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!
MY PICTURE PAGE UPDATED!
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Monthly Archives: April 2012
Where are all the pictures?
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!
DAY 68 – 33 WEEK 2 DAY GESTATION UPDATE [post 04/06/12 events]
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.
An Emotional Roller Coaster Ride
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.
OUR FIRST FAMILY PICTURE
Thanks Sherry S [Luke's Primary PM Nurse] for taking these pictures!! It looks like Luke was smiling too!
DAY 41 – 30 WEEK 4 DAY GESTATION UPDATE
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!!
- He’s officially 2 pounds!! After a few weight drops and gains, he’s been at a consistent weight of 2lbs (3-4 oz)
- He’s gotten longer! His last measurement was 12.5 inches! [That's like a $5 footlong plus a bite]
- He no longer needs TPN! He’s getting FULL FEEDS [via GTube] and doesn’t need any IV Nutrition like he did 2 weeks ago. Most his meds are oral [via GTube] now too and Dr. Fisher says he eats like a champ! Currently, he’s feeding 20mls of pumped milk which is fortified with 30cal – a little umph needed.
- For the most part, Luke was “Lineless” – He didn’t have a PICC line, an Artery Line, a PIV or an IV! He looks so different without his ‘extensions’
- Since Luke was getting a little bigger, his vent was getting smaller. Over the course of last week, the talks of extubation came about. He had a big leak due to his small ET tube but they tried not to extubate then reintubate. They bit the bullet and tried extubating and was on Si-Pap [a version of the CPAP he was on when he was born.] It took him a while to adjust to the new help. It’s not like the vent – where the vent did the work for him. By the time he realized he had to breathe on his own, he was tired and worn out. It reminded me the last few days of his honeymoon period. As long as his heartrate didn’t drop, Dr. Fisher wanted him to stay on SiPap. Unfortunately, after 30 hours of extubation, he had to be reintubated.
After he was re-intubated, things started to drop even further . . .
- He started using more oxygen. Luke’s recent ‘normal’ levels have been between 30-60% oxygen. On Tuesday, he started requiring 90-100% oxygen.
- He wasn’t ‘himself’ everytime a nurse came by to work with him, he didn’t budge or fight back like he normally does.
- They suspected another infection. His temp was higher – so they started an IV on his left hand and gave him antibiotics as a precautionary measure.
- They increased his rate to 35 to help him use less oxygen. [which helped alot too]
- They also increased his Hydrocortisone and that helped out alot.
Other things to note. .
- Since we captured his smile, he’s been smiling and giggling alot lately. It always takes all the worry away. He even tried to smile when he was having a hard time with his SiPAP. I know that he wanted to show me how strong he really is.
- He opens his eyes and looks at things longer than he has. Once, everytime Kailani was there, he’d always look at her and smile!! I can’t wait for the two to be together at home.
- Now that he’s back on his vent, he looks a lot more comfortable. He’ll need to go back off eventually, but it was hard seeing him so frustrated.
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.