Saturday, January 31, 2009

One day after surgery...

Jeff and I are definately riding the roller coaster of the NICU. One minute things can be so encouraging, and the next minute you can be going down fast. The hours after surgery were part of that "going down fast." While we trust that God has Jacob in his hands, that doesn't make it any easier to experience. Jacob's vitals were very unstable throughout yesterday afternoon. This is related to post-surgery. An X-Ray found that air had collected in his chest and abdomen outside of his lungs, possibly due to new lung tissue on the right side being expanded. Air was leaking out through the right lung tissue, which caused Jacob's vitals to drop within minutes. Jeff and I were standing at his bedside and we felt a change in Jacob, then within a minute or two his vitals had dropped. As part of the surgery, they had placed a line in his chest to drain excess fluid. Once they opened this tube, immediately the air was evacuated from his chest and his vitals began to improve. This is just one example of the "roller coaster" ups and downs we experience since entering the NICU. After that episode, Jacob climbed up the hill and remained stable most of the evening and into today.

Here are a few pictures we captured of our sweet baby boy. He continues to fight. Keep on praying!

Jacob (post-surgery)

Precious Little Feet

Beautiful hands

The Morning of Sugery and Latest Updates

We arrived at the hospital at 6AM on Friday morning with one goal in mind; to spend as much time with Jacob as we could before we put him into the hands of the surgeons. We didn't know what our outcome would be, and if it was our last moments with him, we wanted to make them special.
As we were driving to the hospital we decided that we wanted to read some scripture with him and sing some songs with him to let him know that he is in the arms of the father! We were given a little children's bible and decided to use that for our time together. On the way, we were talking about which scriptures would be good to share with Jacob. We thought of "Be strong and couragous and do not be afraid," in Deuteronomy, also we thought of "For I know the plans I have for you.." from Jeremiah, then we thought about "Trust in the Lord with all your heart" from Proverbs. We realized none of these would work because the little Bible was only a New Testament. So as Jeff dropped me off and parked the car I asked God to show me what we should read to Jacob. I opened the little Bible and it opened to Matthew 5, the section about Ask, Seek, and Knock. It reads, "Ask and you shall receive, seek and you will find, knock and the door will be opened..." I thought that would fit well with the occasion, but I wanted another scripture just in case, so I closed the Bible and opened it again. Only this time it opened to Luke's version of the same scriptures, "Ask and you shall recieve, seek and you will find, knock and the door will be opened." My eyes filled with tears. This was definately what God wanted us to share with Jacob.
As we were in the room with Jacob we shared those scriptures, and sang "Be strong and courageous," and "Jesus Loves Me." We told Jacob that there are so many people asking God for his miracle, and that he needed to ask God too. We reminded Jacob of all the wonderful things he had already done in this life, all the people he had helped, all the events that he got to participate in, and reminded him that he is probably the only kid his age that could say he flew a plane with his uncle! Our nurse that morning came over with tears in her eyes and said that she felt burdened to pray with us. So, Jacob was prayed over by his nurse and us before we left him. It was a very special morning for the three of us.

The Surgery started around 9AM and lasted about 3 hours. It was the longest three hours of waiting we have ever had to do. They called us back into a quiet room where we met with the surgeon and Jacob's attending doctor. The news we receieved was not the best news, but not the worst news either. It was still hard news to receive. When the doctors moved Jacob's liver into his abdomen and began to patch him up, Jacob's liver did not respond well and had problems with blood exiting the liver. Once the doctors saw this, they placed the liver back into the chest and immediately the liver and his vitals improved. They tried three times to move the liver and each time Jacob's response was the same. In Jacob's best interest, the surgeons decided to back out of the surgery in order to redefine their plans and do another surgery later next week when they have learned more about why they encountered problems. So, Jacob still has a liver in his chest, and has to recover from a surgery that didn't correct his structural problems, and needs to do it again later.

