Moosen

This video was a cute one that Alisha took when Roscoe was in his moose outfit. It's one of her favorite outfits to put him in because he looks so snuggly:

To me he bears a strange resemblance to a character from one of my favorite movies of all-time:

Jumping Jacks

Here's a little video of an exercise that Alisha does with Roscoe. She holds him steady upright and lets him bounce, using his own leg strength. His core strength is where he'll be weakest (as most preemies are) but his legs are pretty strong for his size. If a nurse is new, they're often surprised at his strength because they're not used to a 6lb baby having developed his muscles outside the womb for almost 5 months.

Chugging a half gallon of milk

Roscoe has now increased in size more than 500% from when he was born. That's pretty amazing to think about, since in the past 4 months I (hopefully) have increased 0% in size. Part of that is due to how much he's eating. At just over 6lb he's eating 75mL about every 3-4 hours.

Using my super-math-that-actually-ended-up-useful-from-college algebra skills, we can get an idea of how much he's eating. Taking my weight of 150lb, it would be like me drinking 60oz (almost a full half gallon) of milk every 3-4 hours. Over 1 day that would end up over 3 gallons of milk. No wonder he's getting so big! If I had to drink that much milk, I'd wear a diaper too.

Milk does a body good

Our Little Convict

Here are some fun pictures of Roscoe in a striped outfit. With the strips and his beanie hat (or as they say in Texas, "toboggan") he looks like a little jailbird.

Waking Hours

Roscoe has been sleeping a lot. He alternates between being very alert like this:

and very sleepy like this:

Either way, he's pretty fun to watch!

Eating & Bostentan

Roscoe has been eating more volume lately, although most of it is still delivered through the feeding tube. On average he'll eat 20mL from a bottle and then the remainder of his 75mL feeding through the tube. Alisha and I think he might just be lazy!

On Saturday we were there during the time when the nurse administers Roscoe's bosentan/tracleer, which is the medication that UCSF approved to treat his hypertension. I think it's ironic that the nurse has to put on a splash shield and mouth protector when injecting a substance into a little baby's mouth.

Today Alisha said that Roscoe measured 6lb 5.2oz, so he had a small amount of growth. Our main areas of prayer are for him to grow and for his breathing to improve. His breathing is the major holdup for him being able to come home, because he's still got to get down to 21% oxygen and transfer to another machine (nasal cannula/vapotherm) before his mandatory 7-day pre-release stability period. We're now thinking it will be at least another month until he comes home (due to lung progress) so we are probably looking at April.

Comfortable and Happy

Alisha and I returned from our anniversary, where we went to Lake Tahoe for 2 days and 1 night (we stayed here). Roscoe has seemed much more comfortable for the past few days since he's ramped up to full feedings (75mL). He has a feeding tube in, but his PICC line is removed. He eats anywhere from 10mL to 40mL by mouth, then the rest of his feeding they deliver through the feeding tube.

Overall he's seemed much less cranky and generally more comfortable. He's even been sleeping for longer stretches, which is a "big boy" behavior. Through the night sometimes the nurses said he'll sleep for 5 hours, then during the day he'll take 2-3 hour naps. This is a great improvement over his previous pattern of only sleeping 1-2 hours at a time. The more he sleeps, the more he'll grow! His last measurement showed him at 19.2 inches long and 6lb 4oz+.

Today we'll be going to the hospital to catch up on some time with Roscoe, so we'll hopefully get some pictures and videos to share.

My Adventure Book

Alisha has been working on a project for Roscoe lately. The project is taken from one of her favorite movies: Up. Alisha loves everything whimsical, so of course a movie about a house that is lifted by colorful balloons to the top of a waterfall is right up her alley.

Alisha put a leather cover over an old photo album we had. Then she painted it to look like the one from the movie. She even went to the trouble of trying to find colors that exactly matched the movie, and drew an outline for the letters so they were lopsided like the movie as well.

Here is hers:

and here are some screenshots from the movie:

Alisha plans to fill the book with pictures of Roscoe's hospital adventure, once his journey has made it to the next chapter ...

