Story Time

Alisha spends most of her day with Roscoe. She feeds him, cleans him, and generally makes sure he's happy. Now that he's getting older, he needs more mental stimulation than just the basic care & feeding he needed when he was younger. Before when he would cry, we'd know he was either hungry or dirty. Now he'll sometimes cry and he's telling us "Pick me up, I want to be held!" or he's telling us "I want to look around, I don't like looking at the ceiling".

One of the ways Alisha feeds Roscoe the mental stimulation he needs is by reading to him. Here she is reading a book that I got her this past Christmas. It's a collection of golden books that are illustrated by Mary Blair, who was one of a few original Disney concept art designers. She worked on movies like Alice in Wonderland and Peter Pan, so the book is a great way to introduce Roscoe to the creativity that works inside mommy's head:

He isn't yet developed enough to reach out and play with the pages or attempt to turn to the next page, but we can see his eyes scanning over the pages. He also expresses more interest in some pages (usually high-contrast) than others.

CO2 at 66, no tethered cord

Yesterday we got two pieces of good news. The first was that Roscoe had another CO2 measurement and his number came in at 66, which is lower than the prior measurement of 72 and the measurement of 75 before that. We are hoping this indicates a trend of growth in his lungs.

The second piece of good news was that the MRI results showed that he does not have a tethered cord. We were very thankful, because each human intervention into his healing process involve mistakes and the spinal column is somewhere we definitely don't want mistakes to be made. We aren't quite sure what the doctors saw in the ultrasound that caused them to say something was abnormal. Unless we get an explanation from the doctors about it, we'll just assume that Roscoe's cord was tethered but that God answered our prayers and healed it before the doctors could see it with the MRI.

I'll close this blog post with two pictures of Roscoe from his bath last week. I think this first one might be good to show to his date for prom or to a girl he's trying to impress in high school. What a cute kid.

Waiting on MRI Results

Roscoe just finished his MRI about 1 hour ago and things went fine. The doctors chose not to sedate him (with drugs) because of the risks associated with his pulmonary hypertension. Instead, they hoped that by keeping him awake right up until the MRI, he would sleep through it. That approach worked, but not as planned.

We finished Roscoe's feeding and then hoped to have time to rock him to sleep, but instead the nurse asked us to put him into the mobile cart so he'd fall asleep there and wouldn't wake up when he got transferred. They wrapped him in a cloth and belted him into an inflatable blue plastic sleeve to keep him still. Basically it was like an inflatable hot dog bun with straps across the top and Roscoe was the wiener. He didn't like it.

Roscoe screamed in a tantrum-like scream until they lowered his oxygen pressure, and even then he was still quite ruffled. As they carted him down the hallway, he stayed calm as long as he had his beloved monkey pacifier in his mouth.

We waited in the waiting room while they took him to the MRI room. We didn't pass a sign that said "Caution: electromagnet always on". I told Alisha that I wanted to throw my keys and other metal things down the hallway past the sign to see what would happen, but she advised otherwise.

For the first few minutes, we heard an occasional cry from Roscoe before the MRI process started. Once the MRI noises started, we didn't hear much. The noises kept going, so we assumed that meant he was remaining still. After the MRI was done, they said he did great. As they wheeled him back down the hallway, they remarked that the MRI noises almost put him to sleep. I guess he's so used to loud noises from his hospital room that the MRI made him feel comfortable.

We won't hear the MRI results for a few days, but when we do we'll post them here. We were encouraged by a nurse in the NICU who'd had twins, where one of the twins had a tethered cord. She said that the surgery took about 1 hour and was straightforward (as much as spinal surgery can be) so we are hoping for something that simple for Roscoe. If we'd gone home on April 1st as planned, this would have gone unnoticed until much later when Roscoe may have had trouble going to the bathroom, crawling, or walking as a result. Now we'll just wait and see ...

Tethered Cord

When we started Roscoe's journey, we thought it would be a short section of bumpy road followed by lots of smooth sailing (to mix analogies). We found out today that doctors were curious about a small dimple they saw at the top of Roscoe's rear end, called a "sacral dimple". They said that the dimple may indicate some non-threatening issues with his spine.

