Todd -   01/30/08 07:19 pm
This will be the last posting before this site is closed. We wanted to update everyone as to Porters condition one last time. Mercy Hospital called today regarding the tests that were performed earlier this month. They confirmed that he does not have Hirschsprungs! Porter has been doing really well in regards to his operations. He has battled some nasty colds, but has bounced back from them. Our thanks to all of you that have continued to pray for him and our family throughout these months.
 Paula -   01/18/08 08:30 pm
Hello fans of Porter! Porter did really well in Kansas City. They dilated him extra large this time, so warned us that he might reflux more. He spent tuesday, wednesday, and thursday puking. In this case we were glad, as Porter had a nasty chest infection and all the puking brought up the yellow phelm. He sounds almost normal tonight (friday). He has not puked since early this morning, so that is a good sign. At his appt. his surgeons early assessment of still needing a surgical tummy wrap looks unlikely. They removed his feeding tube. Today it looks like a puncture wound, with a scab. So, I guess it is healing nicely. We do not have to go back for another ballooning until March 10th. This is great time wise and financially. Most importantly, the little guy will have a break from hospitals. The only negative news we have to report is, the surgeon questioned Porter's bowel control. They have enough reason to suspect a disease named Hirschsprung, to test his cells for it. They did this while he was already under for the ballooning. We will have the pathology report Monday. At that time we will post our last post on this web site, to let you know what the results are. If it is present, Porter would have to have a yucky surgery to remove the bad part. Usually, the future outlook is good, if there are no complications. Please pray with us that Porter does not have this disease. It seems like (to us) that he already has had enough problems in his young life. We know God is in control, and we are once again asking for your prayer. God has been so good to us. We know He has the very best for us. We are growing as a family, a couple and as followers of Christ. Thank you, Porter, your life is a testimony to the rest of your family. Porter has such a sweet spirit. An ever ready grin, and kind countenance. As always we thank you for your support!!!!!
 Paula -   01/01/08 11:33 am
Hello family and friends, We hope your new year is off to a wonderful start. We have much to be thankful for. We are so happy to share with you that Porter is doing really well. He has come through the stomach flu and a head and chest cold, and handled them very well. He is growing in length and weight. He smiles alot and rolls over. He likes to stand on his tiptoes, and pull hair. We are taking him to Kansas City on January 14th for another ballooning of his scar tissue. He has made it 4 weeks, the longest so far, without needing this done. We are confident he will make it until his appt. and we are so excited about this. This would mean that the scar site is slowing down in it's thickening and maybe we can stretch out the K.C. trips even further. In 4 weeks Porter will be half of a year old and this seems incredible to us. This adventure God has taken us on is amazing. We have learned to trust in Him even more. God wants us to have an abundant life no matter what our circumstances are. We have learned that everything we want is a lot different than everything we need and that when we let go, God can BE God in our lives. Sometimes as humans we believe we are entilted to a smooth road, a great income, a perfect job, or a perfectly healthy baby, but giving up our entitlement allows us full rest. God has brought each one of us to the places we are in, for a reason different from our own. We can rest knowing that God has a plan for our lives. As we stay close to Him, he has been showing us the right path. God has a reason and a plan for the paths He takes us on, and Christ's offer of the abundant life is waiting for us. There is a great book we are reading right now (along with the bible) that talks about this abundant life and we are learning day by day that when we trade what we feel entitled to for what He promises, we begin a journey on an amazing path. Would you pray with us that we would seek this abundant life and share it with our children. To teach all of them that God is crazy about them? We are asking for prayer in that we would travel to and from K.C. safely and that Porter would handle being put under again well. Also that as we travel down this adventureous road that we would remember who is really in charge and take refuge in Him. We will give one last up-date when we return from K.C. and then shut down this site at the end of January. Thanks to our brother-in-law, Doug for supplying us with this avenue for information and prayer requests. We appreciate you, Doug. Thank you to all of you who have sent money for the trips to K.C., the prayers, the concern, errands, meals and tons of other ways you have blessed us. We are so very grateful.
