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:
- 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!
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:
- Weight : 1lb 8.3 oz [He's gaining weight!]
- Last I was updated they’re weaning his Hydrocortisone and is only getting once per day.
- They’re keeping a close eye on his lungs – will need your extra prayers for these! I’ll update as I find out more. He received a pulmicort treatment. His oxygen levels have been fairly up recently. I’m used to seeing him in the 20-30% range, but last night, I saw him as high as 70%.
- They’ve been increasing his feeding! The last time I saw his feeding – he was taking 4mls via Gtube. He’s making progress!
- The Arterial Line was removed [they tried to keep it in as long as they can]. The Scalp IV line was also removed because it wasn’t working anymore. The only lines going into him right now are his PICC line and an IV Line on his hand.
- He received his 4th blood transfusion tonight after getting an XRay.
This was a picture taken on Papa’s Blackberry.
Micropreemies do go through alot. From poking, adjusting oxygen levels & rates, tests, screens etc. I don’t think I could have been a good micropreemie baby myself! Luke’s doing such a good job – he’s a trooper!!
Time for an update! Neill and I celebrated our anniversary the past few days, which means I had less time on my hands.
There hasn’t been any new and exciting news lately – He’s been okay. Last night, we were told that his latest labs showed that he has an infection. Due to this, we’re asking not to have any visitors for the time being. We will keep you posted when things has resolved and when you can come in to see Luke again.
- On the last report, he was getting 2mls of breast milk via GI Tube. That’s a 1ml increase!
- Blood pressure has been very well. They might start to wean hydrocortisone.
- Oxygen’s been on the upside lately. His med team have been adjusting it according to his blood gas results.
- They tried to get another IV site started, but wasn’t able to get any on his hands & feet. So for now, his IV line is on his scalp. It’s a lot more disturbing to look at than it really is – hopefully the next time would be back on his extremities.
- Luke’s been very active lately. Eyes opening, hands and feet stretching. . however when he does this he tends to desat a little bit.
- I was able to hold him for about an hour on 03/05/12 – until he got a little cold. I’d love to hold him again soon!!
- We said that he didn’t like his belly much on the last update – and this is true! When Nurse Sherry put him on his stomach, he made such a fuss over it . . he almost did a push up!! I tried to upload a video of him doing his push up – but I can never understand what the disconnect be
We’re very thankful we’ve had some pretty good days lately.
- He’s starting his feedings again!! He’s only taking 1ml of pumped breastmilk via GTube for now, but it’s a start! It’s to get his intestines moving. Soon, they’ll start doubling his feedings.
- Blood pressure has been very well. He’s still on Hydrocortisone.
- On 03/03/12 – His nurse, Celeste, told us he had a bowel movement! Since he was on dopamine, he didn’t have any dirty diapers. He’ll be getting suppositories to help out too.
- He doesn’t like dirty diapers. Who does? But this man in particular would fuss over a wet diaper.
- He’s been keeping his eyes wide open lately.
- He doesn’t like being on his tummy much lately, he prefers his sides more.
- I’m officially banned from storing breastmilk in the NICUs freezer. Haha! I’ve got a lot to last him a while – a long while. Neill & I have been shopping around for freezers. The routine is to bring home my pumped milk everyday. We’ll need as much stock for when I go back to work.
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.
- 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.
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.
Luke’s always had a personality of his own since he was in my belly. He didn’t like anyone getting into his personal space. Everytime I had an ultrasound or if they needed to listen to his heartbeat, it’s guaranteed he’d kick the whole time. Everytime Daddy tried to talk to him he’d always let his presence known by a few good jabs. He did want to be out of this world early. Hehe! Ninang Carla even named him Rennesmo [TWIhard fan inside joke] because he was giving me such a hard time.
That’s why I’m not surprised he is the way he is. Sure, it’s common for preemies but I think that’s just Luke.
His care team at Kaiser Walnut Creek take certain precautions to make sure that he doesn’t get too tired and overstimulated. and so he gets a good hour [or two] of rest.
I didn’t have my camera with me to catch the moment when he was trying to fight his sleep – this iphone picture would suffice for now.