A couple of videos

These videos are probably much more interesting to us, but nevertheless, here's some entertainment for you!

This video is Jacob crawling through the dining room. He loves to crawl through the table to the window and he loves to get Jackson's bowl. In this video he clearly chose which one was his favorite! After he makes his choice, notice his slight smile despite the pacifier in his mouth...

This video was taken today. After months and months of trying to get Jacob to say this word...he finally said it today while Jeff was at work. YAY!!!!!!!!!!!! BUT...What was even cuter was today when Jeff got home Jacob went into his arms and said, "ai dada" as if he'd known it all along. So, we're officially saying that Jacob has said, "Hi dada."

Have a wonderful day!!!

Sleep Study Results

We finally got the results of the sleep study... Jacob's sats are within normal limits while sleeping without oxygen. Yay! They monitored for many other things while Jacob was sleeping, like brain activity, respiration, breathing patterns, snoring, body movement, heart rate, etc. There were over 30 different probes and wires attached to him. Poor Guy. It was a little traumatic...but the results are all normal. Awesome!



So...this means that we are going to trial him off the oxygen completely, even at night, and see how he does. So we could use prayers for the next few weeks that Jacob stays strong, breathes easy, and that his sats stay up. Then on May 21st, Jacob will get an ECHO to see if things still look normal. We still have the sat monitor and oxygen if we need it, but let's hope this is the end of the oxygen for good!!!! (it's packed away in another room already)



Here's a picture of Jacob the morning after the sleep study. He was so mad when probes were being placed and when woken up at 5:30 in the morning, but was especially mad when the probes were being removed. It was traumatic to say the least.



Thanks for your prayers and well wishes. Jacob is such a blessing and miracle. It's amazing to be able to witness God at work through him. We're honored that God would allow us to be his parents. Have a great day!

Please Pray

Dear friends and Jacob fans,

Jacob is doing great. Today I am asking that you pray for the Huffman Family. I went to Pepperdine with Cass and Alex and today they are having a baby girl, Noah Autumn, that was diagnosed with HLHS. It is a congenital heart defect that requires 3 surgeries with no guarantees of how long the child will live. Their baby girl will be in the NICU like Jacob was. Their blog is http://www.cassandalex.blogspot.com/ and you can read about their journey. They live in Germany. Please take some time today to pray for them, that God will also give them the glorious impossible!

Many Blessings,

Julie

DC-3

This weekend, Jeff, Jacob and I drove to Shelbyville, TN to see the American Airlines DC-3 Flagship Detroit. Why is this so interesting??? Well, Jeff's grandfather, Poppy, flew planes like this for American Airlines after serving in World War II. Here's some pictures of our day with the DC-3. It's hard to believe that was almost 70 years ago.

They were doing a little work on the engines and cleaning up the inside when we were there, but they let us look around and even go inside.

Jacob acting like a gentleman in the passengers' seats. What a happy guy!

This week has been quite an adventure with Jacob. He spent the week crawling all over the house and working his way through all the rooms. Yesterday he was crawling over to the window in the dining room and we stepped into the kitchen for a second, and when we turned back, he was STANDING at the windowsill. Since then, we've seen him pull to stand twice, but have not caught it on video just yet. Wow...what a blessing!

Hope you are having a wonderful day. Thanks for checking in with us.

Too Cute!!!

These pictures were taken 2 Sundays ago by Russ Corley during our Small Group. This was before we got the OK to come off oxygen, but they were just too cute, so I had to post. Thanks Russ for the great pics.

On another note, since deciding to crawl last week, Jacob has found a new freedom, and LOVES to be mobile. He's going all over the house, crawling in every room, and so happy to be on the move. It's such a blessing. Thanks for all the prayers. I'll try to post a video of him crawling later in the week. Still haven't heard about the sleep study, so we're keeping our fingers crossed that we hear something soon! Have a wonderful day!

What we all want to know........

Well...it's official. After some discussion today with Jacob's pulmonologist...



Jacob can come off oxygen during the day!

YYYYAAAAAAYYYYY!!!!!!!!!