Kaiser ran an ultrasound on his spine this morning and suspect that Roscoe has a tethered spinal cord. Tomorrow they will perform an MRI which allows them to have a more detailed view of his spine. If his spinal cord is tethered, it will mean another surgery for our little man. While it sounds very serious, it's not nearly as threatening as other stuff Roscoe has been through.

When we told Roscoe the news, this was the look on his face:

We'll keep the blog updated with any news we get about this latest development. The good news is that he has good leg movement and seems responsive to touch, so that indicates his nervous system is working great in his lower half. Some articles have said that numbness may be an effect of a tethered spinal cord. If so, then maybe this was God's way of guarding Roscoe from the pain of 7+ months of blood samples taken from his feet?

Seriously, we couldn't make up a story like Roscoe's if we tried.

How old is Roscoe?

When people ask us a question like "So how old is Roscoe now?" you might see us hesitate and fumble over our words. The reason for our confusion is that the nature of the answer depends on the reference point the asker is using. Sometimes they are asking for Roscoe's adjusted (gestationally) age and sometimes they're asking for his legal age. Sometimes they are just making conversation.

Roscoe was born on October 6th, but his due date was December 24th. That means today his adjusted age is 4 months, but his legal age is a little over 6.5 months. Doctors will measure his development based upon his adjusted age, but his birthday will be according to his legal age. So the question for you is: do you want to know medical history or do you want to eat some cake? :)

Developmentally, Roscoe is on track. He is grasping at things, turning his head toward sounds, smiling at people who talk to him (some more than others), and engaging in "coo" and "aah" conversation. His breathing still needs work, because a blood test today showed his CO2 at 72. But look at what a conversationalist he is:

After reading this blog post, some ladies may be tempted to derive an arbitrary due date for themselves so that they can refer to themselves by an "adjusted" age in the late 20's instead of their legal age above 40. Please do not succumb to this temptation. You are not 29 and neither am I. Let's both just accept the facts.

Baby Talk

Roscoe has started getting very vocal. Alisha said that in the mornings when Roscoe wakes up, he's very happy so nurses will come by (even those who aren't caring for him) and talk to him so he'll smile and them and mumble back. Sometimes he's still talkative by the time I get there at the end of the day, and sometimes he's more in the mood to look outside and watch the wind blow the leaves on the trees.

On Saturday we took this video of him gabbing with us about his day:

Then on Sunday we took this video. He talked for a little while and then looked at me, trying to figure out if he should be amused at the noises I was making, or worried that he came from my gene pool.

CO2 numbers higher, confused

Roscoe had another CO2 measurement this morning, and his numbers came back higher at 76. Alisha and I are frustrated and confused, because we thought that after his last measurement he was headed in the right direction. He is still on 5L of pressurized air at 45% oxygen. This confuses us because the CO2 number now is practically the same that it was when he was on 0.1L of non-pressurized air at 100% oxygen (ready to go home).

Today we are expecting the doctors to want to increase his breathing support, and I put in a request that they talk to me directly before they do something like that. If we get any answers or clarity, we'll keep everyone updated. Until then, enjoy some baby jumping jacks and tickles in the video below! He constantly makes me smile.

Happy Easter

Roscoe had a special Easter message that he wanted to post today. Hope you enjoy!

Remember that at one time the savior of all humanity was once about the size of this little boy. That unique individual was both God and man. He grew for 33 years until he sacrificed himself and rose from the dead. I don't know what is in store for Roscoe's life, but I will make it my aim to have him follow the lifestyle and dedication of God's son, Jesus.

Cloth Book

Alisha and I have received many gifts offered to us from kind people all over the United States. One of those gifts came to us from a friend of my mom's who lives in the Sequim, WA area. It is a hand-made cloth book with lots of interactive pages. We've tried to take a video of Roscoe with the book for a while now, but we'd always be missing one person to shoot the video or he was too fussy when we tried taking it:

Finally a few days ago we got him to behave well enough through an entire reading of the book:

The book has lots of interactive pages with snaps, buttons, zippers, hidden pockets, counting, and colors. Once he gets to the stage where he realizes that he can interact with things beyond his own hands, I think he'll appreciate the book more. We definitely appreciated the work that went into such a thoughtful gift.

