Saturday, November 30, 2013

Roscoe back on the breathing tube

Here is a video of Roscoe back on the breathing tube. Alisha is getting him his pacifier, which he seems to like. As of this video he is 2lb 14oz. Tomorrow he'll be 8 weeks old!


Friday, November 29, 2013

When will Roscoe come home?

A common question that Alisha and I get asked is one that we wonder ourselves: "When will Roscoe get to come home with us?". There was a list of requirements in the NICU lobby, so Alisha snapped this picture of it so we'd remember all of the goals he'll have to achieve. I don't know how they expect him to meet these goals when nobody has told him about them and when he can't even read them himself. I guess we'll have to count on God to get him there:


Here are some details about how Roscoe currently measures up:

  • For those like us who aren't familiar with medical terms, the "apnea or bradycardia" means that Roscoe can't have any heartbeat drops or breathing problems for an entire week. Currently he has a handful of drops each day.
  • Roscoe is on ~30% oxygen and will need to get back down to only 21% oxygen (normal room air), or we may go home with Roscoe on oxyen.
  • Roscoe is doing well on in maintaining his own body temperature, so we are confident he'll be able to keep himself warm when the other conditions are met.
  • For the 4-pound requirement, he is currently at 2lb 14oz, which leaves only 18oz left to go. To get him home by Christmas eve (his due date) he'll have to grow an average of almost an ounce per day.
  • He has met that 35-week gestational age requirement. Check that one off the list!
  • Roscoe hasn't started feeding yet, but the nurses said that will be his next big hurdle after getting his breathing stabilized. Roscoe will need to suck, swallow, and breathe all at the same time which may be complicated for him since he hasn't done that yet.
So there you go! I'll try and keep everyone updated when Roscoe meets one of these milestones. We are excited to bring him home, whenever will be the right time to do so.

Stuffed on Thanksgiving

On Thanksgiving, the doctors called to inform us that the night before they had to re-insert Roscoe's breathing tube. His oxygen requirements had steadily increased over the 2-3 days prior and they observed large pockets of air in his stomach. The air pockets were putting pressure on his lungs and other organs, making it harder for him to breathe. For a comparison think about how hard it was to breathe after getting seconds thirds at Thanksgiving dinner yesterday and that's how Roscoe felt on an empty stomach.


Thankfully, the nurse who cared for him last night did some belly massaging (on Roscoe) and was able to work out some of the "bubbles" in his system. Without getting graphic, her description to us about the results used the word "explosive". Roscoe's heartbeat was back down near the normal range in the 160's, when it had been in the 180's due to the increased discomfort. His caretakers will continue to leave the breathing tube in for another few days while Roscoe relaxes and regains some energy.

Thursday, November 28, 2013

Thanksgiving

Today I am thankful that this:
was born as this:

and has grown into this:

Thanks to God for all he has accomplished so far and the hope of what he'll accomplish in the future.

Wednesday, November 27, 2013

Put on some Clothes

As some of you may have noticed from previous videos, Roscoe is starting to wear clothes! When we come to see him now, his incubator lid is lifted and he's swaddled in a blanket with clothing underneath. This means that he's generating body heat and getting more exposure to voices and sounds. Here is Roscoe in an almost-onesie that Alisha got last week:

His clothing needs will be well-supplied, thanks to a HUGE gift box that we got from Caleb, Tifany, Lacie, Javan, and Westin about a week ago. Each of these gifts was individually wrapped and Alisha and I had fun opening them for Roscoe. My favorites are the superman and batman costumes (capes included) laying in the upper part of the picture. The blue jars contain an assortment of socks for Roscoe.

And here is Roscoe face-to-face with a sock monkey that Greg and Cathy Eubanks bought him. He just happened to be crying at the time we took the picture, he's not scared/angry at the sock monkey :). We put it in there for a size comparison to show people who can't visit how big Roscoe is (and how much growth he still has left):

Tuesday, November 26, 2013

Hands and Feet

As I said in the post a few days ago, one of my favorite things about Roscoe are his hands and feet. Times like this make me thankful that Alisha is a photographer. Alisha has something called a "macro" lens, which enables your camera to take pictures much closer than the human eye can see. This means that Alisha and I didn't see this level of detail on Roscoe's features until we looked at these photos below. I highly encourage you to click on each picture to view it full-screen to see all of the detail that's captured in his feet:



... and his hands:




Looking at the detail of God's design makes it clearer how much work God puts into each of us. As the saying goes, "a picture is worth a thousand words". I am amazed. Simply amazed.

Monday, November 25, 2013

Roscoe likes music

Yesterday after church while I went and picked up a stroller for Roscoe, Alisha stayed at the hospital and held him. Here's what I saw when I got back to his room:



A few days ago Alisha figured out that Roscoe is comforted by music. She noticed this when she tried turning on a little music box they had set by his incubator. Alisha listened to music quite a bit when Roscoe was growing inside her, so that may be why he seems more comfortable when sounds are playing. Here's a video of him getting a little fussy and then calming back down. He is listening to a tune that gets stuck in our heads every time we leave the hospital. We already got him a sound machine that will play more variety:


Sunday, November 24, 2013

Bright-eyed and bushy-tailed

I really like the video below. We took this after I held Roscoe for the first time and the nurse set him back in his incubator. They leave the top up now since he's able to maintain body temperature, so both of us can interact with him a lot more. The lights were on and Roscoe was wide awake and looking around. He does some preemie shakes at points through the video that are pretty cute:


What I noticed was that his brain is already able to blink his eyelids simultaneously and control each eye to point in roughly the same direction. Just think about all that would need to happen inside his body (or yours) to make those things happen. As you watch him blink and stare, think about the brain activity, nervous system communication, muscle control, visual processing, and reflexes that are all happening to make this little guy look around and wave at the camera.

