Thursday, October 31, 2013

1lb 10oz

There isn't much to report today, as Roscoe has been relatively stable. We are happy to report that as of last night Roscoe had reached the 1lb 10oz mark, over 33% bigger than when he was born. Alisha asked the doctor when we'd be able to hold him, and the doctor said that wouldn't be until he reached around 2.5 lbs (assuming no other issues), so we're still a few weeks off from being able to pick up the little rug rat!

Tomorrow I'll try and do a larger post that will explain a little more about what we know happened to get Roscoe into this situation.

Wednesday, October 30, 2013

Future Baseball Champ

Yesterday Roscoe made many improvements. He was doing well with digestion and his blood tests showed that the infection is cleared (but they'll keep him on antibiotics for a few more days to make sure). The doctor checked again for a heart murmur (PDA valve) and couldn't hear it, so he thinks that the valve has closed. Hopefully it will stay closed long enough for it to heal so that it will never open again. They lowered his oxygen from 29% to 22%, which is almost back to room-quality air at 21%. They also lessened his breathing support and said he is doing good on his new ventilator (pictured below).
Roscoe's new big, boring ventilator

In honor of the World Series game tonight, I decided to teach Roscoe some of the fundamentals of the wonderful game of baseball. There's nothing like the first time a dad plays catch with his son. Here I am trying to teach him how to throw a fastball:

And yes, before you ask this is a standard size baseball that he'll use in little league. Sadly the nurse made us wash the ball with soap and water before we put it into the incubator with Roscoe. I don't think she cared that water ruins leather baseballs, but I'll make whatever sacrifices I need to make to teach him how to play.

When we do finally play catch, I'll try to remember not to use this ball which Doug got for us shortly after Roscoe (aka: "Dottie") was born. This will make for some interesting stories to tell around the campfire:
It says "It's a Girl!"

Tuesday, October 29, 2013

Containing the boy

The picture below shows my hands "containing" Roscoe when he was a little fussy. Roscoe is familiar with the feeling of being contained in a womb. The nurses said that by putting light pressure on his head, body, and feet it gives him the pressure sensation that's similar to the womb.

Usually when we do this and speak softly to him, his heart rate will calm down a little as he settles in and gets more comfortable. This is similar to how people typically wrap a newborn up really tight and make whooshing sounds in their ear that sounds like their mom's heartbeat.

All you need is Lungs

Yesterday they re-measured Roscoe's head and did an x-ray to check for any existence of brain bleeding. Thankfully no bleeding or other problems were found, meaning the previous measurement was just inaccurate! His head circumference is currently 25cm, which is just under 10 inches (put a tape measure in a circle to see how big that is).

The doctors also changed his ventilator (the machine powering his breathing tube) to a different model that oscillates. They said that when they x-rayed his lungs they saw that portions of his lungs weren't getting rid of carbon dioxide (which is what you breathe out), so the air in those parts wasn't getting used and his lungs weren't working at full capacity like they should. This new oscillating ventilator makes alot more noise and actually vibrates Roscoe's whole body slightly as he lays there. The nurse last night said that babies will stay on the oscillating ventilator anywhere from a few days to a month. We're not sure how long Roscoe will be on it, I guess that part is up to him!

The doctor also said that for the second or third check in a row he wasn't able to hear a heart murmur (the PDA valve open). God is continuing to bless us with health in all of the key areas (brain, heart, digestion) and a path to health in the others (lungs).

Monday, October 28, 2013

Visible Progress

Alisha and I visited Roscoe last night with some family who had seen him about 2 weeks ago. Everyone who hadn't seen him in a few weeks noticed that he was visibly bigger than he was before. They also remarked that he looked more filled out. The doctors told us that his last weigh-in measured 705g, which translates to almost 1lb 9oz. This was taken after a blood transfusion, so that might account for some of the weight gain, but he has definitely grown.

The video below was taken late last week (Friday or Saturday) and Alisha told me it's her favorite one so far because of how much he's looking around and you can see his little mind working:

Last night they said that his head measured significant growth from last week, more growth than they like to see. They said there are two reasons for more-than-expected head growth:
  1. He has bleeding in his brain that is causing increased pressure. Since his skull bones aren't fused, it won't impact his neural development. This bleeding would have had to start in the past 4 days, since an ultrasound on the 23rd showed no bleeding at all.
  2. The previous or current measurement was inaccurate. This is what I suspect occurred, because 2 weeks ago his head measured 23cm and last week his head measured 21cm. Yesterday it measured 25cm, so my suspicion is that the 21cm measurement was inaccurate.
Today they will be re-measuring Roscoe's head and possibly doing another ultrasound to check for bleeding. Please continue praying that his brain stays safe and this is just an inaccurate measurement.

