#persistence

"Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent."
-Calvin Coolidge

With the grace of God, Lana has continued to get healthier and healthier. No doubt that there were plenty of bleak moments (and I mean REALLY bleak), but she has persisted. As they say, "the harder the battle, the sweeter the victory". With the help of her doctors, nurses, and respiratory therapists, we've finally gotten to the point where conversations of her homecoming are starting to happen. The overwhelming support and prayers we have received have made such a great impact not only for Lana, but for the rest of our family as well. To be honest, I'm still stuck in a feeling of disbelief, and I don't know how to react once we finally open the door to our home with our whole family together. 

But just like everything else during this journey, we will cross that bridge once we get there. At the moment, we still have to make sure we have all our ducks lined up. Good thing that we've been planning ahead. I'll expand more on what else needs to be done once we get a clearer picture by the end of this week.

“It’s better to be prepared for an opportunity and not have one, than to have the opportunity and not be prepared.”

— Les Brown

Gym Class Hero

Yesterday was Lana's first physical therapy session. Since she is getting bigger, it's also important for her to learn skills such as being able to hold her head up when she's on her belly, and also to practice rolling around. We weren't around for the session, but we made sure to ask for pictures!

She seems to love the socializing and probably also enjoys spending some time out of the crib. It's essentially her gym class! We can certainly get some spiffy gymnastics clothes for you, but maybe we'll hold off on the chalk and powder for now. You'll get all the playtime you could ask for in the near future my dear. Just hang in there and continue getting better.

Here is Lana getting some gym time on her makeshift hospital playground

Of course there is always story time

And when she gets tired, she can also recline.

Her bottle feeding is still a work in progress. She has her moments when she can take down close to a whole bottle before getting tired. Other times she's not interested on expending energy trying to drink. Either way, we are ell extremely proud of her progress. Baby steps.

No more sedatives!

Lana bear had a pretty good weekend. She’s slowly learning how to bottle feed, and at one point she was actually able to drink 120mL during one of her feedings. Of course she does get tired, and sometimes she’s not interested in drinking at all. I’m confident that in due time she will pick it up. For now, the plan is to let her feed for 20 minutes, and whatever she doesn’t finish then they will feed it through her feeding tube. Learning to feed by mouth is one of the big things on her check list before going home. Hopefully with a little more practice she will have it all figured out.

Lana gets "hangry"

Moreover, they have discontinued her Morphine completely starting today. We pray that she will not many withdrawal symptoms. Sometimes she gets agitated, but personally, I don’t know if it’s really a true withdrawal sign, or just because she just needs something else. There were times where she is crying inconsolably, but ultimately, she just wanted to be held. Lastly, there are weaning her breathing support to 1 Liter (down from 2L).

Hailey had her birthday party over the weekend, and we realize how much we would really like to celebrate momentous occasions together as a family. With God’s blessings and the people who continue to pray for our family, I’m certain we will be able to do so in due time.

48 Hours off Bubble CPAP & Swallow Study Complete

Lana was changed over from a bubble CPAP to a High Flow Nasal Cannula over the weekend and so far so good. Her lungs were so immature at one point that it couldn't keep itself inflated. When she was on the ventilator, the vent provided the pressure that her lungs needed to keep it open. The next step was of course to get her off the ventilator, and the job of keeping her lungs open was left to the Bubble CPAP (Continuous Positive Airway Pressure). See image below.

The next step was to see if her lungs are now strong enough to keep itself inflated, and they gave her a chance to see if she can do without the Bubble CPAP. It's been over 48 hours now and so far so good. 

Next on the agenda is to do a swallow study. They will give her a contrast dye to see if she can swallow the liquid while they look at it through an x-ray. That way, they can assess if she has the coordination to start eating by mouth instead of a feeding tube. We have faith in her abilities, but we will keep praying for her in any case.

Thanks again for your support.

UPDATE (15:00)

Lana had her barium swallow study done this afternoon and she passed! 

Only the curious have something to find

There are some days where Lana just likes to stare and observe. She is becoming more and more curious and aware of her surroundings. Her eyes also seem to do a lot of talking. Today, she just wanted to play for as long as she could and stayed awake the whole time throughout our visit. Of course, we're more than delighted to play with her, but she also needs to continue to rest.