Upon receiving this news, Jeff and I were obviously disappointed that it wasn't as easy of a "fix" as they had thought previously. It was not easy to digest, knowing that our son would have to fight for recovery, then fight again in the coming days. It's one of those moments where a parent wishes they could take any and all pain away from their child, but are helpless to do so. We knew that recovery would be tough and there was a chance that his little body would not be able to make that fight without the help of ECMO. We were in for a long night.

Thursday, January 29, 2009

Last night was rough for little Jacob; he kept fighting the ventilator and couldn't relax enough to let his small lungs operate efficiently. They moved him from his left side to his tummy, thinking that would help some of the pressure, but instead it aggitated him more. He definately doesn't like to be messed with. Early in the morning Jeff went over there as they moved him back to his left side, and Jeff said immediately Jacob relaxed and his numbers improved.

The doctors and surgeons came by and talked with Jeff. They are going to move ahead with surgery tomorrow morning at 7 AM for Jacob. The amazing part of this whole process is that they are going to turn his room in the NICU into an operating room. They close off the section of the NICU, scrub everything down, and allow for Jacob to remain in his room while they perform surgery. They bring the OR to him...amazing really. A couple of the doctors made a point of telling Jeff that they specifically chose Jacob's room in the NICU (which is larger and easy to access) because of this possibility.

The surgery would move his liver to his abdomen and then repair the hole in his diaphragm with a gortex like patch. They would also insert a tube into that empty space to drain any excess liquids that may build up after surgery. Then it's a waiting game to see what his right lung is capable of...

For those praying...Jeff and I would like to ask once more for a little extra, especially since it will be a BIG, and possibly LONG day for us and Jacob. We are only here by God's gracious hand and he has listened to our and your requests for a miracle.

Wednesday, January 28, 2009

Another day with Jacob

Again and again we are humbled by God's gracious mercy toward us. God has been listening to all your prayers, and Jacob's life is the proof! We love Jacob so much and he is the most amazing child we have ever seen! Plus all the nurses think he is so cute! While spending time with him this evening, he opened up his eyes and looked right at me. I told him how much I love him and to keep on fighting! We have a new appreciation for the value of every single breath. We take for granted that which is such a struggle for Jacob.

Here's some pictures of him with some stuffed animals given to him by his family.

Here's a more technical/medical update...

Jacob has had his ups and downs in the NICU. One of the surgeons described him as "Livin on the Edge." That may become his theme song... He doesn't seem to like to be bothered, and all the necessary XRays, poking, and prodding that they do on him makes his numbers go down. However, once he can calm down, he seems to improve. The XRays showed today that his left lung is expanding well and they were able to see that his right lung is attached and they can see a small portion of it getting some oxygenation. This was good news! The doctors have been wanting him to stabilize on the ventilator before moving toward surgery. It looks like Friday or Saturday will be another BIG day for God to show Great Power through Jacob and the surgeons. Basically, the surgeons would move his liver into his abdomen, repair the hole in his diaphragm with a patch, and allow more space in his chest for his heart and lungs. This will also give the doctors a chance to see the amount of right lung that Jacob has. Many of the doctors that met with us prior to his birth said that Jacob would have to go on ECMO and so far, Jacob has not shown the need for ECMO. Another blessing and another way that God has responded! The doctors are saying that Jacob may still have to go on ECMO, either before or after surgery, but our prayer is that God/Jacob will continue to surprise them!!!

On another note...

Many of you have shown us great support through posting comments on the blog, sending an email, etc. But to my Cole Elementary family, I wanted to give a "shout out" to you! Every year in my class we learn how to fold paper cranes when we read the book Sadako and the Thousand Paper Cranes. It is a Japanese tradition to make a wish and fold cranes in hopes of seeing your wish come true. Jeff and I heard that you all gathered together to pray for us on Monday, and that many of you wrote special prayers on origami paper and learned how to fold a paper crane from one of my students...which I am sure was daunting... Here's a picture of your prayers hanging over Jacob's bed in the NICU. Many of the nurses from other areas have come to Jacob's bed to see these paper cranes/prayers. You are such special people!

Thank you for the continued prayers and support. Keep them coming!!!

