Yay Progress!

Jacob continues to make amazing progress, thanks to prayers and the work that God is doing through the nurses and doctors. We truly believe that this journey has been about the verse that God showed us the day of Jacob's first surgery, ask and you shall recieve... God has given us so many blessings.

Jacob's report:

Jacob is on 2 liters of Vapotherm, this is remarkable! We were told that it would take "a while--like 1 or 2 months" for him to come down on his Vapotherm. A week ago Wednesday we were on 6 liters, and now we are on 2 liters. Go Jacob, Go! The doctors are really pleased with his progress on his respiratory support. He continues to tolerate full feeds and has been steadily putting on weight. He needs to gain weight and grow right lung.

Jacob and Dad...can you see the resemblence?

Here's a picture of Jacob as he is sleeping. I was playing with some of the features on our camera. How cool is this!

A couple of you have asked...YES, Jacob is already a Cardinals fan, not that he has a choice. Thanks to Jackie and John, friends of Jill, for his first Red Bird onesie! We're working on growing into it!

Have a wonderful blessed weekend and thanks for the prayers!

Family Time!

Gramma Tuley came up when Jacob came off the vent to help us out. This was one way we thanked her for all that she does for us! :) What a special treat for Jacob (and Gramma).

This is Uncle Buh and Aunt Benny (Jon and Jenny) spending the afternoon with Jacob. They read a book to him and laughed as he was learning how to turn his head.

Papa Bear and Gramma Jo came for Easter to spend time with Jacob. They had a great time watching his "numbers."

Papa Bear holding Jacob and reading a story to him.

What a precious face...

Update on Jacob:

We're doing well. Jacob is down to 3 liters on the Vapotherm. He's still eating and tolerating full feeds. He is almost 11 pounds, real weight. He had extra fluid weight earlier that he got rid of and now we are gaining real weight. We need him to continue in that direction to help grow more lung too. He still has alot of mucus in his chest that he is learning how to cough up and get rid of, but more prayers for that would be great too!

Thank you for continued prayers. Jacob continues to be evidence that God is working miracles.

Happy Easter!

What a blessing today has been for us. We attended church this morning, and while it was very hard to be away from Jacob, it was a much needed "recharge" for us. God has undoubtedly given us an amazing gift and we can't stop thanking God for honoring us with Jacob's life. He's such a MIRACLE...we could not list the number of miracles that have had to take place in Jacob's life for us to be where we are today. They are countless!

Jacob says, "Happy Easter!" He was all smiles today at the hospital and we were able to catch a good picture. Yay!

On Saturday night we gave Jacob a nice bath and got him dressed in his Easter outfit. He even has blankets to match. He conked out within minutes of getting cleaned up. At least we know how to get him to sleep!

We are up to full feeds...AWESOME! Jacob is getting 82ccs of milk every three hours, and loves every drop! Hopefully this will help his lung to grow the alveoli that he needs to come off the Vapotherm. We are currently on 4 liters of flow (down from 6) and 24% oxygen (room air is 21%). The doctors seem to think that coming off the Vapotherm will be our biggest challenge and may take a couple of months. But, when we come off Vapotherm, we're that much closer to taking Jacob HOME! Please pray that Jacob's lungs will grow beyond the doctors' expectations and that he will be able to come off Vapotherm sooner than expected. It would be one more miracle we can add to the list.

And last, but not least, a video of Jacob. On the first take, Jacob was right on cue. How often does that happen? The first few seconds are not that exciting, but keep watching!

May God bless you, as you have blessed us! Happy Easter!

The Pictures We Promised...

Jacob getting cleaned up. He's not so sure about bath time yet.

ALL CLEAN and in a big boy outfit. It says "Dog Gone Cute" on the front. :)

Out with the OLD...

In with the NEW!!!

Jacob in his new big boy bed looking at his monitor, it's the only "TV" he's ever seen. :)

Jacob admiring his new mobile. He loves looking at this thing. His eyes track as the animals spin around. He's amazed, can't you tell by the look on his face!

Just precious!

Jacob practicing sitting like a big boy. He's got NO muscle tone because he's been laying in bed for so long. So, we have to start working on his range of motion and holding his head up. He is starting to turn his head and look around. But he still looks funny all hunched over, like an old man! He's not so sure about this stuff either. :)

One week and counting...

Jacob has now been breathing without the ventilator for a week! WOW. It is so encouraging to look at our son and see his chest moving up and down all on his own, even if it is fast. Each day we continue to be a part of a living miracle. What a blessing.

