reach...reach...YES!

I'M

GONNA
GET
MOMMA'S

PHONE...

YAY!!! I did it! :)

We've had a good week at the Tuley household. Jacob is trying to gain more and more independence each day. We can tell that he wants to be mobile, but he's still in the strength gaining mode. But, we know mobility will be coming soon. As shown in the pictures, he can lean all the way over to the floor and bring himself back up again. Coming to a sit all by himself is just around the corner. He rolls back and forth on the floor, and still loves to rotate himself. He can get one knee up and almost underneath him. This is great progress for him! We're happy!

Lately, he's been working on CHEERING the USA in multiple Olympic events on TV and seems to like Snowboarding the best. He grunts very excitedly while the athletes snowboard the half pipe and race each other during snowboard cross. Considering Jacob's extreme start to life, maybe he will always enjoy the thrill seeking sports...For my sake, I hope not! :)

There is not a day that goes by that we don't thank God for Jacob. Yesterday, I was reminded about the day of Jacob's first surgery and the scripture that God led Jeff and I to read to Jacob that day. Matthew 7:7-8. Ask and you will recieve, Seek and you will find, Knock and the door will be opened to you. I am going to continue to ask God for BIG things for Jacob, because that is what God wants us to do...to pray big prayers, and seek and find Him, and to follow when the opportunity comes.

We hope this blog has been helpful to other people that are struggling to find hope amidst the "tough stuff." Hang in there! God will never leave you or forsake you.

Have a great day!

Justin Bieber Hair

Here he is...Teen sensation Justin Bieber
and his look alike Jacob Tuley!!!!!!

Jacob's hair is beginning to get out of control on the sides...so we styled it like JB. Jacob loves to listen to the song "One Time" by Justin Bieber. So here's our tribute to all his fans out there! :)

As for a quick update, Jacob is doing pretty good. You can see from the pictures above that he doesn't really need his oxygen and he is finding ways to be rid of it...with a snotty nose and all. For some reason we just can't get rid of this lingering "cold" so we're disinfecting everything and hoping to get rid of those germs. Spring can't come soon enough.

He's begun to go from a sitting position to his belly, all by himself. He wants to be mobile, but doesn't have the coordination yet. This is the first step and it's pretty funny to watch. Our son, WHO IS NOT THE RISKTAKER, is beginning to take some risks to get things out of reach. Yay!Also, it sounds like he is starting to "copy" words that we say, although they don't sound anything like words, and we can't tell what he is saying at all, but nevertheless we feel like real words are just around the corner.

Thanks for checking in with us. Have a wonderful day. And Jamie...if you're reading this...UPDATE YOUR BLOG ALREADY... you've "had a blog" for a while now!!!! I love you sister! Hee Hee.

Board Meeting

What might they be discussing???

Winter Bugs....Bah!

Well...Jacob's cold has not gone away, and since I last posted Jacob developed a cough that got really bad throughout the weekend. We've been housebound for a while now, except for Superbowl Sunday (we'll get to that later), and the trip to the pediatrician on Monday. So, we are ready for Winter to end so we can get outside and get rid of these nasty winter bugs!



New things he's doing:



Jacob has gotten really good at rotating in his crib...it takes him no time at all now. He has figured out how to bounce while standing and holding onto things. He likes to "grunt" for attention and when answering a question. He is throwing EVERYTHING. Some advice on when/how that stops...please. He can roll a ball back and forth while sitting. He rather enjoys that game (as does Jackson). He loves reading books and turning pages. He listens to Michael Buble and "dances" to the music! :) He copies sounds that we make and tries to figure out change in pitch. He doesn't like it when we "make" him hold something....he would rather do it himself. When laying on his back he lifts his bottom up and down in the air by pushing down on his feet, while laughing! What a goof! He loves Jackson and often tries to imitate his bark with a grunt when he hears him barking.



Here's some pictures of Jacob from this week.



Standing and holding onto the coffee table. He mostly just stands there and looks around. He's not confident enough to move anywhere yet!
Fell asleep in his crib...after about 30 minutes of rotating. This is how he ended up!

Best Buds!