"God thunders with his voice wondrously, doing things we cannot comprehend ... whether for correction, or for his world, or for lovingkindness, He causes it to happen" (Job 37:5,13 - NASB)

Saturday, November 23, 2013

Tiny Handiwork

One of my favorite things to watch on Roscoe are his hands. I like watching them because they move even when other parts of him are still. His hands are also very detailed. Someone once said that you can tell the quality of a painter by looking at how well they painted a subject's hands. Since Roscoe hasn't gained alot of baby fat yet, his hands look like a small model of an adult's hands. They have wrinkles, knuckles, fingernails (even a white part and a pink part), and fingerprints. When Alisha and I were holding Roscoe, we got to put our hands in the same position as his were for comparison:



This picture was just too cute for me to pass up posting it somewhere. Roscoe is trying to look up at Alisha the first time she was holding him, like he was trying to find out who his mommy was.

Roscoe being held by Mom & Dad

Last night I got to hold Roscoe for the first time. As you'll see in the video, I got to hold him swaddled like you'd normally hold a baby, instead of skin-to-skin (even though I changed into a button-up shirt just for that purpose). They said that Roscoe doesn't like getting too warm, so he might be more agreeable if he was swaddled instead. My hand is blocking much of his head because I didn't want him to turn to the side, since it would mess up his breathing mask.


Here is a zoomed in video of Alisha holding Roscoe from Wednesday night:


Roscoe isn't out of the woods yet as far as stability goes. Last night after I finished holding him he had some heart rate drops and was very agitated and wouldn't go to sleep. His heart rate is also high again, probably because his heart is having to work harder since he's on reduced fluids for his PDA valve (which still had a small/medium opening the last time they checked). His heart rate was around 200 when he was awake and 170 when he was sleeping. The nurse said that some of the agitation might be coming from the steroids (they started weaning him off of them yesterday), because they make a person uncomfortable. He also had lots of changes recently so that may be another reason why he was upset.

Please pray for continued lung development, more stability, and relaxation to come over Roscoe. Thank you to everyone for your continued striving with us in prayer to God, who is overseeing and furthering all of Roscoe's positive developments.


Friday, November 22, 2013

Breathing Tube Removed

Roscoe had another good day yesterday. He made enough progress on the ventilator that they replaced his breathing tube with a ventilator mask. This is great because it means he's progressing in terms of lung development and it also stops the damage to his lungs that would be caused by a breathing tube. God is helping Roscoe to make great strides this week.

Here is a video that I took before Alisha changed his diaper and then held him for the second time. With his breathing tube removed he was able to start sucking on a pacifier. Seeing him playing with a pacifier and opening his eyes makes him look so much more like a baby that's ready to go home:

The next big step for Roscoe will be to learn to feed from a bottle, so that they can remove his feeding tube. After that, he'll learn to feed directly from Alisha. As Bob Wiley said, "Baby steps".

Thursday, November 21, 2013

Roscoe's first Kangaroo Care

Yesterday Alisha got a call at 3pm that she was approved for Kangaroo Care with Roscoe. Kangaroo Care is skin-to-skin contact that gets the baby used to being held and being close to the parents. Alisha and I were very excited so we rushed down to the hospital and got to hold Roscoe for about 1.5 hours. While she was holding him they told us that he'd been very stable and that his current weight was now 2lbs 9.5oz!

The videos below show Roscoe getting ready for his first hug and Alisha holding him. His eyes were very sensitive from an eye exam (which he passed) earlier in the day:




Thank you to God for getting Roscoe to this great milestone!

Wednesday, November 20, 2013

Kangaroo Care

Sorry there hasn't been much to update with today, but I just got word from Alisha that she'll be able to do kangaroo care for the first time tonight! She and I are both really excited about it. I am excited because I'm assuming that "kangaroo care" means that we get to pet a baby kangaroo and maybe feed it a carrot. I think Alisha knows what it really means. Tomorrow we'll post a video that shows how it went. I think this is a sign that Roscoe is progressing well.

Tuesday, November 19, 2013

Colonization, not Infection

We got great news from the doctor last night: Roscoe does not have an infection. This confused us because they detected the common staph bacteria in his breathing tube and also on an IV insertion point in his hand. The doctor said that the blood test result came back and it showed that his blood did not have the staph bacteria! The doctor said that the bacteria they detected earlier was a colonization (on the surface of his lungs & skin), and not an infection (in his blood). This is good news because it means that the bacteria was ON Roscoe, not IN Roscoe. See the previous post about cheese for a detailed explanation on the difference.