Right now, Jacob has alot of mucus in his lungs that he tries to cough up, but can't get all of it out. This doesn't help his breathing... If he can get all those secretions out of his chest, then breathing may become a little easier for him. Please pray that Jacob will be able to cough up all the mucus in his chest so that he can begin to breathe easier and maybe less frequently.

As far as feeds go, Jacob is up to 43cc's, about half way to a full feed. Yay! His body is tolerating the increases and we have the dirty diapers to prove it. We never thought we'd be so happy about changing messy diapers. :) The doctors are going to double bump his feeds for the next few days to get him to full feeds; this means they will increase by 5 or 6 ccs two times a day, if he tolerates it. Please pray that Jacob will continue to move these through and that his body will tolerate these changes.

Thanks so much for the continued prayers. Keep them coming!

Pictures will come later (cause I know that's really what you all want to see...hee hee).

5 days and 24ccs

That's right, 5 days of Jacob breathing on his own (with the help of vapotherm) and up to 24 ccs of milk every three hours! YAY Jacob! YAY God!

We are so thankful for the progress that Jacob has made in the past few days and grateful to God for continuing to bless us with Jacob and his life. However, it has not been all peaches and cream for us in these past five days (we are in the NICU and riding the roller coaster, of course). Jacob's right lung is still small and underdeveloped, so he breathes faster than a normal infant would. Yesterday we noticed that his breathing had increased (80-90 times a minute) and his heart rate was up as well (180-190). They did an X-Ray and found that his right lung had partially collapsed. They turned up some of his support on Vapotherm for two hours and laid him on his left side for the night, so that his right lung would be up. Within 12 hours Jacob had recruited the right lung back to its original size (half the size of his left, still small). We're encouraged by this!

We need continued prayers that Jacob's right lung will get stronger and stronger as he grows and that we can stay away from the vent. Doctors have told us that a child's lungs can develop up to the age of 8, which means that Jacob could be able to breathe easier as he gets older, but we need to continue to recruit more and more lung on his right side. The little amount of right lung he has is amazing, considering that his ENTIRE LIVER was in his chest. Maybe one day we can show you x-rays from his birth to now...What a testimony that God can do miracles. But, we still ask for more.

We are doing better on feeds, but still a long way away from full feeds. We are up to 24ccs every three hours (a little less than an ounce). A full feed is 70-80ccs every three hours. Each day the doctors will increase his feeds by 5 or 6 ccs if Jacob does well. The faster we can get to full feeds, the sooner Jacob can come off the IV fluids. Keep praying, it's working! :)

Still Breathing...

So far, Jacob is still vent free! We have made it through two whole days and he still looks pretty comfortable. His lungs sound like they are exchanging gases well. At times he looks like he is breathing more frequently than normal, so we are keeping an eye on that. The last time we came off the vent Jacob was constantly working hard; breathing 80 times a minute on average without ever slowing down. A normal infant will breathe anywhere between 30-60 times in a minute, so that's what we're shooting/praying for!

As far as feeding is concerned, we have been making some improvements there too! Yay! Jacob is still getting 12cc's every three hours (it's less than half an ounce) but he is doing a much better job of moving the milk through. We have not had to skip a feed since Monday evening, this means that Jacob's stomach and intestines are beginning to wake up! We still have a long way to go, but it's a start. A full feeding is around 70cc's every three hours, but we're working on it! Thanks for the prayers...keep them coming!


I caught this picture today of Jacob, it's a semi-smile. But, I thought it was too cute with his hands up by his face. What a precious gift that God has given to us.

If at first you don't succeed...try again!

Jacob is on Vapotherm and breathing without the vent! PRAISE GOD!!!

The doctors made the decision this morning to give Jacob another shot at breathing on his own. Right now, he looks really good. He is not breathing too heavily, his heart rate is within normal ranges, and he looks comfortable. They are going to take an X-Ray and blood gas to make sure he is exchanging gases well and that he is not over or under inflated. We have to make it through a week before anyone will be sure that Jacob won't need the vent again, but I am hopeful today! He is so cute without a tape mustache! :)

Keep praying that Jacob will STAY OFF the vent this time and that his lungs will continue to function to the BEST of their ability. Pray that we won't get pneumonia again and that Jacob will be able to show everyone what he and God are made of!

Although we are still having feeding issues, and Jacob is not moving food through like the doctors would want, they feel confident that Jacob is moving in the right direction and will get there eventually with feeds. Here's some other pictures I took of him this morning before we came off the vent.

