Prayers for surgery

Sadie's G-tube surgery is tomorrow morning at 9:30. I am so excited that this is our last day with the NG tube. Yet, at the same time, it's a little scary that they'll be cutting my baby. I know it's a standard procedure and this doctor has done, like a million of these surgeries...but there are always risks.

So, please pray for Sadie that she would be safe and that the surgeon and his team would be guided by wisdom and have clear minds while operating on my child. Please also pray for Brian and I that we would be able to deal with Sadie once she comes out of the anesthesia. Sadie also doesn't deal well with pain, so I'm a little concerned with how the next week will go. And to add to that, school starts for me on Wednesday. Just pray pray pray.

Here's a cute picture of Sadie's belly...after tomorrow it'll never look like this again. (but doesn't it look so fat and healthy?)

Sadie's mani-pedi

Yesterday, Sadie's Auntie Elizabeth cam over and spent the night. She's been begging since Sadie was about 6 months old to paint her nails. I told her she's welcome to do Sadie's toes, but it might be hard to paint nails when she's all fisty. She finally brought over her nail polish...and since it was morning, Sadie's hands were relaxed enough to let Elizabeth do both!! Check it out, they're so pretty.

Feeding/Speech Therapy

Today's 365 picture is actually from yesterday, this Sadie playing with her ipad during therapy.

Sadie hasn't seen Nancy for probably a month. All our therapies were sorta put on hold while we waited for surgery to be scheduled, went on vacation, and etc etc etc. So, you can imagine Nancy's surprise when last time she saw Sadie she screamed through barely an ounce of solid food, and yesterday Sadie plowed through 4+ ounces (after eating 3+ ounces just a couple of hours before!!)

After eating, they often spend time playing with the ipad; practicing reaching and touching, and working on different sounds and words. Sadie is nowhere near talking, but she is so expressive with her oohs and ahhs and yayas, that I feel like working with her now will NOT be in vain. She may not be a good talker, but I think she WANTS to do it!!

365 project - #6

"Tunnel Vision"

The girl who watches Sadie during the afternoons while I work likes to take pictures of Sadie with the ipad while they're playing. The ipad doesn't take real great pictures...but it does have some fun special effects!! hahahahaha!! When she showed me this it made me laugh!

pray for baby Augustus!

Today's 365 picture is titled, "My Sweet Thing."

Take a look again at this picture of Sadie, doesn't she look good?! Did anyone ever think 18 months ago when she was laying in that NICU all hooked up to machines that she'd come this far?! And she has SO MUCH more to do with her life. She is an amazing little girl, and I have a feeling she's not done wowing the world yet. She is definitely destined for great things!

A friend of mine recently sent me a message on Facebook asking me to pray for a family she knows where Mom was rushed to the hospital and her baby was emergency delivered at 33 weeks because her baby was deprived of oxygen. She later posted this, which was written by the aunt of the baby. I don't know these people, but I feel like they are in the midst of living our nightmare from 18 months ago. I know how much it means to a family in need to receive prayers from ALL over the world, so I encourage you to read this story, then get on your knees and pray that God works yet another miracle in a family that is in crisis. We know first hand that God works miracles, even when you've given up hope. I can't help but think of my little miracle child (and all the other miracle children I've met over the last year and a half) and, while I physically HURT for this family, I also am encouraged by this story that baby Augustus will make it, and, just like Sadie, he will never cease to amaze the world with what he can do. It sounds like he has already top-notch care and has a fighting chance. He is already showing improvement, and, even though the doctors always present the worst, the family is full of hope. Well...I'll let you read it (have tissue close, it's a happy-sad).

I wouldn't normally subject you all to such a wordy update on baby Augustus, but I just cannot do it without sharing how HUGE and LOVING our God is. He is in literally every detail!

As you probably already know, Luke and Melissa were rushed to Kadlec Medical Center in Richland in the wee hours of Tuesday morning, July 19. Melissa awoke to violent hemorhagging which continued the entire way from their home to meet the ambulance on the Kahlotus highway, then from there to the hospital.

(Praise: That this all happened in the middle of the night when a) Luke is home and not an hour away for work; and b) the children were asleep and didn't have to witness them leaving for the hospital. It was very scary.

Praise: Neighbors close by to come stay with sleeping children until the Ashleys could get there. Which brings me to

Praise: My Ashley and Ashley Mask don't have to work right now, so they're with the children!)