 Paula -   12/04/07 10:09 pm
Hello Friends and Family, We are feeling so grateful to God as we write this. He has been so merciful and gracious to us. Porter once again went through another successful dilation of his esophugus stricture (scar tissue build-up). He woke up quickly and was hungry and eager to eat. Although it is painful for him to eat after they pull out the ventilator, he doesn't get to eat for 8hrs prior to surgery, so the little guy is ravenous. The 2 or 3 days after the procedure are sore ones for Porter, but he handles it like a little trooper. We have to take him back again at the end of the month, but this is the longest stretch between dilitations so far and we are so happy for him. We asked Dr. Ostlie how many more times Porter would have to be stretched, but there is no way of knowing. Porter is in God's hands and that is ALL we need to know. One day at a time is still the best method!!!!!! As our family walks this path, we are reminded more and more, that a life apart from God is not really a life. Our other children have been such a good example to their parents. Their trust and faith and perserverence are an inspiration to us. What you can pray for is patience for us concerning the ongoing trips to K.C.,and the head and chest cold Porter has developed. You should see the stares at the supermarket when he honks. If we thought Porter was loud before, he really draws attention now. We are trying to respond to the stares gallantly, we know we can't explain Porter to everybody. We did find out that his strange noises usually disappear by two years of age. It sounds like it is hurting him, but we have been reassured this is not the case. Porter is up to 10.2 lbs. This was a huge weight gain in just three weeks. We praise God for all the ways He is working in Porter's life. Thank you for the prayers, thoughts and money you have sent our way. We feel so loved. We appreciate every kindness. It reminds us how God ALWAYS provides for His children. And using, you, our loved ones means so much. Please remember Porter the last week of December. Thank you !!!!!!!
 Todd -   11/05/07 05:22 pm
Just returned home from Mercy. Porter had a scheduled dilation of the stricture that went as planned and a circumcision was done as well (hey, if you are already "out"). He is a little sore from both procedures, but is sleeping it off. Some new pictures are being added soon and one of them was taken of the actual stricture. Kind of hard to tell exactly what is what, but suffice it to say that the Doctor says it is looking good. As we traveled to KC, Paula and I talked about how far God has brought Porter over these last three months. To us it is an amazing journey. He now weighs in at approximately 8# 9 oz. The weight gains have been steady and considering the effects of the stricture, we are quite pleased with the results. Because the stricture does not appear as "tight", Dr. Ostlie feels that Porter is gaining on this and therefore, scheduled the next dilation three weeks out. Thank you for continuing to remember Porter and us throughout this long process.
 Paula -   11/04/07 11:43 am
Hello Friends, This will be a quick up-date. We are mostly asking for prayer this time. Porter is headed back to K.C. today. He is scheduled for his 3rd ballooning tomorrow morning. We are hoping and praying that these trips will come to a halt. It is stressful for our family, but as always God is Faithful!!!! Please pray for safety in travel, that our children at home will handle themselves alright, and that this will be a successful trip for Porter. We know God has things for us to reap from this season in our lives-we pray he finds us faithful. We appreciate all of you!!! God Bless!!!!!
 Paula -   10/17/07 11:27 pm
It has been almost a month since we have given an up-date on Porter. Alot has changed in that month. Mostly good, with a few setbacks. First the good stuff!!! Porter is growing and gaining weight. Not much, but we will take what we can get. He is not needing to be suctioned very much. When he first came home, it was hourly, now maybe only once a week. This is a huge step in the right direction. Porter is smiling alot and laughed out loud once. Everyone is enjoying him, even when he is crying. The things that haven't gone as well, are the times God has asked us to lean on Him. For when we are weak, then He is strong. Porter started stricturing (scar tissue thickening to the point of closing off his throat) alot last Tuesday. Paula and Allie took him in to the Mcpherson emergency room, where it was decided that he needed to be ambulanced to Mercy. That night at about 9 or so the surgeon (who had been in surgery with an 18 year old since 9 a.m.) performed the balloon surgery on Porter. It only took about 30 min. so Porter wasn't under anesthia for too long. Dr. Ostlie told us that the good news was that the stricture was very short, but the bad news was that we have to go back this Sunday to have it re-done. They can't be too aggressive or it will damage things. Although these situations are stressful for us, we feel God's hand upon us and we know we are growing in our walk with Him. It is our prayer that we will not have to keep having this done on Porter, there is only so much they can do to the scar tissue. Will you please pray with us that Porter will be healed and that God's will-will be done on earth as it is in heaven. It is so awesome to see our children, fervently in prayer over their brother. They lay hands on him and ask for healing. We are all growing in our faith, so this is the beautiful part of Porter's and our journey. What is the saying? No pain, no gain. For those of you not from this area, our church sponsered a bake sale and a chili benefit on Porter's behalf. We are so thankful for the support. So far we have been able to pay each bill as it comes in, and we are so thankful. Mcpherson memorial has been paid off, as well as Wesley. Those two alone exceeded 100,000 dollars. Between our insurance and the generosity of our friends, we owe nothing to those two insitutions. Praise God!!!! Another thing to pray for..... Porter drinks his milk very slowly. It has been a challenge to find time to make sure he is nourished, and keep up with the demands of the rest of our lives. We are praying that God would heal this for Porter, and/or show us how to best manage our lives. He is so faithful, we are sure He won't leave us hanging. Once again we have been told by medical people that the way Porter has progressed is a miracle. We are so excited about this. We know when God's people get behind something and pray, mountains can be moved. Would you pray with us that Porter's mountains can be REMOVED? Thank you for standing in the gap with us. We love you all and are so thankful for your suppport. Please know that we are trusting the Lord with Porter's well being and we are trying to learn alot from this season in our lives. May God be with each one of you.
