The gift of time...

>> Sunday, March 18, 2007

Lots of new news this week!

Cassie had a wonderful week…she’s attempting to nipple feed at every feeding now and manages a complete feeding at least 3-4 times a day, has graduated from her isolette to a regular newborn bassinette/crib, has dropped from the 3 litre setting on her high flow cannula to only 1 litre, hangs out on only room air oxygen levels for most of the day, and =drumroll please= is stable enough for visits with her entire family in one of the family rooms when they are available!! (Note I said Cassie is stable enough…Mom might be another story altogether LOL!)

She’s had markedly fewer A+B’s this week – maybe 1-2 a day and almost always at the end of or just after a feeding. We’ve gotten to know this month’s group of doctors a little better and found one member of the team who seems to connect with us and is able to trust us to handle information. Cassie did have an “iffy” eye exam this week. The pediatric ophthalmologist checks her eyes weekly for development of the blood vessels in her retina. Because she was born before those vessels were completely formed, she’s at risk for a condition called ROP – in a nutshell, the extra oxygen she requires can cause the blood vessels in her eyes to grow irregularly and eventually start to pull the retina away from the lining of the eye. In Cassie’s eyes, she passed the first two stages of development that they are looking for, but has started to show some irregularity. It’s very slight right now and may resolve itself; if it worsens she could need laser surgery and may have some vision problems. The outcomes are pretty much across the board and range from no lasting effects to blindness. It’s way too early to try to anticipate where this is going to go, but I really appreciated the time the doc took to explain everything to me (diagrams and all!) and his suggestions for me to find further information.

It was a really nice conversation and I learned a few things about how I can communicate better with Cassie’s doctors. First, I asked him to “teach” me what he was talking about. Then, when I started to get a little overwhelmed I told him and asked him to give me a second to process. Second, when he was done explaining everything and asked if I had any questions, I told him that I “understood” everything he explained, but wanted to think about it a little and asked if I could call him later. We set a time for the follow-up call (early next week) and then actually talked a few minutes about how well that went. I thanked him for the time he spent teaching me and it seemed like he appreciated me letting him know how much I was taking in and asking for the follow-up after I’d had time to think. We both sort of expressed that we wished it happened that way every time. I’m starting to realize that my demeanor and how I approach Cassie’s docs is going to make a huge difference in my family’s experience. I’m not sure exactly how I feel about that. I think that every parent in that NICU deserves the time and willingness to educate that I received from this doc, but this was the same doc who two weeks ago walked in, announced himself, took one look at my tear stained face (tough day) and told me he couldn’t proceed with me at bedside and was not available for questions later. Am I somehow more deserving of time if I’m calm and collected and dressed professionally? I don’t really think so, but at the same time these docs have work to do and I would have been a lot less receptive to him on the first day. No real answers here from me…it just seems like there is a missing puzzle piece in the NICU picture that would make the experience much easier for families AND make the doctors’ job much simpler…someone to act as a liaison between the parents and the docs. The nurses do this to some extent, but you can be assigned a different one every day. If you’re lucky enough you have a primary nurse. We have two who opt for Cassie’s assignment whenever they are in unless they are needed elsewhere, and that has helped immensely, but this doesn’t always happen for everyone.

Back to the topic at hand, we had a wonderful full family visit today and what would a family occasion be without some pics!

It was so very nice and I didn’t really realize until after just how needed it was. Not only did we need some quiet, almost normal time as a family, I think we also needed some practice at it. I was incredibly nervous. You can see from the pictures that I never made it quite more than six inches away from Cassie the whole time. We also needed to know that we could handle an urgent situation as a family without falling apart and little Miss Cassie was perfectly willing to supply one! She had a very dramatic “brady” while we were alone with her, requiring lots of stimulation, extra oxygen, and the calmest page to the desk to get her nurse back in. I still don’t know how I managed that “Could you please send “B” to the family room now” with just the slightest hint of panic in that “now”. I've already mentioned that "brady's" are sort of my downfall - they flat out scare me - but I was trying so hard not to scare the boys! Mike was right there listening to what I needed, and adjusting her oxygen, and the boys were appropriately concerned, but didn’t panic and stepped aside while Mike and I did what we needed to do.
Ten seconds later (the LONGEST ten seconds of my life!) and our nurse was there, Cassie was already pinking up and moving and responding, and after a quick check on Cassie, our nurse only really needed to talk about what happened and how we responded and explained things to the boys. Two minutes later, Cassie was happily enjoying being held by Matthew. It was nice to know that we could recognize and handle what happened, but I’m so thrilled that “B” had the forethought to suggest the family visits. The “practice” family time will help us to work through a few of the bugs and strains while we still have “back-up” and despite the few minutes of drama, we really NEEDED that time to be just us. I might not have left her side for a second, but watching her start to respond to her brother’s and her Auntie, feeding her and just talking like we might be in our own living room, was so relaxing that I might have actually forgotten to be on edge for a few minutes!
So I guess this week's theme is time...the precious time our nurse "B' reserved for us to be a family, the time Cassie's ophthamologist took out of his day to work with me and help me understand, how quickly time seems to be passing as Cassie prepares to come home, and how 10 seconds can seem like forever and then disappear as if they were nothing at all when you take the time to relax and enjoy the moment.


The Preemie Experiment March 18, 2007 at 10:14 AM  

Oh Karen! I loved seeing the pictures! She is beautiful! It sounds like you have a level head and have figured out how to deal with the doctors so they will work best with you. Sounds like they are trying.

Thanks for the update. You all are in my thoughts every day!


Awesome Mom March 18, 2007 at 11:12 PM  

What a little cutie! I am glad she is doing so well.

I have mixed feelings about your suggestion of a liaison between doctors and parents. I am the kind of person that needs to hear things directly from the doctor. things are always going to get lost the more people you add between the information source and yourself.

The best way to get Doctors and nurses to respect you is to show interest in all the procedures and equipment. Being calm about things and interested seems to get the more on your side and more willing to share.

Lisa March 20, 2007 at 1:30 PM  

Glad to read that things are rolling right along with your daughter. It is so good that she is taking the bottle well!!!

I'm with you on the brady thing. My daughter had terrible episodes while eating even after she came home (without a monitor!). They scared me so much! And they scared the rest of the family so much that they refused to feed her!

Sounds like they are getting you guys prepared for the road home. Do you think so?

Rebecca F.,  March 22, 2007 at 2:32 PM  

Not a mom to a preemie but wanted you to know that somewhere, a stranger (me) was sending my warmest thoughts and wishes for a healthy Cassie, a happy family and the best of all outcomes.

Good luck and be strong.

The Preemie Experiment March 30, 2007 at 10:22 PM  

Hi Karen,

Just wondering how everyone is doing.


Sammie,  April 1, 2007 at 11:49 AM  

Cassie is coming along great! I love seeing the pictures! And the not *spending more than 6 inches away from her* lol! That'll keep happening I'm sure. The ROP exams are scary, but I hope Cassie has little to no problems with major ROP.


Miracles April 7, 2007 at 7:52 PM  

Adorable pics of Cassie & the rest of your family.

Stay strong, we are all praying for you.

The Preemie Experiment May 16, 2007 at 8:38 PM  

Hi Karen,

I don't know if you are still reading this but I wanted to let you know that I am still thinking of all of you.


Anonymous,  August 10, 2007 at 10:50 PM  

I found your blog throught the preemie experiment. How is Cassie?

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