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!

Our first week at home!

Many of you are asking for another post...here you go!

Our first night was rough, only because WE didn't really sleep AT ALL! Jacob slept fine, in fact, he loves sleeping at home. I think it's the first time we have seen him rest so peacefully. However, we have been waking up with every sound, every smack of the lips, every sneeze, cough, etc. Occasionally we have checked to make sure he was still breathing. People say that this is totally normal when you bring a baby home. Because we spent so much time at the hospital with Jacob on the monitors, we have found ourselves wondering at times what his heart rate is, or what his saturation is. For so long Jacob was "sick" and we were so cautious when doing normal things with him like holding him and interacting with him. But, being away from the monitors at the hospital has given us such a freedom. Now, we get to do all those things and not have "numbers." We can just be parents loving on our son!

We had our first visit to our pediatrician today, and Jacob weighs 12 pounds 4 ounces! YAY! He is gaining weight! He is a little more than 26 inches long. So, for his height, he is in the 95th percentile...but his weight...its closer to the 10th percentile. We need to chub up!

Please continue to pray for Jacob. It has been amazing to share our prayer requests and see them being answered one right after the other. We need to get better and better with feeds and gain more and more weight. Also, because we were in the hospital for so long (101 days) Jacob has some catching up to do in his development. Pray that we can make leaps and bounds in the next few months.

Here's some pictures. Enjoy!

This is how Jacob always sleeps...both arms up above his head.

I promise, he does more than just sleep.

In Dad's arms, just before bath time!

In Mom's arms, just after a bath. :)Jackson is VERY curious about Jacob. He loves to sniff him anywhere we'll let him. He's being a good big brother!

Thanks to Gramma Tuley for coming and helping us during the first week. We couldn't have done it without her! As you can see, she's having a great time too!

Like Father, Like Son...

Jacob in his swing (yes he's on top of the table...we didn't keep him there for long)

Jacob practicing sitting like a big boy in his Bumbo seat. He's working really hard to keep his head up...

...and this would be Jacob getting tired of having to hold his head up... Don't worry, we rescued him very soon after taking the picture.

The staff at Cole gave us a beautiful baby shower, hosted by the 4th grade team (thanks ladies). It was outside in the gazebo at school. After 7 years at Cole, it was such a blessing to be able to share this journey with them. Thank you for the shower...and also for your prayers and support. They mean more to us than you'll ever know.

May you be blessed today!

Our favorite four letter word...HOME

There are many four letter words in our language that have deep meaning; love, hope, or life come to mind quickly. But for us, HOME has become our favorite four letter word. Today, we were able to bring our son Jacob home. That's right, home. It felt so surreal as we were sitting in the hospital room this afternoon waiting to be discharged. The room was filled with laughter and tears as the nurses and doctors all came by to visit Jacob and wish him well. We were snapping pictures left and right, grinning from ear to ear, as we held our son totally free from all wires and monitors. We prayed with our primary nurse just before it was time to walk out the doors of our NICU room, and we praised God for how far He brought Jacob. We walked down the hallway toward the doors to exit the hospital, with Jacob in our arms, and tears filled our eyes and joy filled our hearts.

We are so blessed. Great is our God!

Jacob was not supposed to be here...he was not supposed to be able to breathe...he was not supposed to come home from the hospital. For months we looked at an empty room in our house with such pain and agony. We trained ourselves to look away from the empty walls each day as we passed by the room. It was a room that was never supposed to be filled. We felt as though our family would have to live incomplete without Jacob. Today, for the first time, we are a complete family. Today, not only is that room filled with all things Jacob, but our home and hearts are filled with an overwhelming sense of...

We are so blessed. Great is our God!


Here are some pictures of our glorious day. May you be blessed by what you see and hear and may God be the one to receive Glory for how He has worked through many people to bring Jacob home with us.

The Empty Room

Jacob's room, ready for his arrival!

Jeff, Jacob, and Julie sporting our Vanderbilt attire to leave the hospital. If we weren't Vandy fans before, we are now!

Isn't he the cutest!

Yes...we know...the shoes are too big!

Leaving our room...

Walking out of the hospital...

We're free!!!

Jacob's first car ride!

We're so happy!

Our complete family...thank you for the prayers!

Now that we are home, please help us to stick to Doctors' orders...we can only have family visitors at this time. As much as we want you all to see Jacob, the doctors have asked us to protect him from public places and visitors for at least 6 weeks. We are not allowed to have Jacob around other children for a while, since they usually carry alot of germs. Also, once we are in public, please don't be offended if we do not let you touch or hold him. Jacob is still VERY susceptible to illness, and his lungs are still developing. If he gets sick, it would likely be more serious than the average child.