The doctor said that they also did not detect heightened levels of white blood cells in Roscoe's lungs, which also indicates that his body is not fighting an infection. You might ask "What are the odds that Roscoe would have the same bacteria in a sore on his hand and in his breathing tube, but not in his blood stream?". Alisha and I both took this to be an answer to prayer. We assume that Roscoe did have an infection in his blood, and that God removed the infection as an answer to our prayer. We believe that he responds to our prayers, and this is yet another one of his responses to remind us that he's there supporting Roscoe through this process.

The lack of an infection means that Roscoe has chronic lung disease, which is caused by damage to his lungs from the ventilator tube. The high blood pressure in Roscoe's lungs was most likely caused by inflammation from the ventilator tube, not an infection. The doctors have halted his antibiotic treatments (since he doesn't have an infection) and today they start his steroid treatments. The steroids will be used to strengthen his lungs temporarily so that they can support his body's oxygen requirements without the breathing tube. The doctors are keeping him on a short duration and low dose of steroids so that the side-effects of steroid use will be kept to a minimum. Please pray that God will support Roscoe as he is gradually weaned from the breathing tube over these next few days.

Monday, November 18, 2013

Perspective

Sometimes a little perspective can change things. Alisha and I were talking about perspective on the way home from the hospital on Saturday. On one hand we have a child who is on a breathing tube, on a feeding tube, is only 2lb and 5oz, who has a staph infection, a heart problem, and pressure in his lungs. On the other hand, we have a child who has successfully lived for 6 weeks now, is able to breathe, is digesting his food well and increasing his feedings, has grown to double his birthweight, whose heartbeat has settled, is maintaining his body heat, and who tolerates care much better than when he was first born. Which way should we view the situation? It's really all about perspective. Roscoe is in his current state and how we feel about the situation won't change what has happened and won't make him any better. Since our feelings won't make Roscoe any better, it's up to us to choose how we respond to this situation we're in to choose which perspective we take. A great lesson on perspective comes from Matthew 6:25-34. For the visually-oriented learners, try looking at two perspectives on this picture. Do you see an old woman or a young woman?



Here's a video that Alisha took on Saturday to give people a perspective on what it feels like to walk up to Roscoe's incubator in person. We keep trying different ways to get across how small he is, since many can't visit in person. What's still amazing to us is that right now he's 2x bigger than he was when he was first born:


God has brought Roscoe a long way and he's not done yet!

Sunday, November 17, 2013

Infection has Returned

Summary:
Here are Roscoe's main issues in the order they'll hopefully get taken care of. Prayers in these areas would be greatly appreciated. Read below for details.
1. Infection - Roscoe has an infection that's causing strain on his lungs.
2. Lungs - Roscoe's breathing tube is causing damage, but his lungs are too weak to function without help.

Details:
Yesterday the doctor informed us that Roscoe's previous staph infection has returned. You can read about the previous infection on this blog post. She said that most likely what happened was that the antibiotics killed off most of the prior infection, but that some of the bacteria "hid" in Roscoe while the antibiotics killed off the rest. Once the antibiotic treatments stopped, the bacteria came back out of hiding. At this point the bacteria has been detected on the surface of his lungs and in a sample they took from an IV insertion point, so she is fairly certain it is in his bloodstream. The doctor said that she is hoping the bacteria doesn't get into his bones or joints, because it is much harder to eradicate. She said she hasn't seen any external evidence of bone or joint infection (puffiness around the joints), so that's a good sign.

The treatment for the infection will be mild antibiotics to start. The doctor said that they don't like using harsh antibiotics initially because it gives them some "big guns" to bring out later, if needed. She also said that they need to be careful that the bacteria doesn't adapt to the antibiotics and form a super-bacteria that is then resistant to the treatment.

Once the bacteria (staph) has been treated, the doctors will take some steps to get Roscoe's breathing tube out while keeping him stable. The longer the breathing tube is left in, the more damage it can possibly cause to his vocal cords and lungs (even though it's there to give assistance). To supplement Roscoe's lungs they plan to give him steroid shots. These steroids will weaken his immune system, so they can't give steroids until the infection is eradicated. Another treatment the doctor mentioned was Viagra, which had its origins in reducing high blood pressure (hypertension). The Viagra would reduce the blood pressure in his lungs.

The doctor wants to reduce the blood pressure in his lungs because it is causing strain on his heart. She said that this strain may cause heart failure if left untreated for an extended period. Not only is Roscoe's heart now having to pump against high pressure (like trying to blow air into a full balloon), but also the higher pressure causes his PDA valve to open which reduces the oxygen that's getting out to the rest of his body. She said that if the pressure gets high enough in his lungs, it can cause the blood flow to even reverse and flow back from his lungs into his heart. This isn't an immediate danger, but that's why she's wanting to start so soon on the infection treatments: so that it doesn't become an immediate danger later on.

Bonus:
Here's a video that I took on Friday of Alisha comforting Roscoe by putting light pressure on his head. It makes him feel contained like he's still in the womb, similar to tightly swaddling a baby. After she did it for a little while, he woke up and started looking around like this:



Saturday, November 16, 2013

Pulmonary Hypertension

Alisha and I are heading to the hospital to visit Roscoe today. Last night the doctor let us know that she suspects Roscoe has pulmonary hypertension. One of my professors in college used to call a phrase like "pulmonary hypertension" a 25-cent phrase that you'd whip out at the dinner table when you're trying to impress someone's family. If you're not trying to impress people, you can just say it as "high blood pressure in his lungs".