Sunday, October 27, 2013

Good and Bad News

Through this roller coaster ride of a childbirth, we've had lots of ups and downs. Sometimes when we're at the hospital and they give us news about Roscoe's progress it feels a little like this:

Earlier on it was things like Roscoe being born nearly 3 months premature, but he was healthy and stable. Or that his heart showed no major problems, but he was a boy instead of a girl. Or that he was having heartbeat drops as all preemies do, but he was able to recover on his own. Yesterday we got news along the same theme ...

Bad: Roscoe has an infection.
Good: Blood results have quickly identified the type of infection.
Bad: Roscoe has a staph infection.
Good: It is the common, treatable form of staph and not the new hyper-aggressive type that's been in the news.
Bad: The staph isn't responding to the antibiotics.
Good: Doctors changed the antibiotics to a different, less intense type now that they know the specific type of infection.
Bad: The antibiotics will take 5 days to administer.
Good: The doctors aren't worried about it and we shouldn't be either.
Bad: Tests also showed yeast in Roscoe's respiratory tube.
Good: The doctor thinks it may just be a tainted sample.
Bad: If the sample is accurate, then Roscoe may get pneumonia.
Good: They are starting antibiotics for his respiratory system just in case.
Bad: The antibiotic treatments take 2 weeks.
Good: The doctors aren't worried about it and we shouldn't be either.

We asked the doctors if this is just run-of-the-mill preemie stuff that happens. They said that it isn't as common as heartbeat drops (which all preemies have), but that it's just one of those things that does happen sometimes. As the doctor was explaining this to us she and the nurse were smiling and happy. As I was asking some questions, a nurse for another baby walked by and commented "A good rule of thumb is that if the doctor isn't worried, you shouldn't be either". To that, the doctor responded that she wasn't worried about his current condition and that he was still very stable.

This may sound like horrible news to some of you that a baby who is not yet 1.5 lbs has both a staph infection and possible pneumonia. When we started looking at stories of people who had small babies who were born extremely early, the common theme that all of the stories had was that the babies ran into lots of speed bumps and issues along the way, but they made it through and recovered safely. Some of the issues that babies hit were common and some were unique, but each story would end with "and now my baby is a happy, healthy, normal _-year old". We are praying that as God writes Roscoe's story that he will finish his NICU story with those same words. God has brought him too far and shown us too much of his power to forsake Roscoe now:

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you." (Deuteronomy 31:6)

Saturday, October 26, 2013

Roscoe's breathing

Here's a short little video showing Roscoe breathing as he sleeps. I like looking at his ribs and belly as he does this, watching them function just like mine do. I zoomed out to get a little perspective on how small he is in the standard size incubator.

God's Handiwork

We went to see Roscoe last night and his color has improved over the past few days. As his conditions got worse earlier this week (before they put the breathing tube back in), his color had gotten a little pale but we hadn't really noticed. Once they got him on antibiotics his color returned.

Presently he still has the heart murmur (PDA valve open) and is still dealing with an infection, but he's very stable. The doctors said that as long as he continues to improve and grow, they won't be concerned enough about the PDA valve closing to do surgery. Surgery would only be done if his conditions worsen. Thankfully, God caused Roscoe to reach 1lb 6oz, which is 3oz above his birth weight. The nurses weighed him 3 times just to be sure that it wasn't an incorrect measurement.

When you see Roscoe in person, it is such a wonderful sight. The video captures some of the details, but there's nothing like standing in front of a baby this small with completely formed hands, fingernails, digits, knuckles elbows, belly button, ribs, knees, toes, eyelids, tongue, nose, and lips. Looking at him you can just see the power of God working.

To put it into perspective, those who've met me in person know I'm not a big person. I weigh right around 150lbs, so I'm on the small side for an average adult male. By comparison, Roscoe is 1% of my size. That means if he was an action figure, he'd be marked with "1:100 scale". It is simply awesome to see God's handiwork:

Friday, October 25, 2013

Naming our baby: Take #2

Once we found out that we had a boy instead of a girl, we had to go back to the drawing board. Alisha worked very hard over several months to settle on the name "Dottie Monroe" (which is why she wants to use it for our first real daughter). We had to scrounge up the previous name option list we'd built up for boys before the 20-week ultrasound. We added some, removed others, then winnowed the list down to a few final choices. Alisha gave me a wonderful gift and let me do the final name selection, so if you don't like his name then blame me. If you like it, then she deserves credit for filtering out the "bad" choices I could make ("Mortimer", "Lazarus", "Wolfgang").

