Just a quick shoutout to the 2012 National League West Champions . . .San Francisco GIANTS! We can’t wait to watch the playoffs with Luke at home!!

Love,

Luke – still your smallest fan!!

Here’s a quick 30 second slideshow from pictures from this past week.

Containment holds are so important to preemies. Some parents don’t get to hold their children for days even weeks. My heart still aches when I can’t hold him in my arms.

I was lucky to kangaroo hold Luke when he was 3 days old. However, there have been some days where we can’t hold him. On those days we get as much containment holds as we can. It’s like stimulating he’s still in the womb – like swaddling with your hands. I knew that this helps Luke – especially lately. He’ll calm down and start to yawn. Then would eventually fall asleep with a few rhythmic pats on his bottom. I’m knocking on wood that he’ll continue to like these holds – they’re really magic. As I was editing this picture of Neill holding Luke:

I laughed because you can tell how much he’s grown. With pictures up close there’s hard to tell how tiny he was. Here’s a picture of me containing Luke when he was about 3 weeks old. My hands are considerably smaller than Neill’s and I was able to hold him within my hands. Now, Luke’s so big, it requires both Neill and I holding him. We’ll take turns holding his arms & legs and the other would caress his head – that’s what Kailani loves to do. Here’s that picture :

It wouldn’t be fun without a Then and Now picture!

Yesterday was a big day for Luke. He had his first [and hopefully the last] surgery. We joined him as he was rolled down to the operating floor around 9am yesterday. The surgery itself takes about 45 minutes – but we didn’t see him come back to the NICU until about 12:30 in the afternoon. The surgery was successful. His G Tube Button [Feeding Tube] is in place and they also performed a Nissen Fundoplication a procedure that would help with reflux. While he was under anesthesia – they also performed a bronchoscopy to take a look at his throat area. If there were any abnormalities, they would have proceeded with a tracheotomy. Thank God, everything seemed normal and there was no immediate need for a trach at this time.

He’s now back in his bed, recovering. He woke up from his sleep around 2pm yesterday and takes sporadic naps here and there. I stayed with him at the hospital and am still here.

While Luke was in the operating room, we had a chance to meet with Luke’s Neurologist and talk about Luke. We’re still trying to gather and absorb information and will post again as soon as we sort things thru. It was a great meeting – we didn’t have much opportunities to speak directly with specialists at Walnut Creek but now, we have a picture of what Luke has gone thru and what his future can look like. We already expected it to be a hard road – but we still stand firm and will keep fighting for as long as Luke lets us.

Please keep Luke in your

I’ve been meaning to post a new “then & now” comparison. Luke’s such a big boy, it’s hard to get a good full body shot to compare with his Day 1 picture. Hopefully we’d be able to snag a stepper from the NICU tomorrow. For now, here’s one from when he was about 1 month old & 5 months old

This picture doesn’t do much justice. He’s gotten really big & fat. Back then, we can contain his whole body with our hands. . now it takes me & Neill combined to keep him contained. HIs “Triple Chin No Neck” doesn’t show here either hehe!

This whole High Risk Pregnancy and NICU experience has truly brought me closer to GOD.

After our conference with Luke’s medical staff – it gave me specifics to pray for. It made me pray harder. I know that GOD is everywhere – but I made it a routine for me to visit the Perpetual Tabernacles around our area. To me, the phone line to GOD is much clearer.

I’ve been asked to publish the novena we use to pray. When Neill and I looked into it – we found the St. Jude Never Fails novena. There have been many posts about it’s power. At that point in our lives it was nice to find something that can help. We are always thankful that He has blessed us with such an angel. A Miracle. With Luke’s recent progress – I can honestly say that his work still happens here on earth.