Usually the blood pressure in a baby's lungs goes down after the baby is born, but Roscoe's has gone up. One possible contributor may be his PDA valve being open, but the doctors said that it's much smaller now and isn't even their primary concern. They said that the largest contributing factor to high blood pressure in his lungs would be another infection. They found traces of an infection in his air tube, which implies that the infection exists on the surface of his lungs. What they are testing for now (and will find out within a day or two) is whether the infection is also in his blood stream. The way I explained it to Alisha is that the infection could be like cheese with surface mold (on the surface of his lungs) or cheese with mold running all the way through it (in his blood stream):
 
We are hoping it is just a surface infection, because if it's in his blood stream then it will be another round of antibiotics. Before you ask, no we haven't been feeding Roscoe any cheese, and no we don't think his lungs are made of cheddar (but they might be some form of Brie). We'll post other updates when we learn more about Roscoe's cheese ... I mean lungs.

Later today, I'll upload a video of Alisha holding Roscoe's head and bottom to comfort him yesterday when he was fiesty.

Friday, November 15, 2013

Hospital Bill #1: $102,048.55

Here is the total hospital bill that we received for Alisha's 24-day stay from the point she was admitted to the point where she was released (not including Roscoe's care).


As you can tell by the huge difference between the total charges and the amount we owe, I am extremely thankful for the financial blessing that God has given us. Had we needed to pay the huge amount it would have devastated us financially and caused enormous amounts of stress. When we chose our health care limits this past January we had no idea of what we'd face. Thankfully God provided for us so that we can use his finances (which we are taking care of) for other spiritual purposes.

Hospital Bill Guessing Game

A few days ago, Alisha and I received a hospital bill in the mail for the time that she spent in the hospital. I thought it would be a fun game to play to see if people could guess the total amount. The charges include her stay in the labor & delivery room for 20 days, her stay in the post-delivery room for 4 days, and all of the medicines, IVs, and exams that they conducted while she was there, along with the C-section surgery that delivered Roscoe. The total bill does NOT include the bill for any of Roscoe's care after he was born (that will be another surprise later on).

So what is your guess? How much was the total bill? Post your guess below or on this facebook thread. I'll post the answer at 2pm PST.

Thursday, November 14, 2013

Houston, we have eyelashes!

One comment that many people have made when they've come to see Roscoe in person is that he's so complete. I think that's one of the benefits I've received from going through this process: getting to see how a baby looks after only 6 months of development instead of 9 months. Many people (including myself) expected his features to have less detail than a full-grown newborn, so they were surprised to see that he's a complete person, just smaller. He has creases in his palms where his hands move, he has fingerprints and fingernails, each finger and toe moves independently, he has shoulder blades, eyebrows, a full set of ribs, and can move his tongue.

Noticing these little details reminds me of a sermon that Glen Osburn gave in Placerville on creation. He pointed out that God created things in the solar system that we have yet to discover. He also pointed out that God has created processes on an atomic level (like how the brain works and learns) that we don't completely comprehend. Glen pointed out that God is just waiting for us to one day discover these things and see more of what he's created. He pictured God's excitement saying "I can't wait until they discover X next!".

Yesterday Alisha took a video of Roscoe now that he's back on the smaller ventilator. She zoomed in close and got the first look at Roscoe's eyelashes! They have been there the whole time, we just hadn't discovered them until now. Hopefully he'll inherit his cousin Javan's eyelashes that all the girls seem to fawn over.



Wednesday, November 13, 2013

Progress to a Smaller Ventilator

Alisha brought home good news yesterday about Roscoe's progress. He was moved from the big, oscillating ventilator back to a standard smaller one. They did this because he was showing progress and the doctors want to get him off of the ventilator altogether eventually. His oxygen requirements have dropped from the high numbers last week (40-50%) to 30% earlier this week. Yesterday Alisha said that Roscoe was down to 26% on the smaller ventilator. As a reminder, 21% is the lowest they'll go since that's the mixture of oxygen in normal room air:

Since Roscoe is back on this smaller ventilator, it doesn't vibrate his body and therefore he's much less agitated by it. That means they need to sedate him less, so he's more alert for visitors. Unfortunately I haven't been able to visit him for a few days due to a mild cold/cough, but as long as he's doing well and making progress I am not bothered. Here's a picture that Alisha snapped on her phone yesterday of Roscoe on the new ventilator:

Tomorrow I hope to post some more fun pictures or videos that Alisha took when she visited the little guy. Keep him in your prayers, especially the progress in lung and heart development. The doctors said that as long as he's stable they'll hold off on the EKG (and threat of surgery). Pray that God uses his almighty hands to pinch Roscoe's PDA valve permanently closed, and pray that God breathes life and strength into his tiny lungs.

