The past few days have been so overwhelming for our family. Luke has spent the most beautiful 219 days here on earth. He grew his wings and flew straight to heaven on Wednesday, September 26, 2012 at 11:05am

Services for

LUKE GERARD BALDOMERO

Saturday, October 6, 2012

4pm-9pm

Public Viewing at Duggan’s Mortuary

500 Westlake Ave Daly City, CA 94014

Sunday, October 7, 2012

4pm-9pm

Public Viewing and Vigil Service at Duggan’s Mortuary

500 Westlake Ave Daly City, CA 94014

Monday, October 8, 2012

Funeral Mass

11am

Our Lady of Perpetual Help Catholic Church

60 Wellington Avenue, Daly City, CA 94014

Interment

Holy Cross Cemetery

1500 Mission Road  Colma, CA 94014

Please wear white.

Memorial Mass and Celebration of the Life of Luke Gerard Baldomero

199 Brandon Road, Pleasant Hill, CA 94523

Date and Time to be announced

• Flowers to be delivered to Duggan’s Mortuary before 11am on Saturday, 10/6/12

Love,

Luke – still your smallest fan!!

When I started this blog, I had plans on writing a long post about Luke’s homecoming. We weren’t able to update the blog as often as we wished with the preparation of him coming home – but I’d like to share [what I remember now!]

Looking back, the thought of him coming home was so surreal. We always wanted him home with us – and to be honest, we were scared and never felt ‘ready’. We had a talk with one of Luke’s doctors and were shocked to learn that Luke would be ready in about 3 weeks!! Luke was then a few weeks post-op so after all the drama we’ve been through – it was shocking to hear that our little boy’s coming home! There were TONS of things we all needed to coordinate before his discharge and eventually I’d be sharing a lot of what I learned in the process. From that point on, it felt like we were on the phone/meetings/classes non stop while Luke continued to strengthen.

We had to complete classes like infant CPR, how to use all his equipment and how to take care of his GTube. We also had to make sure we had all the supplies needed to take care of Luke. We also had to prepare home – which we haven’t prepared for Luke ready. We were very superstitious about setting everything up!

As Dday came, Luke spiked temperatures TWICE. It almost felt like a tease  . . but it felt good to say goodbye to everyone we possibly can. Lol!! All the NICU staff [Nurses, Doctors, Admin Staff, Social Workers, Security Guards] all felt like family during our almost 7 month stay. Saying goodbye was so bittersweet because we couldn’t have a better group of family to stay by our side thru all the ups and downs. After Luke spiked a temperature the second time, we decided not to tell ANYONE outside of the NICU we were going home. We didn’t want to jinx his homecoming. . and 3rd time was a charm! It was so nice to call/text/email/instagram/facebook/facetime everyone that Luke was finally home!!

So far, things have been good [knock on wood]. We really miss all his Aunties and it feels like the safety cushion isn’t there – but we’ve had 7 months of training on how to take care of Luke. We don’t have the same monitors that kept up paranoid – but we’re managing. Luke’s Luke. He has his good times and he has his real fussy times. We’re tired as we expected and are really thankful that Neill’s parents took a week off to help us adjust. We’re starting to learn what he likes here at home and what he doesn’t – he absolutely LOVES watching football/baseball with daddy. I think it’s because he likes seeing all the pretty colors haha!

Taking him outside was a little bit of a challenge. So far, we went to 2 different doctor visits and the second time went a bit smoother than the first. Hopefully we’ll find our groove soon – there’s so much to lug around!! I almost died the first time!!

When Luke was discharged, he weighed 9lbs 2oz. . and yesterday he weighed 9lbs 14oz!! He managed to gain 12oz in less than a week!!

We’re always so thankful to hold our little miracle in the comfort of our home and thank everyone from the bottom of our hearts for all the continued prayers you all have sent Luke’s way. He truly is a testament that God’s work prevails!!

We’ll be writing more soon!!

For the meantime, I’d like to share a few things I’ve learned in the NICU. We’re currently on day 203 and as much as we don’t want to brag about it – it feels like we’re pro’s at this NICU thing. It’s really nothing to be proud of really. Each day we wish we were home . . but we know that God had a reason for us to stay there for a long time – and maybe it’s to help other NICU families out! Each day we learn something new – from taking care of Luke, to anatomy, to ways to calm down a baby, to our nurses favorite past times, to finding the best time to find parking!

One thing I wish I did sooner was to have a camera with Luke. We take alot of pictureS of Luke while we’re there – but we’re not there 24/7. The reality is we still have home, a daughter, laundry, work, appointments and another life outside the NICU that still carries on. I wish I was there more than I can be – but it’s true that you need to take care of yourself and your family to take care of your NICU baby. If I did stay as long as I thought I would, I’d find myself so tired and stressed because things don’t take care of themselvs. If you’re a mom who can drop everything and stay in the NICU for the length of your child’s stay – I applaud you!!

For the times we weren’t with Luke, his nurses took pictures of him. We left an easy to use point & shoot camera in his diaper drawer. It’s easily accessible when they want to take a picture of him & whenever they change his diaper, it’s a good reminder that the camera is there for them to use. It’s not a requirement for them to take pictures – but some just love capturing the moment! Whenever I come back to see Luke, I like to see what’s in the camera. It’s something to look forward to each time we come in! It’s also great to have the camera there in case we forget our camera at home.

