Hi! I just wanted to post a new family picture taken by Luke Primary PM nurse, Sherry. Thanks for such a great shot!!
Hi! I just wanted to post a new family picture taken by Luke Primary PM nurse, Sherry. Thanks for such a great shot!!
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!!
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!!!
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!
Our friends at Kaiser know that Luke gets mini photoshoots everyday. We usually come home to unload 100+ pictures. I also know how much everyone likes seeing his pictures!
Neill’s been the primary photographer. After getting a few pointers from Sherry, he’s been getting great shots!! It’ll be really hard for me to upload all the pictures onto this website, so I’ll try making mini 30 second snippets every now and then. Let me know how you like this one!
These past few weeks have been hard. I almost didn’t want to document his progress because writing about things makes me relive the moment. But it’s only right to finally update everyone that’s reached out to us. I’m very sorry for the delay – but here’s how it’s been.
Since Luke’s episode on Friday April 6, we’ve been going down a pretty tough road. Soon after what happened, we got a call later that evening saying that they suspected seizures. They immediately started Phenobarbital and added a new Brain Scanz Monitor to look for seizures. Since Luke was still very young [he was 31 week gestation age] it’s hard to tell if anything has or is happening. They stopped the Brain Monitor a day later because they didn’t find anything significant. He still continued the Phenobarbital.
It was very hard not to see Luke as his normal self. He looked tired, didn’t really move, his eyes rarely opened and didn’t fight back any poking. Those were one of the hardest times to be a NICU mom. Holding him was also not an option – so most times, I just stayed by his isolette and did what I can with containment holds. We thought that he reason he was so tired was because of damage from the episode, but Luke’s nurses and doctors reassured us that Phenobarbital is such a strong sedative – and to try not to think about the worst. He also had problems swallowing his saliva. Celeste told us that maybe it’s because of all the extubation/intubation he’s had – - figures, I’d have a really sore throat too!
Breathing wise, Luke’s no longer a swinger. His O2 sats have been holding a steady number. He was doing really great and his doctors finally ordered his to go off the vent. This would be his 3rd try at extubation. It was almost the perfect setting. All his primary nurses would be there for that day. It WASN’T Friday the 13th. There was no major things happening. His PICC line was already in place. We didn’t hold him yet. All aspects were clear.
Soon before the extubation, he got several pep talks from his nurses. Celeste and Erica told me all about it! It was great to see other nurses peeking into his isolette to see how he was holding up on SiPAP and sending him good vibes from afar. Luke’s Primary AM nurse, Celeste, sent me a picture of him a few moments after extubation.
He was officially extubated on APRIL 12 2012 at 10:30am. He was on the vent for about 43 days.
Maybe it was superstition, but they kept the vent machine there and didn’t take it away immediately like the 2 times. I didn’t want to share the news like last time – so I didn’t call/text/facebook/instagram/tweet about what just happened. I didn’t want it to turn out the same way.
Things have been a smooth slow progress since then. Phenobarbital was discontinued on Friday, April 13 2012. Neill was able to Kangaroo him since he was stable. I was too scared to hold him.
Soon after the Phenobarbital was discontinued, Luke started to be a lot more active. His eyes would open longer, he would smile more, and he’ll fight like he always has. It was the Phenobarbital! Or maybe it was the rest he’s got since that Friday Night.
4 days after his extubation, on April 16, 2012, we heard him CRY!!!! That was the most precious sounding complaint I’ve ever heard!!
He’s been requiring less oxygen on SiPAP and his assisted breaths per minute droped by 5 each day. After 5 days on SIPAP, on April 17, he was switched to CPAP – the first machine he was on when he was first born. Nosebreaks are a hit or miss. Sometimes he’ll do great, other times, he won’t tolerate them. They’re considering starting a high flow nasal cannula soon – especially because none of the pillows or masks provides a tight seal around his little button nose.
He hasn’t had much problems with feeding. In fact, the nurses are always excited to report that Luke’s NEVER missed a feed and fusses when he doesn’t get his food in time! They discontinued his PICC line on April 17 also. He was almost at full feeds and didn’t need a TPN to provide extra nutrition. Yesterday, on his 2 month birthday, he officially started his full 22ml feeds!! He’s back!!
Before Sherry left for her days off, her words to Luke were “Nothing but good days from now on, Luke!” We all hope for the same! Here’s a picture of Sherry giving Luke a pep talk!!
As always, thank you all for your continued thoughts and prayers during this so called roller coaster ride. Now that internet isn’t an issue – I’ll be working on more frequent posts – and I hope to collaborate with Neill to get his perspective.
Hi everyone! Sorry for the lack of posts this past week[s]. Things have been really busy on our end. . but we’re back!
This past week in the NICU has been SUCH a ROLLERCOASTER!
Now for some Milestones!!
After he was re-intubated, things started to drop even further . . .
Other things to note. .
For the most part, Luke’s been stable. They’ll look at extubation within the next few weeks. He really just needs to grow. He hasn’t had much deep sleep lately. . but we need him to grow. Once he’s a little bigger, breathing would be easier. Once he’s back at extubation levels, we can then concentrate on other milestones.