Here’s the link to Luke’s Novena

St Jude Never Fails

Yesterday, 06/06/12 was my original due date. As far as NICU experiences go they usually tell families at their admission that the baby’s due date is about the time they’ll be getting home. It’s been a long tough road for us so far and Luke is still fighting hard. Although he was ‘supposed to be born today’ Luke isn’t quite there yet.  The news of coming home still isn’t on the table but we’ve learned that TIME is a preemie’s best friend and the family’s worst enemy. He’ll tell us when he’s ready.

My apologies for the lack of blog updates lately. These past few weeks have been the most tummy churning part of the NICU experience. Everytime I sat in front of my laptop to update his website tears would take over. We’ve made tiny Facebook/Instagram/Text/Calls updates here and there but we’ve yet to tell the whole story. It’s one of those experiences that haunt you – that stay in the back of your head echoing and replaying over and over. I always look up to NICU graduates – they’ve been in simlar paths before and it amazes me that NICU babies and their families can take so much!

Let’s get caught up.

3 weeks ago, Luke had another episode that required CPR. This was his 3rd episode where he needed compressions. Like the 2nd episode – he started on Phenobarbital [at a lower dose] and was still on his regular sedation medications. That episode truly took a hit on him. He was rarely awake & fighting. He just didn’t seem normal. The doctors and the nurses saw it. I did too – but I was in denial. I always told myself that he’s just resting because he’s tired – or that he’s getting caught up with sleep. At that point the plan was just to keep him comfortable.

We had a conference with Luke’s doctor [for that week] and his primary nurses that know Luke very well. The days leading to the conference were so hard. I was scared of them to tell us that they’ve lost hope and Luke’s future isn’t as long as we expected it to be. In a way – that’s what it was about. His lifestyle.

• Luke’s Neurological reactions/senses are damaged. He will never be able to suck, swallow, cough, gag – He would never be able to clear his own airways
• Since there has been some apparent brain damage – He’ll need a few surgeries. Tracheotomy and a Fundoplication. But he’s too small at this point to move forward.
• He’ll be on the ventilator forever. Absolutely no extubation.
• He won’t have a normal life.
• Walking is out of the question.
• Luke isn’t progressing very well. Although this news is so bad, we’ll still be here for Luke and we won’t give up.

That conference took a toll on me. As much as I prepared for it – it was hard. I didn’t know what to ask. Each time I saw Luke after that was so hard. I held him every moment I can and tried to breathe life into him.

Soon after the conference, we requested for the Phenobarbital to be discontinued. Should they see signs of epilepsy to go ahead and resume. We wanted him to wake up and snap out of it. That took a few days. Each day I would pray that he wakes up. . . and sure enough the next week he was more alert. He was more needy. He started to act his age. He ALWAYS wanted to be held!

I started keeping track of little things. How many times he needed suctioning. How long he would be awake for. What he doesn’t like. What calms him down. I started seeing progress!! He was tolerating the change in his vent settings fairly well. Then last week – the rumor coming around was that they were going to try to extubate Luke! That’s what we wanted. What we prayed for. To give him a chance! He extubated himself last week – but he wasn’t ready just yet.

On Sunday June 3 2012 @ 1pm – LUKE WAS EXTUBATED. After +/- 105 days on the ventilator he was extubated! He skipped the normal path of SiPAP/CPAP and I was really glad they went that route because Luke pulls on anything around him. There would have been so much trouble keeping a proper seal. He’s still on High Flow Nasal Cannula @ 6 Liters. Currently he requires 35-45% oxygen and tolerates when the nose prongs are misplaced every now and then.

Today would be day 5 of extubation and so far – I believe he’s doing great!! He seems to chase his breaths as the days go by. It’s so much easier to take him in and out of his isolette to hold him when he’s fussy. Luke sure does enjoy the freedom of Tube Free! He can twist his head and move all he wants

Luke currently weighs 5lbs 2oz 

Thank you all for your continued prayers and positive thoughts! We’re not out of the woods yet – but tomorrow looks so much brighter!!

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

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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!

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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

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Happy nurses

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!’