It’s been quite a while since I last updated the blog. There have been many changes actually. For people that are in touch with us, they know about small posts Neill and I update here and there. I haven’t built the courage to sit down and write about our recent struggles without drowning my eyes with tears – so I’ll start here.
A few weeks ago we celebrated Mother’s day. It was my first Mother’s day with Luke and we celebrated in the NICU. He had another episode a few days ago and was on Phenobarbital – so I wasn’t able to hold him like I originally had planned. Although I would like to say “I wouldn’t have it any other way” – I have hopes that the next Mother’s day would be spent at home with a nice breakfast in bed =)
That day consisted of 3 visits to the NICU and a regular dinner out with Kailani & Neill. His Nurses that day [J & K] made a little card for me! It was such a nice little surprise waiting for me at Luke’s isolette. It read “Don’t be afraid to dream for out of such fragile things come MIRACLES.”
Signed hand printed, Lil Luke.
I would like to take a moment and THANK the KAISER WALNUT CREEK NICU / ICN NURSES TEAM!! You have all been nothing short of outstanding!! As a mother, it’s hard to trust your newborn baby – but I’m just so thankful that you all have touched our family. I know we say it time and time again – but we really are grateful to have you bless Luke with your OCD powers
Being a ‘NICU veteran’ these past 11 weeks – I’m starting to greet everyone by name. Everyone knows Luke – and they know us. It feels like we’re family now Aside from the several dozen nurses that have spent shifts with Luke, I’d like to give a big huge THANK YOU to his primaries!
I was trying to look for the article that Celeste gave me the first few weeks that made me giggle about how OCD nurses are – but I thought I’d give a go at describing what I’ve observed these past few months.
YOU KNOW YOU’RE A NICU NURSE IF . . .
- You measure age – not in years, but days, weeks and gestational age
- You spend 10 minutes scrubbing your hands like a surgeon
- You plan your day around when your baby needs to eat
- The “Q” word is a bad word
- You secretly are cheerful to find a poopie diaper
- Speaking of poop – you can describe poop in a dozen different ways
- Feeding tubes = time savers
- Taping breathing tubes to the isolette is an ART FORM
- Putting on your patient’s diaper is origami.
- You’re a master of starting IVs
- You know that ‘Kangarooing’ has absolutely nothing to do with Kangaroos
- You know that a ‘Feeder-Grower’ isn’t a lawn care product
- You take time and have lots of pride in your baby’s well made bed – with bunnies facing the ‘right’ way
- You can change your baby’s bed with one hand, holding him in the other
- You don’t answer to call lights. Instead – an orchestra of 2 or more different bells catches your attention
- You want to call for lifting help once your baby reaches 5000 grams.
- You take pride in round heads
- One look at your baby’s face . . . you already have an initial diagnosis
- You know how to use a sleeve of a newborn shirt as a cool restraint system
- You prepare bath water in a dixie cup
- When getting blood (or anything else) on your freshly made bed stresses you out more than when it gets on you
The talks about extubation has been going around the past few weeks. On Friday, the doctors finally gave us an extubation date of Sunday May 06, or if he extubates himself – whichever comes first. That didn’t happen today – he had a few brady’s yesterday, so they pushed it tomorrow.
It’s been a nice weekend. All his primaries are on their days off – but it’s good to chit chat with other nurses we see everyday. I hear they’re back tomorrow.
I’m hoping all the stars are aligned and the super moon would maximize all the prayers sent his way when he extubates tomorrow. Thank you all for your continued prayers! We’re crossing our fingers and toes that we’ll be able to premanently say ‘Bye Bye ET tube!’
Reaching milestones are the most celebrated things in the NICU [other than giving birth ] I remember doing the happy dance when Luke finally reached 2 pounds. On Friday – I was so happy to see his isolette lid open & found him swaddled in blankets! I’ve never seen him swaddled before!
It’s been 2 days since he graduated to an open crib and so far, so good! I think the nurses are a lot happier because when he’s swaddled – he can’t mess around with his neo bar and his ET tube haha!
That’s an updated picture of his man cave. It’s great not having the need to put our hands through the isolette doors now! It’s Giants season now – so we switched out his 49ers blanket to his black and orange.
In other news – Luke was weighed last night and he came in at 3 pounds, 15.1 ounces. Just 0.9 ounces shy from joining the 4 pounder club! Go Luke!!!
It’s always funny to find Luke making so many silly faces. All these were captured within a 2 minute timeframe.
I was finally able to get a good full body shot of Luke today and thought I’d update the ‘before and after’ picture! He’s growing so fast!!! Here he is at 0 weeks and 10 weeks. I’ve been so excited with his recent weight gain it’s tough to remember how small he was when he was first born.
Hi Everyone! Here’s a summary of what’s happened since the last update.
Shortly after I posted the last update, Luke was re-intubated. We were told it was because of exhaustion. It probably could have been his 2 month immunization shots too. He’s been intubated since and other than being on the vent, there hasn’t been many changes.
To sum up the past few weeks, Luke’s progress has been slow but steady. It’s now normal for my conversations with doctors to be ‘Hi . . . Do you have any questions? and Bye’ because other than his love/hate relationship with the vent, there hasn’t been anything exciting to talk about – and sometimes, that’s what I need to hear. The goal is of course to get him off that vent. Once he’s off the vent – we can move to bigger and better things.
After that scare we had last month, we were concerned about Luke’s activity. Boy, has that changed!! Luke’s been active, awake & naughty. He definitely made up for the lost time he had when he wasn’t feeling well. He’s been awake for longer periods and always has his eyes wide open [like the photo above], contorting his body, kicking, pulling, stretching. . all of the above. In fact, he’s been so active . . . HE EXTUBATED HIMSELF on April 30. He pulled the tube that connects him to his vent. I heard it was possible, but I didn’t think that Luke could/would do it – but that’s our Luke. Feisty. He was given a chance to see if he can go on CPAP again, but the timing just wasn’t right. They’re talking about extubation again – but we’ll see. I just hope that all the stars are aligned and we can finally say goodbye to that machine I’ve grown so used to.
Doesn’t he look so much Chunkier? That’s because he’s grown SOOO Much!! Here are his current stats as of 11:30pm 05/02/12
Weight : 3lbs 11oz [2lbs 6oz gained since birth] He’s almost going to join the 4 pounder club!!
Length : 14.5 inches [3 inches longer since birth]