A couple more things to pray specifically for:

1) That Jacob will begin to swallow. He has not been swallowing his saliva and secretions, which if he throws those up, could cause us to aspirate again.

2) That Jacob's lungs will GO GO GO!!!

3) That he will move the milk through his body and begin going up on feeds.

Thank you so much for all the prayers. Thank you for hanging in there with us as we fight with Jacob for life! God is good!

Feeding frustrations

Feeding is a HUGE hurdle that we are trying to jump...and it seems like it will never end. It has been almost 4 weeks of feeding issues, and it still doesn't seem to be moving in the right direction. Jacob can't live on IV fluids...

Right now, Jacob is getting 12ccs of milk every 3 hours. They check his stomach to see how much he has moved through or digested, and if it is less than half a feeding, they feed more. If he has not moved milk through, then they hold the next feed until he has moved it through.

Jacob needs prayers that his stomach will digest the milk and move it to the intestines, that the intestines will wake up and give his body the nutrients it needs so we can get off the IV fluids, and that we can start increasing feeding amounts each day.

God created Jacob's body...and he is fearfully and wonderfully made.

Aww...how cute!

The past few days with Jacob have been really fun! He is having more and more time when he is awake and alert. We are getting to hold him more and interact with him too. Here's some pictures for you to enjoy.

Look at those precious eyes! These moments are the reasons why we continue to pray and ask God for more and more. What a gift!

I decorated our door with get well notes from a 4th Grade group of girls at Woodmont. Thanks Ruth for these special notes!

Beautiful hands!

Jeff holding Jacob and enjoying a joke or two with the nurses.

Our most recent familiy portrait

Jacob looking up at mommy.

Jacob's feeding issues are still hanging around...but...he is moving milk through his system (we have poop to prove it) and when he does spit up, it's more just the mucus from his stomach and not milk. This is improvement! We think part of the problem is that he has a tube down his throat, which gags him, and makes him spit up. So we're praying for more progress in that area and hopeful that we can come off the vent again soon. We can't come off the vent until the doctors are confident that he won't spit up and aspirate.

On another note...since we have moved into our new room, there have been 3 different families admitted to the room across from us, then discharged and sent home. I am wondering if we missed our calling and picked the wrong room. :)

More Information

I know many of you are checking the blog for updates...so here's some more information for you all!

Jacob is doing well on the ventilator. He is on minimal settings and doing all the breathing on his own, the vent just provides the oxygen and some extra pressure. His right lung is looking better and better (to us) but we are still not sure just how much "quality" of lung he has on that side. It is definately way more than they ever thought he had. Which is a miracle, undoubtedly! He is almost done with his antibiotics and the infections are gone. Thank goodness. Jacob is still having feeding issues and spitting up whenever he is moved. This poses a problem because when he spits up, it increases the chances of him aspirating. The doctors seem to think that Jacob aspirated after coming off the vent the first time, which caused him to get pneumonia. So, they want to get our feeding issues resolved before coming off the vent again, so we won't have those problems again.

We definately appreciate all the prayers for us and Jacob. Please hang in there with us...Jacob is making progress! Here's some specific things to pray for:

1) Continue to pray that the next time we come off the vent (hopefully soon), that Jacob will do amazing and not have to go back on!

2) Pray that our feeding issues will be resolved soon, that Jacob's body will tolerate his feedings, and that he can begin to get all of his nutrition from milk.

3) We would love to see more and more right lung growing and getting stronger. God has already given us more than we ever thought we had, but we humbly ask for more.

We tell Jacob every day that he is a miracle, and that he is only here because of all the prayers being lifted up for him daily! Thank you for making our Miracle possible. God is so good!

Updates and BATH TIME

First of all, Jacob would like to say

Happy St. Patrick's Day

to all of you!

Since the last update, Jacob has been progressively getting better. With the help of some antibiotics, Jacob is fighting off some infections. He had cultures done of his blood and trachea. Most of the infections are gone, but we have a couple more days worth of antibiotics to make sure they are completely gone. He is still on the ventilator, but his settings are minimal, and he is doing all the breathing on his own, the vent just provides the air and pressure. That is a good thing! Jacob is still having some feeding issues, and has been spitting up alot more lately. The doctors say that most CDH babies have problems with digestion because their digestive organs have been altered after surgery. We are hopeful that Jacob will make progress with his feeding very soon! The doctors are saying that the progress we are making are steps that will lead us closer to HOME. It's just taking time.