Our baby boy's name is:

Roscoe Nolan Wackerly

Did you guess it? :)

We just liked the name "Roscoe", so there aren't any family relatives or historical figures he's named after. I picked "Nolan" after Nolan Ryan who was a pitcher on two Texas teams (Astros, Rangers) and one California team (Angels), because like him our boy will love baseball and be a little bit of California and a little bit of Texas.

Name Teaser

We'll post the name of our baby boy a little later today at 3pm (Pacific), but until then here are some teaser pictures that hint at what his name will be. Do you think you know what it is?


Thursday, October 24, 2013

Slow and Steady Wins the Race

The doctor gave us another update yesterday. Our boy is still stable and it's more of the same from yesterday. The heart murmur (PDA valve open) is still audible and he still has weakness in his lungs so he needs additional breathing support. However, his heart rate is still in the range it should be (150's-160's). His intestines still look safe from infection, so that's very good news.

Some other great news we got yesterday was that the minor brain bleeding he had last week has disappeared by this week. They weren't concerned with the bleeding he had before because it was so minor, but they said it's a good sign that it's cleared up completely.

We don't have any new pictures from yesterday, so the video below is a few days old. You'll notice that he has the breathing mask on in these videos because they were taken a few hours before he had his big drops and got put back on the breathing tube. In this one you can see his face pretty clearly:

and in this one he's moving his feet a lot:

God is keeping him stable! Hopefully in the next 1-2 days we'll post his name so everyone can stop thinking of him as "Dottie".

Wednesday, October 23, 2013

Mild Improvements

Yesterday our boy had some mild improvements. The doctor called around 5pm and we went to see him shortly afterwards. The doctor said that things were trending in the right direction: his heart rate was 150s-160s, the heart murmur was less audible, and he wasn't having near as many heartbeat drops. She noticed that his lungs weren't working at full capacity as they should, so there's some weakness or development issue that needs to be worked out there.

The doctor also added that she did some x-rays to check for infection, and thankfully didn't find any signs of infection or damage in his intestinal tract. According to the doctor, infection in his intestines can cause damage that is very hard to recover from. She called it a "blessing" and I was very thankful to hear that news. We are hoping that the anti-biotics (or God himself directly) will rid my little boy's body of any infections.

He is still back on the breathing tube to ease the strain on his small lungs. The doctors said that with how small he is, it was actually odd that he wasn't on the breathing tube (we can thank God for that). Now that he's back on it, hopefully it'll give his lungs and other organs time to mature and grow. He's still back within 1oz of his birth weight.

These two videos are ones that Alisha took last night. It was pretty low light so that's why they're a little grainy. You can see him blinking alot in this first one:

and in this second one he reaches out toward the camera:

Tuesday, October 22, 2013

The other kind of PDA

Our boy isn't walking yet, but yesterday he took a few steps backwards. He did NOT have a good day. Doctors noticed that his heart rate drops and oxygen levels continued to get worse, so they slightly supplemented the air he was breathing with oxygen. Based on the instability he's shown lately, they did another EKG and listened to his heart. They found a heart murmur, which is an indication of a condition called patent ductus arteriosis (PDA).

PDA is a condition where a small bypass valve in his heart hasn't closed, but it should have. Instead of circulating all of his blood out to his organs, some of the blood is going back to his lungs for re-oxygenation. This makes his heart beat faster because it has to work harder to get the same amount of blood out to his organs. The doctor said that current research shows this condition can sometimes be remedied with fluid restrictions. The doctor said that he'd gained a 6oz of weight, but that number was from memory so the number might be high. Also she said that recent blood transfusions would increase his weight artificially. While on fluid restrictions our boy will probably lose weight, but hopefully it will reduce his blood pressure enough to let the valve close. If the valve doesn't close then our next option would be surgery.

Last night at 6pm while Alisha and I visited him he had a big heart rate drop. It's very nerve-racking to sit there when he has problems like that, knowing you're powerless to help him with breathing, blood circulation, or anything else that he truly needs. However, it makes you look at yourself as well: how much power do I have over my own circulation or breathing? If my heart or lungs want to stop, then I am powerless to make them work again. I can feed them and take care of them, but that can only go so far. Standing in front of an infant really helps me see how powerless I am over my own basic functions. Just like with my little boy, my only power lies with God himself choosing to sustain my life.

