Friday, January 31, 2014

Roscoe at UCSF

Roscoe is in the Children's Cardiac ICU at UCSF, so he's not in with a bunch of preemies like he was at the Roseville NICU. We noticed that some of the equipment is a little different. At UCSF they are alternating Roscoe between this mask:

and this nasal cannula:
By alternating between the two, it keeps the skin around his nose from getting too agitated or breaking down.

They also gave him a pacifier with a monkey attached to it, which is fun.
When the pacifier is laying on him, it looks like our baby got tackled by an equally small monkey, and to get even Roscoe is trying to suck out the monkey's brains. Before you get grossed out by that description, remember that it is an acceptable practice in some cultures (REFERENCE NEEDED).

On the trip to the hospital, Alisha snapped a few pictures of things we passed as we traveled through San Francisco. When things weren't super tense waiting on test results to see if Roscoe would be okay, we actually had a nice visit thanks to the free parking and good weather that God provided (in addition to Roscoe's healing):

Alisha enjoyed these pink-blossomed trees which were nearby the hospital

We passed through the Castro district on our way to UC SF each day

On Thursday the skies were clear so we got to see all of San Francisco that's usually shrouded in fog

Before you get to thinking "Wow, that would be such a nice place to live ... I should move there" I snapped this picture of a FOR RENT sign for an apartment that we walked past on our way to UCSF. If you can't read the sign details it says "2-3 bedrooms, $3900/month".

Lastly, UC SF gave us the paperwork for a disabled placard for Roscoe:
Their logic was that if it is cold or rainy outside, Roscoe will be susceptible to illness and so he'd need to be kept out of the elements. The main benefit we'll use it for is parking nearby UCSF without having to move the car every 2 hours.

Thursday, January 30, 2014

The New Plan

For those who didn't follow Roscoe's progress on facebook, here are links to the posts about the anticipation, the diagram, and the results. The another doctor told us today that given what they knew about him going into the procedure, things went about as smoothly and the results came out about as good as anyone could expect. I certainly attribute this success to God's powerful hand working in response to prayer.

Today the doctors explained their plan for Roscoe's future. If this kid has taught us anything so far it's that nothing is certain (see "Dottie"), but these are their tentative plans for dealing with Roscoe's physical issues. They found that Roscoe has 3 physical issues: 2 breathing issues and 1 digestion issue. I'll describe each issue that they found and how they plan to deal with it.

One breathing issue is that his lungs have chronic lung disease, also called BPD. The BPD is partially caused by prematurity and partially caused by being on a breathing machine for an extended period. Essentially BPD means that Roscoe's lung vessels are smaller which makes them have more difficulty exchanging air to oxygenate his blood. Some medicines help these passageways to expand and spur normal lung development. If Roscoe's lungs hadn't responded to any medication, it would have basically been a death sentence. The doctors plan to treat Roscoe at UCSF with bosentan (which his lungs responded to) until Monday, when he'll get transferred back to Kaiser Roseville. They will monitor him until Monday to make sure that there are no negative reactions, especially with his liver. If there are any problems, they'll stop the treatments and try another medication.

The second breathing issue is that one of the two pulmonary vessels from Roscoe's left lung to his heart has roughly half of the capacity that it should. This is like his heart drinking through a smaller straw, so it gets less oxygenated blood than it should. They considered inserting a stint during the procedure, but opted to let Roscoe's body grow and to track the growth of this abnormal vessel as he grows (not sure how often). If the vessel doesn't grow at all, they will intervene with a stint. If the vessel grows at a rate matching his body, then it will remain undersized and they'll eventually do a stint or surgery to fix it. They said the likelihood of the vessel growing faster than the rest of his body (to catch up to where it should be) is very slim, but as we've seen already with this boy, prayer can do powerful things.

