positive and not be over come with worry, but try to reflect back at her progress during those times! :)

I wrote to you the other night on your posting I believe from 1/3... just letting you know I was thinking of you! I was so grateful to see all of your beautiful pictures and to especially see the one of Corinne & Kaitlyn together. What a beautiful treasure.

I will touch base this week to try to get a visit on the calendar!

Take care of yourself and get the your rest and time together with Brian now. When Miss Kaitlyn comes home (which will be before you know it!) those moments will be long forgotten! ;)


Stacy - mom to Tanner & Morgan said...

Hi Liz -

I happened upon your blog from another twin blog. I am the mother of twins - born at 26 5/7 weeks. My "babies" are now 20-1/2 months old.

Our son, Tanner, had a PDA, ROP, Grade 3 brain bleed, and a rare liver disease that eventually led to a liver transplant this spring. Our daughter also had ROP & anemia of prematurity.

I just wanted to let you know that it does get better. I still worry about whether or not my kids are developing normally, will there be evidence of CP as they get older. Unfortunately, for all my worry, I think I forgot to enjoy my children for awhile. Sure, I watched them grow and I loved them to death, but I was too worried about the big stuff to absorb all the other little things they did.

We're far enough out now, that I've started to enjoy them & their personalities. And, no matter how bad our road has been, I wouldn't change it. The NICU experience shaped my husband and I - our relationship has evolved because of it. And, my kids - well, with all their problems - they are still perfect to me.

I hope it helps to know that it does get better - in the meantime, I'll be praying for your family.

michelle flannagan said...

Liz- it's good you took some time for yourself, you need to do that for yourself and for Kaitlyn. It's so hard not knowing what's coming down the road concerning her long term prognosis, but she will continue to amaze you and there will be days when you forget that she was such a little peanut. then something will happen, and it will all come back to you in a rush. It still happens to me once in awhile, and my two are almost 4 (when did that happen??). Take care-- Michelle