Last night at 9pm the doctor called and said they'd re-inserted his breathing tube. Apparently after we left our boy had another severe drop that was even worse. The doctor said that from what he's seen over the past few days, our little boy might have an infection. They said that infection will cause high heart rate and heart rate drops like they've seen with him. By re-inserting his breathing tube it gives them more control over his breathing and oxygen levels, to keep stress off of his lungs. They also started him on antibiotics to counteract any possible infection.

The video below is from Saturday afternoon or Sunday night (I forget which). It shows me taking his temperature by placing a standard digital thermometer under his armpit:

Please keep our little boy in your prayers. He's now dealing with a possible infection and PDA which are fighting against his health. Pray that God is willing (we know he is able) to keep him healthy and resolve these issues as our boy matures and grows.

Today he reached the 31-week mark!

Monday, October 21, 2013

Baby Boy is Stable

Alisha and I went to the hospital last night to spend some time with our little boy. When we got there his eyes were wide open and we could seem them moving around and following our shape as we moved in front of the white background behind us. Unfortunately we didn't bring a video camera with us this time, so you'll just have to use your imagination until we can capture it again.

The past few days they said that the number of heartbeat drops he'd had increased. However the nurses also realized that it had increased as they'd increased his food intake. He is up to 5-6mL of milk every 3 hours, and they were feeding it to him over a 5-minute span. One of the night shift nurses tried feeding him the same amount over a 15-minute span and said he did much better with almost no drops. They suspect that his drops were caused by taking in food too quickly, so now he's fed by a machine-controlled syringe instead of one that's held by a person as you might have seen in a previous video. They only use a machine so that they can accurately control the food intake without having to stand there for 15 minutes.

He is healthy! God is continuing to work in this little boy's life, and as you can see from the previous post he's throwing in lots of surprises along the way.

Saturday, October 19, 2013

The Curse of Mortimer

We have a new development in Dottie's progress, but to better comprehend how it could happen you should watch this video. Once you watch the video, continue reading below.

The video above is a test of selective awareness, where something happens but you don't notice it because you're focused on something else happening at the same time. During this past week we had something similar happen with Dottie. They did an ultrasound yesterday and found that Dottie will never be able to bear children because she is missing several key female reproductive organs like her uterus and ovaries. In fact, Dottie has none of them because Dottie is a BOY. Yes, a BOY.

How could this happen? It started earlier this week on Tuesday when the doctor asked us to meet with her in person. Dottie had a rapid heartbeat so Alisha and I were scared that they'd detected problems with an EKG. The doctor sat us down in a conference room with 2 other doctors and explained that they had suspicions that Dottie was in fact male, but they needed to do a lab test to be 100% positive. Those lab tests came back yesterday.

The doctor said that they'd been so concerned with the baby's survival and health that they totally ignored double-checking his gender. He was 3 months premature, so the parts were not as developed as you'd see on a full-term newborn. He was also about 50% the size of a similar preemie, so the parts were smaller and harder to distinguish. Lastly they said that he may have a defect called hypospadias which can be corrected with cosmetic surgery (if needed) in a few months. All of these factors were complications that prevented the doctors from recognizing the mistaken identity.

We love the name "Dottie Monroe", so Alisha plans to use it for our next child (assuming it's really a girl that time). We haven't picked out a name for the little tike yet, but we will within the next week as the legal corrections get submitted. We'll post his name here when we get it figured out. No suggestions, please :).

PS: I called this post "the curse of Mortimer" because before the 20-week ultrasound I jokingly called our baby "Mortimer" to anyone who asked. I guess constantly referring to him as "Mortimer" jinxed him into being a boy, even if doctors initially thought otherwise!

Friday, October 18, 2013

No News is Good News

Things are remaining stable for Dottie. The past few nights we've visited, her heartbeat has steadily dropped more toward the normal range (although it's still on the high side). She is up to 4mL of milk every 3 hours now, and the doctors keep saying that she's tolerating the food increases well. She hadn't gained much weight overall yet, but the doctors said that's fine as long as she isn't repeatedly losing weight. Right now she is at 1lb 4oz and they weigh her each night to track her progress.

Alisha sent me this picture today to show me once again that Dottie sleeps like I do. It almost looks like a small version of my college dorm room, aside from the heart patterns everywhere.

A few days ago, one of the nurses let us take home one of Dottie's blood pressure arm cuffs so we'd have it for the memory of how small she once was. This would be her equivalent of the black strap they wrap onto your bicep when they take your blood pressure measurement. As you can see, hers is a bit smaller:

And then here's a picture that Alisha took of one of Dottie's diapers. The part where the "Pampers" label is we have to fold down because even this preemie diaper is way too big for her.