Tuesday, November 12, 2013

Roscoe's Room: Part 2

The previous post about Roscoe's room can be seen here. We'll pick up where we left off and look just to the right of the dresser.
Starting at the floor, there's a small shelf that Alisha got and painted the interior orange (previously it was dark red). In the shelf are a light up star, old baseball mitts from the 1930's or 1940's, and a model GT-40 that I had. The light blue and orange matched the room theme, so it made the cut. 
The baseballs are brand new and taken from a box that I got when my grandfather Frank Briggs passed away in 1998. I don't know if I'll ever have the courage to actually use them, so they might just remain display-only baseballs that I pass down to Roscoe. The top one is missing because we have it at the hospital for the baseball picture that Alisha took before the world series. The top of the shelf looks like this:
The "You Shall See Wonders" print is something that Lana Wilson got for Alisha. The pictures, binoculars, bookends, and vintage children's encyclopedia set are things that we picked up at various yard and estate sales.

Mounted higher on the wall is my favorite part of the entire room:
The shelf is a cloud shape that Alisha made that we nailed to the front of a plain, white shelf. We also mounted an authentic phonograph horn to the shelf. The shelf currently holds three stuffed animals: a lamb pillow that my mom made when Tifany (Roscoe's aunt) and I were kids, Alisha's childhood stuffed animal named "Mr. Lion", and a stuffed animal from Lana named "Mr. Fox" (I call him "Raymond" in formal settings).

The moon shape was something we cut out of plywood. The real work was done when Paul Tate painted it to mimic old paper moon photo backdrops like the one below. Alisha plans to use it occasionally for photo shoots:

To the right of the rocking chair is Roscoe's bed. Alisha and I took a day trip down to the bay area and picked it up one Saturday when we were visiting the Salinas congregation. On top of each post is a bunny.

Once we find (or make) the right frame, we also plan to mount the ship painting above Roscoe's bed. We both really like how it ties into the adventure theme. The painting isn't made by anyone famous, it's just nice to look at. We briefly considered modifying the painting to add Peter Pan and Wendy, which would turn the boat into Captain Hook's ship:

Alisha made the sheer curtains for the 3 box windows out of strips of old fabric:

To the right of the bed is a closet, then between the closet and the door looks like this. The desk and globe we got from a local swap meet. Alisha bought the chalkboard from an antique store, then was later bummed to find out that it's also sold at Ikea:

This is where we'll prepare Roscoe for his first day of school in 2018. It sounds like a long time off, but I'm sure it'll be here before we know it.

Monday, November 11, 2013

PDA surgery and Vocal Cord Risk

We haven't heard anything from the doctors about Roscoe's heart today. We had expected to hear the results of an EKG today where they'd measure his PDA valve to see how much it is still open. When Alisha went in they said that EKG procedures are usually scheduled for Wednesday, so we might still be waiting another few days.

In the meantime, I looked up PDA surgery results. The good news is that PDA surgeries are generally safe and don't endanger the life of the child. The bad news is that there's a 50% chance that during the procedure the doctors will hit a nerve that controls Roscoe's vocal cord, thereby paralyzing that vocal cord:

   http://www.preemieprimer.com/preemies-pda-ligation-and-vocal-cord-paralysis/

If that happens, then Roscoe may have a raspy voice, softer cry, and face additional breathing/swallowing problems in the future. Despite the audible benefit of a quieter baby, Alisha and I are praying feverishly that if the surgery does come that Roscoe's vocal cords make it safely through.

We'll keep the blog updated as we hear from the doctors about Roscoe's progress and plans for the future. Please keep his heart and voice in your prayers.

Roscoe's Room: Part 1

Alisha started work on Roscoe's room early this year before we knew if it was a boy/girl and before she was even pregnant. Luckily she chose a neutral theme that would work equally well for a boy or girl, so the switch from Dottie to Roscoe wasn't as big of an adjustment for us. As she worked on the room, we'd keep it closed and when people visited we'd make excuses about the room being cluttered as we gave them a tour of the house so they wouldn't ask questions about why we had a baby room and no baby.

We thought it would be good to share pictures of what she's done so far on his room so everyone can get introduced to where Roscoe will live once he comes home (hopefully mid-to-late December). There is lots to show, so rather than dump it all into a single post I decided to split it over two days to appreciate the details of all the work she's put in.

As with anything Alisha does, the first step is colors. She even boiled it down to a color palette:

The theme of the room is "Adventure", which means we planned to either have a boy who climbed trees or a girl who threw rocks at boys who climbed trees. As you walk into the room, the first thing you see is this:
Alisha made the curtains from fabric that is orange and while stripes and looks like an old circus tent. She has a baby scale that she's used in photo shoots on top of the dresser. The dresser was restored by a client of hers and we both love the work they did. The dresser was off-white when we got it, so Alisha painted the insets a light blue to match the room. On top of the dresser there's a "be Brave" print that Alisha got from etsy:
She had the print hanging in her hospital room before Roscoe was born. Next to the print is a Disney postcard that I got from my grandparents when I was a toddler in 1978. The magnifying glass looks old, but it's just a reproduction from World Market.

