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!

It's been almost a week since we have updated the blog. We have moved to a room with a window. You know you've been in the NICU long enough when you start scoping out which "neighborhood" you want to move to. It's a very difficult desicion, especially when you have to consider loud neighbors, the quality of the schools, property values and taxes, etc. Hee Hee. The nurses and doctors continue to look out for the best care for Jacob. Several have fallen in love with him.

Here's the latest updates on Jacob's care:
Jacob is getting 5 ounces of milk a day, which by comparison is a small amount, but is part of the process to wake up his stomach and intestines. He is still on a conventional ventilator, but his settings are minimal and the doctors seem pleased. Our next steps are to increase feedings so that his body gets stronger and he can be on less IV fluids for nutrition. We also are going to decrease the amount of nitric Jacob gets in his air, which will allow us to make more improvements with ventilation. It would be one less thing Jacob is dependent on.

There are so many of you praying for us and for Jacob's progress. Here are some specific things that we can petition to God on Jacob's behalf.

1)Please pray that Jacob can get off the ventilator and onto "Vapotherm." This would mean that Jacob is taking control of his own breathing and will not have a tube down his throat.

2) Please pray that Jacob's body will tolerate more milk and that he will get stronger.

3) Please pray for the nurses and doctors that make decisions about Jacob's care; that God will be their hands throughout this journey.

Being here has opened our eyes. There are multiple families in the NICU that are going through similar trials. It is heartbreaking knowing that there are couples just down the hall that are fighting for their child's health, as we are. Sometimes the news is not positive and we are reminded of what God has brought Jacob through and of the miracles that are performed here on a daily basis.

One small step for mankind...one giant leap for Jacob

We can officially say "GOODBYE" to the oscillating ventilator and a "HELLO" to the regular ventilator! Since Jacob was born he had been on a special kind of ventilator that gave him many many small breaths each second, allowing his lungs to be expanded gentler than a conventional ventilator would do. Today they took Jacob off the oscillating vent and switched him to a regular vent where he is taking larger more regular breaths. This is a big step for us...it means we can begin feeding Jacob with breast milk through a feeding tube and that we are making steps in the right direction with progression of his lungs. Yay!

Here's a picture of the oscillating ventilator leaving the room...

Also, in the last few days Jacob has been spending more time alert and wide-eyed. He can track better with his eyes, and likes looking at the paper cranes that hang just above his head. He finally enjoys being touched and really likes his head being rubbed. Jeff has a calming touch with Jacob and I am able to read and sing him to sleep! What a treat! This has been so special for us! We praise and thank God every day for the moments we are having with our beautiful son and continue to ask for more!

We have added some things to his bed recently just to make his room a little more special. Gramma Tuley made a blanket and embroidered the names of all the people that surround Jacob with love. His name is in the middle, and the others are in circles around him. Not only is he surrounded with his Daddy, Mommy, Grandparents, Aunts and Uncles, but also by friends and all the prayer warriors too. We also hung a bear given to him by Jill that reminds him to hang in there! We got some footprints and also hung the scripture that we read to him on the day of his first surgery; Matthew 7:7-8. Thanks to our nurse on Saturday and Sunday for making those suggestions! How special.

We are still asking for more prayers for Jacob. God has brought us so far and we tell Jacob every day that he is a miracle! We still have some big hurdles to overcome. We continue to petition to God that Jacob will be able to ween off the ventilator completely, that he will not need any support on oxygen or nitric oxide for his pulmonary hypertension. We ask for prayers that the feedings go well and that Jacob's body responds well to the breast milk. These are the major things that Jacob will be facing in the next couple of weeks or months ahead. Also, that his right lung will continue to grow and expand with good tissues. Thank you so much for your continued support and prayers for us. We would not be here without them!

The past few days

The last couple of days have been good. Jacob continues to recover from his surgery and continues to be loved on by all that care for him. The doctors and nurses said that the first 72 hours after surgery are always stressful and Jacob has had ups and downs in lots of areas. Sometimes his heartrate will go up and other times his blood pressure goes up. He will occasionally open his eyes and look around, but then will get so worked up that he is breathing too much.