Thursday, October 17, 2013

Momma feeding Dottie

Here's a video that we took last night as Alisha fed Dottie for the first time. You can see Alisha's face reflecting in the glass and I kept moving the focus from Dottie's face to her foot because she kept wiggling her foot around.

Wednesday, October 16, 2013

Tape Removal and Crying (long video)

Yesterday we visited Dottie again and her heart rate was still high, but had dropped to the 170-180 beats/minute range, even with some drops into the 160s. Hopefully this means that she'll regulate her heartbeat and over the next few days get back to normal without intervention.

This is an extended video (8 minutes) that we took on Friday or Saturday last week as they were pulling out one of Dottie's umbilical cord feeding tubes. You'll see them move her around and remove the tape on her stomach. It may seem like they're being rough, but with how small she is the nurses are being as delicate as they can be. I don't have their hand control; I can barely hold the camera steady while they do their work.

As a bonus you can hear her crying out in discomfort about 2/3 of the way through the video. I like hearing her cry as she works her lungs and as we start to hear the voice that we'll be hearing for the remainder of our lifetimes:
Click full-screen to see all of the details

Tuesday, October 15, 2013

High Heart Rate

Yesterday Alisha and I went to visit Dottie. She was all covered up to keep warm and quiet, so this is how we look at her when she's sleeping and they're trying to keep her calm:

As mentioned previously, Dottie has had a high heart rate (190-210 beats/minute) for the past few days. The doctors tried a transfusion on Sunday night to boost some of her blood counts, since they were thinking that lower oxygen in her blood was making her heart pump extra hard. The transfusion was able to get her back on room-quality air (21% oxygen), but her heart rate remained high, though slightly lower (in the 180's). Below I snapped a shot of the monitor. The green number is her heart rate (beats/minute), the blue number is her blood oxygen content (percentage), and the white number is the number of breaths she's taking (breaths/minute).

They are gradually increasing Dottie's food intake. Today she'll be starting on 3mL every 3 hours, with her intake increasing by 1mL every 2 days. So far our prayers have been answered, meaning that she's having good digestion results and is properly tolerating the food intake. Since the food intake is limited, they supplement her nutrition with these machines which feed her through her umbilical cord. The lower machine is feeding fats ("lipids") and the upper machine is feeding something called TPM (no idea what it is, but it's yellow liquid).

And for the full "just like I was there" experience, we snapped some pictures of decorations that they have in the hallway just outside the NICU visitor room.

I realize this is off-topic, but yesterday Alisha and I concluded that the "Close Door" button on an elevator does nothing and probably isn't even connected to anything. If you don't push the button, it waits and the doors close. If you push the button, it waits the same amount of time and the doors close. If you push the button 5 times, it waits the same amount of time and the doors close. I guess it's just a decorative button with no functional value.

Monday, October 14, 2013

Finding her Hands

Yesterday some of the family was able to come and see Dottie for the first time. They said (and we agree) that these videos show a little of what Dottie is like in person, but once you're standing in front of a baby that's as small as she is, the feeling is surreal. It is frightening because you've never seen a person that small, but it's also awe-inspiring because you can see God's handiwork moving in front of you. It's like the difference between seeing a picture of a sunset and experiencing one.

Dottie's heartbeat has been rather high the past 3 days, since they put in the PICC line. Previously her heart rate was in the 160-170 beats/minute range, but now it's been 190-210 beats/minute. Last night doctors chose to give Dottie a blood transfusion to hopefully ease the strain on her heart and lower the rate back down to where it should be. The good thing was that they ran blood tests and all of her blood cell counts are looking normal.

Last week they also conducted an ultrasound on Dottie's brain and found only minimal bleeding. You might think "bleeding in the brain ... isn't that BAD?". Apparently bleeding in the brain is somewhat common for preemies born as early as Dottie is, and the kind she has is very minor. The doctor told us "if you have any kind of bleeding, this is the kind you want to have". On the scale of stages 1-4, Dottie's is a stage 1 and they weren't concerned about it at all.