Thank you to everyone who continues to show us kindness and pray for our little boy. He's getting bigger (8lb 3.9oz yesterday) and we are looking forward to the day he comes home.

Holding Pattern

There isn't much new to report about Roscoe's progress. He hasn't gone backwards, and his lung development will be more of a tortoise (slow and steady) than a hare. For those of you reading younger than 23, a "hare" is a rabbit and rabbits are fast.

This is a short video of Roscoe on his second walk. He's wearing a hat that Alisha got him recently. I think it makes him look like a small fisherman or golfer.

One of the things we've started doing in the past 1-2 weeks is holding him upright and looking outward. His neck strength is getting pretty good where he can hold his head up straight even if I lean slightly. I won't be making roller coaster motions anytime soon, but this keeps him active and gives him a different perspective than staring up at the ceiling.

Higher Vapotherm pressure, Lower CO2

Roscoe had a surprise CO2 measurement yesterday (rather than today, when we expected it). Thankfully in answer to all of your prayers, his CO2 number came in at 63. The prior measurement was 75, so it's a great improvement. He's currently at a high level of breathing support (5L of pressurized air at 45% oxygen), so he won't be coming home soon.

We are disappointed that he's seemingly taken a few months' step backwards in his breathing, but really his progress was somewhat false because his CO2 numbers went up and we didn't know it. We are thankful that he didn't regress any further where he'd need to go back on the dreaded CPAP mask. Now he's trying to work his way back to where he was a month ago and further develop his lungs, all while maintaining the great growth numbers he's been showing. Today he is 8lb 1.1oz.

Watching his Mobile

It's funny how having a child changes you, even if they don't live under your roof. This past year instead of whatever I'd normally get for my birthday, I picked it up a (new) mobile for Roscoe on craigslist. I saw this model somewhere and really liked the combination of black & white and colors, so I zeroed in on it specifically.

Roscoe seems to like it really well. When he's bored the mobile seems to keep his attention fairly well, even when it's not in motion. Here's a video I took a few days ago where he was actively enjoying the mobile. I only wish he had words to express the joy in his fun little mind:

What Forgiveness Feels Like

I have been a Christian for quite some time now. As such, I've gotten familiar with the idea of "forgiveness". I don't try to sin (ie: do something morally wrong) but when I do I have become familiar with the process of asking for God to forgive me, struggling to relieve myself of the guilt, and then feeling at ease again. After repeating a process like this over-and-over, sometimes you forget what it first felt like to be forgiven. Last week, Alisha and I got a reminder.

We received the current tally for Roscoe's medical bills in the mail. The bills are broken up into Roscoe's Kaiser stay from 10/6/13 to 1/28/14 (when he was transferred to UCSF):

$1,183,989.50

his stay at UCSF from 1/28/14 to 2/3/14:

$261,125.02

and his stay at Kaiser after returning from UCSF, from 2/3/14 until now:

$638,471.07 (and counting ...)

If you've got a quick brain or a hair trigger on your calculator, you'll know that the above bills add up to a grand total of:

$2,083,585.59

Were it not for the insurance that God has provided us, we certainly would have been bankrupted. This total is more than every penny of income I'd expect to earn from the time Roscoe comes home until the time he leaves for college. We would have had to sell our house, liquidate our belongings, clean out our bank account, and then live the next 2-3 decades in debt. The course of our lives would have been drastically altered. However, the actual amount we'll have to pay will be around $2,000-$3,000.

This is what forgiveness feels like. It is a sense of regaining a state of being that you could never attain by your own initiative, no matter what level of effort or desire you summoned. It's the feeling that you owe your life's work to someone, because they saved you from a dire situation. It's a feeling of gratitude, relief, comfort, and peace.