Next to the dresser is a vintage quiver filled with arrows that we got at an estate sale. Most of the arrows are blunt practice arrows, but some are actually razor-tipped hunting arrows. We'll figure out how to keep him from shooting them at us by the time he gets home. Michael Fancher was the first to point out that this reminded him of this bible verse:
Like arrows in the hands of a warrior are children born in one's youth. Blessed is the man whose quiver is full of them. They will not be put to shame when they contend with their opponents in court. - Psalm 127:4-5

On the wall to the left of the dresser is a collage that Alisha made from various things we've picked up or made:
The big safety pin is one in a set of 3 that my sister got us. In the thick white frame is Alisha's grandfather's 7th grade report card (which was heavily modified by her grandfather after he got it from the teachers). I made the painting of water and trees a while ago while being taught by a great man named Don Domenigoni. Alisha made the board which contains Psalm 139:13 for Avonlee Mackey's baby shower, but it fits Roscoe pretty well too. Alisha also made cloth liners for the wall baskets where we'll hold clean diapers or other baby clutter. The rest of the stuff we got from various yard sales and Alisha put it together in her artistic way to make it look much better than the sellers originally envisioned.

Click any of the above pictures for a more detailed view of that part of the room. Tomorrow I'll post some pictures of Roscoe's bed and also of my favorite corner in his room. Trust me, you'll like it!

Sunday, November 10, 2013

Psalm 136

Last week at church we read Psalm 136. That psalm is a song that was written to remind the Israelites of the many ways that God had shown love to them throughout their history. In reading it, you'll see a repeating pattern of a line about something God did and then a line that says "His love endures forever". This was a call-and-response way for God's people to recount things he'd done and then acknowledge how God's love echoed through those actions. It was a "count your blessings" of sorts with a focus on God's love behind the blessings, rather than the blessings themselves.

Below is my own little take on Psalm 136 and how God's love has echoed through my son's life thus far:

God blessed us with a son of our own
      His love endures forever.
He let us see him move in the womb
      His love endures forever.
He kept Alisha from having morning sickness
      His love endures forever.
He gave us warning that our boy was small
      His love endures forever.
so that we could prepare our minds for the trial ahead
      His love endures forever.
He gave us stories to read
      His love endures forever.
from people who'd walked this path before us
      His love endures forever.
He gave us the support of family and friends
      His love endures forever.
He grew trees, flowers, and plants around us
      His love endures forever.
to show us that he could grow our little boy
      His love endures forever.
He trained the doctors and nurses
      His love endures forever.
so that one day they would take care of Roscoe
      His love endures forever.
He gave us machines and medicines
      His love endures forever.
He gave us medical coverage
      His love endures forever.
He saved Roscoe from birth at 26 weeks
      His love endures forever.
and gave him 3 weeks to prepare in the hospital
      His love endures forever.
He made Roscoe strong to withstand the contractions
      His love endures forever.
He answered our prayer for 500 grams
      His love endures forever.
He answered our prayer for a standard C-section
      His love endures forever.
He answered our prayer for a healthy birth
      His love endures forever.
He gave Roscoe 10 fingers and 10 toes
      His love endures forever.
He gave him eyes that see and ears that hear
      His love endures forever.
He protected Roscoe's brain from damage
      His love endures forever.
He gave him a strong heart
      His love endures forever.
He gave him lungs to breathe
      His love endures forever.
He gave him healthy digestion
      His love endures forever.
He healed Roscoe's infections
      His love endures forever.
He let us touch his hands, hold his feet, and comfort his head
      His love endures forever.
He gave Roscoe growth, health, and life
      His love endures forever.

My hope is that by reading this it might inspire you (as Psalm 136 inspired me) to take a look back at how God's love has manifested itself in your life. You'll see some big ways and some small ways, but I guarantee you that you'll find more the longer you look.

Saturday, November 9, 2013

Up close and personal

Yesterday Alisha heard from the nurses that Roscoe lost weight (back under 2lbs), but the nurses expected that amount of weight loss since he is now on fluid restrictions and is taking a diuretic. We are praying hard that the fluid restrictions will close his PDA valve. The doctor spoke with Alisha and said that they will do another EKG on Monday to measure the PDA valve in his heart. If the valve hasn't shown much progress then they will talk to us about surgery. The doctor said that the surgery will involve making an incision between his ribs under his armpit and then through that incision tying a string around the PDA valve to force it closed. I don't know if they then tie the string to a doorknob and then slam the door shut, but that's what I'd do.

The videos below are short, but they are some of our favorite ones that Alisha has taken so far. We especially like the close up one because it shows his eyebrows. You can also see that his hair has grown slightly thicker on the side of his head. Pretty soon he'll surpass his dad's follicle count:



Friday, November 8, 2013

Holding Pattern

Yesterday Alisha and I went to visit Roscoe and he is starting to heavily ramp up his food intake. He is now up to 10mL of milk every 3 hours, which comes out to 2.7 fl oz per day. The nurses said that they're planning to increase his milk intake by 1-2mL per day. If Roscoe keeps digesting food well and gaining weight then this weekend they will take him off of the supplemental nutrition he's had the whole time and his sole nutrition will come from milk. He was 2lb 4.5oz last night, but will most likely lose weight today due to fluid restrictions.