Alisha recorded this video of Dottie on Friday or Saturday. The orange tube going into her mouth is her feeding tube and the contraption on her nose is a breathing machine that helps her take breaths (it replaced her breathing tube). Dottie was facing upwards and her hands were moving around, then as you'll see she finds one hand with the other hand. Be sure to watch it in full-screen to see all of the detailed movements:

Sunday, October 13, 2013

Our story until now

Quite a few people are reading the blog now who didn't get the original emails when we started down this path. I thought it might be useful to give a summary of what's happened so that everyone can have a clear understanding of the powerful miracle that is taking place before our eyes. It is wonderful to see God's hand at work.

Alisha's pregnancy was progressing normally from our perspective for the first 20 weeks. Alisha's belly was a little small, but we assumed it was because of her long torso and small frame. To us everything looked normal on the 20-week ultrasound: we could see her moving, everything was in place, and they were able to tell us it was girl. The ultrasound nurse took a while getting back to us, then scheduled us for a follow-up visit 2 days later. At the follow-up visit a specialist did another ultrasound and informed us that our daughter had IUGR, which was making her grow slowly. Essentially the placenta was defective and so our daughter was being starved of nutrients she needed for growth. The doctor informed us that IUGR babies (especially those detected this early) are often born early and ours was "almost definitely" going to be born before 27 weeks. She was at risk of survival and even if she survived she faced possible major long-term issues. He scheduled us for ultrasounds every 1-2 weeks and planned to monitor the growth until she reached 500g (the weight at which they can fit a breathing tube).

For the next 6 weeks we had a lot of stress and did a lot of reading on the internet. We found success stories and stories with negative outcomes in similar situations. As our daughter became more active, each day we'd wonder if she was still alive if she didn't move for a short period of time. We prayed a lot. Each week the ultrasounds were stressful as we wondered how much she'd grown. She went from 183g, 230g, 265, and 377g as the weeks progressed. The weekend prior to Alisha's 26-week ultrasound we went to Apple Hill and shot some maternity pictures for Alisha, because we suspected that she might be admitted to the hospital the next week if the baby's growth was on track.

Her growth wasn't on track. Due to margins of error in ultrasounds, the 26-week measurement came out at 393g which was a half-ounce of growth over an entire week. On top of that, Alisha had started having relatively strong contractions which made her lower back sore at 3:30am on the day of our 7am appointment. Basically her body was rejecting the defective placenta and trying to push it out. The doctor saw the contractions and admitted Alisha to the hospital. By 8am Alisha was in a high-risk labor and delivery room, with contractions 1-2 minutes apart and doctors coming in frequently. Alisha was put on magnesium sulfate (to protect the baby's brain) and steroid shots 12 hours apart (to strengthen the baby's lungs). We didn't know it at the time, but the NICU had already prepared a bed for our daughter, who they expected to be born at 26 weeks. Thankfully, God prevented the birth from taking place and gave Alisha 3 weeks in that same hospital room as our daughter grew to her 530g (1lb 3oz) birth weight. Over those 3 weeks, this blog has unfolded as God's power was revealed in our daughter's life.

We prayed for Dottie to reach 500g at her last ultrasound: she measured at 500.24g. We prayed for Dottie to be born healthy and stable: she came out at 28 weeks and 5 days with an Apgar score of 8-9. We prayed for Alisha to have a standard (non-classical) caesarian section: it happened, even though doctors estimated a 5% chance of it being feasible.

Today Dottie is breathing mostly room air on a ventilator (with some supplemental oxygen), she doesn't have a breathing tube, and she is able to maintain her body temperature better than she was before. She has started eating her mother's milk through a tube and she is now back above her birth weight after a few days of evaporative weight loss. Doctors and nurses have been caring for Alisha and Dottie, but it has been God who has sustained them, given them health, and caused Dottie to grow. Seeing these events unfold has given me faith in God's power and his answers to prayer like never before. I hope it does the same for you as Dottie's story continues ...

Saturday, October 12, 2013

Dottie's feeding and growth

We visited Dottie today and she has continued to make small progress. She has continued to get her mother's milk and the nurses said she she's digesting part of it. Right now Dottie is being fed 1mL (less than 1/4 tsp) of milk every 3 hours. On Monday the nurses plan to increase her food intake to 2mL. Every 2 days after that, they plan to increase her intake by an additional 1mL, so that after 20 days she'll be consuming 10mL (2 tsp) every 3 hours. Of course if Dottie starts having problems digesting then they'll change the plan.

Dottie has also shown growth the past 2 days. Apparently it's typical for preemies to lose weight for the first few days after they are born, because they are in a much dryer environment outside the womb so they start to lose moisture. The doctors increased the humidity in her incubator so that she won't lose as much weight by evaporation. We spoke with a doctor today who showed us that she's grown 2oz in the past two days to just barely get back up above her birth weight (1lb 3oz). Doctors hope that Dottie will be averaging 1oz of growth per day from this point forward.