She's still weaning down from her Morphine and Ativan, but sometimes she displays signs of withdrawal. Although she's been pretty good about it, she has her fits of vomiting and restlessness (which could also explain why she hasn't been sleeping much). The pressure support for her CPAP has been reduced more, and hopefully she can maintain it. It fills our hearts to see Lana progress so much through the many months in the NICU. She's starting to really grow into her own. =)

“Those blessings are sweetest that are won with prayer and worn with thanks.” -Thomas Goodwin

Quick Update

So Lana's MRI results came back and all seems well. It was noted that she has a benign hydrocephalus (fluid in her brain). Fortunately, it is self-limiting, and it should resolve within a couple of years. They don't expect it to be an issue. But they will follow up every year just to make sure it's not progressing. It goes without saying that this is a big relief for us. 

Lana seems to be tolerating the weaning of her Morphine a little better. The goal is to get her off of them completely so that the focus can be placed on her breathing and feeding. They will space out the frequency of her doses, and hopefully get her off them completely. 

Here is a video of Lana during one of her better moods. (Yeah I know, I broke a cardinal rule of recording in portrait mode…)

Happy New Years!

"When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
Well, there's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?"
                     -Jason Mraz (I Won't Give Up)

 

This year, we will try to remind ourselves to be thankful for every blessing that comes our way. When I look back at these old photos, I realize how much Lana has been through, and inspires me to strive to become a better person. New Year's Day is always a good place to start. We're still lookin' up.

Field Trip

The last time Lana was in this transport incubator, she was only 1 lb 7 oz... Now she's tipping the scales at 9 lb 11oz.

Lana is going on her second field trip to get a follow up MRI to check her brain. Her first field trip was when she was born and flown via helicopter from Sugar Land. This time, she's only going downstairs to the first floor for her MRI. We're praying that it will turn out reasonably well. She had a grade 1 brain bleed when she was first born, but it soon resolved.

She has also been weaning off her sedatives but some days are tough for her. Occasionally she has withdrawal symptoms that is concerning such as, agitation, diarrhea, regurgitation, heavy sweating. Of course this causes her to be restless and she becomes irritable. The plan is to wean at an even slower rate, but not too slow that she doesn't get the necessary stimulation she needs.

Her breathing status has been relatively the same since she decided to extubate herself. I don't think they are planning to make any changes to that until she is completely off her sedation meds. We will continue to pray that Lana will soon tolerate being off her medication so that she may continue to develop and mature.

Also, I just wanted to mention how proud we are of Lana's big sister Hailey. She noticed that Lana was getting baths from a small tub that she can now barely fit in. So she used her own Christmas money to buy her sister a bigger tub! Hailey is almost 7, but her maturity and kindness amazes her mother and I.

Twas The Night Before Christmas

'Twas the night before Christmas, in the neonatal intensive care,
all the babies were sleeping, while sounds of alarms, filled the air.

The nurses making rounds, double-checking their meds,
while tucking the little babies, snug deep in their beds.
The stethoscopes were hung, by the preemies with care,
in hopes that they would all soon, be breathing room air.

When out in the hall, there arose such a clatter,
the nurses came running, to see what was the matter.
Up from the desk, the tech flew with a fret,
to make sure all was well, in each baby's isolette.

The respiratory therapist, arrived on the double,
but the babies were all okay, on their oxygen and bubble.
The nurse practitioner was baffled, and exclaimed in a tiff,
"Is this really happening tonight? And on my THIRD shift?"

When what to their wondering eyes should appear?
but a man in a suit, who loved the babies so dear.
With a clipboard in hand, and a velvet satchel too,
they knew at that moment; he must be St. NICU.

He was dressed in red scrubs, from his tip to his toe,
and wearing surgical gloves, so the germs would not grow!
He was a jolly old fellow, with a few extra pounds,
but that didn't stop him, from making his rounds.

He saw babies in boxes, with tubes and with wires,
preemies and term infants, and their parent's desires- 
To hold and to rock, to kiss and kangaroo,
They had Christmas wishes, but only these few.

Snuggling the little one, he wrapped him so tight,
he handed the baby, to his mom with delight.
A smile arose from her mouth, with great joy,
for this was the moment, she dreamed to have, with her boy.

Visiting each baby, and their concerned parents too,
He knew right there and then, there was something special about the NICU.
Placing his hands, on each little head, 
kissing their foreheads, he winked, and he said-

"Tiny babies so strong, with determination and might,
so this is where you come, to live and to fight."
"To breathe and to grow, and to learn how to eat,
what a difficult journey, but such an amazing feat."

He had a sparkle in his eye, and a hop in his step,
as he approached the isolettes, and whispered secrets he'd kept-
"Precious little babies, you are loved, so dear,
by your parents, your nurses, and ALL the staff here." 
"Keep fighting the fight, and showing your power, 
and you will grow stronger, with each passing hour."

Decorating the hallways, with ribbon and tape,
he strung lights on the warmers, the ventilators, and drapes.
He smiled and waved, as he passed by the cribs,
and left presents of pacifiers, and cute little bibs.