Jacob "singing" and "dancing" to Michael Buble. He thought his sock made a good stage prop, until he threw it on the floor! :)

This picture was my doing. I opened the drawer in his room to see what he'd do. As I was putting things away in his room, he thought it would be fun to pull things out, so I'd have more to put away. Wasn't that thoughtful of him?

Now to Superbowl Sunday...

Our small group usually meets on Sunday nights. So we decided to meet at the Beasley's house and watch the game together. Jacob wasn't feeling his best, but he wasn't horrible either, so we decided to go. Here's a picture of Sam and Jacob together on the couch. Sam loves Jacob and was trying to sit in his lap and play with him all night. Here's a couple of pictures of the two of them. I can't wait for the day when Jacob can run around with Sam on Sunday nights! :)

Trying to hug! :)

Thanks for checking in with us this week.

100th Post...

I'll be honest...I never thought this blog would reach 100 posts. When we started this blog, we weren't sure how long we'd be needing to update on Jacob's health, if at all. However, here we are...100 posts later, with millions of miracles in between. God has been good to us! Thank you for investing your time and prayers on behalf of our family. Here's to hundreds more!



Jacob is still fighting his cold, but we do feel like its getting a little better. Poor guy, he doesn't even know he's sick. He's got snot coming out of his nose and he's just smiling away! He's coughing throughout the day, yet, he plays like nothing is wrong. He's sounds like a frog when he makes noise, but he still makes it...trust me! He's been satting great and has not needed any extra oxygen throughout this cold. What a trooper!



On the developmental side of things...there's only a few things to report about Jacob's progress. He is not "scooting" per say, but he has found a way to maneuver himself completely around in his crib. I walked into his room to check on him during a "nap" and found his head on the opposite end of the bed from where I left him and he was "talking" to himself. :) Here's the pic of how I found him.

He also has gotten alot stronger in the past few weeks and his "throwing" arm (he's a lefty we think) is definitely stronger! He is constantly picking things up and throwing them back down. He always reaches for things just to see if he can tip them over or pull them down. Lovely! Here's a sequence of pictures of him doing just that...

Also, good news...we scheduled our sleep study for April 9th. This will be the true test to see if Jacob will be ready to come off oxygen. You can mark it on your calendars if you want and be praying for Jacob to really show these doctors what he's made of!

Thanks for checking in with us. Have a great day!

Boo....

Jacob has a cold...and not just any cold...a coughing, sneezing, sucking the snot out of his nose all the time cold. We were at Vanderbilt last week 3 times, and I'm sure that's where he got this bug! His first real symptoms showed up on Wednesday evening and it's still hanging around and getting worse in the past few days. We'd appreciate any prayers for our tough guy! We want him to kick this cold to the curb!

Thanks!

Appointments...and more Appointments...

Jacob had alot of check-ups this week and all the doctors were pleased with the progress he has made in the past 6 months.

Our week started with a Cardiology follow-up appointment. Jacob had an Echocardiogram done (an ultrasound on his heart) to look at his pulmonary hypertension and heart function, and then we met with the Cardiologist. His Echo looked great and the doctor didn't see any changes in heart function, so he discontinued the medication for pulmonary hypertension--sildinafil--that Jacob has been on since our stay in the NICU. So...one more medication DONE!!! Yay!

On Wednesday we had a follow up appointment with the NICU clinic to monitor development and overall health. We were so pleased to find out that Dr. Patrick Jones, a Neonatology fellow at VCH, was going to be the one to do the assessment and follow-up on Jacob. He was in the delivery room the night of Jacob's birth, walked with Jacob and Jeff down the long hallway to the Children's hospital, and was one of Jacob's doctors while in the NICU. He was with us from the beginning, and we were all smiles as we showed him the progress Jacob has made. During that visit we had a developmental assessment done. The assessment projected that Jacob's physical development is equivalent to an 8 month old, his cognitve development is equivalent to a 10 month old, and his communication development is equivalent to a 12 month old. We are so proud of Jacob's progress and despite the tough start, he is moving along at a steady pace. We go back at the ages of 2 and 3 to do a more intense evaluation, and we're hopeful that Jacob will be fully caught up by then.