When leaving a camera:

• Write on your communication board that you left one for the nurses to use. I didn’t get a chance to speak with all the nurses, so we wrote a love letter that the camera is there for them to take pictures of Luke.
• Label your camera. Just in case the camera moves – they know who it belongs to.
• Time Stamp the pictures. At first I didn’t do this – it helps to see when the pictures were taken & to thank the nurse that took the picture!
• Always have backup batteries/memory card handy. There was a day where there were many photo op’s but the camera died!
• Make the camera easy to use. I’d love to leave a DSLR to take quality pictures – but the nurses usually only have one hand to spare. I left the settings on our camera on AUTO with no flash. The light in the NICU is sufficient enough to take good pictures. There’s photoshop to fix your pictures later on!
• Have a camera that can take videos! There are a few videos that crack me up!! I know later down the road Luke will be watching those videos and he’ll hear familiar voices!
• If you don’t have a camera to spare, don’t splurge on one! The camera we left was the camera I wanted to keep in my diaper bag. We got that on sale for [$30-$60] and it uses regular AA batteries. If the battery is dead, we just swapped it with new batteries. No need for a charger! A disposable camera is good too, but you’d have to get it developed. I’m too lazy to bring the camera to target lol.

We started leaving the camera in April. I recently emptied the memory card and there were 500 pictures!! I couldn’t share all the pictures with you – but here are some of my favorites!!

LUKE’S SMILES

LUKE’S CUDDLE SESSIONS WITH HIS NURSES

LUKE’S FIRST BATH IN A TUB!

ACTIVITY TIME!

he wasn’t a fan of tummy time lol!!!

LUKE BEING LUKE

AND WHY NURSES SHOULD WRITE A BOOK OF 1,001 THINGS TO DO WITH A BABY BLANKET. They sure know how to make a blanket work for Luke!

It’s a little hard to tell on this picture, but his nurse S was able to incline the base, make a stopper so he doesn’t slide all the way down and side bumps so he’ll sorta stay in place!!

This one’s cool too!! It’s a baby lounger! Luke was able to kick his feet around.

Thank you to all the Nurses that continue to take great pictures of Luke!!

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!

Since Luke has been transferred back to Walnut Creek post Surgery & MRI – he’s been going through a lot of changes! Each time I look at him, I’m just so thankful for all the wonderful prayers and blessings that have been sent his way. He’s trucking through and is so far doing great!

He was EXTUBATED [the breathing tube that was once going down his throat was pulled out] and is now on a High Flow Nasal Cannula. Currently his settings are at a flow of 6 and uses between 35-45% oxygen. Sometimes it’s hard to get a good reading on his o2 sats because he tends to move alot and sometimes it doesn’t pick up well. This is a HUGE improvement for Luke because a few weeks ago, he was requiring a much more significant amount of oxygen on the ventilator.

Feeding wise, his new GTube is healing. He was on 24ml/hr continuous feeds. Now, they’re trying out to see if he can tolerate bolus feeds. He’s not on complete bolus yet – but he’s working on it. Right now, he’ll ‘eat’ for 2 hours, then would rest for 1 hour around the clock. The goal is to get him to about 45minutes-1hr feeds.

It’s been a while since I sat down to listen in to the shift change reports and I’m really glad to see his medication list has gone down quite alot. The last time I spoke with his doctor, he told us they’re working on weaning him off a lot of medicines Luke’s had since he was a new born. Little by little!

Luke’s alert and awake more. He loves to play with his toys that hang from his isolette. We’ll be trying to see if he can start sucking. Right now, he just tends to bite. . . hard.

It doesn’t seem a lot but these changes are really amazing! It’s what we’ve been praying for and continue to pray he just goes up hill from here.

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!

Time for a quick update!!

Luke’s recovered from his surgery and was well enough to go back to his ‘home’ NICU in Walnut Creek. The staff at Oakland has been wonderful – but having Luke closer to home is something we look forward to.

Today was very eventful. We quietly celebrated his 2 month adjusted birthday. He was due on June 06, 2012 – and he would have been 2 months if he stayed long enough to bake.

In preparation for his MRI, they started another IV line and discontinued feedings at midnight last night. He was transported via ambulance to the MRI clinic next door. He did well during his MRI – he didn’t need anesthesia! That’s great for us to hear, because Luke gets pretty active when he’s awake. After his MRI – he was transported back to his home NICU in Walnut Creek.

He’s on very minimal vent settings. They’re the lowest they’ve been in a long time. Considering he just went thru surgery – I’m so happy to hear he’s not in that much distress and was able to wean off the vent even more. Last night’s setting were : 21% oxygen [room air] Vent was set at 18/6 at a rate of 20bpm. We’re hoping they would consider extubating soon. Pulmonary Hypertension is out of the picture now [crossing fingers]. His PH caused distress during his last extubation. I think he’s ready. He’s pulling at his ET tube every chance he gets! He moves like the tube isn’t there – he’d turn his head and reposition himself

Feeding wise – he’s on continous feedings at 24mls/hr, fortified with 22calories  [a 2ml increase since he had surgery] and is tolerating his feedings very well. He’s not eating anything thru a bottle. Everythings going through his feeding tube that was placed last week. He did have to temporarily stop feeds for the MRI and transport but I’m sure he’ll be back by tomorrow.

His current stats:

• Weight : 8lbs 0oz – he did loose some weight the past few days after recovering from surgery but he’s gained it right back.
• Length : 20.5 inches – I haven’t gotten a hold of his past measurements in a while – but with him being readmitted – we were there when they measured him! He’s grown 9 inches since he was born.

Extra picture This was taken when I was giving him a pep talk. I know he understands me when I tell him he’s so brave, so strong & so wonderful. It’s so great to see him study my face and recognize when I talk to him – and I tell him everything. I constantly remind him that GOD is watching over him and there are so many people praying for him and that we’re thankful for every minute he’s here to live his story.

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