Roscoe's Room (redux)

I thought that today I could give a wider view of Roscoe's room, since we've made some changes since we last put up pictures of it (here and here). 

kids: Can you find Nolan Ryan?

On the way to work I thought about how much care we (mostly Alisha) are putting into preparing Roscoe's room before he comes home. Each time we go in it, we think of what it will be like to pick him out of the bed without wires or tubes attached, and to rock him to sleep in the chair, and to play with him on the floor.

That thought reminded me that Jesus is doing the same for us. He waits for us and anticipates our arrival, just like we are waiting for Roscoe. Just like Roscoe's situation, Jesus knows that some healing needs to occur in our lives before we are ready to go and live with him:

"Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going." Thomas said to him, “Lord, we don’t know where you are going, so how can we know the way?” Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. (John 14:1-6)

Lord, come quickly (Revelation 22:20). Roscoe, heal quickly.

Adventure is Everywhere

About 2 weeks ago, Roscoe's favorite artist finished a banner that we'd asked him to paint for Roscoe's room. Alisha had measured a spot above the closet and shaped a piece of canvas to fit, then had given the canvas to Paul to fill in with color. Here's the final result:

We asked him to paint something on the theme "Adventure is Everywhere" so Roscoe would see that God has created such a great world for us to explore. There is adventure wherever we look, whether it's climbing a mountain and looking out across the peak or whether it's lifting up a small rock and watching a bug scurry. All of God's creation makes the genius and power of our creator evident:

For since the creation of the world God's invisible qualities - his eternal power and divine nature - have been clearly seen, being understood from what has been made, so that people are without excuse. (Romans 1:20)

Paul even added Roscoe in a hot-air balloon, colored to match the curtains in his room:

If you are creative and filled with wonder, you may really like this pairing of a bird soaring with the mountains. If you are an engineer, then you may wonder "How could a bird pull a banner that big?". As I have found, it's best to just not ask questions and enjoy how it looks.

For an extra touch of depth, the banner is pulled by a seagull that was given to me by my grandparents in 1978. You can see the marker that my grandma painted 36 years ago underneath the twine that's tied around the seagull. This bird hung from the ceiling in my room growing up, and now it will hang in Roscoe's room too.

What's that bubbling sound?

Some people have been curious about the bubbling noise in the background of some of the videos. In the video below, we tried to show where that noise is coming from:

The blue tube keeps the air heated and the white tube brings moist, oxygenated air. They adjust the air pressure that's pushed into Roscoe's lungs with the numbered tube sticking out of the top of the clear box with bubbles. They adjust the oxygen percentage with a dial up higher.

The bubbling sound not only puts Roscoe to sleep, but it also puts us to sleep when we're holding him later in the day. We are curious to see once Roscoe comes home if Roscoe will need noise to sleep, or if he'll be able to sleep without white noise.

Eating like a champ

Roscoe's feedings have been improving over the past few days since his surgery. Last night he set a new personal record by eating 50mL in one feeding. He hasn't gained much more weight because they've had him on a diuretic, and they've had him on a diuretic because he got a blood transfusion on Thursday. He got the blood transfusion because his red blood cell count dropped from 33 to 28 after the surgery (which they said is normal) and in a baby his size they want it to stay above 30.

Overall, Roscoe seems to have more energy and be less cranky than he has been the past 2 weeks, so all of these are good signs. God is blessing Roscoe.

Baby Exercises

With all of the time Alisha has been spending with Roscoe lately, sometimes he is sleepy and just wants to lay in her arms and sometimes he wants to be active. During those active times, this is one of the ways that Alisha keeps him busy. She sits Roscoe on her lap and lets him try to hold himself up with his torso. A nurse told her that preemies tend to utilize their legs more than their torso, so it's good to do this to build up his stability:

Famous Roommates

Roscoe has some famous roommates. When Alisha was in the waiting room for Roscoe's stomach surgery, she noticed someone talking about Kaiser preemies on the news and turned to watch. To her surprise, she saw the mom of two twins (Hudson & Grayson) that were roommates with Roscoe for a little over 1 month. Roscoe shared a room with these twins before his trip to UCSF. Alisha thought the twins were just under 2lb each when they were born.