We received this gift from a dear friend tonight. It really touched our hearts and reassured us that God is the one who will make Dottie grow. Ounce by ounce, God will make it happen:

Click for a larger view


In the last post I showed some photos of Dottie's forehead wrinkles. In this video you can see her wrinkle and flatten it as something goes through her little mind. Since she's barely been able to open her eyes, I wonder what her dreams look like and what her thought processes consist of as her brain develops. The camera is zoomed in because I was seeing how video looked on Alisha's macro lens.

Forehead Wrinkles

One of my favorite things to see Dottie do (besides move her individual fingers and toes) is to see her wrinkle her forehead. Before Dottie I didn't really "get" infants, because they just sit there. Once kids get to 1-2 years old they really develop a personality and you can see them as a real person, not just a generic baby that responds the way all babies do. I think what I like the most about seeing Dottie wrinkle her forehead is that it gives me a glimpse of the expressions that I'll hopefully see from her a year from now.

... and this one I just threw in to prove that her forehead isn't always wrinkled like that. She's fast asleep and comforted. Look at that blond hair!

If you notice, one of the ways they monitor Dottie is with a heart-shaped gold sensor, placed on her lower back. Originally Dottie had the entire heart shape, but I think they cut it in half because she was too small for the regular preemie sensor. Dottie gets half of the heart, and we get the other half. Here's the other half in my hand for a size comparison:

Friday, October 11, 2013

Dottie throwing a Tantrum

Here are two videos we recorded of Dottie bundled up underneath her plastic insulating blanket. In the first one she's pretty upset about something. As her parent it's hard to see her cry out like this, because your instincts tell you to open up the incubator and cuddle her close to you, but your mind knows would be the worst thing for her.

In this second one she continued to be upset, but she did a neat little wave to the camera near the beginning. Throughout the video you can see her nostrils flare as she gets upset and then calms back down.

A person's a person, no matter how small

Here's Alisha happily resting on the couch her first day at home. She's got her snuggle blanket and her shadowy companion to give her that big smile. Sometimes it takes rough times to help us appreciate the smaller blessings that God puts into our lives each day to bring us happiness.

About 2-3 years ago, Alisha made this pillow from an old Dr. Seuss t-shirt. It has much more meaning for us now that Dottie is in our lives.

Our view of Dottie

Here are some pictures that give you an idea of how we sometimes have to view Dottie. As the NICU staff has learned Dotties patterns and behaviors, they've learned what keeps her comfortable. Unfortunately, she's often kept comfortable with lots of covers to keep her warm, and that makes cute infant photography difficult. Sometimes we have to peer through her blankets and tubes to see our daughter sleeping peacefully:

The nurses have said that she seems most comfortable sleeping on her stomach, which is funny because that's how I sleep most comfortably too. Chalk that one up to daddy.

I snapped this picture of Alisha watching Dottie. It is fun to just sit and stare at her as she moves, sleeps, and dreams:

Thursday, October 10, 2013

Home sweet home

Today Alisha (now a mom) was released from the hospital. Near the end of her hospital stay she developed very strong headaches. She had been in the hospital for 24 consecutive days and was bedridden for the majority of that time, either to protect unborn Dottie or recover from the birth surgery. During that entire time she was either constantly monitored for Dottie's vital signs or frequently monitored for her own health. Each day seemed to bring a new problem where she'd either have a new IV put in or she'd be told of a new problem she had (thyroid, pre-eclampsia, glucose intolerance). To top it all off, nurses would need to check on Alisha every 2 hours through the night. Alisha had some great nurses (Michelle, Janelle, Alexis) during her stay in the high-risk area, but after delivery she was moved to post-delivery where there were more patients per nurse, which led to less personable nurses. Alisha's physical limitations from surgery also prevented her from seeing her newborn daughter, which added to the stress.

For those who don't know Alisha, she is absolutely an introvert. We only recently discovered was that those headaches were caused by 24 days of monitoring, worrying, interruptions, and surprises. A few days ago they put Alisha onto very strong IV medication to get rid of the headaches, but they kept coming back. Today when she got home, laid down in her own bed, and petted her own dog she said the headache instantly went away. She is glad to be home! Here she is in her wheelchair, waiting for me to pick her up.

Alisha and I will be visiting Dottie daily in the newborn ICU. Below is the building that Alisha spent the past 24 days living in. This is the building that currently takes care of our precious little daughter. Hopefully in a little over 2 months we'll pick up Dottie just like we did Alisha today.