Unfortunately yesterday Alisha also got news from the doctor that Roscoe's PDA valve is open and is allowing a "medium to large" amount of blood to circulate incorrectly, thus causing less oxygen to get to the rest of his body. Apparently they didn't hear it as a heart murmur because it was opening larger than they thought. They will keep him on fluid restrictions for ~4 days and if that doesn't resolve the issue then I think the next option is heart surgery. They said the surgery would last about 30 minutes and it would involve tying off the valve so that it is physically restricted from opening. We are praying that God will reach into Roscoe and close the valve to avoid the stress of surgery (stress for Roscoe and us).

When we arrived to see Roscoe yesterday we were treated to the most alert and awake Roscoe that we've seen in about 2 weeks. Here are some videos of him looking around. I'll try to post more later today or tomorrow:


I especially like the yawn he does right at the start of this video:

Thursday, November 7, 2013

Texas Signs

This morning one of Alisha's close friends, Thalita (pronounced "tah-lee-tah"), was travelling through Alisha's home state of Texas and she made an interesting discovery. On I-20 there are two towns separated by about 30 miles. One town is named "Roscoe" and the other town is named "Nolan"! You can see her facebook post about it here:

   https://www.facebook.com/photo.php?fbid=10200738476571239

If you'd like to check out the namesake towns of our little guy, you can do so virtually on google maps.

As for how Roscoe is doing, he's had some ups and downs. On the good side, he hasn't had any scary episodes since Sunday night. He also had his first eye exam and everything looked great. We were concerned about this because sometimes the higher percentages of oxygen given to preemies cause vision issues. He also measured at 2lb 3oz yesterday!

On the down side, Roscoe's PDA valve has opened back up so the doctors will once again be restricting his fluids. They'll keep his feedings at their current levels, but will be giving him a diuretic to rid his internals of any excess liquids. They'll do this for 4-5 days in hopes that the valve closes. After this point, they'll try other options which may include surgery. Roscoe also hasn't been progressing on the ventilator as well as the doctors would like, but they said occasionally some babies are just slow on the uptake. Please continue to pray that God heals Roscoe's heart and lungs. The creator of all air and minerals can certainly heal these little organs that make use of the air and minerals to support the life of a little boy he has created.

Wednesday, November 6, 2013

A Little Puffy

The past few days Roscoe has looked a little puffy. The nurses said that it may be due to the sedatives or other medication they are giving him. He looked really puffy a few days ago and now he's tapered off to only slightly puffy. We were curious if this puffiness would have contributed to his weight gain, but the nurses also said that his diaper "output" has indicated that he's not retaining fluids so they think it is actual weight gain.

Here are some videos that Alisha took yesterday. You can see that his eyes are still a little puffy:


Since he's still sedated (to keep him from getting agitated by the ventilator), he is sleeping most of the time we're there. We know that it's best for him to sleep, but we want to look at him also. Sometimes we're left with peering through a small slit in the blanket that covers his incubator. From our perspective it looks a little like this:



Tuesday, November 5, 2013

Fat Baby

We have great news to share! Alisha is at the hospital right now and she said that in his nightly weigh-in, Roscoe measured over 2lb 1oz. This is a big milestone because he's gained almost a pound during the past two weeks. Roscoe was born 4 weeks and 2 days ago, but he didn't gain any weight for the first two weeks. This is an answer to prayer and a great trajectory that we hope continues into the future. Three pounds, here we come!

Below is a picture of the name tag that one of Roscoe's favorite nurses made for him. She likes doing scrapbook stuff, so she was gracious enough to make this fun name tag for our little boy.

Roscoe has also been much more stable for the past 2 days since his episode on Sunday. Thank you for the prayers and support. The nurses reassured us that his episode shouldn't have any long-term consequences, but we are continuing to pray all the same.

Monday, November 4, 2013

Timing is Everything

Sometimes, timing is everything. After an encouraging day at church yesterday, Alisha and I dropped off things at home and then went to see Roscoe. Usually we'll go straight from church to see him, then go home afterwards but this time we changed it. With that little change we got quite a big scare that we wouldn't have seen otherwise.

We walked into Roscoe's room and his SpO2 measurement (the amount of oxygen in his skin) level was in the 75% range, which is well below the 85-100% normal range. In this example below (taken weeks ago when his heart rate was high) you can see the blue number "94" for his SpO2 measurement. This is the number that had dropped to 75%:

When the number goes outside of the target range, a mild alarm goes off to get the nurse's attention. At the time we walked in, the alarm was going off and the nurse was already looking at him and trying to resolve the 75% issue. While we stood there we watched his numbers drop (over the course of about 5 minutes) into the 60% range, then 50%, then 40%, then 30%. At that point the nurse called for help from another nurse in the room, and called the respiratory expert into the room. Roscoe's oxygenation continued to drop to 20%, then 10%, then eventually down to 1-2%. Roscoe was rather pale at this point. Alisha and I stood by and prayed together, then prayed separately in our minds.

They lifted the lid to his incubator and hooked up a hand-operated ventilator and turned his oxygen up to 100%. The nurse kept squeezing the rubber bulb and his oxygenation gradually came up to the 50% range. They called a doctor into the room and after looking at the results she determined that a ventilator change they'd made earlier in the day had led to Roscoe's lung collapsing. The doctor called for the ventilator settings to be restored and Roscoe returned to stable numbers.