Here's the news video which shows some familiar sights from the Kaiser NICU:

http://www.news10.net/videos/news/local/community/2014/02/11/5411377/

For those who came here to see our star, here's a video that Alisha took of Roscoe before he went into surgery earlier this week:

Surgery Results

Roscoe's stomach surgery yesterday went very well. They called him to the operating room at 3pm but he didn't get in until 5pm because the prior patient had trouble waking up. The surgeon and anesthesiologist (whew, I spelled it) were very concerned about complications that could arise from his pulmonary hypertension. Thankfully, due to the powerful prayers being offered for him, everything went great. The surgeon said that his oxygen dropped near the start of the surgery, but that it was due to a mechanical problem (they didn't get the ventilator tube in the right place) rather than anything caused by his pulmonary hypertension.

As a bonus, not only is Roscoe safe but he has minimal external scarring. The surgeon was able to perform a minimally invasive (lathroscopic) surgery. The only external scars can be seen in the pictures below. They are three taped "X" marks around his belly button. One was for the camera and the others were used for clamps and cutting instruments.

While it is very impressive that he could come out of surgery with such minimal external evidence, think of how amazing it was that Jesus healed people he'd just met without a sterile operating room and without any cutting or recovery time.

After the surgery, Roscoe was drowsy but started eating. Here he is eating 10mL of pedialyte about an hour after the surgery. His feedings will get stepped up gradually until he's eating full amounts within a few days.

Holding Roscoe

Roscoe's surgery is still planned for today and will happen within a few hours. I'll update the blog when we have the results.

In the meantime, here are some videos of Alisha and I holding Roscoe. Thankfully God gave Alisha a flexible job where she's able to take time off to spend with Roscoe to help his development. She now spends about 6-7 hours a day with him at the hospital, which isn't an easy thing because of all the alerts going off and the discomfort of not being in your own home. To kick it off, she's not allowed to eat in the room with him (but I have helped her sneak a cracker or two).

When he gets fussy, there's lots of this going on:

And here's Roscoe when he's held by his dad. The light was lower when we shot this video, so it's a little grainy:

Surgery scheduled for Tuesday afternoon

Alisha just learned from the doctor that Roscoe's surgery is scheduled for tomorrow afternoon (Tuesday). She didn't get an official time yet, but learned this because she happened to be in the room when the doctor spoke with the respiratory therapist. They scheduled the surgery after doing an ultrasound on Roscoe's lungs today and a heart echo yesterday. Alisha snapped some pictures as they wheeled Roscoe down the hallway to the ultrasound machine. She said his eyes lit up with seeing all of the moving objects and new sights in the hallway.

She said she was laughing hard at the picture below, because he was peeking out from behind the blanket. Maybe this means he'll really like playing hide-and-seek once he's at home with a dad who will play it with him?

The good news is that they scheduled the surgery, which means that they are confident in the progress they've seen in Roscoe. It's also good news for Roscoe because he'll be able to eat again after the surgery is completed. The bad news is that the surgery carries minor risk due to Roscoe's pulmonary hypertension. 

One of the surgeons spoke with me and explained why his pulmonary hypertension would be a risk for stomach surgery. The surgeon said that they will need to put Roscoe to sleep and use a ventilator to keep his lungs moving. If Roscoe's lungs sense that the body isn't getting enough oxygen, the blood vessels in the lungs will shrink to push blood out of the part of the lung that isn't working. If this happens, they will have to use nitric oxide or other treatments from UCSF to dilate the blood vessels in his lungs. It's a minor risk, but it just adds complication to what is normally a relatively easy surgery. As always, please pray that God watches over Roscoe and continues this great work of physical salvation that he's begun to carry out in our little boy.

Bath Time #2

This past Saturday, Alisha and I were able to give Roscoe his second bath. He has had other ones, but we just hadn't been there for them. You'll notice in the videos that he has a makeshift protector around his left arm, because that's the arm with the PICC (IV) line in it. To keep water out of the PICC dressing (no, it's not ranch or honey mustard) we wrapped a diaper around his arm, then closed it in a plastic bag, and taped the end to make a seal.