If you don't have this feeling in regard to morality, it can only be found in Christ:

"If we confess our sins, he is faithful and just and will purify us from all unrighteousness."- 1 John 1:9

"And now what are you waiting for? Get up, be baptized and wash your sins away, calling on his name."- Acts 22:16

... and this is what forgiveness LOOKS like:

Roscoe is now 27 weeks old. That comes out to roughly this much for every waking moment he's had on this earth:
... $77,170 per week
... $11,024 per day
... $459 per hour

But can you put a price on a smile like that?

CO2 numbers slightly lower

Roscoe's CO2 numbers were slightly lower (good) today. The previous measurement was 78 and today's measurement was 75. Hopefully these numbers will drop over time as Roscoe's lungs grow and heal. He is still on vapotherm with 4 liters of pressurized air at 32% oxygen. Though this feels like a step backwards (given the levels he was at a few weeks ago), I am thankful that he didn't get put back on the bubble CPAP, which the doctor mentioned might happen if his numbers continued to get worse.

Not Ready Yet

Yesterday Alisha and I got some time with a doctor to ask questions about why Roscoe's CO2 numbers have been going higher as he's been on more breathing support. My hypothesis (it makes you sound smart if you use words like "hypothesis" around doctors) was that the added incoming pressure was making it harder for Roscoe to breathe out, therefore making his CO2 numbers higher. The doctor said that there was a difference between CO2 residing in his lungs (not breathed out) and CO2 in his bloodstream (lungs not fully functional).

The doctor let us look at his historical CO2 numbers and we were surprised to see them range from 68-75 all through the previous month. The last time the numbers looked really great was for the first week of March when they were in the 53-55 range. On March 6th his CO2 was 55 and on March 12th his CO2 was 70 (and had stayed ~70 since). We looked at more data and saw that right around the time his CO2 numbers shot up was when his vapotherm pressure was reduced from 4.0 to 3.0 to 2.0 over the course of a few days, and then he was put onto the nasal cannula on March 11th.

The doctor said that CO2 levels of ~70 means that he has very little reserve, so a simple cold could put him back into the hospital. The future plan is to take another blood test on Monday to check his CO2 levels, and adjust his breathing support accordingly. They said that next time they wean him from the higher pressure vapotherm, it will be slower and in smaller increments. It appears that Roscoe (and God) were not yet ready for him to come home just yet, and it will be at least a little while longer.

"Rejoice in hope,
be patient in tribulation,
be constant in prayer."
- Romans 12:12

Roscoe's First Stroll

Since it looks like Roscoe will stay at the hospital for a little while longer, Alisha asked for permission for us to take him out on a walk once a day. The stroll will give him new sights and sounds (trees, birds, fresh air) to keep him mentally stimulated, plus it's just fun for us to take him out like a normal baby. We got permission to do the walks yesterday, so here's how the first walk went:

First we got Roscoe ready. This involved putting his carseat into the stroller, putting him into the carseat, putting the portable oxygen tank underneath the stroller, hooking up a portable oximeter/heart rate monitor, and switching his air supply from the hospital wall to the portable tank. He was rather awake and intrigued for the entire process.

Then the unthinkable happened. Just before we got ready to stroll him out of the room, down the hallway, and out the door he started falling asleep. Down the main hallway in the NICU he was pretty much out, so we didn't get to see much of a first reaction to the real outside world. While we walked and bumped around, he stayed asleep so we couldn't help but laugh at the irony:

He stayed sleeping for probably another 10-15 minutes while we did a few laps around the hospital:

Then finally on the last 1-2 laps he started waking up and seeing the sights around him. Near the end of the walk we stopped underneath some trees so he could see the trees and hear the birds nearby.

We ran low on oxygen in the portable tank. The tank was the same one we used overnight with him in our hospital room stay. When we realized the tank was low, we headed back inside:

Never forget to thank God for all of the beauty you pass by, the fresh air you breathe, and the sounds you hear as you walk amidst his creation. We get so used to the blessings he's given us that many times we walk right past them without acknowledging the creator who put them here for our benefit. Just like Roscoe, sometimes we have trouble keeping our eyes open. Once we open them, it is wonderful.

