Giggles with Gramma Jo

My mom came all the way from California to spend a couple weeks with Jacob. They had the best time together. He really thought she was something special. She got some giggles out of him, and had him smiling often. Here are some special pictures of them together, and a video that shows just how much she could make him giggle, even with something so simple as saying her "name."

Gramma Jo's first time holding Jacob. What a special day for both of them!

Rocking and Singing with Gramma Jo...see the smile???

Here's the video of Jacob and Gramma Jo. How fun!

Jacob on the 4th of July.

Chris and Lois Ehlers (family on Jeff's side) gave this onesie to Jacob. The shirt says, "Hometown Hero" and I would have to agree...he's our Hero anyways! On the 4th we didn't go anywhere and see fireworks, not that you could in Nashville, it was raining, but maybe next year Jacob can get a real taste of what that day is all about!

The home health nurse came to see Jacob today. (She comes every two weeks) Jacob weighed a whopping 16 lbs. 4 oz. and 27 inches long. What a big boy! She listened to his lungs and said they were very clear, that was a great sign. We have an appointment with Pulmonology at Vanderbilt on July 24th to check his heart and pulomonary hypertension. This appointment will also tell us more about how long we will need the oxygen. Please continue to pray for that appointment.

Thanks for checking in on us. May you be blessed today!

P.S. Thank you to all the teachers at A.Z.Kelley for the card and money that you collected for Jacob. It meant so much that you were praying for us. I plan on using it to keep our diapers stocked in the house! :) I can't believe how fast you go through those things!

Finally an Update

For those of you that have been looking for an update and not gotten one...this is why! For the past week or so, my mom and I have been decorating the sun room while Jacob was napping. Usually, that's my time to update the blog, download pics, work on scrapbook, clean house, etc. But when my mom was visiting, we decided to take on the task of decorating! Fun! So here's a picture of the sun room empty, and another one with the finished product. We cleaned the inside first, made the curtains and pillows, and put it all together! What do you think?

Here's proof of our handiwork!

My sister, Jamie, and brother in law, Josh, came in for a visit for 4th of July weekend. We had a great time just hanging out and playing with Jacob. Josh and Jeff put some trains up in Jacob's room and they look cool!

Here's a picture of the big guy sitting in his bumbo seat. He's really looking handsome these days! :)

Jacob is doing really well at home. He can hold his head really well lately. He is beginning to tolerate tummy time much more, but still won't lift his head and neck. He is reaching and grabbing at everything in front of him, and putting all kinds of things in his mouth. He recognizes our voices and smiles when we say something. It's so awesome! Jacob doesn't have alot of physical strength yet, although he is getting more and more each day. He can't quite roll over, but he will lift his legs and curl his hips when he stretches in the morning. Cute! He has started rice cereal, and doesn't like it too much, but will tolerate it some! :) The last doctors visit has us weighing 14 lbs. 6 ounces, but I'm almost positive that he's gained at least a pound and a half since then. He's getting heavy!!

Thanks for the continued prayers for Jacob. He's such a miracle. Please continue to pray for his development, that he will continue to grow and improve each day!

Thanks for checking in with us! May you be blessed!

A few good pictures...

These pictures are just too cute to not post on the blog. Jacob is smiling and laughing so much more now...We love him so much!

Jacob in a bear outfit for Papa Bear...

I'm ready to play ball Grampa Tuley!

What a laugh!

Jacob is doing really well at home. He's finding his hands and putting them into his mouth all the time! He is holding his head well and beginning to lift up while on his tummy. We are still remaining at home most of the time except for doctors appointments. We are just worried about having to go back to the hospital, so we are being extra careful.

Hope you have a blessed day! Thanks for checking in on us.

Father and Son

From the beginning to now...

A picture speaks a thousand words. For Jeff, that's alot of words!

Happy Father's Day Jeff!

Smiles and Tongues

It's amazing how much these little ones discover. We're having fun watching Jacob find his mouth, tongue, smiles, hands, feet, and his laughter. What a blessing. Everyday with Jacob is a miracle, God is so good!

Somebody has discovered their tongue...

Sweet Jackson...he's thinking..."Why won't anyone play with me anymore?"

Jacob is beginning to bring alot of things to his mouth...here's proof!

Sorry this one's sideways...I couldn't figure out how to change it. Any help, fellow bloggers?

Our smiley boy in his first Mickey Shirt. Thanks Uncle Biggie and Jill for the cool Tee.

Gramma Tuley reading a book to Jacob in his room. He loves story time!