Apparently Roscoe's blood results were looking so good that at 7am on Sunday they'd reduced his breathing support by about 20%. Roscoe's lungs were too weak for that drastic of a reduction, so his lungs eventually weakened and one or both of them collapsed later in the day just before we arrived. Alisha and I were just fortunate enough to arrive to see the culmination of his problems.

Perhaps this was Roscoe reminding us that he's still a preemie or it was God reminding us that we still need his help. Either way, it was a scary time to stand by and feel completely helpless. Watching Roscoe powerless on that table reminds me how we sometimes get into situations where our only hope is God. Sometimes, timing is everything.

"You see, at just the right time, when we were still powerless, Christ died for the ungodly." -Romans 5:6

Vibrating Roscoe

You may have noticed that we haven't had as many pictures or video of Roscoe recently. With this post I'll try to explain why. Early last week they hooked up Roscoe to a new ventilator to help spur his lung development. The old ventilator would push breaths of air in and out of his lungs, but the new ventilator rapidly vibrates his entire body. All of the doctors and nurses have said this ventilator is specifically used to stimulate areas of his lungs to develop. Here's how his belly looks when he's on the new ventilator:



Employ one of Jesus' principles and put yourself in Roscoe's tiny shoes: how would you feel if you were hooked up to a machine that vibrated your entire body 24-hours a day? After a little bit of that, I'd get quickly annoyed. Roscoe tolerated it for a little while but then started getting frustrated. Since his heart rate goes up when he gets frustrated and they can't take him off of this ventilator, the nurses have been sedating Roscoe to keep him calm and not agitated. Unfortunately, this means that Roscoe is almost always bundled up, not moving around, and sleeping. Here is the most movement we've captured in the past few days:



We are hoping that Roscoe's lungs will develop to the point where the oscillating ventilator is no longer necessary, so that he can return to being the active, stable, growing boy that we hope God wants him to be.


Saturday, November 2, 2013

Hold hands with Roscoe

Today we have a special project for everyone who has been following Roscoe's progress, but has yet to meet him. Everyone who has seen Roscoe in person has remarked how the pictures give some idea of how small he is, and the videos give a better idea, but it's still different than standing in front of him in person.

On Friday the nurses made up this birth announcement with Roscoe's hand prints and footprints from just before Halloween. His hands and feet are bigger now than when he was born, but they don't do this while preemies are unstable. This will be the first interactive blog post, because you should be able to click the picture below to see the large version. If you print out the large version on a standard 8.5x11 piece of paper, you'll get your own copy that shows the real size of his hands and feet. 


We know that lots of kids out there have been praying for Roscoe and this will be a fun way for them to get to "touch" Roscoe's hands and feet to make the connection to him a little more real and a little more personal. Hope you like it!

Friday, November 1, 2013

What about future pregnancies?

Many of you reading may be wondering how Alisha and I ended up with a 1lb 3oz baby. As the saying goes, "hindsight is 20/20". Today I thought I'd explain some of what the doctors found out when they did Alisha's C-section back on October 6th. It'll also explain whether we should expect to hit problems (or as they say at work, "opportunities") like this in the future.

The first problem that Roscoe ran into was that his placenta, which supplies nutrients and blood flow. The placenta was undersized at about 25% of the size of a normal placenta. The placenta also had "lakes", which are pools of blood that show up in the middle of the placenta. They show up as big blank spots on an ultrasound like this:
The doctors are still determining whether this was caused by a genetic issue or just an unfortunate series of events. Yesterday Alisha submitted some blood samples that the doctors will send to a lab to determine whether she has a genetic trait that would cause an abnormally small or defective placenta. If she does, then that could mean we'd face a similar situation with any future kids. If the small placenta just happened (like any other defect), then this problem probably won't happen again.

The second problem Roscoe ran into was Alisha's uterus. Alisha's uterus has two abnormalities: it is heart-shaped ("bicornuate") and it has a separator ("septate").
 

Neither of these abnormalities will prevent us from having kids in the future, but they may lead to mild speedbumps. Specifically, one side of the heart shape is smaller than the other, so it will leave less room for the baby to grow (less than 1% of women have this). Since there's a separator which goes about 1/3 of the way through, it also closes the baby mostly into one half of the uterus (about 2% of women have this). After we learned this, Alisha realized why she always felt Roscoe on one side of her belly: he was stuck over there because of the separator! Luckily Roscoe was stuck on the larger side.

These abnormalities didn't cause the early delivery or growth restriction, but we were fortunate to learn that her uterus was built this way after they did the C-section. The only difficulty they might cause would be to make future pregnancies a little more cramped and less able to swim around freely (read more here). We do plan to have more kids (if God is willing) so we were thankful that God answered our prayers and gave the doctors the skill/opportunity to do a standard C-section, which allows for natural childbirth in future pregnancies.

If you are continuing to pray with us, please ask God that the lab results come back showing no signs that Alisha is genetically predisposed to a defective placenta.

PS: I hope to never write another blog post that uses the words "placenta" and "uterus" so frequently. As a man it just feels kind of awkward. I have to keep double-checking that I'm not accidentally using words like "polenta" instead.