As an added bonus, I was encouraged in the parking lot when I met a guy driving a suburban who said his babies (assuming twins) had been in the NICU for 4 months (not sure if he meant weeks?) and he was picking them up today. The only thing holding him back was a parking spot. If you plan to come see Dottie, come before noon or after 5pm, because the parking lot gets packed!

Wednesday, October 9, 2013

Feeding Tube and baby PICC line

Today Dottie had good progress. Last night and this morning she had blood tests done. The doctors have noticed lower platelet counts (used for clotting), which may be coming from an infection or may just be a side effect of her low birth weight. Thankfully God increased her results, so no transfusions were necessary to supplement her own blood.

Dottie started on a feeding tube today. Previously the nurses were injecting glucose and other minerals that she'd get from food directly into her bloodstream. Now Dottie is consuming 1mL of Alisha's milk per feeding and she's fed roughly once every 3 hours. The nurses are checking if Dottie accepts the food. If she does, then they'll gradually increase the amount she consumes. This milk consumption will help her add fat and increase her ability to keep herself warm. 

Dottie needs to be able to maintain her body temperature in open air within a week so that doctors can put in a PICC line. You may remember that Alisha had a PICC line put in a few weeks ago. A PICC is a tube that's inserted into her vein that follows the vein all the way to her heart. Once inserted, it becomes an IV that can be re-used for up to 6 months. Since Alisha is now nearing the end of her hospital stay, hers was removed. I yanked it from the trash and snapped this picture so she'd remember how long it was. The T-fitting at the bottom end was sitting on her forearm at the entry point to her vein. The rest was inside of Alisha (*dry heave*):
As they pulled out Alisha's IV today, she remarked that today was the first time in 3 weeks that she hasn't had either an IV, PICC line, or both stuck in her arms. She was relieved to have normal use of her arms back. 

Keep praying that Dottie will be able to put on enough weight to maintain her body temperature and that the PICC line insertion will go smoothly! Alisha and I have been overwhelmed with all of the prayerful support we've received from all over the country and friends-of-friends. God is performing a mighty work before our eyes!

Dottie Blinking

Here is a video I shot late yesterday of Dottie. Dottie was looking into the sunlight from the window behind me, so when someone walked past she would move her eyes on response to the lighting change. You'll notice that her eyes aren't able to open all of the way, but you can see them move around for the portion that they're able to open right now.

Facial Expressions

Here are some facial expressions that I caught early Monday before they bundled her up to keep her warm. Dottie is much more bundled than this now. As she went from comfortable to uncomfortable, her eyebrows and forehead would change position. We couldn't hear her cry because the breathing tube completely fills her airway. It looks like Dottie has blond hair!

Dottie has an IV running into her left foot, another IV running into her belly button, and the rest of the lines are temperature and other sensors. They have her breathing tube taped to her cheeks so that it doesn't get dislodged when she moves (or gets moved).

... and this is how she looked when she met Alisha for the first time.

Later on tonight I hope to make it home and upload a video that shows her blinking her eyes!

Tuesday, October 8, 2013

Strange blue light

Recently they added a UV light that is a strong blue color. They said that because her kidneys/liver aren't fully developed, this light will hit her skin and help break down things in her blood similar to how a kidney/liver would. A number of other babies in the ICU had this, so it's fairly common. As you can see from the picture below, it kind of looks like a bug zapper.

It also messes with your eyes. Once you stare at the blue light for a long time and then look up, everything looks orange for about 30 seconds. You'll see our daughter with a mask over her eyes to prevent her from getting agitated by the strong light. I had to convert this picture below to black and white so it wouldn't be so blue. Next to her left hand is my ring.

More Flowers

I finally got a chance to make it home and copy off some of the pictures we took at the hospital. Here are some flowers Alisha received on her second day, I just didn't get a chance to upload them until now. Cullen and Julie sent these:

... Peggy picked these from her rose garden:

... this arrangement arrived yesterday from Denton County:

... and these arrived yesterday as well from Brady & Rachel.:

Looks like she'll we well-stocked in terms of flowers! Thank you to everyone for the kindness and support you've shown all three of us. Here's the last picture we took of Alisha about 30 minutes before she went into surgery. You can see the decorations scattered all over the room:

On Sunday Savannah Nelson made this card and had people at church sign it:

... and her name is ...

Lots of people have been curious about her name. We didn't want to name her until Alisha got to see her, so now we can officially say that her name is:  Dottie Monroe