Thanks for checking in on us. Jacob is doing well at home. Doctors may want Jacob to stay on oxygen for a while. We have another echo on July 24th to see if his pulmonary hypertension has improved. They want him to stay on 02 until then for sure, but most likely they will want him to remain on it until the next cold and flu season is over (April 2010). It's a little cumbersome at times, but if it's what Jacob needs, then we can handle it!

Have a great day! May you be blessed!

Going home again!

Well, it looks like we're going home...but this time we will have oxygen. Jacob's pulmonary hypertension increased enough that he just can't keep his saturation levels high enough on his own right now. We don't know how long Jacob will need the extra O2, but as long as we get to go home, we're okay with a little oxygen to help him recover. They also have increased one of his medicines to help with his pulmonary hypertension. Maybe between those two things he can be back to normal. It may be a couple months, or it may be longer. Jacob will lead the way, he always has!

Please continue to pray that Jacob will be able to wean off the oxygen when we are home and we can get him back to breathing room air again soon.

Here's a picture of our little man last night after a bath. He had WILD HAIR and has some chunky cheeks! He's a whopping 14 pounds! WOW!

We want to go home....but...

Jacob just won't let go of the oxygen!

We have been hovering around half a liter of oxygen for a couple of days and every time they try to ween down his flow, he drops his sats to the mid 80's and we have to come back up on his flow of oxygen.Once he's got his half liter, his sats immediately go back to 96-100. This is the only thing keeping us here at the hospital, and since he came in without oxygen, they want him to go home without oxygen. So...we are still here at VCH.

Please pray that Jacob will begin to ween off the oxygen! Thanks for checking in on us!

Moving on up...

Thank you for the prayers, calls, texts, and emails voicing concerns about Jacob. He has made great progress in the past day. They put him on nasal cannula yesterday morning and have been weening his oxygen. He is currently on 1 liter of O2 and about to go to a half liter. He has been getting full feeds for about 36 hours and his saturation levels and breathing rates have all been stable. He snuggled with Julie this morning and fell asleep while being rocked in a glider. He's been giving out smiles, and playing with a few toys we brought from home. We have orders from the doctors to move from the PICU to a regular room (one with a bathroom and shower, thank goodness!) and as soon as a room is available we will be moved upstairs to "the floor." Apparently, they call the regular rooms, "The Floor" here are VCH. We've been here so much that we're learning the lingo! Jacob needs to come off oxygen and finish some antibiotics before we can head back home.

Basically, Jacob's lungs just needed some help while his body fought off the infection. Once he gets stronger and older we shouldn't have to be hospitalized when he gets sick. I guess no matter how careful we are being at home, he is still so susceptible to illness. Thanks for checking in on us.

Here's a picture of Jacob asleep on the boppy on Julie's lap this morning. He was so content!

Update on Jacob

So far, Jacob has been making good progress and beginning to act like himself again. They have weaned his Vapotherm to 5 liters already, and expect him to be breathing on his own within a few days. We have even been able to get a few smiles from him today. He is resting well and regaining his strength. The plan from the doctors is to continue to wean his Vapotherm and give his lungs the support they need while his body fights off the viral infection. In addition, they have increased his medicine to help his pulmonary hypertension.

Jacob's immune system is not the same as a normal infant his age. Any kind of infection, fever, cold, virus, etc. can cause him to work harder to breathe and can likely cause us to be hospitalized. Thankfully, it won't always be like this...just for the first year of his life, until his body can learn to fight off the infections better.

Thanks for the prayers. Please continue to pray that Jacob's recovery is quick, that his body will fight off the viral infection, and that he will be breathing on his own again soon. Thanks for checking in on us!

Back at VCH

This is one post that we didn't want to have to make so soon...Jacob had to be admitted to the Pediatric ICU at Vanderbilt Children's Hospital early Monday morning.

A week ago we went to the pediatric clinic because he was grunting and breathing more heavily. We wanted to check his saturation levels and make sure he was breathing okay. They said that his airways sounded clear and he was satting 97. So we left and went home. Throughout the week we had a couple other follow-up appointments with different specialist and no one identified an issue. Jacob continued to grunt more and was not acting like himself. We went to the ER early yesterday morning and he was having some severe respiratory distress. He was satting in the 70's and they said that his left lung did not sound good. We thought, GREAT...that's the one good lung he has...

They were able to stablize him in the ER and moved us to the PICU within a few hours. He is breathing with help of Vapotherm (8 liters), which has started to be weened and they said that he possibly has a viral infection that caused his pulmonary hypertension to elevate, causing him to struggle with his breathing. We don't know how long we'll be here or what the doctors plans are. Please pray that this will be a short stay and that Jacob can bounce back quickly!