However, the results for the sleep study are not completed yet (insert a BIG BOO here). Therefore, we don't know how he did at night without oxygen. SO....that means for the next two weeks we monitor him at home without oxygen during the day and see how he's doing. Then, if we don't have any concerns, and the sleep study results are good, then Jacob can come off at night too.




We're so proud of our little man! Thanks for the prayers. We will update with the results of the sleep study as soon as we know them! I'll leave you with another cute pic from Easter. I love how he's contemplating which flower he'll get next!

On the Move

We got this video of Jacob today...it looks like all the hard work has finally paid off and Jacob is officially mobile! What a blessing to be at this point of life with Jacob. (insert big proud parent smile here!)

Thanks for checking in with us. Have an AMAZING day!

Not much to report...

We don't have any results from the sleep study yet, and we don't really have any news to report on Jacob developmentally...so here's some pictures of our big guy from the past few weeks. He's growing up so fast!

These next few pics are of Jacob in an authentic Vietnamese outfit. This was purchased by a friend of Gramma Tuley while she was traveling in Vietnam and given to Jacob. They did great picking a size that would fit. He looked precious! Thank you so much!!!

Our cool guy! Although the sunglasses didn't stay on too long!

I love this picture of Jacob reading with Jeff. He LOVES books!

Always reaching for the books!

More reading...and reading...and reading!

Thanks for checking in with us this week. As soon as we have more information on the sleep study, we'll post it! Have a blessed day!

Easter 2010

Many are asking....and no, we haven't been given the word yet from the doctor about the oxygen, but we did take it off for the pictures. We figured that if it comes off all the time at night and the sat monitor never goes off...then he's probably okay for a photoshoot! :) He looks like a different kid though, doesn't he?

CDH Awareness Day

March 31st is Congenital Diaphragmatic Hernia (CDH) Awareness Day. In honor of Jacob's story, and all the families affected by CDH every day, we hosted a Bar-B-Que at our house. We asked our guests to bring blankets or preemie/newborn outfits for the NICU at Vanderbilt. It was a great success, and we had a wonderful time showing off our little miracle! :)

Thank you to all the people that came and donated. It was a special night for us!

Here's some pictures from the day. I don't have ANY during the party because I was too busy talking to people and getting food ready. Sorry! :)

The front yard...all set up!

The Centerpieces and just underneath you can see the labels I made with facts about CDH. I had them stuck to the tables around the centerpieces. Hope they read them! :)

The Boston Butt pork getting ready for the oven...

The cupcakes made by my friend Brooke/IceThis cakes.

And last, but not least, here's Jacob enjoying laughing at something that Jackson was doing. :) What a silly boy!

P.S. Our sleep study was moved to THIS FRIDAY night. So, pray it goes well!

14 Months!

Wow...another month gone...where did it go?



Our Big Guy is growing so much lately. We haven't had any recent measurements, so we don't know how much he weighs or how long he is...but I'm sure he's getting bigger, because he's HEAVY!!!! He "understands" more and more each day and we're having so much fun with him. We can tell him to push his arm through his sleeve, and he does it. We tell him to cough, and he does it. We ask him to give something to us, and he does. :) It's amazing how quickly they learn!



He LOVES books (especially getting them off the shelf above his changing table). He likes grabbing and playing with cords of all kinds (especially his oxygen tube). He also enjoys opening cabinets, throwing, and chewing on anything.



Lately, he has started "hugging" us. He will be playing, and then turn to us and wrap his arms around us. It's precious! :) MELT.MY.HEART! I hope that skill doesn't go away anytime soon. :)



He is down to one nap a day, about 2 hours. But the magical part is that he sleeps through the night, from 8PM to about 8AM. We have no advice to hand out on that part, other than the night nurses in the NICU getting him on that schedule....one of the PERKS we got from staying in the hospital. I guess it had many benefits for us! :)



We can't believe how much he's changing and how much we smile when we're around him. He's an amazing kid and we're thankful to God for every day that we have with him.



