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>> Saturday, February 24, 2007

I've been catching up with some of you at work and on the phone but haven't really gotten a chance to let everyone know how Cassie's been progressing...some of it is just too detailed for a quick "How's she doing?" and some of it is just "too much" for me to actually talk about...writing is easier:)

The past couple of weeks have been a little busy... Since I last emailed, Cassie started to have some real trouble with the vent - it was causing a lot of fluid build up and inflammation which in turn caused us to need to increase her settings, which caused MORE fluid and inflammation....after a long talk about side effects etc, we decided to try a quick low dose of steroids to help mature her lungs a little more. It was a really tough call...steroid treatments come with risks of developmental delays, but remaining on the vent for extended periods also can cause developmental problems. I'm so grateful for the wonderful docs we have ...I'd done quite a bit of research when we saw how the vent was becoming self-defeating and if they had downplayed or dismissed the risks of steriods I would have completely lost faith and trust in them. Instead, Cassie's doc spent a LOT of time with us explaining what our treatment options were and ALL of the risks and worked with us to choose the shortest, lowest dose we could. Cassie still had a lot of work to do on her own, but the steroids gave her just enough support get off the ventilator and graduate to to a device called CPAP (provides a steady stream of air to "remind" her to breathe rather than breathing for her).

Because of the vent being gone and her being big enough to regulate her temp a little better she's also allowed to wear clothes now - seems like such a silly thing to be excited about considering all the serious medical stuff going on all the time, but it really made such a difference for me. I was talking with another Mom who's baby was born around the same age and she summed it up pretty well "It's almost like she's a REAL baby now, right?" She was just so exposed and defenseless before and honestly sometimes just seeing her there with all the equipment and tubes and wires, with alarms going off left and was like a science experiment gone horribly wrong. The clothes just seem to protect her and help me to see past all the medical "stuff" and concentrate on my sweet baby. Here she is with her "big girl" clothes and CPAP holding on to Daddy's hand!

This morning we walked in and Cassie had another surprise for us - not content with the CPAP, she moved right on up to a high flow cannula...same basic principle except it has tiny little prongs that barely enter her nose which enables her to move her little head freely now! (and are much more comfortable!!) We're not sure if she'll be able to hold her own on this yet, but she is on very low flow setting and just a smidge above room air on her oxygen, so there's lots of room to adjust if we need to.

It felt weird to hold her and be able to move her around a little today, our nurse had to physically loosen up my shoulders and prove to me that I could move freely without hurting her :) She also placed my chair so that I couldn't see Cassie's monitors... she didn't tell me until afterwards that she did this on purpose - she had noticed that I was tending to live and breathe by those things and thought I needed a break to just enjoy Cassie. She must have been right because I positively had a panic attack when I realized I couldn't see them and didn't know what Cassie's "numbers" were!! While it's helpful to be able to anticipate when Cassie is having trouble, I was really obsessing on it...there's going to be plenty of times I need to be her nurse as well as her Mommy, but thanks to a wonderfully attentive nurse today wasn't one of those days! Here's a pic of Cassie today, out of her isolette and enjoying her freedom!

Lot's of people ask about how the boys are handling things and I'm going to take a second to brag LOL! I am so proud of these guys - this whole situation is just so hard and scary for them and they just keep trying to make it OK and seem to be able to find joy in the simplest things. I've included a couple of pictures below of "Kids Club" this Tuesday. You'd think that with fourteen babies, all of their equipment, 5-7 nurses, and the people who were visting all in a room just a little bigger than your average living room that it would be impossible for to have a family moment and relax. Yet, the boys come down from their get together, bring their art projects (this week a Valentine's card for their sister), Christopher keeps a book next to Cassie's isolette that he reads a little bit from each week and they settle right in for some family time - talking to their sister about their week, making plans for her as she gets older...there's laughter over the goofiest things...the latest is the idea for a t-shirt for Cassie that says "Half Baked!" (Let's NOT speculate on who they inherited that warped sense of humor from!) There have been tears, smiles, and questions galore, but more than anything else they really get that it doesn't matter where we are as long as we're together for those few short minutes each week...I'm a lucky woman to have such wonderful teachers!

This by the way is our first family picture! Once again thanks to an espescially wonderful nurse who saw us listening to Christopher's story and ran to get the camera! The funny thing is...she wasn't even our nurse and we'd never met her - she just saw a moment she knew would mean a lot to me and had to get it on film.

In case you haven't noticed from my emails - these NICU nurses are a VERY special breed of people. There was the nurse who heard the boys were coming for their first visit and tore the whole unit apart looking for a shirt that would cover Cassie and not interfere with her equipment so the boys wouldn't be scared, pictures taken by nurses I've never even met of Cassie doing something cute that I find left for me, Michael's "football buddy" who takes the time to argue the merits of the Patriots vs the Cowboys even though I can tell she knows about as much about football as I do, the way EVERY nurse in the room stopped one day to correct me when I told a student nurse that Cassie was so premature because my body couldn't take care of her. Here's a hint...NEVER say it's your fault in NICU - the nurses will NOT go back to their normal routine until you repeat after them "It's not MY fault" until you believe it! Also...never get between a nurse and "pretty" blankets...they HATE those white hospital blankets and will rip freshly laundered "pretty" blankets right out of your hands to change the bed right away! I've seen these ladies and men send lab tech's packing with instructions to come back when it was time for the babies care so that their sleep is not disturbed and I've seen nurses working their hearts out with tears pouring down their face when a baby has a setback. I've had "moments" with a couple of nurses, and even then haven't found one who wasn't willing to listen and learn from what I was trying to say. I wouldn't have made it through the last six weeks without these wonderful men and women...if you ever meet someone who tells you they are a NICU nurse anywhere - give them a hug and say thanks for me!

Well, if you're still with me, sorry this has gone on so long...I really need to take up blogging or writing a journal to spare everyone the long emails LOL! Thanks so much for all your love and support!


The Preemie Experiment February 26, 2007 at 9:40 AM  

Cassie sure will be spoiled with all of those men in her life!

Lisa March 1, 2007 at 12:57 AM  

Your daughter is SO adorable! I hope the rest of your NICU ride is short and uneventful!

Kath March 3, 2007 at 2:29 PM  

Not to take anything away from NICU RN's, but NICU Respiratory Therapists are pretty special as well.


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