New Toy and some "High Flyin" Fun

Many of you have been asking..."How does Jackson do with Jacob?" Well, this picture could give you an answer. He's doing great! The germ phobe in me cleaned him off after taking the picture...but you get the idea. Most of the day Jackson lays somewhere near Jacob and me, then occasionally he sniffs him too. When Jacob is napping and wakes up crying or needing his paci, Jackson's ears perk up and he looks at me, like, "What are you going to do, Mom?" and we both go into the room to check on Jacob. Of course Jackson makes it there before I do, but at least the crib is high enough so Jackson can't reach. Ha Ha Ha!


This is the NEW TOY. Thank you Sheri and Jackie for the Baby Einstein Jumper...it's great! Jacob can sit in it (with lots of blankets wrapped around him) and enjoy the flashing lights and bright colors. When he gets older, he'll be able to move himself around and actually "jump" more. Although, he did enjoy it enough to get worn out!
This is how he started out in the jumper.
Then he went to this...

Within about 10 minutes he looked like this! Quite the progression...
Some of you may not know this, but Jeff actually built the helicopter in this picture. He did it in the months before Jacob was born. We took it out for some high flyin fun on Sunday.

Jeff's brother Jon, and his wife Jenny (Buh and Benny) came up for the weekend to spend some time with Jacob. They played with him and were all smiles all weekend.

Jacob loved being held by his Uncle Buh!

Aunt Benny (Jenny) was so happy...this was her first time to hold Jacob. What a treat for Jacob!

This is Jacob enjoying some tummy time on the floor. Usually he doesn't like being on his tummy and cries until you turn him over. But, this was one time when he didn't seem to mind. His little train book helped distract him maybe. :)

Please continue to pray, as so many of you are, for Jacob's progress. At the doctor's office today Jacob weighed a whopping 13 pounds 3 ounces. He's still in the 10th percentile, but gaining. Doctors have said that he will grow more lung tissue within the first 8 years of his life and Jacob could be breathing normally in a year. That was great news for us! Developmentally he still needs to get stronger, but he's not too far behind. Thanks for checking in on us.

Many blessings to you!

4 months old!!!

It's hard to believe that four months ago we were in the operating room, awaiting the arrival of Jacob Elliot Tuley. These past 4 months have been filled with many different emotions. Today (and most days really), we're filled with awe and wonder at our God and the Love that he gave us through Jacob. What a blessing. Jacob is a gift from God and we'll always be grateful for the miracle of Life that he is!

Jacob is amazed with his hands these days. He looks at them like they are the most intriguing things ever!

Here's a picture of three generations of JETs. This was the first time that Dad Tuley was able to hold Jacob, and hadn't seen him since after his second surgery. Needless to say, he was enamored.

Thanks to our friend Ryan and her family, Jacob has an activity mat...he LOVES it. He is reaching and grabbing all the animals hanging from the top. He especially loves looking at himself in the mirror...

Thank you for the continued prayers. Many of you continue to keep praying for Jacob, for health, for growth of right lung, for development, etc. We are humbled every day by the many many lives that have been touched through Jacob and by the numbers of people that tell us how they have followed his journey. May God always be glorified for the work that was done in Jacob's life.

Routine

Update on Jacob:

He's doing really good at home. We have finally found a routine that works for him. He wakes each morning around 6:30 needing a diaper change, and then sleeps again until 8. He wakes up and we play for around an hour. He eats at 9, and goes down for a small nap around 10. That nap only lasts around 30-40 minutes. He's up and ready to play some more by about 10:45. Then he eats again at 12, and by 12:30, he's down for a nice LONG nap. Sometimes he sleeps until 2:30 or 3:00. WOW. We're loving that! Then he eats again, and plays for the rest of the evening. Sometimes we give him a bath before bedtime, which is about 8:30 or 9. He sleeps almost through the night, which is so nice. We hesitate to even write this because Jacob never follows rules (he makes his own), but hopefully this routine will stick.

We have a visit tomorrow (Wednesday) with Tennessee Early Intervention to see what kind of services Jacob will need to get him caught up with his development. He's getting stronger and stronger each day. Pray that it goes well.

Here's some pictures of the past few days. Enjoy!

Jeff, Jackson, and Jacob ready for our first walk together...Jackson was so excited he was twirling around and around.

Jacob fell asleep after the walk. Aparently he didn't seem to mind the great outdoors.

Jacob and Julie after the walk. Also, did you notice the yard in the background? Thank you to the SonSeekers class at church for coordinating care for our yard while we were in the hospital. It looks GREAT!

Jacob has discovered his hands more and more. When he doesn't have a pacifier, you'll see him putting his whole hand in his mouth. It's cute, and so is the outfit...

I had to get a picture of this...Jacob and Jackson together. Aww...

Jeff and Jacob trying out the infant carrier.

May you be blessed today!