Here's some pictures from the week. We went on a walk this week and enjoyed the warmer weather. Also, since Baseball season (Spring Training) has begun, we thought we'd sport a Cardinals hat. He kept it on the entire walk until we got home in the garage...then he began to take it off. Funny!



Jacob also loves to get into things right when you turn your back for a second. Anyone else have this problem???? :) I had left him for literally 30 seconds and forgot to move things out of his reach. SO...he got the yogurt container and WENT TO TOWN on the yogurt. We had yogurt everywhere! And he was pretty happy about it! :)


Thanks for checking in with us today. Remember: While we are celebrating Jacob's amazing story and enjoying him now, there are many children currently fighting for their lives in NICUs all around the country and many that are preparing for a long stay in the NICU because of similar congenital problems. Stop for a second and say a prayer for the many families whose lives are affected this way. Count your blessings daily!

Cabinets! Who knew?

Who knew that cabinets could be so much fun! Jacob discovered how to open and close the cabinets the other day while in the kitchen. His little tongue was out and his fingers were working hard at his new skill. :)

Check out the smile on his face and the crossed ankles. He's so CUTE!

Just a quick update on Jacob: He's doing well. He's able to get from the sitting position to the crawling position, and can rock back and forth on his hands and knees. He's pretty close to crawling...by pretty close, I mean that I think it will be a month, but that's closer than he has ever been. :) He's been pulling his oxygen off his face more and more lately. I think he's telling us that he doesn't need it. Yay! We go in for our sleep study on April 9th, and we'll find out shortly after that about what we can do with the oxygen.

Jacob has a few cute things he's doing lately. When he gets really excited about something, he will squeeze his hands into really tight fists and tighten every muscle in his body with a smile on his face. It's pretty funny. Also, he has begun to put his bottom lip up over his top lip and shake his head. Then there's also the crossing of the ankles. He does this all the time.

On another note, Jacob has been having really bad separation anxiety lately. Sometimes I can't even leave the room to put laundry away or else he begins screaming. We're in trouble!!!

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

Date Nights...

That's right. It's official. We have turned a new leaf, and left Jacob for not ONE, but TWO date nights. Our first date since bringing Jacob home from the hospital was spent getting dinner at Longhorn Steakhouse and seeing the movie Avatar in 3D. We were lucky enough to have one of Jacob's primary nurses offer to play with Jacob while we went "out on the town!" Thank you so much Yvonne! We love you!



Here's our attempt at being silly...

Our second date was spent in Atlanta, GA attending a Michael Buble concert. Oh....what a night! Our seats were on the floor in the back, and we loved every minute of the entertainment. We left Jacob with Uncle Biggie and Aunt Jenny (Jon had to go out of town). Thanks so much for watching your nephew! He had a blast! (more on that later)

Here's a picture of the stage as we wait for his entrance.

This is a picture of Michael Buble entertaining the masses with his amazing voice and good sense of humor.

AND.....since we had seats on the floor....we were able to get this picture when he came out into the crowd and stood on another stage in the middle of the floor. We left our seats to get these close up images. He was literally 20 feet away. :) Yay!

But....one question you might have in regards to this post is...."How did Jacob do while you were gone?"

Well...apparently, Jacob knows the difference between "Dad and Mom," and "babysitters" and is not afraid to push the limits. As I type this post, Jacob is sleeping peacefully, as he always does every night starting at 8:00PM. However, for his babysitters, Jacob does not think that sleep is such a good idea! :) Rather than sleep, he wants to kick his feet all around to make the SAT monitor alarm non-stop, and while he's at it, he tries to pull on the cord so that it comes completely loose. Also, instead of staying on his back and falling right to sleep, he decides to do some pelvic thrusting (sorry no video of that one) and rolling around in his crib while singing and talking to himself. Of course, when the babysitters go into the bedroom to silence the alarm, they look at Jacob, and what does he do....place a HUGE grin on his face and laugh. It's almost as though he was saying....I know I am winning!!!!!! :) What a goof!

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

Look at that tongue!

I think he's gonna be a great reader!