The third issue with Roscoe is pyloric stenosis, which the doctors at Kaiser suspected earlier. This is a problem where the muscle which controls outflow from his stomach is too tight, so it doesn't let enough food into his intestines. Once Roscoe arrives back at Kaiser early next week, they plan to surgically repair this problem. As the UCSF doctors described it, this is a fairly routine surgery and in fact the surgeon who would perform it at Kaiser recently transferred there from UCSF.

After starting Roscoe on bosentan and surgically repairing his stomach issue, the doctors are hoping that he will grow faster due to being able to consume more food and not having to work so hard against high blood pressure in his lungs. Only time will tell if their plans bear fruit.

Wednesday, January 29, 2014

Long Visit with Roscoe

Before Alisha and I went to UC San Francisco to be with Roscoe while he's getting all of the testing done, I uploaded this video and wrote this post. I wanted to give people something fun to watch while they were waiting and praying for the results of the testing.

Please keep this little boy in your prayers today and ask God to:
1. Provide miraculous healing or a treatment for his pulmonary hypertension
2. Provide a treatment that can be applied in Roseville, so he can come back closer to home.

Tuesday, January 28, 2014

Open Face Baby

On Sunday night, we got to see Roscoe with all of the stuff taken off of his face. The nurse said she was going to change the bar that goes across his mouth, so I turned around and grabbed the camera to record his face with nothing on it except stickers!

Delayed Transport

Roscoe's transport has been delayed until later today, because the bed in UCSF hasn't opened up yet. They had planned to transfer him at 9am, but it's been delayed until the afternoon.

Some people had asked whether Alisha or I would be able to ride in the ambulance with Roscoe. In addition to all of Roscoe's machines, Kaiser will be sending 2 nurses, 1 doctor, 1 respiratory technician, and 2 ambulance drivers/personnel. So that's 6 people just to safely transport our little boy. The ambulance will probably end up looking like this, so we'll drive separately:

We'll try to keep everyone updated as to his progress. Some already positive results were that overnight Roscoe was stable at 25% oxygen, when previously he kept hovering around 28-30%. Keep praying, it is working!

Monday, January 27, 2014

Little Jailbird

This is a video we took on Saturday of Alisha holding Roscoe on her lap. With the horizontal grey and white stripes, he looks like a little jailbird trying to make an escape!

Yesterday the doctors discovered traces of blood in Roscoe's stomach, so they switched him from formula to non-dairy milk and his digestion was much better today. I don't know if I put it onto the blog yet, but about 3 weeks ago they put Alisha on a dairy-free diet in case Roscoe was allergic to dairy. We thought that was really strange since she drinks milk every morning and eats her fair share of cheese, and he hasn't exhibited a problem until recently. Just to be safe she is staying off of dairy. Alisha drinks coconut milk with coffee/tea now, and she got some non-dairy cheese that might work when she gets cravings for mexican food.

The doctors suggested that the digestion issues Roscoe has had recently may be caused by pyloric stenosis. "Pyloric stenosis" means that the muscle which controls the exit from his stomach (and entrance to his intestines) is overly tight, so it isn't letting things through at a normal rate. If he does have pyloric stenosis, then they'd need to repair it surgically (most likely at the same time as his hypospadias).

Sunday, January 26, 2014

Faith and Prayer

Typically each night after we sit down to eat and say a prayer of thanks, Alisha and I will read a passage from the bible. It's usually a single "story" or thought, so it's often between a few verses and half of a chapter. We talk about it for a little bit to try and put ourselves into the story, or to understand the principle that's being taught. It's just our little habit of reading together.

Last night our reading was Luke 8:40-55, which was spoke rather directly to the current situation we face. In the passage, there are two stories of healing. The first was the daughter of a Jewish official (Jairus) who was raised from the dead. The second was a woman whose bleeding problem had not been successfully treated in over a decade. Jesus healed both of these people and when he did, he pointed out what had been essential in their healing. To the woman he said "your faith has made you well" and to the Jewish official he said "Do not be afraid any longer, only believe".

