NICU Tip: Leave a camera!

I’ve been lagging on posts lately as we try to get things ready for Luke here at home. I’m pretty superstitious about announcing the “BIG DATE” because there have been a few hiccups here and there :) When we get a new date – we’ll be posting 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!!

MY FIRST STROLL!

 

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!

 

Today is Surgery Day

 

This picture was taken earlier today before Luke was rolled down to the ER. The plan is to do a bronchoscopy to determine if he needs a tracheostomy. They’ll work in his G Tube [button] feeding tube into his stomach and performing another procedure called a nissen fundoplication – where part of Luke’s stomach is wrapped around the esophagus to prevent refulx.

Will post again as soon as we get more news and pictures.

 

Thank you for all your prayers!

An Emotional Roller Coaster Ride

PHOTO CREDITS TO http://ingosphototips.com/

PHOTO CREDITS TO http://ingosphototips.com/

As much as I wanted to only post the fine and dandy updates, I also want to be realistic. We’ve got family and friends always excited to see what’s new with Luke, but I know that there are alot of ‘virtual’ friends that pass by from google searches for 24 week preemie success stories or moms that follow my link from forums I’ve joined. I would never want any other mom to go through what I’m going through, but if you’re a preemie mom like me – please read on to hear what really happens in there. You’re not alone. After the series of events that happened I googled too. I wanted to know. I wanted to know that he’s going to be okay – but little searches led me nowhere. Before the events of yesterday goes into blur, I wanted to share it with you.

Having a baby in the NICU for the long haul like Luke is a like being on an emotional blindfolded roller coaster ride. There are plenty of complications but there’s also milestones. Sayings like, “It’s an roller coaster ride, be ready” or “Take it one day at a time” or “Two steps forward, one step back” are always said in the NICU – they are all true. I can never find the emotional stability. My day is wrapped around how Luke’s doing. . and so far, I’m at a pool of overused nerves. Anyone who knows me well, knows I absolutely HATE rollercoasters. I hate the weightless feeling and that drop that feels like you left your heart 10 miles up top. I’d trade my ticket anytime to go in a pretty merry go round – but I’m strapped on and the ride has barely started. I know that soon enough things will calm down and we’ll all enjoy the ‘after ride pictures’ and know that I defeated the ride I once was terrified of.

Going on to what happened on Friday. Times are not absolutely accurate – but it’s there to show what happens within a few hours.

Before I start ‘my timeline’ I’d like to thank ALL of Luke’s Care Team at Kaiser Walnut Creek. We love you all and can’t thank you all enough for what blessings you give to our Luke. We couldn’t do what you do and we’re forever thankful for everything. We are well aware that things can and do happen. We’ve entrusted our son’s life with you. We can only imagine the stress of responsibility you bear coming in every day. Best believe that your work has and will always be nothing short of AMAZING.

10:00am – Checked in to see Luke. It’s been a while since for me to be at the NICU this early but we were there camera in hand to meet the Easter Bunny that hops by before Easter. His Oxygen level was at 35%. Pressure was at 25 [?]

11:00am – He was on the vent, and his settings were AWESOME! It’s been a while since his Oxygen% was down to the 20′s range – but he kept Satting High – which means they’ll lower his Oxygen level so he doesn’t get an excess of Oxygen he doesn’t need. Around this time, the Oxygen level was at 29%

Dr. Mac came by to check on us. She went on and gave me a summary of what’s happened since we last talked to her yesterday. She was so happy about his numbers and told us that he was going to be extubated TODAY!

12:00pm – Luke just received his 11:30am feed and they were going to set up his extubation. We took advantage of that time to run and grab lunch, go home and try to take a nap [which I wasn't able to get]

2:30pm – Luke was extubated and was then on SiPAP

5:00pm – Neill just got off work and visited Luke. He wasn’t able to immediately come in because they were working on getting another PICC line placed since he was going to be on another 7 days of antibiotics. PICC line attempt wasn’t successful.

5:30pm -  Luke was pretty stable. Neill then Kangarooed [Held] him for about 30 minutes and was able to calm him down. Luke was really fiesty after the PICC line attempt. He wasn’t able to hold him for that long because he started to brady. He must have been too exhausted.

6:00pm – I came back with Kailani and Dad. Neill just finished Kangarooing Luke and Luke looked wiped out – he just wanted to take a nap. Considering he didn’t do so well the last time he was on SiPAP, his levels looked great. His Sat’s were 80-90s at 45% oxygen. He looked much more comfortable than the last time he was extubated. I thought that things were looking a little brighter.

8:45pm – Kailani was getting a little sleepy and I was getting hungry. I waited for his sats to be in the 90′s before we leave. The RT was getting ready to do his treatment and he’ll soon be ready to eat at 9pm. Gave his nurse Sherry a hug and hoped that this time around is better.

9:00pm – Neill received the dreaded call from Kaiser. I requested for them to call him first – especially if it’s ‘bad/urgent’ news. I can’t handle those emotions and I’d breakdown. I know myself too well. They requested for us to come back to the NICU STAT.

9:05pm – Neill called me. I was 5 minutes away from home. He told me to go back to Kaiser and to meet him at the parking lot. I asked if Luke’s okay – he said he didn’t know. I started to cry. My knees were shaking and I couldn’t drive – but I had to. I exited the freeway and headed back to Kaiser. Tears in my eyes, I prayed so hard – Wishing that my baby is okay. I tried not to think of the worst, but I couldn’t help it.

9:20pm – Got to Kaiser. Parked at the first spot that was opened. Went outside of the car and held Kailani’s hand really tight and prayed together. She started to cry too.