Overall, we are doing okay and Jacob continues to be on the slow road of recovery. I say slow because that's really what it is...SLOW. It can take weeks for babies to come off the ventilator, and weeks to be weened off medications, and weeks to be feeding properly, etc. We have made it over a huge hurdle with the surgery and there are challenges ahead but we have great hope. There still is the possibility that Jacob may not be able to come home with us, but we are asking God for that miracle. Jeff and I wouldn't be surprised if we are here for at least 3 months more. However, God can do amazing things, as we have witnessed so far, and would love to experience Jacob's homecoming.

Little Feet..
A side shot of his cuteness...

God has smiled on us today!

After hours of waiting, the surgeon walked into our little "quiet room" to tell us the news. He sat down in a chair across from us and said that he just couldn't explain why everything went so smoothly this time. Needless to say, Jeff and I were overjoyed and knew that God's hands had been at work today. He continued to explain that they were able to put the liver all the way into the abdomen and place the patch where they wanted it. Jacob remained stable, tolerated the changes, and stayed on the lower vent settings that he had achieved in the last few days. The surgeon even said that he saw a little more right lung. This was what we had asked for! We still have a long way to go...there will be many more hurdles to jump over in the next few months before bringing him home. But, today has been a blessing beyond what we could have imagined. The doctors are concerned about a possible clot that they found in his lower extremities after surgery. Please pray that this hurdle will not obstruct further recovery for Jacob. May God bless you today as we have been blessed by you. Thank you for taking our son before the Father and being a part of this journey.

Fun with Jacob

Here are some fun pictures we have gotten in the last couple of days. Jacob is really making an impression on everyone he comes in contact with. He's well known around the NICU for being so CUTE! :)

This is why we call him Mr. Bubbles...he often has bubbles coming out of his mouth and nose.

Isn't this just precious. He seems to really like his hand up by his face. In a couple of our ultrasound pictures he had his hand by his face, and now it seems the same.

This is a book that was read to Jacob today, on Valentine's Day. The book is from Cousins Fernando and Stacy. It's about a rabbit named Jake that wants to explore the world. Along the way he helps a horse, pig, and duck by giving them food from his backpack. As he explores, he loses his way and the horse, pig, and duck help him find his way home. Perhaps Jacob has helped some friends on his way home!

A Family Portrait. (Not a typical one)

Holding Hands

We are enjoying each moment we get to spend with our little miracle. He really continues to defy the odds and keeps fighting to be here. Thank you again for all the prayers that are going up on Jacob's behalf. We humbly ask for more especially as his second surgery approaches. May you be blessed today!

Surgery #2

We are scheduled for Jacob's second surgery on Monday morning at 7:30. There have been several different times discussed, but getting all the right people and equipment together at the same time made Monday the best option. The surgeons are not sure how far the liver will tolerate being moved, so they will put it as far as they can without interrupting blood flow. They believe this will at least give his lung a chance to develop further and improve his progress. Again, the surgery will take place in Jacob's room, however the surgeons are going to apply a new technique, ultrasound technology while in surgery. Using one of Jacob's existing tubes, they will be able to send an ultrasound probe down his throat so they can see the liver as they move it, enabling them to have real-time information about how Jacob's liver is tolerating the move. This is not a typical use of this technology and the surgeons seem excited about how it will apply in this case. It's amazing what they have been able to do with Jacob's care.

Here's what we can ask God for:

That Jacob's liver will go ALL the way into his abdomen and that the surgeons will be able to patch his diaphragm in the proper place.

Also, that his right lung will continue to expand with GOOD alveoli and put less pressure on his heart and pulmonary vessels.

Here's more pictures of our precious little guy

Look at this double chin...aww...

Dad changing a diaper...with all the IV lines and cords...it's alot harder than you think!

Jacob and his first baseball. He can play catch with Granpa!

There are so many of you that have shown us support through visits, cards, gifts, prayers, flowers, food, love, etc. It's so humbling that God has allowed us and Jacob to have the opportunity to receive this kind of support. Praise God for little miracles! It is our prayer that we will continue to witness more of these miracles each day with Jacob.