Once arriving at the hospital, Dr. Ortolano had barely a 5-second peek with the ultrasound wand before he shouted, "C-section! NOW!" He had no time to wait for OR set-up, no time to wait for sterile field prep, nothing. Luke says the incision wasn't finished before baby was out. And from "C-section! NOW!" to baby being born was less than 3 minutes.

Dr. said baby was probably without oxygen for the entire duration of the hemorhage, which was caused by placental abruption (which was caused by pre-eclempsia).

(Praise: He said the fact that baby was resucitated (sp?) at all was a miracle.)

Luke and Melissa will need to fill in the information regarding what happened at Kadlec. I only know what nurses in Seattle told me, that they had to work really hard to get him stable enough to fly. Then they almost decided to send him to Spokane because the weather between Richland and Seattle wasn't the best. They waited for Seattle, since they'd do the same things in Spokane that could be done in Richland. Again, details will need to be filled in by Luke and Melissa.

(Praise: I was already in the Seattle area so Jonah could go to golf camp (which was canceled but for some reason decided to come to the west side anyway) and could go be with baby, while Melissa was recovering, getting well enough to make the trip.)

Baby finally rolled into Seattle Children's at 1:50 pm on Tuesday. They had procedures and things they needed to do before I could go see him. I wasn't able to get in until 4pm. He was so tiny (but not too tiny), he looked so perfect on the outside, I never would have known he wasn't as perfect on the inside.

Baby was put on a cooling protocol in flight, which was continued at Children's and will continue for 72 hours. This means that they cool his system to slow things down.

Essentially, his organs would be searching for needed oxygen and not getting it, which would cause them to deteriorate. The cooling protocol greatly slows down or stops that search and gives the body a chance to recover from the trauma.

Around 5:30 pm Tuesday night, the nurses hooked baby up to a portable EEG.

Flat lines. Two very ugly flat lines. They remained flat all through the night.

At roughly 6pm, Luke and Melissa were being told by doctors (at the same time as I was being told by nurses) that there was no hope. His chest x-ray showed complete cloudiness in the lungs. He couldn't breathe without the ventilator, and was switched to a different one called hi-fi. He wasn't putting out urine which meant his kidneys were damaged. He most definitely had a brain injury. He had no brain activity. His pupils were fixed and dilated. They were told to expect the worst and be ready to make some tough choices.

He was limp as a rag doll. Anyone who's been around a newborn will know how weird that is. To open up a baby's palm and have it lay there flat. Fingers didn't curl closed. To move his arm or leg and he doesn't resist or try to curl up. Just limp. I've never experienced it, it was so unnatural.

He wasn't sedated at this point. He just wasn't moving. And those two EEG lines on the monitor were still ugly and flat. His little pupils were still dilated.

When I went to sleep at 12:30 Tuesday night/Wednesday morning, there was very little hope. The nurse told me they were keeping him alive until Luke and Melissa could get there.

When I got back at 4 a.m., he had begun to have some reflexive type movements - tickled foot, squeezed hand. They were extremely faint, but they were there. So were those two ugly flat lines, though, so the nurses wouldn't concede that this was good.

By the time rounds happened (around 8 a.m.) the doctor was saying she couldn't be certain that the absence of brain function wasn't the result of heavy sedation during the breathing tube switch-out. She also said it would be better to wait until after the cooling protocol was finished to do any definitive testing, brain, kidney, anything, since cooling slows everything down. The first bit of hope!

At some point in the afternoon (4pm maybe?) they decided he'd been weaned from the hi-fi ventilator enough to switch back to the standard. The nurses said it was the easiest transition they'd ever seen! Praise!

Jump forward to the hours before Luke and Melissa arrived, around 5 or 5:30 tonight (Wednesday).

Spontaneous movements! Yes! NOT reflexes, NOT seizures. And lots of them. First, he'd move his fingers a little. Then his whole hand. Then he'd move his whole arm! More and more as that last hour wore on. But his pupils were still fixed and dilated!

But the EEG? It started to jump around! And without stimulus to get it to happen. Spontaneous EEG activity on his own!

I left the room when they put in his PICC line. When I got back? HE WAS BREATHING ON HIS OWN! Still hooked up to the ventilator, but he was doing 95% of the work himself. PRAISE!!!

When Luke and Melissa arrived, he definitely responded to their voices. He moved more in the first 20 minutes than he had all day. PRAISE!!!