Faith was essential to their healing. In fact, a crowd of people was touching Jesus when the woman touched him, but she alone was healed because of her faith in his power to heal her. Alisha and I are praying for more faith. We are praying for the faith that would cause God to come and fully heal Roscoe. Our prayer sounds like a boy's father who wanted his son to be healed in Mark 9:24 when he said "I do believe; help my unbelief".

The problem that comes up in our minds is that we know people who have had faith, but were not healed. In the bible examples of this are Paul (2 Corinthians 12:7) and Jesus himself (Luke 22:42). Our only explanation for this is that despite a person's faithful prayers for healing, maybe God had a different plan for them. We can pray all we want, but if we are asking something outside the scope of God's will, then it will not be done. 1 John 5:14-15 speaks to this when it says "... if we ask anything according to His will, He hears us".

This leaves Alisha and I relying on faith and prayer. We absolutely believe that God can heal Roscoe and rescue him from his current condition, but we are clueless as to whether it is God's will for Roscoe to be healed. We are reassured by looking at the past healing that God has provided Roscoe, and we think there would be no reason for God to heal him then only to leave him stranded now. Then again, we don't know everything.

The way I see it (opinion), there are 3 categories of things that will happen:

  1. Things that God will do
  2. Things that God will not do
  3. Things that God is flexible about

God's word has revealed many things that fit into the first two categories (like being baptized into Christ, living righteously, avoiding sin), but that last flexible category is where prayers come into effect. It's almost as if God makes the decision of what will happen, but he is open to change if we make a faithful request. The difficult thing is that when we make a request, we don't know which category the thing we're requesting fits into.

We are trying to make our prayers like those of Hezekiah (2 Kings 20:1-7) and Moses (Exodus 32:7-14 and Numbers 14:11-21) where they prayed and God changed his mind. As James 5:16 says, "the effective prayer of a righteous man can accomplish much". We are calling on all of the righteous to pray with us as well for Roscoe to be fully healed.

We especially ask that you pray on Wednesday, as that's when all of the testing will be done to determine the hospital's plan for what's next. God is more powerful than a hospital and the hospital doesn't see as he sees, but we ask that they will see and follow a path of healing that's provided by God.

Saturday, January 25, 2014

UCSF Medical Center Plan

The plans are for Roscoe to be transported to UCSF Medical Center on Tuesday morning, and for some tests to be run on Wednesday. The tests will be determining the severity of Roscoe's pulmonary hypertension (which we've been aware of since November) and to determine the appropriate treatment methods. The doctors want to get it treated before it causes irrepairable damage to the side of his heart that pumps blood to the lungs. You can think of Roscoe's condition like trying to suck a beverage through a tiny straw (plastic coffee stirrer), except that over time enough straining like that will weaken his heart.

The doctors at Kaiser know that Roscoe has pulmonary hypertension, but the echocardiogram (ultrasound for his heart) doesn't show the level of detail needed to determine how severe it is. This is why they are transferring him to UCSF. UCSF Medical Center specializes in treating heart-related issues, so any child with a serious heart problem in the area would go there.

Depending on the severity, Roscoe's pulmonary hypertension may be treated with gases (oxygen, nitric oxide) or various medications (including viagra). In an extreme case, where the hypertension is coupled with pulmonary stenosis, there may be no treatment and the outlook would be grim. You can read more about pulmonary hypertension here and pulmonary stenosis here. Mainly I'm just trying to relay what I think I've heard from the doctors, coupled with some additional web searching.

Roscoe will arrive on Tuesday mid-day and will be checked in at UCSF. On Wednesday they'll insert a catheter that allows them to measure the pressure in the problematic blood vessel. Roscoe has experience with this, because the doctors have said the catheter will be alot like the PICC line he had a few months ago. Once the catheter is in, the doctors will iterate over several treatment methods and they'll be able to instantly measure whether Roscoe's blood vessels widen in response to the treatment.