When we start doing something with him, sometimes he gives his "I'm unsure" grunts and whines like this:

Then before he realizes that he's getting a bath and getting his headgear off, he whines. Once the headgear is off, he likes it.

Then for the bath time you can see he is very intrigued at the new sensations and experiences, so he's engaged the whole time. Unfortunately bath time is short because he starts getting cold. We ran out of "tape" (ie: SD card space) so this bath video got cut short.

Please pray that the results of his heart/lung echo will look good enough to the doctors that they'll feel confident in doing surgery to correct his pyloric stenosis (stomach tightening).

Comforted by a Monkey

When we are at the hospital (Alisha is the one who spends the majority of the time there), lots of what we do is just trying to get Roscoe to settle down and rest. We know that as he grows bigger he'll become more stable, and the way he grows is by resting and not burning energy. That means that the more he can rest, the more stable he'll become and the sooner we'll get to take him home.

The big problem is that Roscoe doesn't realize this and he has a different agenda about what should happen. Here's Alisha trying to pacify him with the monkey pacifier that he got from UCSF. It's a back-and-forth battle of wills.

We sing to Roscoe and talk to him alot too, but when we're doing that we're often too focused on him (or too shy) to remember to record it for everyone to see.

Lately I've started playing games with him to stimulate his mind. When he moves his hand to touch my finger, I'll say "fingers" each time he does it so that he learns cause and effect. We've noticed that he'll flop his hand around when he knows something is nearby until he's able to grab onto it, then he locks on and doesn't let go. Sometimes his little finger tips turn white because he's holding on so tight!

Another game I have started playing with him has to do with proximity (but he doesn't know that word yet). I will bring the pacifier out about 10-12" in front of him, then say "Here it comes" and bring it in closer and closer until it touches his lips. I am hoping that he starts being able to predict that the pacifier will touch his lips before it gets there, just based on it visually getting bigger as it gets nearer. If not, I can just show him this video from my youth where I learned the concept:

Happy 4-month old

Yesterday Roscoe turned 4 months old. It's hard to believe that he's that old, since he weighed 5lb 9oz yesterday. Alisha spent a good portion of yesterday (from 11:30am to 7pm) sitting with him. Today he had a 2oz weight gain (for a total of 5lb 11oz) which I think was brought on by him being able to relax more in the arms of his mommy. His oxygen levels are still improved, hovering around 21-23%.

While Alisha was there with him she took this video of him being amazed at the mobile. His mind is really working in this one.

Echo-cardiogram on Monday

There hasn't been much to update regarding Roscoe, now that he's back in Roseville. Yesterday the doctors came up with a plan for the surgery on his pyloric stenosis. The surgeon was concerned that Roscoe's pulmonary hypertension may cause problems with the pyloric stenosis surgery, so he wants to make sure Roscoe's lungs are responding well to the treatment before operating.

Today they will be doubling Roscoe's bosentan/tracleer medication, which follows the plan laid out by UCSF. On Monday they will use an echo-cardiogram to see how Roscoe's lungs have improved. If they see enough improvement to make the surgeon comfortable, then the pyloric stenosis surgery will be scheduled (after which Roscoe can resume eating). If the progess is insufficient, then Roscoe will continue to be fed through an IV until his lungs show enough progress.

Safe & Sound

Roscoe successfully made it back from UCSF yesterday and arrived at Kaiser Roseville in late afternoon. A funny coincidence was that he arrived a few hours after Trevor and Sara Nelson's baby. The difference was that the other baby (Rendi Nelson) arrived by birth, but Roscoe arrived in an ambulance. As you can see in the picture below, he brought his monkey pacifier back with him from UCSF:

Now Roscoe is safe & sound back in Roseville where we can visit him each day. Alisha already went to see him today and he's made great progress. His oxygen requirement is down to the 21-23% range (when it was 25-30% before he left) and he tips the scales at 5lb 8.5oz.

When we were down at UCSF on Saturday, they had a gratitude tree where kids and parents would put up what they were thankful for.

 Here's what Alisha and I both wrote:

Looking back at what has happened, there are many times where God could have left Roscoe in need or not provided healing and the outcome wouldn't have been what we are blessed with now. If we had our choice, we wouldn't have chosen this path, but now that we're on it we can appreciate the blessings that God has flown our way.