And then... the doctor. I'd call him a jackwagon, but I'm a lady.

What he told them:

- Your baby has no brain function (in spite of obvious signs of lots of activity, plus EEG response to sudden loud noises; doctor was shocked to see that, and said baby could hear, but still wouldn't have a good quality of life, you should really consider what you want to do)

- Your baby hasn't put out any urine (which he had, and was corrected, and once again shocked)

- Your baby lacks the most primal of reflexes, like swallowing and reactive pupils.

- Doctor used the word "burden" no fewer than 5 times.

What he didn't tell them (but the first shift doctor told me before she left):

- Nearly everything is a wait-and-see. You can't achieve definitive test results during cooling protocol. It was WAY too early to be advising about pulling the plug! He was in a braindead coma, yes, but it was too early to make decisions based on that.

- Even with the cooling protocol, they can tell there's no fever (which would indicate infection) because baby's heart rate is normal.

- Chest x-rays showed complete cloudiness Tuesday, which means that the alvioli were mostly collapsed. Chest x-rays Wednesday night looked normal!

- Baby's heart has been beating this ENTIRE time without any help. Completely on its own.

- Baby's blood pressure top number was in the 30's all day. Went up to near 60, the low end of normal for a newborn, after being switched to the standard ventilator.

- Baby's oxygen saturation was in the low to mid 80's all day (goal was 90) and went to 100 after being switched to the standard ventilator.

- Baby is now doing almost all his own breathing (WE had to point that out, and he pooh-poohed it)

- Baby is moving on his own. LOTS. Doctor said this means nothing, since pupils are fixed and the most basic of reflexes like swallowing aren't there.

- Baby has so much brain activity now!!! Again, doctor said this means nothing since pupils are fixed and the most basic of reflexes aren't present.

Luke, Melissa and I left the room for an hour to go have dinner. And when we got back?

REACTIVE PUPILS!!!!! One of those most primal of reflexes the doctor told us he should have.

So to make an extremely long story short? Augustus still has a long road ahead of him, but GOD IS BIGGER THAN THE MONITORS. HE'S BIGGER THAN THE DOCTORS. HE HAS A PLAN AND A PURPOSE AND HE IS MIGHTY.

We are praying specifically for Augustus' healing, and also that God would glorify Himself at Children's. What a mighty testimony!

365 project - #4

Today's picture is called "learning to sit." This was at physical therapy (PT) today. Sadie is getting so strong and even though it's hard work and feels really different to her, she works hard!

Sadie is still working on being on her tummy. Having this pillow under her helped motivate her to get her head off the ground. She is also learning to bite, so she is working really hard to get her hands to her mouth, and she really wanted this rag in there!!

We put Sadie in the Creepster-Crawler (the dinosaur) for the first time. She hated it, but only because it was so different and disorganizing that she didn't have any idea what to do about it! I just laughed at her! She did such a good job.

A couple of times she stopped her screaming and trying to roll into a little ball and tried to process what her body was doing. But it didn't last long before the screaming started again! I think if we keep exposing her to this device, before we know it she'll be crawling! In the moments that she was calm, she got her legs moving like she was going to take off...it's just those stinky ol' arms that won't get with the program!!

Here you can see she's so mad because her body won't do what she expects it to! haha! What a big girl!!

Thinking about Sadie's brain...

Here's the project 365 picture of the day: "Pretty Patchy"

An experiment was done where people's vision was completely removed for 5 days. In just a couple of days the brain had rewired itself to make other senses heightened (fingers for reading Braille, hearing to distinguish small differences in sound, as well as vestibular to detect small differences in movement). When the blindfolds were removed, the people had a hard time seeing and judging where they were in space...but after a couple of days, their brains adjusted once more and were back to the way they were before the experiment.

The conclusion was that, even though we have names for areas of our brains, such as "visual cortex" and "auditory cortex" those areas aren't reserved specifically for that function. But, in the visual cortex vision is the path of least resistance to receive that input, so those are the neuronal connections that are made and solidified. So, when that visual path is blocked, other connections are made for other senses, and that explains why Sadie's hearing is so sensitive, as well as her vestibular.