Thank you again for all your thoughts and prayers.
Keep praying . . . we’ve still got a long way to go.
His first milestone: A BIG SMILE!!
On Sunday, we attended mass at St. Mary’s. Going to church is becoming easier for me now [will post about that later] and I prayed to let me hold my son again. Sure enough, as soon as we walked in to the NICU, they said I can! It felt like it’s been forever since I got to snuggle with him!
I was super excited to hear from Celeste, one of Luke’s primary RNs, that I can FINALLY hold him in my arms again. Since there were some minor things to consider – like levels were unstable, dopamine, babying the Arterial Line, Infection – we refrained from holding him outside of his isolette and tried ‘containment holds’ as much as we can. We also refrained from pinching his toes and thighs alike
The process of taking him out of his isolette takes 2 people for now. There’s a bunch of wires and tubes that need to move with him too. So when I Kangaroo him, I try to be in a comfortable position for at least an hour. While I was holding him, Neill took a bunch of pictures, and this one immediately caught our eye. It’s a smile! I’m sure he was excited as I was when we finally got to feel each other. He needed it as much as I did – and it shows!
When we were at the NICU today, we asked nurses if it’s too early for him to smile. They said “It’s possible, but can be gas.” Haha! So I showed them this picture – and they said – “It’s a smile. It’s confirmed. He doesn’t have that grunt look or wrinkles on his forhead.”
Gas or not, this face is worth a million bucks!!
Luke is 1 month old! It’s really crazy how time flies. We’re thankful each day for such a precious miracle.
Here’s his current stats:
That’s all I have to report for now. We’re still trying to keep visitors at a minimum, but let us know when you’d like to visit and we’ll coordinate from there.
Thank you all again for your thoughts, love and prayers.
Prayers do work wonders!
When I posted about how I was doing, I mentioned how hard it was not to hear Luke cry. 99% of babies born at 24 week gestation have vents placed in the delivery room right after birth. Luke did so well during his honeymoon period – a period for about a week where Preemies do really well before a real decline is seen. We were really lucky to hear him cry.
Neill received a call on 02/25/12 when Luke was 5 days old in the middle of the night. The doctor said that they were going to start him on a ventilator. I asked Kaiser to call Neill first whenever there’s anything ‘wrong’ with Luke – because Neill receives news over the phone much better than I do. When Neill explained what was happening to Luke, I understood that Luke’s tired and he just needs some rest. The so called Honeymoon period everyone told us to be aware of was ending. I quickly googled what happens to babies that are on vents and soon found out that we won’t hear Luke cry for a while. The ET Tube passes down his vocal chords thus preventing the ability to make sounds. Neill was working his graveyard shift and I was home alone. I started to cry and replay the movie posted below.
I play the movie over and over again just to hear how it would sound like if he didn’t have his vent. But it’s also something to look forward to when he’s off the vent. When he’s back on CPAP, he’ll be alot bigger than he was here.
Happy 3rd Birthweek Luke! How time flies!
Remember the weekly comparison I posted on day 7? I realized I forgot to post one for the 2nd week update! OOPS!
Neill, Sherry [Luke's Nurse] and I were talking about how big a differnce a day makes. It’s almost like looking at a completly different baby! Now that I’m looking at the 0 week & 3 week comparison – he’s changed a bunch! Here’s luke’s progression :
0 WEEKS OLD
1 WEEK OLD
2 WEEKS OLD
3 WEEKS OLD
. . . AND FOR THE “THEN AND NOW”
The recent update from Luke’s doctor on Sunday was Luke’s reasonably stable. Updates like those of course can change any minute. We’re still praying that Luke remains ‘reasonably stable’ the next few days. Here’s his most recent update:
We’re very thankful we’ve had some pretty good days lately.
Luke’s hanging out. His recent visitors noticed how comfy he looks. His NICU Nurses are taking great care of him! They always leave me at awe - They’re so meticulous about making sure his little bed is formed to accommodate his position, making sure that every crevice fits him so perfectly. His bed reminds me of a combination of a waterbed & therafoam mattress.
An important milestone: He’s off dopamine!!!!! His dopamine was set at the max of 20mcg the night prior and tapered down as his MEAN stabilized. His Nurses, Jennifer and Maggie discontinued it at 3:30pm right after the shift change report. The dopamine machine wasn’t able to go any lower than 3mcg settings, so off it went! I left last night at 11pm to go home and do laundry, so far dopamine’s still off! We pray it stays off.
What is that round cloth over his head you ask? It’s called a scent pad. They recently started this at Kaiser Walnut Creek. It looks like a breast pad, but it’s actually a cloth that is kept with me to pick up my scent. I can’t be there for him at all times, so this would help him recognize me. I have a few of these and I switch them out as I can. He smells me, then I sleep with his. I like his smell. Smells like his isolette, but that’s his scent right now. It also blocks out the light since babies this small are sensitive to light.