Jacob says, "Yay for progress!"

On Sunday night Jacob got a good BATH. It's not like a normal bath, it's more like a sponge/gauze bath, but we got to use some baby soap and lotion to make him nice and clean and smelling like a baby. It was so much fun for us. Jacob liked it most of the time. Here's some photos of the occasion.

We had to scrub his head really good. He liked that part alot.

I think this was his favorite part though, he liked the massage!

And once he was done, he got to put a big boy shirt on and he rested SO SO SO well.

I am beginning to love looking at these!

What precious moments we've had lately; despite having to go back on the vent and fight infections. We are so hopeful that Jacob will continue to fight with God's strength! Keep praying for us, that we can come off the vent again and that Jacob will tolerate his feedings better and move milk through his system.

Bummer...

As we were getting ready to go to the hospital on Monday morning, we received a call that Jacob needed to be put back on the vent. Basically, the doctors and nurses think that he got tired from having to work so hard to breathe, and also that he may have aspirated or has pneumonia. It was like he was running a marathon for 3 days...with a small right lung and possible infection. They have run some tests on him to see if there's an infection and are treating him with some antibiotics. Of course, we were very disappointed. It felt like the wind had been taken out of our sails. This is very common for babies to have to go back on the vent after being taken off, and it doesn't mean that Jacob can't do it. It just means that we have to give him a break and try again when he's ready. We don't know if that means a week or more, but he's ready, we will be too. Jacob has always led the way, and we trust that God has plans for us and Jacob. Please continue to pray for strength for us and Jacob.

But...God is good. God has been faithful. God has brought us this far. We need to be reminded of just how far God's grace has extended. Here's a picture of Jacob the night he was born; 6 pounds 13 ounces, with a liver in his chest and no hope of having a right lung. And the other picture of Jacob just days ago, 9 pounds 6 ounces, repaired and when he was breathing on his own, something we thought we would never see. God is good and does not give up on his children!

Many of you are asking whether we need anything. We are doing good. We have food brought to us every other day (thank you), and since we are rarely at the house, it stays clean! When we have a need, we will let you know! May you be blessed today!

Go, Jacob Go!

As of Friday morning at 10:00, Jacob has been breathing without a ventilator! What an exciting moment for us to witness. What a blessing to be a part of a miracle. Truly, God has smiled on us and been gracious to us!

Jacob has never been as responsible for his life as he will be from this point on. His diapragm has to contract more and his muscles have to lift his chest more. He has to work harder than he has ever had to work before. This is a BIG hump/hurdle on this journey with Jacob. He still has some support through a nasal canula from a machine called Vapotherm. It provides oxygen and pressure so that when Jacob takes breaths, it keeps his lungs inflated and gives them the support they still need. But, if we can make it through the next few days, then we have made great progress.

Here are some pictures for you to enjoy!

Jeff with Jacob before they take out the tube.

Jacob, after taking out the big breathing tube.

He still has a tape mustache from the feeding tubes, the yellow and orange tubes, but his throat is finally FREE!

Removing the ventilator...yay!

Jacob on his tummy. They say it's easier on the muscles that help him breathe because it gives him some support. The big white pad on his arm is also gone now and his left arm is free too.

Jacob and mommy spending some time together.

Thank you for your constant prayers for Jacob. He is SO strong; our God has breathed his breath into him and given him a fighting spirit. We are all witnessing the glorious impossible. What a way to share how God is still actively working among us! Please continue to bring Jacob before our God and ask that he continue to breathe and not become too tired from having to work so hard. Please also pray that his feeds can continue to increase and that Jacob will begin to move the milk more quickly through his system. This is a long process, thanks for hanging in there with us and continuing to pray. It may be a couple more months worth of praying, but Lord willing, it will be worth it!

Here's some pictures of our precious Jacob from this week. Progress seems slow at times, but in the right direction. God continues to bless us with every day with Jacob. Enjoy the pics!

More Tummy Time...

Julie and Jeff getting to hold Jacob.

Thank you to the nurses for making this possible for us.

CRAZY HAIR DAY!

Trying out a pacifier for the first time. I think he's trying to figure out how to suck on the pacifier with a huge tube in his mouth. Maybe we can get rid of that tube soon...

Please continue to pray that we can come off the ventilator and that Jacob will tolerate more feeds. We have seen so many miracles every day with Jacob, and continue to ask for more!