Our prayer is that the doctors find at least one treatment that Roscoe responds to. Our secondary prayer is that the doctors find a treatment that can be administered in Roseville. Some of the treatments can only be administered at UCSF, so if those are the only successful treatment options then Roscoe will need to stay at UCSF for the duration of the treatments (which may be a month or more). We appreciate the prayers of everyone and we have no doubt that Roscoe has made it this far based on God's intervention. Please petition him to finish his work in Roscoe by resolving this hurdle on Roscoe's journey to be home with us.

Friday, January 24, 2014

Roscoe's Vacation

It is looking like Roscoe is going to take a vacation to San Francisco. Unfortunately, he'll arrive in an ambulance and the hospital room he'll be in will look pretty similar to the NICU rooms he's lived in for the duration of his life so far in Roseville. The reason for this visit to UC San Francisco is Roscoe's pulmonary hypertension.

Roscoe has struggled with pulmonary hypertension since last November. Having pulmonary hypertension means that there is high blood pressure in the blood vessels between his heart and lungs. This high pressure makes Roscoe work harder to get oxygen into his blood and then out to the rest of his body where it is needed.
Since he's working harder to get a normal amount of oxygen to his body, he has increased oxygen requirements and might even be burning additional calories which are needed for growth.

What's new in the "pulmonary hypertension" discussion was something we found out last night when a pulmonary specialist was giving Roscoe an echocardiogram (an ultrasound on his lungs and heart). I snapped the picture below with one hand while I held Roscoe's pacifier in his mouth with my other hand:

The specialist discovered that one set of blood vessels had turbulence, caused by backpressure. This indicates that the size of the vessel on the input side doesn't match the size on the output side. The echocardiogram from last month (and every month prior) didn't show this problem, so this is something new that's developed in the past month. It may be that the vessel stayed the same size while the rest of his body grew, or it may be that one end is constricted. Either way, right now his case is "mild to medium" but if left untreated it would lead to bigger problems.

The experts in the area who deal with these kinds of issues are at UC San Francisco, so that's where they'll send Roscoe when a spot in the schedule opens up. It sounds like this will happen in the next few days, but we haven't heard anything specific yet. Stay tuned for more details on this rollercoaster of a childbirth! 

Thursday, January 23, 2014

In the Dog House

One of the things everyone does on the way to becoming a parent is to prepare the house for when the baby comes home. For us, that process is a little more drawn out, like someone hit pause and is watching our trip home from the hospital in extreme slow motion.

A potential conflict we've tried to avoid is the contamination of the baby's room with dog hair. We have a dog that we got as a rescue puppy back in November of 2010. When we got our dog, she looked like this:

Puppies grow into big dogs, so now she's a little larger and furrier. Her fur builds up on the wood floor around her, and then travels all over the downstairs. Alisha planned to always keep Roscoe upstairs and Harper (our dog) downstairs.

To keep the fur more contained, I started working on building her an indoor dog house. I looked up some ideas on the internet, estimated the cost of materials, and measured her while she laid down and stood up to make sure the house would fit. Then I built the floor and frame.

I covered the dog house in cedar fence pickets, so it would smell nice. I like the wood grain / natural look, but I'm pretty sure that the boss (Alisha) has other plans. She said that with our wood floors and neutral colored couches, there is too much similar color to have the dog house stay this color. I think she plans to paint it white and blue, but we'll see what she comes up with!

Wednesday, January 22, 2014

Getting Dressed

These two video clips show Roscoe getting dressed after his bath. Alisha thought it would be good to show these so that people could see that despite his small stature, it's difficult to get Roscoe dressed with all of the tubes and wires while he wriggles around.

Now he's as snug as a bug in a rug!

Tuesday, January 21, 2014

Bath Time

This past Sunday was the first time I was able to see Roscoe get a bath. Alisha had seen it previously, but wasn't able to take a video because her hands were busy taking care of him. The set of videos below show us getting him undressed, putting him into the tub, and washing him off. As usual, he has the super-surprised look on his face since this experience stimulates his senses in new ways.