Tuesday, January 27, 2009

First day of Life...

Tonight was a special night in our little family. I had the opportunity to just sit and enjoy the company of my son. The doctors came in and looked at his progress. While we were talking they spoke about numbers and data points, but to me, it was one more day that I was blessed to be with him. It was one day that we were told we would never get. So it was a special day.

Jeff and I were able to be in his room at exactly 7:46 to celebrate Jacob's first full day. We had the NICU nurse take this photo of us with Jacob just before we sang "Happy Birthday" to him. This was one thing we had talked about doing if we were blessed enough to have him for a full day. It was an emotional moment for both of us.
Here is a picture of the flowers we have recieved to our room from many of you. We have been overwhelmed with the outpouring of love we have been shown through the calls, visits, comments to our blog, and prayers for our little family. Thank you!

Please keep the prayers fervent, as we still have many challenges ahead. But our God has already shown us great mercy by being present and honoring us with a precious day with our son.

He's Here, Praise be to God!

To all who are following our blog, passing it along to others, praying for us, and even to those who are fasting, we want to thank you. Your actions have touched us more than you will ever know.

Jacob Elliot Tuley was born on January 26, 2009 at 7:46PM. He weighed 6 pounds 13 ounces and was 21 inches long.

It was a beautiful experience and God was SO present throughout our labor and eventual delivery. We had to have a C-Section because Jacob's heart rate was going way down during contractions. Later, in the OR, we found out that the cord was wrapped around his neck, causing the problems with his heart rate. However, God was definately in control and Jeff and I felt the prayers throughout the whole day and the Peace that only God can provide.

Here's what we were previously told about our delivery and prognosis...
and here's how God responded yesterday evening during our delivery.

1) We would not hear him cry.
He cried two little squeals.

2) He would not be able to take any breaths.
He took breaths before the doctors were able to intebate him.

3) He would immediately turn blue and pass.
He pinked up and was even kicking around.

Upon delivery Jeff was able to get a few pictures while the NICU doctors and nurses worked on Jacob. They were able to stablize him enough for the long trek to Children's Hospital in an incubator. They briefly showed him to me and then whisked him away to the NICU at Childrens. Jeff was able to go with him and the doctors as they transported him in a capsule. Jeff got to move him from the capsule to the bed. As of right now, Jacob is still in the NICU at Vanderbilt Children's hospital. We made it that far! Yay! We weren't even sure whether we would make it past labor and delivery before he would pass from this life, and yet, God showed us that Jacob is a FIGHTER!

Jacob is breathing with the help of a ventilator, but taking his own breaths as well, about 20-30 a minute. His heart rate and blood pressure are consistant, like other babies that have had Diaphragmatic Hernia. His kidneys are working and he has made it past the first steps of the process. He is even opening his eyes and looking around. He has stablized on a ventilator and is not on ECMO (a bypass machine), which is a good sign.

I was able to see him later that night, once the epidural had worn off and I could move my legs again. :) They had to wheel me over to Children's, almost a half mile walk, so that we could be together. What a joyful time for Jeff and I to be together with our son. We were so blessed to have that time with him together.

Today the doctors will come and assess how Jacob is doing, and how his body is responding to the treatments. If they think he can handle surgery without ECMO, they will attempt that some time today. They may have to put him on ECMO, but we are hoping that Jacob will surprise us all! He already has.

We are definately not out of the woods yet, and we have a LONG way to go, but we have treasured the hours we have had with him and what a JOYOUS few days it has been!
Please keep the prayers coming! Praise be to God that we have made it this far!

Wednesday, January 21, 2009

Jacob's big day is approaching...

We continue to be faithful in prayer as our son Jacob gets ready to present himself to this world. Please keep praying that God will give us the "glorious impossible," as we have been asking since week 20. Unless he comes early, he should be here on Monday, January 26th.
Here's a picture of our little one just 2 weeks ago. It's a 3D image of the profile of his face with his arm coming up to his forehead. He looks a little chunky, but cute!