What Cutting Down a Basketball Net and Preparing a House for Lana Has in Common

I am gonna sidetrack here for a minute, but it’s to make a point about fear and doubt. I am sports fanatic and thus a lot of my analogies come from it. Jim Valvano was an NCAA basketball coach for NC State back in the early 1980’s. When he first took over the head coaching position, the basketball team was rather terrible. However, he was committed to his players and believed in them.

If you’ve ever watched college basketball in March, you have probably seen the iconic tradition of the nets being cut down by the team who won the championship. Coach Valvano had so much faith in his team that he would dedicate a whole practice of just climbing up the ladders with scissors in hand, and slice through the strands of the net. Despite not being very good, they would do this regularly. Imagine the reactions of the players who are devoting their first day of practice to cutting down the nets after just having a losing season. Each player had to do this as part of practice. Some of the players admitted that they felt goofy and awkward doing this. However, Coach Valvano had a vision for his team because he believed in them, even if they didn’t believe in themselves. Eventually, that awkward feeling when cutting the nets started to dissipate, and his players started to believe that anything is possible.

They barely made it into the tournament after having a mediocre season. NC State wasn’t even considered to be a contender, let alone win the championship. But Coach Valvano had planted a seed in the minds of his players. They went on to play Houston in the championship game to win one of the greatest games ever played in college basketball history. As they cut down the nets after winning the NCAA tournament, you can tell it was second nature to them. (Link to video).

So at this point, you’re probably asking yourself, “What does this have to do with Lana?” Well for the longest time I’ve been putting off doing all the things I’m supposed to be doing to get our house baby-ready. Part of it is because we spend so much time in the NICU. But the other part of it was because I was afraid. I thought to myself how much it would hurt to come to an empty room with all the baby decorations if somehow Lana didn’t make it. It would just be a sad reminder. Then I came to realize that I had to stop doubting and start believing. Yes it would hurt to come home to an empty room, but it would hurt just the same whether I prepared it or not. However, it speaks volumes about my faith in her, and my faith in God. Does this guarantee anything? Of course not. But we have to believe. Tomorrow is never promised today, but whatever tomorrow brings, we’ll be ready.

Soon, Lana will be cutting these nets...

Soon, Lana will be cutting these nets...

Update (15:00): They performed another ECHO today on Lana and it shows that hole in her heart (PDA) is still there. On the brighter side, it also showed that her pulmonary hypertension seems to have resolved. So much so that the technician performing the ECHO was shocked. He continued to assess her thinking that he may have just missed something, but in the end her pulmonary pressure stayed low. =)

She will likely have another ECHO on Monday or Tuesday next week, so we will continue to hope and pray that it will start to slowly close on it's own. Thanks goes out specifically to Lana's prayer warriors who have been dedicating time out of their daily schedule to pray for her well being. 

Just a Quick Update

Today isn’t one of Lana’s good days. She has continuously had an abundance of secretions, and most of the time they are very thick. This large amount of mucous makes it harder for her to breathe, and also aggravates her. The video below shows how irritated she gets when she has a hard time breathing. It really breaks my heart when I can see her crying like this and she can’t even make a sound because of the breathing tube.

Her ventilator support was again increased, although just a tad bit. We were truly hoping that she would have progressed a little further by this time, but we we will give her all the time she needs. 

"He thought of the many roads he traveled, and of the strange way God had chosen to show him his treasure" -Paulo Coelho (The Alchemist)

Lana has had a good weekend. We truly treasure every moment we are able to spend with her, especially when she has her good days. She seems to tolerate weaning down from her sedative medications… so far at least. Of course she occasionally requires a PRN dose whenever she gets agitated, but hopefully she continues on this trend. The morphine infusion was slowing down her gastric motility so much at one point that she wasn't digesting anything at all. With the dose being a lot lower, she has resumed her bowel movement (aka pooping). Furtherore, she also recently had an eye exam to assess her Retinopathy of Prematurity (ROP), and it LOOKS like her eyes are okay (see what I did there?). We were worried that her issue of not oxygenating adequately would cause the blood vessels in her eyes to grow improperly, which in turn could cause visual impairments. However, her pediatric ophthalmologist gave her a passing score. =)

The next big bridge to cross is to put her on a conventional ventilator. She is still currently on a High Frequency Jet Vent (see video below). Hopefully, it can happen sometime this week if she is showing that she can handle that transition. The conventional vent will allow them to use inhaled tobramycin to treat the infection site locally. However, this type of vent maybe a little more jarring for her. Then again, just like anything else, plans are still day to day.