Goofing around with Dad

Earlier this week, Alisha sent me some pictures to show on the blog but I overlooked them in my email account. She sent them to me again so that I'd be able to post them. This first one is him sleeping after I bounced him while looking out the window:

And the second one is me trying to make the same face that he was, looking out the window:

He's a super fun kid! I hope we can take him home soon. There have been some downs this week (he is back on vapotherm today) but we were reminded this week just how lucky we are to have Roscoe. He is an absolute gift from God and were it not for prayer, I think we would have lost him early on. We'll post more details as we hear them from the doctors:

Growth Comparison

Roscoe's blood test was conducted this morning and his CO2 numbers rose, which means he won't be coming home this week. The doctors will consult with each other and determine the next plans for his care and possible release. His numbers came back at 78, when they were 72 and 69 in the two prior tests. This occurred after he was on increased oxygen pressure.

As we noted yesterday, Roscoe has been showing positive growth recently. One of the nurses printed off his growth charts which compares his growth in various ways compared with other premature babies. The standard "percentile" measurements are shown on the curved lines, where you can see that even when compared against other preemies (born 6-15 weeks premature) Roscoe is on the smaller side due to his IUGR and other complications. At least his head is within range!

A long visit with Roscoe

Roscoe has grown steadily in the past week. The doctors put him onto a mixture of milk and formula that's 24 calories per ounce (rather than standard milk which has about 20 calories per ounce). On Sunday he gained 3oz, on monday he gained 0oz, on tuesday he gained 1.5oz and then today he gained 1.5oz again. His total weight is now 7lb 13.4oz!

The videos below are an extended interaction I had with Roscoe. What a great kid!

On Thursday, Roscoe will have another blood test. The CO2 results in that test will be a topic of discussion for all of his doctors (neonatologist, cardiologist, pulmonologist, UCSF). Depending on how that conversation goes, he has a chance of coming home Saturday.

Bouncing to Sleep

At night I usually get to the hospital around 5:30pm and then stay until Roscoe goes to sleep around 7:30-8:00pm (sometimes later). He'll usually be a little fussy or hungry when I get there, so we'll feed him and do some head/neck exercises or other "learning" activity. After he gets his Bosentan dose, he's ready to go to sleep, so I bounce him around while he's looking out of his window view. The window gives him a constantly changing picture to look at to keep his mind turning. Eventually he nods off to sleep.

In the videos below you may notice me glancing at the monitors for his heart rate. That's one of the ways I can tell he's really asleep without looking at his face. His waking heart rate stays around 150-170 beats/minute, but when he's sleeping it will drop to the 100-110 range. I make sure that he's sound asleep before I set him back, so we don't have to start the process all over again.

The New Plan

Yesterday, Roscoe turned 6 months old. Alisha dug through the pictures we'd taken and came up with two that were similar to show his progress over the past 6 months:

 

and then zoomed in on his face:

 

Regarding future plans, we've received the authorization for Roscoe's medication (Bosentan) and it's already arrived at our house. We thought that we needed a "license" to administer the drug, but apparently when they used the word "authorization" the originating pharmacy was referring to payment. They needed financial authorization that Kaiser would be covering the drug before they shipped it to our house. When it arrived, we were surprised at how such a small box of pills came in such a large shipping box:

You might ask "Why is Roscoe still in the hospital, if you have the medication he needed?". What we found out was that the neonatologist (ie: normal infant doctor) was the one who planned Roscoe's departure, but they hadn't consulted with the cardiologist (heart doctor) or pulmonologist (lung doctor) about those plans. Since Roscoe has pulmonary hypertension (high blood pressure in the lungs) both the cardiologist and pulmonologist wanted his CO2 numbers to be lower before he left the hospital. They ideally want his numbers at or below 50, and his readings from last week (72) and the week prior (69) have been well above that.