Jacob is really making some progress in his strength building and mobility. He's not quite strong enough to move while in the crawling position, but if we hold up his chest or rear end, he sees the potential and will turn toward whatever it is that he wants. Our PT says that by holding him up, it's allowing him to be mobile and helping him with the skills he needs while he's still building his strength. He's also begun to try to pull himself up in his crib, on furniture, etc. He can't get all the way up on his own, but he gets to his knee, and then straightens out his other leg. This is what it looks like...

We're so proud of our little miracle! :) Every milestone reached makes us more and more sure that God is keeping Jacob in the palm of His hand and he WILL catch up completely. Jacob has always done things his way, so why would he stop now...

This is a really short video of Jacob getting out of the sitting position to his belly. He's doing this more and more lately, and sometimes he will land on his knees in the crawling position and then go down to his belly. It's all GREAT progress! He can also go from laying on his side, to sitting up unassisted, but no video of that just yet.

Have a wonderful day! Thanks for checking in with us and for your continued prayers.

For Thomas and Marcus

Thanks for the great Superman onesie. Although, not sure if it means the Amazing Jacob is being trained by Superman, or Superman is being trained by The Amazing Jacob! :)

Good Dogs!?!

No, we didn't get another dog... We've been dog sitting "Bella" for a few days and it's been really fun for Jacob, Jackson, and I think it's been fun for Bella. For the most part, Jacob just watches them walk/run around the house following each other. As I type this, believe it or not, they're all asleep. Jackson and Bella are laying beside me, and Jacob is asleep in his crib. Wow, this is peaceful! Here's a few pictures with my captions for added effect!

Jacob says, "Wait a minute, there's two?"

"Good Dog, Jackson!"

"Good Dog, Bella!"

"Now what are we going to do?"

As far as an update...Jacob had a doctors appointment yesterday that went fairly well. He got his 1 year shots (BOO) and an RSV shot (another BOO)! He didn't do to well with them this time...he was inconsolable for about 5-10 minutes and did not want to be put down. I've never seen his face get that RED!!! He is recovering, but has a fever and seems fussy, just normal stuff after shots. But, good news is that Jacob's lungs sound clear and he's growing really well. His height was a staggering 33 1/4 inches (99th percentile) and weight was 25 lbs even (72nd percentile). He continues to be long and lean, like his daddy! Good thing! :)

His development continues to make progress. He is getting stronger, it just seems slow to me because I work with him everyday. But, for people that only see him every so often, he seems to be doing something new all the time. He's standing well and finding his balance. He can pull himself up by holding onto our hands, but no pulling up on furniture yet (whew, thank you!). He rolls back and forth more and more, making sure to get whatever toy he desires. He continues to rotate around on his belly, and earlier this week he turned himself around, to see the television, while sitting on his bottom. Quite funny to watch actually. :) He can "take steps" while we hold him up, but sometimes he just picks both feet up and laughs. We "walk" up and down the hallway, stopping every 14 feet so we can bring the oxygen concentrator closer, then do it again. He laughs as Jackson tries to follow us. He bangs things together, moves constantly, uses fingers to poke things, and bounces his ball to Jackson and me. He plays "BONK" (we bonk heads together and laugh) and can give a high five. His "words" are still in the developing mode, but he jabbers alot, especially when a book is in his hands. He has gotten 3 of his 4 molars in the last week, and continues to put everything in his mouth.

Many people ask what the prognosis is for Jacob in the future... Once we catch up developmentally (by 2 or 3 yrs), the doctors say that Jacob will look like any other kid. The only things we have to worry about are re-herniating, respiratory illnesses, and possible bowel problems. Because Jacob's diaphragm was patched with gortex, the doctors will monitor when/if that patch comes loose. Many CDH kids have had as many as 4 or 5 re-herniations. So, we're on the look out for issues related to that. Also, because CDH kids have had their intestines in their chest, many times there are related issues with digestion, bowel problems, etc. So, we're not totally "free," but we're blessed so far by all the progress Jacob has made and continues to make.

Thanks for checking in with us. Have a blessed day! Ephesians 3:20-21.