His mission was simple, to bring joy where there's sorrow,
and to remind all of the parents, of a brighter tomorrow.
This Christmas may be spent, behind the walls of the NICU,
but there's love to be found here, and precious miracles too!

He brought hope to the families, and smiles to the nurses,
as he flew by the monitors, and placed Purell in their purses.
And with a twinkle and a twirl, he disappeared out of sight,
But not before he exclaimed, "Merry Christmas to all" and "keep up the fight!"

-by Jodi Dolezel RN (http://www.huffingtonpost.com/jodi-dolezel/saint-nicu_b_6348086.html)

Lana's Christmas Tree with an ornament that says "Baby's 1st Christmas"

Girls' night out with the evening shift. =)

The Gift My Father Gave Me

Let me indulge for a bit and tell y'all a little story. I promise it will tie in with Lana. =)

My Dad was an avid Tennis fan for as long as I could remember. I wasn't as keen about tennis, but the one sport we both enjoyed in common was basketball. My Dad was the one who showed me how to shoot a basketball. I remember him lecturing about how important it was to put a backspin on the ball it as it left your fingertips. I became a decent shooter and became rather adept at shooting free throws as well. So much so that when I played organized school basketball, I was usually the one assigned to shoot when there were technical fouls. I remember once shooting free throws in a tied game with no time left on the clock after getting fouled on a fast break. It was a tense moment to say the least, and all I had to do was make one shot and we win. My Dad was in the bleachers and I could see him standing up as I let the first shot go. The ball hit the back of the rim and then rattled out... I missed. At this point I saw my Dad walking out of the gym and I didn’t know how to feel. Was he disappointed in me? I composed myself for the second shot, and thankfully that one went in and we walked away with a win. Although I was relieved that we won, I was confused why my dad seemed disappointed. I talked to my mom later that night, and she said that my dad wanted to start the car early to beat the traffic. He knew that when we win games at our homecourt, the traffic is worse because everyone wanted to hangout at the school even longer. After a loss, most people felt less inclined to hang around and traffic isn't as bad. My Dad was confident in my abilities and he knew I would sink at least one of those shots. My father believed in me. That was the greatest gift he gave me. This is also the same gift I give to both of my daughters. I BELIEVE in both of them with all my heart.

---

Lana has been officially off the ventilator for exactly one week. We pray and hope that she can keep it that way. She is now on a bubble CPAP which provides her with oxygen and pressure to her lungs, but it is less invasive than a ventilator. This is great progress for her because it's a marker that her pulmonary functions are slowly but surely improving.

Yesterday they attempted to introduce her to bottle feeding. It didn't go as well as we had hoped, but we're confident she'll pick it up in the near future. She can suckle just fine, but she has trouble swallowing down the milk. They figure that her throat might still be tender from being intubated for so long. They will allow her more time to rest, and then re-challenge her again at a later date.

At this time we would also like to say thanks to everyone who has been supportive of our family during this time of hardship. We are here at the hospital so much that we are hardly ever home to cook. We were content with eating fast food, but we didn't know how much we missed real food until our friends were kind enough to drop off food. In all honesty this made  a world of a difference for us because not only did you guys fill our bellies, you also filled our hearts. To Frank, April, Ly, Sam, Steven, and Kristy, we thank you so much for your kindness. We will be forever grateful for your friendship.

Lana's evening RN, Michelle made this footprint card for her.

We didn't realize how lucky our family is to be surrounded with so many wonderful people. We would like to recognize your enduring support. From wearing her bands, or sending us encouraging letters, or even just to check in on us, these gestures have not gone unnoticed. Also, thank you for continuing to pray for Lana. Our Lord has kept watch over our family. Even in our darkest moments, we have never felt alone. He has empowered us with His strength when we were at our weakest. With Christmas around the corner, we have been blessed with the greatest gift - love.

A Visit from Santa

Happy Friday everyone! Lana made it on the local news with a visit from Santa. (We weren't aware that the news crew were making a visit, so please don't mind our deer-with-headlights look. After all, it's Lana's moment anyway)

She is doing well even after yanking her own breathing tube out. It's always a rather jarring feeling when there are major changes that happens so suddenly, but Lana is handling it like a champ. We have learned to truly appreciate God's blessings.

We hope she continues to progress so that she may soon come home safely. 

“I'm not stubborn. My way is just better.” -Maya Rush

So someone decided that they were really tired of that tube down their throat... Lana has quick hands and was always yanking at her breathing tube. So earlier this morning she decided she was done with it and pulled it out herself. Clearly, this stubbornness comes from her mom...