The cardiologist, pulmonologist, neonatologist, and UCSF (which is the 3rd party overseeing all of his care) will be looking at Roscoe's CO2 numbers each week after they are measured and having a discussion about whether it's the right time for him to come home. That leaves things a bit murky for Alisha and I, because there's no hard number that he has to hit (50 is ideal, but they mentioned possibly releasing him if he gets to 65). As a good sign, he last measured 7lb 10.4oz so he's still gaining weight which will help supplement his lung capacity.

Familiar View, New Perspective

I took this side profile picture of Roscoe a few nights ago ...

Does it look familiar?

This reminds me of 1 Corinthians 13:12 which says "For now we see in a mirror dimly, but then face to face; now I know in part, but then I will know fully just as I also have been fully known". I'm not implying that Roscoe is the completion of the gospel / church (see v.10), but rather that it gives me another perspective (a rather literal one) on seeing "dimly" and seeing "face to face".

When looking at the ultrasound, I saw the rough outline of Roscoe's face. I knew that he had a nose, mouth, and forehead. I couldn't see the details of his nostrils, lips, eyes, or expressions until he was born. That helps me appreciate the cloudy view that Christians had in the first century when God wrote this passage through Paul. It also helps me appreciate the clarity that comes later and makes me wonder what details we should appreciate now that they couldn't see back then.

Content and Interested

We took the videos below earlier this week, showing Roscoe lying content in his bed. He was interested in me talking to him, the black shape of the camera, and the curtain behind me. I like when we can see his little wheels turning like this.

Swing with a View

Roscoe is older than most of the babies in the NICU. I think there's one here who is still older than he is. Since he's older, he gets bored with the same old "newborn stuff" and when he's bored then he's cranky. The nurses moved Roscoe to a spot in the same room, but by the window. That way he'll have plenty of action to watch during the day with the constantly changing scenery.

From what I've seen so far, he really likes it. I usually have to bounce him around to comfort him, but when he's looking out the window he's much easier to console. Looks like we might have a hiker or nature buff on our hands!

Head Control

We've started working more with Roscoe on his neck strength. His head size is actually around the 3% mark, where his body is below the 1% mark. This leaves a big head to be controlled by tiny neck muscles. Since preemies commonly have weaker necks and cores (but stronger legs) we've tried doing neck exercises with him to show him that he can control the direction where his eyes and mouth go. He's getting better!

Kicking and Looking

On the day Roscoe was supposed to come home, we received this on our doorstep. It was a sweet gesture by Alisha's sister, who had arranged to send the flowers before we posted news about the delayed exit. It brightened our day a little, and hopefully we'll be able to show Roscoe his flowers when he comes home for real:

Here's a video that we took last night. Roscoe was kicking up a storm, so we grabbed the camera and tried to catch it. In the video he's kicking a lot less than he was previously, so we tried to stimulate it by moving the blanket against his feet. Near the end of the video, we held up a mirror so everyone could see his reaction to seeing his reflection.

Tomorrow we'll show another video we took that shows him working on neck control!

Real-life Banner

This morning, Roscoe's favorite artist sent me a real-life picture that he took this morning:

which looks a whole lot like the banner he painted for Roscoe months ago:

With this kid, every day is looking like it will be an adventure! :)

Overnight with Roscoe

This is a video that Alisha took at 4:30am of Roscoe in our room on Sunday night. Across the hall was room 106 where all of the usual chatter, crying, and background noise was going on. In our room it was quiet and dark. Alisha noted that he slept really well overnight and didn't wake up crying. He was peaceful like this all night. 

He is laying in a standard new baby container with his beloved monkey pacifier sitting on his chest. We are hoping that this means he'll be able to rest more fully when he comes home, and hopefully that will translate into accelerated growth.

Thank you for everyone's comments of support on facebook. It was helpful for Alisha and I to see the mutual frustration of Roscoe's supporters. As Romans 12:15 says, "Rejoice with those who rejoice; mourn with those who mourn". It was also very helpful to be reminded how thankful we should be that he is healthy enough to talk about coming home, and to remind us that maybe Roscoe's departure from the NICU has been postponed so that he (or we) can effect someone else positively.