I'm sure that in a few years we'll look back fondly on the time when we could bathe and dress Roscoe in 5 minutes with no whining or splashing, and without the tub floor getting filled with grime. :)

Two steps forward, One step back

Roscoe has made some good strides in the past few weeks, but he continues to hit some minor hiccups. For instance, they are still finding blood in his diaper contents (through testing, not visually) so they suspect he has a minor fizzure (ie: cut) somewhere near the end of his lower intestine. Another instance happened this past Sunday when Alisha was holding Roscoe and he choked a little on his feeding, which caused his heart rate to drop to 70 (way too low, normal is ~140). His heart rate stayed down until they suctioned his mouth and throat. Yesterday they increased his breathing support, because his lungs showed too much CO2 (not being expelled and replaced with oxygen). He got his first immunization shots on Sunday, so that may have given his body some extra struggles.

The point is that Roscoe has been making great strides, but he still has a long way to go before coming home. A week or two ago, Alisha talked with a nurse who'd cared for a boy in a very similar situation to Roscoe (born early, just over 1 pound, chronic lung disease) and said that he'd stayed in the NICU for 5-6 months. If Roscoe follows the same timeline, he'll come home some time during March or early April.

Not everything has been problematic, however. Today Roscoe tipped the scales at 5lb 5.4oz, so he's officially out of the 0-5lb weight range for normal preemie clothes and has graduated to "newborn". He is also able to identify our voices, and his back and stomach muscles are developed enough that he can make himself flop backwards or forwards if we're not holding him tight enough.

Sunday, January 19, 2014

Hair Swirl

Earlier in the week when Alisha was holding Roscoe and feeding him, I snapped these pictures.

Here's a video of the little guy's hair swirl as momma holds him. He's already getting pretty close to matching the amount of hair his dad has!

Saturday, January 18, 2014

Hand Motions

When Alisha holds Roscoe, sometimes she'll lay him on her lap so that he can look at her face straight on. I typically keep him bundled up tight, but sometimes she likes letting his hands go free so that he can explore the world around him and learn to use them. It looks like this:

In the background, you can hear the nurses talking about the banner that Tifany made for Roscoe's crib out of scrap booking stuff.

Never underestimate the joy of having control over your hands and arms and being able to use them to contact your immediate surroundings!

Thursday, January 16, 2014

Big Boy Crib

Earlier this week, Roscoe had a big development: he's now in a big boy crib!

He stayed in the incubator for a while because he wasn't able to maintain his body heat using just clothing, so they needed the overhead heater that the incubator provided (even though the lid hadn't been closed for over a month). This past Sunday, Roscoe's favorite nurse (Jess) pushed to get him moved into a big boy crib so that he can start enjoying the luxuries of being a normal newborn (even though he's almost 3.5 months old).

His crib has his colorful mobile (which also plays music), his original nametag, and then a custom-made name banner by his aunt Tifany. The nurses who liked scrapbooking were admiring the little details:

He's one step closer to home!

Wednesday, January 15, 2014

For Nanny

When Roscoe gets ready for his cares (diaper, temperature, etc) they also switch his face mask between sizes, so that his skin doesn't get agitated from the same plastic being in the same spot on his face for an extended period. During that period of switching, we get to see his face with practically nothing on it! 

As you can see in the picture above, they put an oxygen mask off to the side of his face and pump out higher concentration oxygen. That higher concentration in the air around him lets him stay off of the face mask for a little while longer. Here's a video that Alisha recorded while he had his face mask off:

Alisha also wanted me to point out that these pictures and videos were specifically for her "Nanny" (grandmother on her mom's side) because she bought Roscoe this outfit and Alisha thought she'd want to see him in it. Hope you all enjoy seeing the little tike!

Tuesday, January 14, 2014

Essential Manly Activities

Roscoe is becoming more of a man each day. The past few days he's taken his first steps with two essential manly activities: eating and burping.

To feed Roscoe from the bottle, we hold Roscoe on his side so that milk doesn't fall into the back of his throat and choke him (try drinking a glass of water lying down and you'll experience it). While we shot this video below with Alisha holding him, Roscoe was in the process of setting his own personal record of eating 36mL of formula through a bottle (leaving only 6mL through his feeding tube).