Her PDA is still very patent, and we're praying that it closes on it's own without surgical intervention. This is a long shot, but maybe her stars will all start to line up in the near future. She's been working hard to get better, and luck is a residue of hard work. =)

Thanks to everyone who has supported us through these difficult times. Special thanks to Frank and April for watching over our dog Rico so that we could do some house repairs and visit longer at the hospital. And of course for the lactation cookies. I really... err, I mean Kelly really loved them. It certainly did the trick!

Also, thanks to everyone who have continued to pray our family. You guys literally help keep us going. We never cease to be amazed by all the kindness you all have given us. Thank you!

From Russia with Love

I had just left my cubicle for a few minutes and when I came back, I returned to this. 

 

A little back story:
When we first found out we were pregnant with Lana, we were told that her expected due date is today, November 5th. Nevertheless, things don’t always go as planned. After all, life is what happens while you’re too busy planning it. Certainly it has been rough couple of months, but even in our desperate moments, we are always reminded to be hopeful.

A little further-back story: 
I often get asked where we got the name, “Lana” from. How I answer that question is highly dependent on how much coffee I’ve had that morning. The quick and nerdy answer is, “It’s a name of a character in the Superman comics”. If I’ve had at least two cups of coffee, then I might elaborate more and mention that it’s actually derived from the name “Svetlana”, and how it originally comes from the Russian word svet, which translates into English as "light", "shining", "luminescent", "pure", "blessed", or "holy", depending upon context. If I’m feeling particularly scholarly, I might even throw in a theological reference. But ultimately it comes down to the simple fact that my wife “liked” it.

God has his own way of reminding us to be hopeful and keep faith - you just have to pay attention. Sometimes it’s through coincidences. These beautiful flowers were from my co-worker (and resident genius), Yelena. Where is she from? Russia. When is her birthday? November 5th. =)

"Tomorrow these will be for Lana" (Nov 4th 2015). Yelena, thank you for the flowers and also Happy Birthday!

"Tomorrow these will be for Lana" (Nov 4th 2015). Yelena, thank you for the flowers and also Happy Birthday!

Updated: Added a "Happy Due Date" Photo with one of Lana's favorite nurses, Sylvia!

An Open Letter to Lana

To My Lovely Daughter Lana,

First and foremost, we are so lucky to have you in our lives. Hailey, your mom, and I, have been truly blessed with your presence. It certainly has been tough, but we’re genuinely thankful to God for every moment we’re able to spend with you. Time just seems to fly by when we are by your side. You have been through so much in your short time here, and you have proven time and time again that you’re one tough girl. I feel foolish at times for even thinking about complaining about lacking sleep, because in reality, you’re the one doing the battling. As the tiniest girl in the NICU, you certainly have the largest heart.

You’ve barely been alive in this earth and you have taught me so much already. You remind me of how important it is to be thankful for all the little things in life. I’ve become so spoiled that I have forgotten how special it is to be able to hold your loved ones, and to be able to whisper in their ear how much you care about them. You have changed my perspective, and have reminded me of what is truly important. Furthermore, you have helped me find God again. I was not cognizant of how lost I was until I was found. Because of you, I have probably prayed more in the past 2 months, more than I have in the past 20 years. I still have a lot to learn to become a good dad, but you taught me so much already. I’ve become more appreciative of all the small gifts in life.

To be perfectly honest, I don’t know how much time we will have together. But God-willing, I would like be able to use what I’ve learned to be a better dad for YOU. I will carry the lessons from this circumstance to become a better dad, husband, son, brother, and friend no matter what happens. But if I can one day share with you and Hailey the lessons you’ve been able to show me, then I will feel that I have done my job as a father.

Love, 
Daddy  

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” -Mary Anne Radmacher

Lana has been on maximum support on her ventilation settings and medications, but there hasn't seem to be much progress. This is what concerns her doctors. Possibly by today or tomorrow, they will switch her back to a conventional ventilator and hopefully she will respond better. However, there is always a great risk involved in doing so.

Update: 22:00
After speaking with her neonatologist, she voiced possibility of transferring her to a bigger hospital in the medical center to provide care that they might not be able to provide here. Unfortunately, Lana is not stable enough to transfer at her current condition. This goes without saying, that any changes come with risks and consequences. There are many bridges to cross, and many questions that can't be asked until we get to the point. And to be perfectly honest, things can go terribly wrong (life threatening) at any point along the way. Therefore, we unfortunately had to have "THE" talk if something should happen.

  • How will she tolerate being switched to a different type of vent?
  • What happens if she doesn't?
  • Will she be stable enough to transfer?
  • Resussication? (I feared this question would come up)

As always, THANK YOU for all the prayers and support. We remain grateful for every moment that we get to spend with her, and we will continue to stay positive for Lana.

Isiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.


Sugar and cream with your Dopamine?