9:30pm – Neill got to the parking lot. We all held hands and didn’t say a word. I don’t ever remember his hands being so cold.

9:45pm – Walked into the NICU. Washed our hands. Peeked inside and saw Luke’s section curtained. White curtains without us there = BAD. My knees were so weak. I tried to sit down, but Neill got up and started to talk to Dr. Fisher – the doctor that was taking care of Luke last week. All I absorbed from the talk was something like

Soon after mom left, Luke clamped down. His heartrate dropped. When it drops in the 60′s he needs compression ‘CPR’. He coded. It took him a while to get back up – about 10-15 minutes. We had to reintubate him. They just did Xrays.

There was a lot of exchange of information, and I didn’t absorb it all. I just wanted to know if my son was alive. At that moment, I could care less of what happened or why. I just needed to know that he’s okay. That he’s breathing. That there’s still a heartbeat. Since my pregnancy complications started I always lived by the saying “Where there’s a heartbeat, there’s hope.”

I went back to the NICU chairs and I spaced out. I can’t remember who was there. Who was comforting me. I know that everyone was there for us. Soon Neill came back to me and I stood up and hugged him. Then I remember that he told me he’s alive. That his numbers are okay now. I didn’t care about him going back on the vent. I was just so relieved that he was okay. It was so emotional. I felt that Sherry was around there, and I heard sobs that I haven’t heard before. I wanted to hug her too, but I just felt faint and lifeless.

Neill brought me to see Luke behind the curtains. He was getting some blood drawn but he was there. He didn’t look like the same baby I just left an hour ago. I couldn’t remember which nurse maneuvered me to come closer – that it’s okay to touch him. So I did. He felt cold. I continued to sob. I remember being so thankful that he’s still with us yet felt horrible because he had to go through that. I gave him a kiss on his head to try to transfer my strength onto him.

I then knew that Sherry was behind me and comforting me. I could feel that she felt the same way I was feeling and that she did her best and that we’re relieved that he’s back. I wanted to hug her again, but the stillness in my knees couldn’t keep up with the thoughts running in my head.

While we were there – his Sats were at a steady 93%. It’s so weird not to see him swing like he normally does – but he’s just gone through alot.

The time there flew by too fast. There were many things going on. We listened to the bedside shift change report and talked to multiple doctors and nurses until

1:00am – We finally decided to walk like zombies and go home.

I really don’t know what’s going to happen now. I just know the plan is to observe him for the next few days to see how he recovers. We were there today, and he was just still.

I know that the days where he’ll squirm and open his eyes and smile will come back soon.

Thank you all for your continued thoughts and prayers. They always strengthen us in this crazy ride. 

MY FIRST SMILE :)

“]LUKE'S FIRST SMILE [photo by Daddy]  

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!!

1 MONTH OLD!! 29 DAYS – 28 WEEK 6 DAYS GESTATION UPDATE

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:

  • Feedings are going really well. He’s up to 10mls per feed and is taking in 8 times a day. He’s getting 2 teaspoons of milk! We’re finally in the double digit zone!!
  • I haven’t asked for his weight recently, but the most current one I have is 1lb,9oz. That could have changed since he was retaining water.
  • He was back on a low dose Dopamine for water retention. It worked because he had a few good overflowing diapers the shift after.
  • Blood Pressure was a little low last night. His MEAN was @ 11. His goal was 23. Since his blood pressure was low, he received his 5th blood transfusion last night.
  • Since he’s growing a lot more, and his ET tube has been in for more than 3 weeks, there’s a leak around it [something that's expected.] They don’t want to take the tube out and re-insert, so his team is working really hard to keep it there until he’s ready to be weaned off the vent.
  • He’s been using a lot more oxygen [60-70% range] yesterday – but after the transfusion, he’s back in the 30′s.
  • He’s only getting blood gas tests [to check CO2 levels] once a day now. It used to be every 6 hours last week! Docs & RNs would adjust his Respiratory Rate depending on his results.

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!

WE MISS LUKE’S CRY – A VIDEO!

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.

DAY 10 – 26 WEEK 2 DAY GESTATION UPDATE

LUKE BALDOMERO 10 DAYS OLD

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.

DOPAMINE DISCONTINUED 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.

  • He had his Echocardiogram to see if he has PDA. The plan was to have him on a special dose of ibuprofen if he had PDA, but he’s CLEAR! Dr. Cooper, Cardiologist, performed his echo.
  • Goal is to restart his feedings now that his dopamine stopped. Hydrocortisone was helping out.
  • He received his 2nd round of blood transfusion & no reported reactions.
  • NPO

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.

BOUNDARIES

Image

Preemies like Luke can get easily stimulated. Stimulation isn’t necessarily a good thing because it can stress a baby out. As much as I would love to caress him, his skin is still too fragile.
Babies his age need to feel boundaries, just like they were in the womb. A steady light pressure over him lets him know that this touch is LOVE. On days like today where he’s too tired from procedures, I spend short periods next to his isolette like this.

VISITING LUKE

Hi Everyone,

Luke’s in Kaiser Walnut Creek NICU and they have a very strict visiting policy.

  • Mother or Father needs to be there to facilitate visitors.
  • There can only be 1 visitor at his bedside each time.

Visiting depends on how stimulated Luke is & how busy the NICU is. Please call or text Michelle or Neill to coordinate a time you would like to visit. We try to get visits organized – but with Luke, things happen unexpectedly and may need to hold off on visitors.

Our phones have bad reception while we’re in the NICU and usually don’t get any messages until we leave, but we’re able to access our Google Voice text messages via wifi.

Michelle posts check in’s when she’s at Kaiser.