At parts throughout the feeding, he'll slow down or start to pull back from the bottle. Those motions are a good indicator that he's got some air built up in his stomach that needs to come out. This shows Alisha propping Roscoe up and burping him. She has to hold his chin up so that the weight of his head doesn't touch his chin to his chest (making it hard to breathe). The whole time he's getting burped, he has a look on his face like he just saw the ending of "The Sixth Sense" or witnessed a double-rainbow.

Improvements like these are great for us to see and be a part of. Looking back it wasn't so long ago that each week we showed up to see Roscoe and didn't know what problem would show up next. God has provided great healing in this little boy (with still more healing to come). At his last measurement, Roscoe was 4lb 15oz, so hopefully he'll hit the 5lb mark in the next day or two! God has now grown Roscoe to over 4X his birth weight.

Monday, January 13, 2014

Cuttlefish Impression

Here's a video that shows Roscoe doing his best impression of a cuttlefish (another one of God's amazing creations) as Roscoe changes colors and textures. While he gets ready for getting his diaper changed, he sometimes works on finalizing any "work in progress" (if you know what I'm referring to). This shows him getting ready for me to change his diaper when we visited him last night.

Saturday, January 11, 2014

Hanging Decorations

We were previously given a wonderful gift with a custom painting of Neverland, featuring Roscoe's Roost. Due to the uniqueness of the painting, we had difficulty figuring out how to hang it. We obviously didn't want to puncture it with holes (but considered using rivets) to hang it. We couldn't use a picture frame because it would hide the rustic edges. We couldn't use plexiglass because it would hide the rough texture of the painting. So just how do you hang a painting like that?

Here's what we came up with:

We took furring strips and cut them to size. Then we beat them up with screws, nuts, and other pieces of metal to make them look battered. After that we stained them with a walnut/mahogany stain and coated them with satin epoxy so the stain wouldn't rub off.

The look we were going for was that some pirate just came into Roscoe's room, grabbed some old scraps of wood, and nailed the map to the wall so he could look at it while he planned his attack.

While we were at it, we also made a frame for the ship painting that hangs above Roscoe's bed. We started with chair moulding that rich people you would use to decorate the middle of a wall. I had Alisha remotely choose from a few types of moulding.
Side note: Remember when a few years ago you had to call and try to verbally describe stuff like this, instead of sending a picture message? Remember a few years before that when you had to either guess what they wanted or make a few trips, because a payphone was too much trouble?

After that I cut the moulding to fit the ship painting, backed it with furring strips for structural support, and stained it just like the other pieces above.

And here's the final result, which is a good improvement over how it was before.

Friday, January 10, 2014

4lbs 10.4oz

Today Roscoe hit 4lbs and 10.4oz. As I mentioned about his digestion issues, the doctors put him on an all-formula diet so they can determine if he has an allergic reaction to milk (lactose intolerant). They also saw him gaining weight, but not at a rate that they would like him to gain. Basically, Roscoe was trending upwards in weight at the same rate as a normal baby. This meant that Roscoe would never catch up with where his weight would have been without the IUGR. The doctors want Roscoe to gain weight faster than a normal baby would gain weight.

As the new year has just rolled around, many of the people reading this blog may have started (and already given up on) a new years resolution to lose weight. The formula for losing weight is to burn more calories than you consume. Since Roscoe has been consuming and digesting more food lately (he is up to 42mL per feeding), the doctors concluded that it also means he's burning more energy as well. Since he's just a baby laying in a crib, they suspect he's burning an abnormal amount of energy trying to breathe. This would also explain why Roscoe has been stuck at 28-30% oxygen for around 2 weeks now.

To help Roscoe gain weight, they increased his breathing support to ease the strain on his lungs. Once he gains weight he'll hopefully have healthier lungs and be able to decrease his breathing support.