Returning to Kaiser Roseville

Today they transfer Roscoe from UCSF back to Kaiser Roseville around 1-2pm. We wanted to share some videos of Roscoe's journey to UCSF last Tuesday to show what he's probably going through today. Roscoe's vacation to San Francisco was very similar to a vacation that you might take. First he made sure to get plenty of rest before the trip:

Then he made sure his bags were packed. The box he's in is a mobile version of the machinery he was hooked up to in the NICU:

Then he got all of the kids into the car. He rode with 1 doctor, 1 respiratory tech, 2 nurses, 2 ambulance personnel. Notice how he waved goodbye to Alisha to say "Don't worry mommy, I'll be just fine":

Then he drove off to his destination (100+ miles away). I will have to ask him later how many times he had to answer the nurses when they said "Are we there yet?":

PS: For a fun side-note, did you know that wild parrots live in San Francisco? Alisha and I got lunch at the Ferry Building on Saturday, and walked up on what we thought was a large flock of pigeons. When we got closer, we saw over 100 wild parrots in a cluster of trees! Apparently they migrate around the city and we were lucky enough to catch them while we were out. Here are some pictures that show parrots like the ones we saw. Apparently there was a 2003 documentary made about them called The Wild Parrots of Telegraph Hill. Who knew?

More of Roscoe in the big city

We shot the videos below after Roscoe's procedure. Since UCSF took out his feeding tube for the procedure, we got a clear look at his mouth and chin without any obstructions.

And here's our little man squirming around and then striking a pose for the camera:

We also wanted to include a panoramic video that we shot from the UCSF balcony across the street. There isn't much of a view from Roscoe's room (unless you like looking at other patients' rooms and imagining your own little version of The Sims). However, the UCSF medical center is at the top of a big hill, so you get a great view of most of the city when there aren't buildings in the way. The video is pointing north from the UCSF medical center, and starts at where the bay feeds into the Pacific Ocean, then passes by the golden gate bridge, then some cool looking church, and finally the big buildings in San Francisco.

We are excited for Roscoe to come "home" (to Kaiser Roseville) tomorrow!

Laying in his bed

Today Alisha and I went back to UCSF to visit Roscoe. Alisha said he was very fussy for the second half of yesterday, because they are feeding him with an IV until he returns to Roseville (we have disagreed, but they insist). That means Roscoe is getting his required nutrition, but his stomach feels empty which makes him upset.

Luckily we took a few videos while he was calm to show what it was like to sit at his bedside on Tuesday and Wednesday. Here's what he looked like when he was relaxed. They are using an overhead heater to keep him warm, so he's been going these past few days with no clothes except his diaper:

This is what the view looks like when we're sitting in the lounge chair next to his bed. If you look closely you can see both his breathing and his heartbeat:

This is what he looks like when we stand at the head of his bed, just another view of what it's like to be in the room with him for those who can't actually be there:

I wonder what God's view of Roscoe looks like? It would be a wonderful thing to see things through the eyes of our creator. Does he see Roscoe as defective or as a baby who was born exactly as intended?

Starship Enterprise

These pictures show the operating room (catheter lab) where Roscoe's procedure was done to measure the pressure in the vessel between his left lung and his heart. To measure the pressure they inserted a line into his inner thigh and threaded it all the way up through his major veins and into the vessel near his heart.

Everything was white and glossy, so it looked like the set of a space movie. The big circular thing in the middle is the bed where Roscoe laid, and I'm assuming they used the array of monitors (on the left) to watch their progress.

Alisha snapped this picture of Roscoe on the operating table while I held in his pacifier. The room was pretty full, since I think they had 3-4 doctors involved and 3 or more nurses to assist. Below is a picture of Roscoe on his air bed while some of the nurses got him prepped:

We left the room shortly after this and they invited us in to see Roscoe about 5 hours later after he'd been transferred downstairs and stabilized. Lots of prayers from all over the country happened that day, and we can see the evidence of God's answers in what happened in this room after we left. Roscoe is firmly in God's hands.