Saturday, February 28, 2009

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.

Sunday, February 22, 2009

One small step for 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 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!

Thursday, February 19, 2009

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...

Monday, February 16, 2009

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.

Saturday, February 14, 2009

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!

Thursday, February 12, 2009

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'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.

Tuesday, February 10, 2009

Moment by Moment...

Literally ten minutes after writing the last blog, there was a huge scare for Jeff and I. Jacob's ET tube became clogged and prevented Jacob from breathing or the ventilator from functioning as it should. In a matter of moments Jacob's left lung collapsed, he turned blue, and his saturation levels took a nose dive. Within seconds of this occurring, the doctors were in the room, ventilating him through the "bag" and working on the problem. God has truly gifted the nurses and doctors and given them the necessary skills to be able to care for Jacob. They took an X-Ray and discovered that his vent tube had gone too far and was not allowing Jacob too breathe. The doctors and nurses seemed to think this was not a setback for Jacob, but that it was a mechanical setback. Either way, it was scary and reminded us of how fragile life can be.

Jacob, the nurses, and the doctors spent the rest of the night and all of the next day recruiting the left lung back from the collapse. Jacob had to go up on his vent settings and oxygen in order to get back to where we were...Jacob has bounced back and as of last night (Monday) he is back to where he was before the last episode.

There are a couple of tests to run today on Jacob, an ultrasound and echo. Pray that those tests show the doctors everything they need to see!

Sunday, February 8, 2009

A Few Good Days...

In the last couple of days Jacob has been steady and stable while on the lower vent settings. His heart is pumping the blood to his lungs, and his lungs, with the help of the vent, have been able to do their job of getting rid of the CO2, with a few ups and downs in between. We are making it through the weekend and ready to see what the next moment may hold for us. We are still unsure of when the next surgery will be, but hopeful that it will be early this coming week. Who knows, in the NICU that may change from moment to moment.

Jeff and I are SO thankful to the doctors and nurses for their years of dedication that has allowed them to provide the kind of care Jacob has required. It is humbling to be a parent that is reliant on the skills of others to care for your newborn son. We will see where the next step takes us.

Here's a few pictures we snapped from the past few days of Jacob.

Granma reading Jacob a story...

Mom, Dad, Gramma Jo, and Jacob

Mom and Jacob

Tummy Time with low rider britches put on by Dad!

Saturday, February 7, 2009

Ask and You Shall Receive...

This is why we ask...

In the last blog, Jeff and I were at a very low point...we asked you to be praying that Jacob would improve and work his way off or close to off the ventilator. That this was the only way the surgeons would move ahead with the second surgery. The surgeons seemed to think this might take months. That was two days ago...

As of last night...The attending doctor came by Jacob's room last night around 7:15 and informed us that Jacob has made such great progress on the ventilator and said, "He is not where I expected him to be." He also said that he had talked with the surgeons and told them about how far Jacob was off the vent, and they seemed to think the second surgery may be some time next week. I think everyone is amazed. But we know who is doing the working...

The Lord says, "Ask and you shall receive" and we asked you to pray for those specific things...Thank you for praying for our son! We cannot explain to you the gift that you have given us by just being fervent in prayer for Jacob. Because of your prayers we get more and more days with our precious Jacob. We get to change diapers, read stories, pray with him each night before we leave, and watch him touch lives of the nurses and people around him. What a precious time we have had...more than we could have hoped for. But at the same time, we ask God for more. So, humbly, we ask you to continue with us in petition to God for our little one.

Keep praying that Jacob will grow stronger; that his heart will continue to pump blood to his lungs and not strain because of how small his right lung is. Pray that during surgery, his liver will tolerate being in his abdomen and that he will be patched up in his diaphragm. Keep praying for his right lung, that it will expand and grow new tissues faster than the doctors can explain. Also, that after surgery, Jacob will be able to bounce back and that we can be on the road to recovery with fewer downhills on this part of the roller coaster.

On another note, we had some wonderful moments with him in the last few days. We got POOP! I know it's silly, but that means that everything works. Our nurse on Thursday was overjoyed with us in that moment and said, "Thank you God for Poop, Amen!"

We also got to see him open his eyes, look around, and begin to be more alert. This is because they are weening him down on his sedation and pain medication, and he is tolerating this well. Enjoy these pictures of our little JET!
See those beautiful eyes!!!
Here's all our contraptions in the room...we're high maintenance.
A picture of Jacob with his zebra and the oscillating vent behind him...
the vent is what we need to get rid of...