Wednesday, January 8, 2014

Soothing Music

We are still waiting to see how Roscoe does on the high-calorie formula, compared to a combination of formula and milk. Subsequent tests have also indicated blood in Roscoe's intestines, so now they're trying to figure out if it's a fissure (small cut) somewhere in his digestive tract or if he is swallowing blood from a wound in his throat (with all of the tubes, it is a possibility). The doctor said she doesn't suspect a digestive tract infection (which would be a huge setback) because Roscoe has lots of energy, is handling oxygen well, and his tummy is soft.

Here's the big little man getting prepped for cares a few days ago. You can hear his music playing, which several nurses have noticed really calms him down when he gets fussy.

Tuesday, January 7, 2014

Digestion Issues

Yesterday the doctors ran a test on Roscoe's diaper "contents" and discovered blood, which indicates a digestive tract problem. The doctors told Alisha to avoid all forms of milk products over the next 7 days so that they can determine if Roscoe is lactose intolerant. They won't feed Roscoe milk for a few days (just formula) and then they'll gradually re-introduce milk once the lactose is out of Alisha's system.

We are praying that it was just a cut or other small issue, not a big problem that would cause more complications. The doctors also said that Roscoe isn't gaining weight as fast as they want him to, even with him being on a higher-calorie formula. Roscoe is gaining weight at a normal rate, but they want him to exceed the normal rate so that he can eventually catch up to the weight he would have been with normal development. He is digesting all of the food they're giving him, so chances are that he's burning too many calories (being fussy, generating heat) to put on the weight they want him to gain.

While Roscoe was being fed we got this close-up picture of his growing eyelashes!

Here is a video of Roscoe feeding from a bottle while being held by the nurse, while both Alisha and I watched:

Monday, January 6, 2014

3 months old

Today Roscoe turns 3 months old. As of last night his weight was at 4lb 8oz (4.5 pounds!) and he was 17 inches tall/long. Here he is last night in his elephant outfit, which Alisha especially wanted to see him wear.

And here's his loving momma, getting surprised by his goofy dad taking a picture that includes her too!

Saturday, January 4, 2014

Alisha holding Roscoe

Here's a fun video which shows what we usually see at the start of Roscoe's feeding time as we hold him. He is usually alert like this, looking around at us and the ceiling and generally just taking in what's going on around him. He also moves his tongue around and sucks on the tube until we either put a bottle or pacifier into his mouth. That's a good sign for future feeding activities!

Friday, January 3, 2014

Changing the breathing mask

Several times each day, the nurses change Roscoe's breathing mask to avoid any agitation on his skin. Usually they rotate babies between a face mask and nose prongs, but Roscoe absolutely hates the nose prongs. Several nurses have tried using the prongs on him and they all remarked something like "most babies don't like the prongs, but he REALLY doesn't like them". I am hoping that Roscoe's visible frustration isn't an indication that he inherited his dad's temper. Now they just change Roscoe between a larger face mask and smaller face mask.

Alisha and I like being there when the face mask gets changed, because for 5-10 seconds we get to see our son's face without being blocked by the face mask and large air tube. Some nurses call the large air tube a "rhino horn" because it comes out of the front of his face like a rhinoceros!

Thursday, January 2, 2014

Daily Routine

Roscoe has been staying steady, which is a great relief and a small disappointment. It is a relief because Alisha and I no longer have to wonder whether he's going to have a new infection, require a new machine support, or have regressed to some other worse condition. It is a small disappointment because we'd love to see him making leaps and bounds each day. When we start thinking about the let down of not getting to take him home with us for at least another month, it helps give us encouragement to think that right now we could be mourning the loss of a son 3 months ago, but instead we get to see him every day as much as we want.

The typical routine is that when we arrive and do his cares (change diaper, take temperature) he is fussy because he knows that food is coming soon. He looks like this:

Then we hold him for about an hour, as he calms down and gets sleepy from all of the food that runs into his belly. Once we put him back, he looks like this: