I know there hasn’t been many posts [please believe we've got great news coming up!] but I couldn’t wait to share his first Sunlight Privilege with you all! We haven’t heard of outside privileges for NICU babies while still hospitalized. When we had his last meeting with his care providers, we asked if it was possible. Since Luke’s been so stable and so close to going home [hint,hint] they obliged! We were restricted to staying within the NICU perimeter and but we were able to walk out to the patient patio area!
Since learning about how cool it would be to take him out, we started to look for a stroller. It took us a lot of time researching the perfect system. We probably did more research on this than his car seat. For Luke who is oxygen dependent and has secretion problems, we knew we needed a stroller that has a bassinet, can lay flat & at an angle, easy to maneuver, light weight, can grow up with him & is an overall good investment. I remember the days when I struggled with Kailani’s stroller. We chose the Bugaboo Cameleon stroller system and was lucky to find the discontinued Brown/Green Paul Frank Fabric Fabric Set. I can talk about his stroller more – but I figured a lot of NICU/Preemie/Special Needs mama’s read this – so I thought I’d just go thru it briefly. Best investment ever! I love how it looks, how it rides and how there’s so much more room for Luke to grow in his bassinet.
On to the stroller ride!!
It wasn’t so exciting at first. . Luke’s been pretty fussy when not held – so to put him in an unknown territory was challenging. Luckily, there were plenty of us by his side to steer the stroller and the oxygen tank and take plenty of pictures!
I realized that this is his first “real outside experience.” The last time he left the NICU was when he was in the mini transport isolette. He really didn’t know what was going on
We went out around the time when Lunch was being delivered to the mommies on his floor. . . so he got to smell lunch!
After a few laps around the Mother & Baby Unit, he realized going out is a fun thing!! Here’s his I’M FREE!! face
And of course, a milestone isn’t complete without a photo op! Here’s Neill, Ninong Chris, Papa and Luke!
Thank God the weather in Walnut Creek has been so great lately – and we can’t wait to take him out for more Vitamin D!
While waiting for the Luke to come back from the recovery room, I thought I’d share his first outdoor experience. Like I mentioned on Monday, Luke’s never left his bed in the NICU. Most parents get to take their babies home a few days after birth – but we’re still here . . waiting for 163 days [but who's really keeping track.] It was great to be with Luke and see him catch a ray of sunlight.
He was transported in an ambulance [no, he didn't need sirens.] Along with a team from his NICU. The ride was about 20-30 minutes long and traffic free! We followed Luke all the way thru. Here’s pictures to share!
LUKE CROSSING “THE LINE”
DESTINATION : OAKLAND
THE CALDECOTT TUNNEL
I think I was more nervous than what I should have been. The ride went smoothly, and we arrived safely! My nerves were all over the place.
We’re still trying to get used to Oakland. I think we were a bit spoiled at Walnut Creek.
OUR LATEST FAMILY PICTURE
Hi! I just wanted to post a new family picture taken by Luke Primary PM nurse, Sherry. Thanks for such a great shot!!
MY FIRST FATHER’S DAY
While Daddy & Kailani sleep and I stay wide awake gave me the perfect opportunity to write a nice little post. I’m working on an update & will post that tomorrow as soon as I know what this weeks plans are.
I know that spending father’s day in the NICU is hard. I felt that way on Mother’s day. Luke’s been pretty stable – but he did have a few Brady Bunches aka Cluster Brady’s. That didn’t stop him from playing with daddy & lifting up his head [His new trick]
His nurses did such a good job making a scrapbook for Neill. All complete with his footprint! Amazing how big his feet grew!
. . . and Father’s day isn’t complete without a picture with the kids!!
FATHERS DAY IN THE NICU
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.
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]
Just a quick post. I’ve updated the MY PICTURES page! It required an amazing amount of patience and concentration! It’s not perfect, but at least I finally got some pictures up. Enjoy!