Here's a little background about Sadie and movement (vestibular). We discovered real early that to calm our baby she needed to move. And I'm not talking rock her in a rocking chair or put a vibrating mat in her crib, I'm talking brain rattling movement. If she was being held and bounced, you weren't doing it right unless your legs burned. If she was in the bouncy chair it had to be violent; we called it the hurricane. And in the chillout chair, her head needs to be rocking back and forth for the movement to truly be calming. It takes violent, extreme movement to stimulate that vestibular system. But, on the other hand, Sadie is also very sensitive to movement when she's sleeping. With most babies, once they're asleep you can get them out of a car seat and carry them all the way upstairs and put them to bed (I know, I've seen it), not Sadie. If Sadie falls asleep in my arms, sometimes a big sigh will wake her up. When we put her to bed at night, one of us usually lays down with her in the bed. Once she's asleep, the big challenge is to get out of that bed with as minimal movement possible so as not to wake her (maybe she needs a Tempurpedic memory foam mattress like we have!). So after reading about this vision experiment and how it effected the brain, I started thinking about how this knowledge applies to my own child.

Sadie is visually impaired, but her impairment is directly related to damage in her occipital lobe, which is where your visual cortex is. Because of this injury I am not sure how much of her visual cortex is functioning, obviously some since her vision is not completely gone. However, as her vision improves, I'm not sure another part of her brain hasn't taken that over. But, let's say she isnt' using her visual cortex to its full capacity, are her other senses taking over? Does this still happen even when your visual block is brain related (as opposed to eye related)? And if this is indeed the case, can we correct her extreme vestibular and hearing by blocking something else out?

The lesson in the chapter of the book I read, which included the previously mentioned experiment, was that if you want one part of the brain to be super-charged, you have to block its helper. This theory seems to be recurring in the book, when helping people regain strength, movement, and coordination after an accident, there was noted progress once that path of least resistance was blocked. So, if after a stroke, someone had lost the use of the left side of their body, the right hand would be inhibited to encourage the use of the left hand, therefore strengthening and reconnecting those neurons in their brain that had been damaged or destroyed. I have lots of other theories about how we can use this kind of technique to help Sadie's physical strength, but I'll save that for another post.

So, here's my hypothesis: Since Sadie is not fully using whatever visual cortex she has in operation (and there is obviously something working there!), then it's making her hearing and vestibular senses more sensitive. The goal then is to increase her use of vision and the input she receives through her eyes so that her other senses can normalize (or at least calm down some). Can we do this by blocking her hearing and stimulating her vision for certain amounts of time? Will this in fact increase the use of her vision? And will use of her vision in fact calm down her vestibular sensitivity?

I asked the eye doctor this question and he told me he feared that blocking her hearing might create other sensory problems instead of helping her vision. He recommended working on improving that vision through multi-sensory stimulation (as opposed to working on one sensory element in isolation), and we of course are working on patching Sadie's eyes. The patching is done to help improve her ability to track her eyes together. Right now, her left eye drifts off some, so by patching her right eye, it causes her left to work extra hard to focus and track. But we want to make sure she's not losing out on development, so we patch the right eye for 2 days and the left for 1. And it is improving her vision as well as her ability to track with her eyes together.

365 project - #2

I titled this picture "fat and happy"

Sadie's NG tube was put in on May 22, since then she has gained almost 5 pounds!!! Lately, she has gone from exclusive tube feedings (4 times a day) to mostly oral feeds. A month ago, Sadie would barely eat 1.5oz of pureed baby food. Today she downed 6oz of banana-pumpkin-vanilla yogurt like it was nothing! She is really getting to be a good eater! However, she still won't drink, and because of that I am thankful she has the tube.

Look at those love handles! Don't you just want to SQUEEZE them?!!

365 project - #1

I joined a group called 365 project and the aim is to post a picture every day for 365 days. I thought it'd be fun to post a picture of Sadie every day for the next year. Tomorrow she'll be officially 1 and a half (18 mos!!). What a great time to start!

Here's the first one. I call this "yogurt face"

And here's the link if you'd like to follow me on the 365 project: Christie's 365 project

Our Oregon Vacation Post #3

Most of the reason we come to Eugene at this time of year is for Sadie's cousin, Attilie's, birthday. Her birthday is July 1 and it just provides us the perfect excuse to get out of the heat in Phoenix, as well as see some fireworks with friends! This year Attilie's birthday was on a Friday, but we celebrated from Thursday - Saturday!!