Our final doctor's visit was today with the Pulmonologist (lung doctor). He was pleased with what we had to tell him about Jacob's oxygen requirements, or lack thereof, and said Jacob looked and sounded very clear. It is rare for a child to come off oxygen during winter months, because of colds and RSV, etc. So, we will remain on the oxygen until Spring. As much as we want Jacob off oxygen, this was what we expected. However, he did say that he would like to schedule a sleep study for Jacob some time in early April. During that sleep study they will take Jacob off oxygen and have a variety of monitors recording information about saturation levels, etc. SO....if that goes well, we will be able to come off oxygen completely some time in April!!! YAY!!!!!

As always, Jacob did extremely well during these visits. He's such a happy kid, and didn't seem to mind the doctors messing with him, the nurses checking his blood pressure, or the fact that he was weighed, measured, and had his sats checked during every visit. We're so blessed that Jacob has such an easy going personality.

Here are a couple of pictures of Jacob from this week. He's such a cutie!

Jacob in his Birthday outfit on Tuesday.

Jacob sitting with Papa Bear playing the keyboard. How cute!

Thanks for checking in with us! Have a blessed day!

The Amazing Jacob turns ONE!!!!! (although it's officially on Tuesday)

The official day is Tuesday, January 26th, but we celebrated this past Saturday with a party with close family and a few friends. The theme was Super Heroes. For a long time Jacob had been called "The Amazing Jacob" because of all the amazing things he and God were able to accomplish together after birth. So, the Amazing Jacob got a Super Hero party, complete with his own logo and cape.

There were many family members that traveled from far lengths to spend time with us (Jacob) for the weekend...all the way from Atlanta, New York, California, and Texas. The Amazing Jacob is quite loved by all! Here's a picture of GG and Aunt Jamie.

As the guests began to arrive, Jacob quickly became the center of attention. Just as it should be!

There were presents opened and directly put into the mouth...

There were smiles during cake time...

There were moments of distress...

...and then there were moments of play...as cake went flying all over MOMMY!

Of course there was food...

...and lots of decorations...

...a high chair that was ready for action...

...and a front door showing who would be the center of attention!

It was a wonderful celebration and full of great memories.
Thank you to all the people that made it possible.

Rollin, Rollin, Rollin, Rollin, What?

The title says it all. Jacob has finally showed us that he CAN in fact roll over. He has had all the steps for a while now, but never put them all together...until recently. This has been alot of work...and alot of stretching...and alot of practice...but it finally paid off!

Way to Go, Jacob!

Who needs oxygen???

So, this morning, I went into Jacob's room to change his diaper and get his day started....and this is what I walked into...

I promise you...I did not take them off and I don't know how the nasal cannula ended up behind his head on the bed, but nevertheless, that's exactly where they were. So, I snapped a picture and then snapped a picture of the Sat monitor as well. We were TOTALLY excited to see this!!!

The number on the left is his sat...that's right 100! Yay! The Amazing Jacob is showing off for you all...and we're pretty excited about it!

I love this picture of Jacob and Jackson. It's just precious and I had to share it with you all. Jacob is really beginning to look like a little boy and not a baby. (sniff sniff) And Jackson is so great with Jacob, he lets him do just about anything to him. It's wonderful.

Didn't you know that shoes are the latest and greatest in appetizing treats? Don't worry, he can't walk yet, so these shoes have never really been on the ground. :) But sooner or later we're going to have to let Jacob in on the secret...shoes are really pretty nasty!

For those wondering about Jacob's upcoming appointments...we've got Cardiology on January 25th and Pulmonology on January 29th. These are the two doctors that decide what treatment will be for lung growth, pulmonary hypertension, and oxygen requirements. We are anxious to see what they have to say about Jacob's need, or lack thereof, for the oxygen. Thanks for lifting him up in prayer about these things.

Thanks for checking in with us. Have a wonderful day!

It's Play Time!

Jacob's personality is really starting to show more and more these days. Here's a few pictures of him from the past few weeks.

This one is so cute...Jacob with his "laptop" and dad with his!

Jacob still hasn't figured out how to get the ball in the basket, but maybe soon! Looks like I caught Jackson in a yawn or something!