Getting a phone call from the NICU is always a scary experience and it’s something you never really get accustomed to. I felt a little groggy this morning and was desperate for coffee, but as it turns out I didn't need it. The nurse practitioner informed us that Lana was having a rough night. Apparently she was getting agitated and would desaturate to 50% (SpO2) and took a while for her to settle down even after giving her 100% (FiO2) oxygen support. Furthermore, her mean arterial pressure (MAP) started to drop and thus they had to start pressor support with Dopamine. Without pressor support, she would lack organ perfusion. Not the ideal morning coffee, but this certainly gave us a jolt.

They performed another ECHO on her this morning, and her pulmonary pressures had increased again. This could possibly be due to her getting agitated, so her sedation medications were bumped up. Not to mention her getting all fussy likely worsened her pulmonary hypertension even more so. Later in the day, her pediatric cardiologist had suggested using Milrinone for pressor support instead of Dopamine. Some recent studies have shown that Milrinone can enhance the effect of Nitric Oxide in infants with PPHN. We’ll just keep praying that Lana will respond better. She seems to have found her happy spot for now, and hopefully she can just continue to rest. 

Just a thought, you know that you’re spending a lot of time in the NICU when other parents start asking “So how long have you worked here?”

Lana adding one more IV line to her growing collection. =(

Lana adding one more IV line to her growing collection. =(

Believe it or not, they actually added one more syringe pump after I took this photo.

Believe it or not, they actually added one more syringe pump after I took this photo.

As always, we would like to thank everyone for giving us moral support during these times. We are fortunate enough to be surrounded by amazing friends and family. We appreciate all the prayers and positive thoughts.

Update: 23:00 (They had to make more adjustments to Lana's sedation because she seems to be gaining tolerance to them)

Victory is won not in miles but in inches. Win a little now, hold your ground, and later, win a little more. - Louis L'Amour

Today is a special day because Lana was baptized. The NICU was kind enough to make accommodations for our small celebration, and Lana’s nurse and respiratory therapist (Sommy & Raymond) also graced us with their presence. It was a quick ceremony but it was still just as momentous.
Right now, Lana is under minimal stimulation. We are careful not to agitate her because it could potentially aggravate her pulmonary hypertension. Therefore, we have to speak quietly and dim the lights low. When they have to do examinations or procedures, her eyes have to be covered. The video below shows her High Frequency Oscillatory Vent (HFOV) in action. And yes, it looks and sounds like a washing machine from the 1980's.

Lana had another ECHO done yesterday, and her pulmonary pressures seem to have declined significantly. We're hoping that this is another small victory she can hang on to. Her chest X-ray is still hazy, but it's actually a small improvement from the prior x-ray.

Thanks to Raymond and Dr.Benavidez for delicately extubating and then re-intubating Lana so that air leakage from the vents were minimized. 

Thanks to Raymond and Dr.Benavidez for delicately extubating and then re-intubating Lana so that air leakage from the vents were minimized. 

The plan is to slowly wean her off Oxygen as long as she is able to keep a good saturation. This will be a long process and will require a lot of tactfulness and patience. TIme will be her best medicine.

Hailey doing her homework next to Lana.

Hailey doing her homework next to Lana.

I can't say this enough, but THANK YOU for all the support you have given us. Every prayer, any small gesture, and even the quickest of kind words fill our hearts. We are grateful for all the wonderful people that surround us. We are blessed. 


Goldilocks and the 3 Vents

Lana seems to be settled down for now. The goal is to have her rest and hopefully let her lungs develop and also recover back all the portions that have collapsed. Her pulmonary hypertension remains an issue, but vascular changes usually takes time to improve. Time will be her best medicine. 

She is currently sedated so that she doesn’t try to fight with the ventilator (she's very adept at doing this). Her ABGs (Arterial Blood Gas) are routinely monitored to observe her respiratory function. She has been retaining CO2, but at least her oxygenation seems to be trending in the right direction. It took several attempts to get her to this point. She was put on 3 different types of mechanical ventilators. The third type they tried on her seems to do the trick.  Although she is still very much in critical condition, she is having a better day today. It's nerve racking because things could change drastically in a matter of moments. Friday she was on a nasal cannula, Sunday she was back on CPAP, and by Tuesday evening she was being intubated. =(

Lana on the HFOV (High Frequency Oscillatory Ventilator) delivering oxygen and nitric oxide.

Lana on the HFOV (High Frequency Oscillatory Ventilator) delivering oxygen and nitric oxide.

I took some photos with my phone yesterday just to illustrate the madness that took place. 

It might be hard to tell, but there were 8 people in her room. It was like this for the good chunk of the day.

It might be hard to tell, but there were 8 people in her room. It was like this for the good chunk of the day.

She went through a total of 3 different types of vents yesterday. She's just like Goldilocks because she has to get it... just right.