Wednesday, February 4, 2009

One step at a time...

We will begin this post with all the positive and wonderful things we got to experience with Jacob today.

I got to change Jacob's diaper today! For many of you this may seem silly or possibly on the gross side, but it was one more thing that Jeff and I got to do with Jacob that we thought we would not get to do. One thing they have been saying about Jacob is that his kidneys are really working well...he must take after me! ;)

We read a book with him called I Love You Through and Through. It starts out by saying all the things that you love about your child, "I love your top side, your bottom side, your inside, and outside." Jeff and I took turns reading each page to Jacob. I added some things into the story, as most teachers would do. I know Jacob heard us and being able to tell him how much we love him, face to face, was so special. There's nothing like reading a story to your newborn baby!

While these two things were very special, this is not the full picture of what we are going through in the NICU. In fact, today was quite depressing for Jeff and I. Jacob's day was okay and some progress was made with his ventilator and decreasing of some medicines. However, our discussion with one of the surgeons left us feeling like there is long road ahead even before the next surgery. He indicated that the surgeons want Jacob to be off the ventilator completely, or almost completely, before they will move the liver into his abdomen. He also indicated that moving the liver wouldn't solve our problems, that Jacob's lungs would still have to overcome so much in order for him to survive.

Our hearts are heavy today. We had so much hope in the first few days after birth and leading up to the first surgery, Jacob was defying all the odds. We had wanted so much for the first surgery to work and be on the road to recovery. Instead we are in this waiting period, just seeing what progress Jacob can make. In order for us have any hope for recovery and to bring our son home, Jacob needs to work his way off the ventilator. The nurses, doctors, and surgeons don't think that this will be possible for us. If it does happen, it will be a long, slow process.

We know that with God, all things are possible, and we have come this far by the Grace of please pray for our "Glorious Impossible" and that Jacob can come off the ventilator sooner than expected and with far better results than can be explained by modern medicine.

Many Blessings to you all!

Tuesday, February 3, 2009

Catching Up...

It has been a couple of days since Jeff and I have updated. Not like we've been busy or anything... :)
Jacob has had his ups and downs in the NICU, but when we arrived today his numbers were excellent! His swelling has gone down because of the lasix they had given him and his oxygen support level is down to 56%, which is lower than we've ever been. The nurse was telling us that he is completely off one of the blood pressure medications, and almost off the other. These are all really good things! As Jeff says though, we better "Strap in" because we are on the roller coaster ride of the NICU and when there are ups, usually there are downs too. As long as we are trending in an upward direction, we will continue to have hope.
The surgeons have been a little stumped at the response of Jacob's liver during the first surgery. They told Jeff that they are going to meet on Wednesday to discuss our case and see what plans they can come up with. Most of the surgeons have never had a liver respond the way Jacob's did during surgery.
Here's a couple of pictures of our beautiful baby boy as we wait on the Lord for our next steps.
Mr. Lion is peeking out at Jacob and giving him some Lion strength! He's teaching him to be fierce and strong.

Jeff helping the nurse move Jacob's head so he is not always laying on the same side.

The yellow earmuffs are helping Jacob since he is so sensitive to sounds...aren't they cute.

Mom getting a lesson on how to take Jacob's temperature. How fun!

Here are some of the things we can be specifically praying for:

1) When the surgeons meet on Wednesday, that they will come up with a plan to repair Jacob for his next surgery, and that God will put that plan in their minds.

2) That Jacob continues to grow stronger, not weaker, while we wait for our next surgery.
3) When surgery takes place, that his liver will respond more positively to being placed in the abdomen and that Jacob can be on the path to recovery instead of waiting for the next steps...
4) After surgery, that Jacob's right lung will expand and work efficiently, as if it was developed in there all along and just needed space to inflate.
Jeff and I want to take a second to thank so many of you that have come by to visit us, sent cards, responded to the blog, given food for our family, and those that continue to pray fervently for our beautiful son. We can't tell you enough how much it means to us to have such wonderful support. Your support is seen by many of the staff here, and many of them have commented to us about the faith of those that are standing behind us and that Jacob is evidence of God working. Through your prayers, God is allowing Jacob to be a light to the world around him. Praise God!