We pray that she will do okay without the ventilator and just continue on this path. #LanaStrong #TeamLana

"But why the rubber band? It representing the struggle man." -T.I.

Thanks to my bff Dan Ly for making these #LanaStrong wristbands. All the staff here in the NICU love it! Also, we just want to say a big "THANK YOU", to everyone for wearing these bands. It means so much to us that you all have been keeping Lana in your thoughts and prayers. Tomorrow will be a little over 4 months in the #NICU, but these bands reminds us to appreciate how much she has accomplished. #gratitude

Lana is finally off her Nitric Oxide and is now weaning off her Oxygen. She started at 98% FiO2, and is now down to 38%. So essentially, she's needing less and less Oxygen which is great news! Hopefully, she can soon get extubated and get her breathing tube removed, but that she'll be ready when she's ready. We'll keep praying that she'll grow into her own. =)

Here is Lana doing exactly what she's not supposed to do and picking her head up while intubated

Please continue to pray for Lana and keep her in your thoughts. She's been a trooper this whole time, and despite of what we're going through, we try to remind ourselves to be thankful for what we DO have. God has continued to watch our family and give us His blessings. He has also continued to give us the strength we need to become better parents. Our perspective of what truly matters have shifted so much since our first day in the NICU. We realize how fortunate we are to have friends and family who are so supportive. They say it takes a village to raise a child... well our crew rolls deep. =)

Lana and her Lullabies

If you’ve been following Lana’s blog, you’re aware of how she has a tough time breathing on her own. She has been on a JET ventilator which makes it impossible for us to hold her for safety reasons. It’s been 2 months since we got to hold Lana in our arms. Until today that is…

They have tried putting her on a conventional ventilator before and she was able to handle it for a little less than hour before she started to struggle. After a few more days, they decided to give her another chance to go on the conventional vent. As of this writing, I’m happy to report that she’s been doing well and made it past the 48 hour mark. This is great progress for her because this type of vent mimics the way we naturally breathe, whereas the other vents blow a constant pressure of air (highly simplified explanation). We are so thankful that she has progressed so much this past week.

We have missed holding her so much. It's also amazing to see Lana awake and not irritable despite still being intubated. We are now able to play some lullabies for her since she can now handle stimulation. And thus, we compiled a list of songs that she likes. (See if you can guess what song is playing in the video, and also what it means. Hint: There are TWO acceptable answers)

We would like to thank her physicians who made the difficult decision to give her another chance on her current ventilator. It could have easily gone the other direction. Also, special thanks to her nurses Sylvia and Michelle for giving Lana the extra TLC this past week. Thanks to her respiratory therapists for being so patient with her especially when they have to keep suctioning her every few minutes. Most importantly, we thank the Lord who keeps watch over Lana. It pains our heart that she is away from her family for so many hours in the day, but we find solace in the fact that He is watching over her.

Those who wish to sing, will always find a song

Hailey wanted to make a song for her sister Lana, who is still in the NICU (110 days). She was born at 28 weeks, but was smaller than expected due to a placental abruption. Hailey wanted to dedicate this song to Lana.

"Yesterday is history, tomorrow is a mystery, today is a gift of God, which is why we call it the present." -Bill Keane

Sorry for the lack of updates. It's been a very busy week, and I lacked the mental capacity to write things in a discernable manner. I could barely walk and chew gum at the same time, so writing complete sentences were out of the question. 

THE GOOD (Yaaayyy!!!)

Lana was recently removed from sedation and her course of antibiotics were completed. What does this mean? Well to start, it means that she doesn't require a crowd of IV pumps to give her medications. At one point she had so many medications running at once that they couldn't fit it all on her table.

Lana had so many IV medications that it filled up the whole table and still needed a pole to carry one more.

Now she has her book, a couple of rosaries that were given to her a presents, and also her first bible.

It also means that they can remove her PICC line (it's essentially a line that is placed on her harm to give several medications at the same time). This is a good thing because ultimately, intravenous lines could be another possible route of infection. She was initially put under sedation because being intubated made her agitated. She kept "rasslin" with her tube. I can't blame her. Anyone would be irritable if they had a breathing tube down their throat. However, it seems like she's tolerating it better now.

So the next goal is to slowly wean her off her ventilator (or at least a different one). This is going to be a long and slow process, and it could take several months. But as another NICU parent comforted us, "She'll be ready when she's ready". She's on her schedule - not ours. We will remain patient and give her all the time she needs. 

THE BAD (Boo!!!!)