The days are going by so quickly. It's hard to believe that our little boy will be one year old very soon. Yikes!

My latest project includes taking all Jacob's medical records, insurance claims, TEIS information, and medical supply orders and putting them into a nice, neat, chronological, and organized binder for future reference. I have been putting it off for a while. As daunting as this sounds, it's actually been pretty amazing to go through all the paperwork. As I was reading his birth report last night, I was amazed at how technical everything was, and that I actually understood it. I guess that's what 101 days in the NICU will give you! Some of the doctors actually found ways to put a little bit of themselves and the personal things into their reports. For example, the NICU doctor on the night of Jacob's birth wrote that Jacob had pictures taken and was seen by mom for a couple of minutes before taken to the VCH NICU. It didn't feel like a couple of minutes, but I can still see that moment in my head. Nice that he reported about it. He thought it was important enough to note it.

Interestingly, I actually did find a mistake in one of the reports though...one doctor (that we saw all of 1 time) put in her report that Jacob received his surgeries while on ECMO.....when actually....he was NEVER put on ECMO. Pretty big difference! I guess she must have assumed that, or just glanced through a previous report and thought he had needed it with his previous history. Who knows, but I thought it was interesting.

Enough of my ramblings...thanks for checking in with us today. Please keep praying that Jacob will continue to make progress in his gross motor skills...it seems like that's one area where we need alot of help. Have a blessed day!

Rock Out!

Didn't know we had a musically inclined child, did you?

I had to use large rubber bands to hold the keyboard to the high chair...otherwise he'd find a way to throw it on the ground.

Portraits and Update

Back in November, we had some family portraits done by Mary Twitchel Photography and here's some of the photos she captured for us. Our sweet boy did so good and smiled quite nicely for the photoshoot. For Christmas we purchased photos of Jacob for our family members, and they loved their gifts!

Many people are asking for an update on Jacob's health, development, etc. Here's the skinny on the Big Guy...

He's weighing about 24 pounds and measuring about 32 1/8 inches (we had a doctor's visit today). He is wearing size 18 months clothes (mostly for the length) and size 4 shoes.

He can sit for hours and hours on end, and moves his torso as though he wants to be mobile, but has not started crawling just yet. When put in the crawling position, he will tolerate it for a longer length of time. He can stand (finally) for longer lengths of time and is working on balancing his weight.

He can use his thumb quite well and is working on incorporating his index finger with it. He can take things out of containers, but tends to throw them on the floor rather than put them back in. :) He LOVES throwing things on the floor. He can say words like "La La, Ma Ma, Ba Ba," and sometimes puts them together to make it sound like talking. He also makes loud grunts to call attention to himself. He can shake his head NO, and moves his body to the beat of music. He has started to wave his hand to say hi and bye. He loves turning pages in a book and making lots of noise in church. :) He has started curling his tongue in hismouth and is blowing raspberries some. He puts EVERYTHING in his mouth and likes exploring different textures on his tongue. He has 8 teeth, four on the top and 4 on the bottom, and is currently drooling everywhere...the molars are starting to come through on the bottom.

Medically, he is doing well. We have gotten through one bad cold, and a serious stomach bug with things coming out of both ends (if you know what I mean) with no medical problems. Yay. He's currently on 1/8 liter of O2, and satting great! In fact, we have stopped putting the bandaids on his face to hold the O2 in place and it falls out all the time. At night, we will find the oxygen around his neck, on the left and right sides of his face, and his O2 Sats are still great. We go back to the Cardiologist and Pulmonologist at the end of January for a follow up about his oxygen. Maybe we'll be able to wean earlier than expected?????? Maybe....just maybe????

Oxygen or no Oxygen our little Jacob is just the most amazing gift we could have ever been given. Every day with him is a reminder to us that God has entrusted us with a special person to raise and love. We were willing to give him back to God before he was born, and God, in his great love and mercy, gave him back to us. I will never understand that, but will never cease to Praise Him for it.

May you look at your life today and think about all the ways that God has worked to show you love and mercy. Thanks for checking in with us. Have a wonderful day.