She went through a total of 3 different types of vents yesterday. She's just like Goldilocks because she has to get it... just right.

TPN, Vancomycin, Morphine, Midazolam.

TPN, Vancomycin, Morphine, Midazolam.

Oh, The Places You'll Go

“Sometimes you will take one step forward, and then two steps back”, is what Lana’s neonatologist told us right before she was delivered. However, the last few days feels like more of a full on back pedal. Her oxygen requirements are maxed out on the highest vent settings, but her oxygen saturations aren’t as high as we would like it to be. She is currently receiving a morphine drip to keep her settled because she is easily agitated at the moment. Her urine output were low this morning, which suggests poor oxygen perfusion to her kidneys. The goal is to let her recover and also allow for less workload on her lungs. Thus, she was placed on another type of ventilator called a High Frequency Oscillatory Ventilator (HFOV). Stimulation must be minimized as much as possible, so lights are dimmed and noises are kept low. (Pathophysiology & Treatment)

Lana also has several machines parked in her room. I didn't think they could all even fit... 

Since, we have been requested to keep noises to a minimum, I haven't been able to read the book I've been reading almost daily to Lana. In lieu of this, I will simply share a few pages from her book. The book is, "Oh, The Places You'll Go!" by Dr.Seuss

It's like driving down the interstate looking through a soda straw...

That's exactly what it's  been like since the weekend. You're going fast, but have little idea of what's around the corner. Even though Lana has been back on CPAP since Sunday morning, she has continued to show signs of respiratory distress. Her oxygen needs have kept creeping up until it finally hit a tipping point earlier today. She went from requiring 38% FiO2 all way up to 70% FiO2. This represents the percentage of oxygen needed to maintain adequate organ function (in contrast, we typically require 21%, which is considered room air).

Therefore, the decision was made to place her back on the ventilator to give her some rest and let the vent take over the job of breathing. In addition, they ordered for her to receive inhaled nitric oxide (iNO), to hopefully alleviate her pulmonary hypertension and thus increase her oxygen saturation. There's actually an eerie feeling seeing Lana back on the ventilator. This feels like week 1 all over again. Coincidentally, they gave us new wristbands since the one's we had are falling to smithereens. Also, today marks her second month of life (she was born on August 14th) .One can't help but feel like we're back at square one...

It goes without saying that we are hoping she will respond to this treatment and get back on the right track. We know she's been through a lot but we will continue to pray for her health and support her in any way possible.

3 lbs!!!

First and foremost, we would like to thank everyone for their ongoing support. We really appreciate the words of encouragement and all the prayers. We’re very blessed to be surrounded with loving friends and family.

Tonight, Lana finally weighed in over 3 pounds for the first time ever. More than likely she will lose some and then gain some, but the overall trend is what’s important. She's even finally big enough to fit into some preemie baby clothes. =)

​

Her ECHO results came back over the weekend, and they noted that her PDA as being “moderate to large”. It’s concerning enough that they will keep doing weekly ECHOs, but for now, she looks good clinically.


Her glucose have started to become labile again, so they will do more tests and get a consult from endocrinology. We’re hoping that it’s just part of her body (in this case her pancreas) trying to figure out how to regulate itself.

It's Always Worth the Fight

Lana is scheduled for another ECHO today to keep an eye on her PDA, and also track the progression of a possible pulmonary hypertension due to the PDA. If it starts to worsen, then they may opt for surgery as opposed to waiting for it to close. However, surgery in and of itself carries risks as well, and that’s why we are hoping that Lana’s PDA can slowly improve on its own without intervention.

I’ve been speaking a lot with the physicians and also the nurse practitioners. They are all rock stars in their fields, and therefore I try to listen to them as carefully as possible. They have been adamant about not googling things on the internet because there is very sparse information, and the ones that are there may not be accurate. "Stay away from the internet", I remember one of the nurse practitioners tell me. So naturally, as soon as I got home I started googling everything under the sun…

As they had warned me, I ran into a lot of articles that raised my anxiety even more so. Some of which I already expected, and some just made me worry to a greater degree. However, I did run across some comforting information as well. Studies do show that babies with involved families tend to have an advantage. No one is really sure as to how or why this works, but being in the medical field myself, I know that there are plenty of things in medicine that science has no explanation for.

We figured that although we aren’t always able to hold her or touch her, at least can remind her that her family is always here. We decorated her room with our family photos, and all the things we plan to do with her once she’s ready to come home. Whenever she opens her eyes, we want her to know that life is always worth fighting for.

We can do all the outdoor stuff that you want to do Lana...

We can do all the outdoor stuff that you want to do Lana...

Or if you don't feel like it, we can just play indoors too!

Or if you don't feel like it, we can just play indoors too!