I had this idea to take Attilie to Build-A-Bear for her birthday (I had never been, and I think it would have been more fun for a 5-year-old than a 2-year-old, but oh well). Thursday afternoon we all met at the mall. By all I mean, Sadie, me, Grammy, my brother (Attilie's dad), my sister-in-law, Attilie, and her new baby brother, Theo who is barely 6 weeks old. Lucky for us, we know the manager at Build-A-Bear, so we got special treatment!

First, Attilie got to pick out whatever animal she wanted. We purposefully steered her toward the cheaper models (even though it didn't matter) and she immediately fell in love with the Kitty. First, Attilie and her Papa picked out a saying, they chose the one that says "I love you" when you squeeze the kitty's paw. Then, we all picked out a heart and put it inside this kitty (there were 7 of us, so this kitty was filled with a lot of love), then Sue (our manager friend) proceeded to put a pipe up the kitty's backside and blow a bunch of fluff into her. Then we sewed her up, gave her a (air) bath, and proceeded to the station to make her a birth certificate. Attilie decided to name her Julie, after many many names that her Papa gave her from which to choose. It was really apparent that Attilie loved Julie, and that made me happy...I love making that little girl happy!

choosing her kitty

choosing what she wanted her kitty to say

adding all our love via little stuffed hearts

sewing up the kitty after being stuffed

giving the kitty a "bath" to get all the extra fuzz off

saying thank you to Aunt Christie for the birthday present

Attilie loves her kitty

Naming the kitty Julie and making her a birth certificate

The best part about Julie the kitty was later when we were all back at Grammy's house. Attilie would squeeze Julie's hand and she'd say, "I love you I love you," then Attilie would look at someone and go, "I love you." So precious. My brother says that days later after they were home in Portland, Attilie still cuddles with Julie.

The next day, Friday, which was Attilie's actual birthday, we geared up for a family swimming event. At the outdoor public pool, they have toddler swim time from 11:30-1:00 (the big kids come from 2:00-5:00), so we all met there. It was the same crowd as before, plus Attilie's other cousins, Maddie, Louisa, their mom, Brianne, and Attilie's Gaga (her other grandma). Attilie was tired, and cold, and after about 20 minutes fell asleep in Gaga's arms. Everybody else had a great time swimming, even Sadie! Even though Attilie never actually got in the water, it was her birthday and we let her do what she wanted to. After all, you can reason with a 2-year-old!!

I think this is as close as Attilie ever got to the water

this is how she wanted to spend her birthday!

the rest of us enjoyed the sunshine!

Sadie swimming

Sadie swimming

Sadie and me coming down the waterslide!

ready to do the slide again!

Saturday was Attilie's birthday party at the park. It was also strictly a family affair, but even more were added. This time we celebrated with Attilie's Aunt Melissa and Uncle Juan, who flew from California with their baby, Isaac. And of course her Poppy joined us, as well as Uncle Cameron. We ate a wonderful vegan cake with real raspberries in the middle, and beautiful flowers on top! Then Attilie opened presents. She got some really neat stuff like a tunnel to climb through, a tea set made from BPA-free recycled plastic, and her first necklace from her Papa (Hello Kitty, of course). After presents, we swang, we blew bubbles, we played with balloons, and we ran around and got dirty. Everyone was tired and hot by the end of that party...except for Sadie who took a nap as soon as we got there, then laid on the blanket and kicked and kicked and kicked with excitement, especially when we gave her a balloon!

passing out plates and telling everyone "Happy Birthday to you!"

blowing out her 2 candles!

opening presents!

This was Sadie's idea of a good time!!

Attilie took a break from running and swinging to "play" with Sadie

blowing bubbles with Papa

she really wanted this purple balloon

Sadie was happy with a yellow one!

After she lost the purple one, Attilie wanted all the balloons!

And so ended Attilie's second year of life. And I can tell her parents are already ready for her to be 3!!

Our Oregon vacation post #2

<When I was younger we went to church every Wednesday night. And it was like a regular service, there was worship and a message just like on Sundays. And the crowd was almost as big as Sundays too! Well, I guess things are different now. There are so few people that go to church Wednesday nights that they hold the service in the lobby. Granted, it's a spacious lobby, but there were probably less than 100 people there. It was much more intimate, and the perfect place for my mother to show Sadie off.

I am so pleased that Sadie has been on her best behavior since we've arrived in Eugene. Tonight, she sat through dinner at a Greek restaurant, then a perfectly silent car ride, and finally church with Grammy. I don't think I held her once except to get her in and out of the car. She was a perfect angel.

And Grammy loved it!