Her medical staff have tried to slowly wean her down, but some days she needs a lot of help. (Puts on smart hat) When you or I breathe in, we inhale in a mixture of gasses (Nitrogen, Methane, Oxygen, etc…). Typically, about 21% of this air we breathe in is Oxygen, and the rest are composed of the other types of gasses. However, Lana requires way more than that. At one point, Lana needed 100% Oxygen (FiO2) in order to breathe and thus keep her brain and other organs functioning. She once got down to 90%, but then later that day they had to go back up. On top of that, her “breathing machine” also pushes air into her lungs since she isn’t able to keep it inflated by herself. The plan is to slowly wean her off the percentage of Oxygen she needs so that she can learn to do this on her own. Not to mention, breathing in 100% oxygen all the time can actually be toxic. Once she can get to a lower percentage, then she can finally switch to a machine that allows her to do most of the work. We pray that her lungs continue to mature so that she may start breathing on her own, and also that the PDA (hole in her heart) will close on it's own without surgery.

God’s blessings has empowered her to keep going on her difficult journey. She has withstood many things that most of us have never experienced. She was able to do this with the support of the everyone that has prayed for her. Thank you ALL for your support and prayers. Special thanks to Cynthia Bryant who continues to update Lana's prayer warriors, and also to Narse for sharing her story in the NICU with us. It helped ease our anxiety and gave us hope. Thank you!

Happy Thanksgiving!

Happy Thanksgiving everyone! Here is how our day went.

Progeny #1 woke up and was ready to roll. I have no idea what this whole post-it thing was about... I was barely awake and was just looking for my camera. 

Made a quick pit-stop to grandma's for a small Thanksgiving Day lunch. 

Progeny #1 giving Progeny #2 some encouraging words. With flu season in full swing, these visits with Hailey will become few and far between. Definitely thankful for every minute we all get to spend together. 

Looks like everyone is resting and digesting for Thanksgiving. Lana just got a belly full of breast milk through her feeding tube.

Progeny #2 waking from her nap.

Not much change today, but with that said, we are very thankful for all the blessings that we have received. 

“When each day is the same as the next, it’s because people fail to recognize the good things that happen in their lives every day that the sun rises.”

— The Alchemist

We try and remind ourselves how good we have it, despite our circumstance. God's blessings come in different ways. Kelly and I can both agree that this is one of the toughest things we've had to deal with. However, it made us realize what's truly important to us.  Our trials have strengthened our bond, and we have grown to appreciate the all the little things we previously took for granted. We've been blessed with an amazing group of family and friends. To be honest, I don't know how we could carry on without your support. Thank you!

One hundred days old!

Someone's getting long in the tooth. Okay, no teeth, but she's actually getting longer herself. 100 days old, and every one of those days has been in the NICU. She has a LONG way to go, but it also means we're 100 days closer to getting her home safe and sound.

This is the first time she finally gets to sleep on her belly in over a month! The girl loves sleeping on her tummy. 

One of her nurses drew this on her whiteboard earlier in the week. =) 

As I have mentioned before, Lana is currently ventilated using a High Frequency Jet Ventilator (HFJV). This is different from a conventional ventilator because it keeps a constant pressure of air in the lungs so that it stays inflated and keeps from collapsing (this is my simplified explanation). It’s actually more gentle on the lungs as well. In contrast, the conventional ventilator mimics the way we normally breathe, and supports spontaneous breaths. Meaning that if the machine thinks you’re trying to inhale, then it will push in more air for you. In Lana’s case, we are hoping that she can get on this ventilator soon because it offers one more advantage that the HFJV doesn’t, that it can deliver medications directly to her lungs, and thus treating the area locally if needed. This would be ideal if they have to treat a pneumonia, which she is at high risk for since she has a tube going directly to her lungs.

With that being said, her medical team tried to transition her to the conventional vent on Friday to see how she would handle it. Unfortunately, Lana wasn’t quite ready as her oxygen saturations started to drop while on this vent. They will see how she does again at a later time, but I have faith that she will continue to improve.

Thanks for all the positive thoughts and prayers. It means a lot to our family. Please continue to pray that her lungs continue to get stronger and that the hole in heart gets smaller. Even though Lana hasn't had the pleasure of meeting all of her wonderful family and friends, we hope that you all can meet her through her stories and photographs.

On Brick Walls

Not much changed in the past few days. This can be a good thing or a bad thing depending on how you look at it. With that said, we are just grateful for every moment. We can look at it as, "I can't believe we've been in the NICU for over three months". Or we can look at it as, "We're three months closer to finally coming home". #frameshift #whatdoesthismakepossible #theglassishalffull

"The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.” 
― Randy Pausch, The Last Lecture