Thank you again for the continued prayers for Jacob. We are forever grateful.

A Boy and his Dog...

The doctors are telling us 3 WEEKS AND JACOB WILL BE COMING HOME!!!!!!!!!!!!!! We don't have an official "target" date, but they are beginning to get our discharge information ready. YAY!!!!!!!!!!!!!! Praise God that we get to bring him home! We will be ready (as ready as we can be) and Jackson will be waiting...

See...even Jackson says he is ready for Jacob to come home!

Jacob doesn't know it yet, but there's a bigger version of that puppy dog waiting for him at home. Jacob will just stare at his "Jackson" and smile. He sometimes tries to reach out and touch him too. His "Jackson" watches over him just like the real one at home will soon.

On another note, Jacob is doing well without oxygen and nasal cannula. His breathing is still fast, but its normal for him and that will slow down as he grows more lung and gets older. His oxygen saturation (the amount of oxygen getting to the brain and body) is always in the 90's. (Normal ranges are 92-100%) The doctors told me that we need his sats to remain above 92 all the time. If he dips below that they will want him to go home on oxygen. Just the thought that we get to bring him home is wonderful, but it would be miraculous if he could come home without oxygen. We're praying that in the next couple of weeks Jacob will continue to sat above 92, so that we can bring him home without respiratory support. That would be God at work!!!

Have a blessed day today!

What's missing from these pictures???

What's missing???

Is there something missing???

What's missing you ask???

OXYGEN AND NASAL CANNULA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Today was a monumental day for Jacob Elliot Tuley, our miracle child. This is the first day of (hopefully the rest of...) Jacob's life that he is breathing all on his own. Words can not express the feelings that Jeff and I had this morning as the doctors said that they wanted to give Jacob a try of breathing on his own. For over 5 months of our pregnancy we grieved and prepared ourselves as best we could for what the doctors had told us at our 20 week ultrasound, that Jacob would never be able to breathe. We spent nights in the NICU holding our breath, "living on the edge" and not knowing if Jacob would ever make it through. We told ourselves time and time again that we didn't think God was going to give us our miracle, not that He couldn't, but we just didn't want to get our hopes up. And yet here we are, by the grace of God, watching Jacob breathe without ANY support. It is with such joyful tears that we say, God is giving us the "glorious impossible!"


Please pray for Jacob, that God will breathe into him and give Jacob the strength he needs to continue breathing without support. Early on, when Jacob was very critical the doctors said, "IF you go home, you'll go home with oxygen." How we would love to prove them wrong! Go Jacob, Go.


We ask God to shower blessing after blessing on all of you for earnestly praying for Jacob's recovery. It is without a doubt the reason we are still here. It is our prayer that you have become closer to God through this journey, that you have seen God at work , and that your relationship with the Almighty will only become stronger. Glory to God for he is good!


P.S. Thanks to Cousin Stacy for making the AWESOME blue crocheted blanket for Jacob (in the pictures above). Stacy, that's amazing work! We love you!

Goodbye Vapotherm...

Jacob has come off Vapotherm! He still gets some respiratory support through a nasal cannula, but it's minimal. In fact, he is on 1 liter of flow and 21% oxygen (room air is 21% oxygen, so he is only getting the extra flow). AWESOME!!! The doctors all grinned today in rounds when the doctor (resident) read Jacob's report about his respiratory support. Jacob's doctor said, "Jacob is doing phenomenal! He really is a miracle kid!" The next steps for his respiratory support is to ween the flow of oxygen until he comes off completely. That's what we're praying for!

Jacob is still tolerating full feeds, but hasn't gained enough weight this week. The doctors want to see a steady amount of weight gain each day and Jacob isn't doing that. One reason is that he works harder to breathe than most of us do. His respiratory rate is higher than a normal infant, so he's burning a lot of calories just to breathe. He's taking full feeds, but he's using all the calories. They are increasing his volume and calories today to see if that will help. We need to pray that Jacob can "wow" the doctors once more and gain, gain, gain.

Please keep praying that Jacob will ween off oxygen completely and gain weight steadily. Thanks again to all our prayer warriors for hanging in there with us. God hears our cries for Jacob and is blessing us with being able to witness his hands at work. What an amazing journey we are on!

Also, please keep Kaden Kuehl's family in your prayers. Kaden is another CDH baby that we have been following through another blog. He passed away yesterday.

May you be blessed today!