Monday, March 30, 2009

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!

Sunday, March 29, 2009

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.

Sunday, March 22, 2009 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. :)

Thursday, March 19, 2009

More Information

I know many of you are checking the blog for 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!

Tuesday, March 17, 2009

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.

Tuesday, March 10, 2009


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!

Sunday, March 8, 2009

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!

Thursday, March 5, 2009

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.


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!