 Paula -   09/20/07 08:57 pm
It has been several days since we have given an up-date on Porter. We have had an adjustment stage going on at the Butterfield house. Porter is gaining weight and only woke up once the last two nights. Mommy is very grateful for this. We have heard back from two medical personel that have agreed that Porter's surgery and recovery are miraculous. We have felt this way all along. He had so many hurdles to jump and he did it so quickly. We want to follow up on some of the people we witnessed to, when we go back to Kansas City next Thursday. Please be in prayer over that. We are also asking you to once again storm heavens gates with some petitions. Atresia repair has some sideline problems that can be quite difficult to deal with. The swallowing mechanism is much slower, so it is hard to work down food (milk included) this makes it very hard to nurse or feed Porter effeciently. We are asking that you ask God to make Porter's swallowing PERFECT!!! Also, a condition called GERDS is very likely in this kind of repair. It is basically really bad reflux. Porter is doing this somewhat and it is very scary. His secretions are still quite thick so when he crys it mixes with his milk and comes back up sticking to his throat. This causes him to choke to the point of REALLY SCARY. We have to aspirate him with a bulb, literally carry the bulb from room to room with us so that it is always available to clear his air passages. It is quite a challenge, especially with the other children needing care and attention. Porter does not have a sphincture, so this complicates things a little. Also, something called stricturing is highly likely. This is where the scar tissue forms at the surgery site and narrows it to the dangerous point. We have to go back every two weeks to K.C. to check for this to see if they will have to balloon this area. We would like to see God take this miracle ALL the way home. We know HE is able. We have faith that He will. But we also know that He is refining us during this time. We are thankful for this refinement. We need it and we want to be more like Jesus. It is through these adversities that we see God more clearly and seek His face more diligently. We thank Him for allowing this growth and we don't want to miss out on this opportunity to get closer to HIM. We love all of you and are so very thankful that we have you for support. We feel overwhelmed but not conquered. God is GOOD!! Elias (our 9 yr. old) prays for these miracles at least every other hour of every day. He says he believes with all his heart that God is going to do this for Porter. WE want this kind of faith, too!!!!
 Todd -   09/15/07 05:24 pm
Porter has now been home for a couple of days and seems to be doing better each day. His face is starting to fill out and we have seen his first smiles. Twice a day we have to give him a reflux medication that is still somewhat challenging to administer. It evidently doesn't taste as well as his milk, because he goes into a tizzy. We have already asked you for so many prayers, but we still ask for pray that his reflux would not get bad and that he would learn to swallow easier. His brothers and sisters still adore him. I think from his expressions that he is still taking them all in! Angie Janzen called this afternoon to let us know that the bake sale went on, even with the rain. We are really amazed at the generosity of this special community. For so many of you to take part in this is very humbling for us. We hope to be able to express our thanks in person with each of you at some point. You have blessed us over and over with your acts of kindness and our Heavenly Father sees this. May you too, receive His blessings in your life.
 Todd -   09/13/07 04:24 pm
The day we have been hoping and praying for finally arrived on Wednesday (9/12). Porter was able to leave KC Children's Mercy Hospital and go home for the first time. Paula has been gone most of this time as well, so it was going to be a homecoming for them both. We can't say enough to all of you that it would have been nearly impossible to go through this with out you. Friends, family and complete strangers ministered to us in our time of need in exactly the way we needed it. I also continue to be impressed with the physical and emotional care that Porter (and us) received at the hospitals. When it was coming time to leave Mercy Hospital, many of Porters nurses wrote really nice notes to him. You, who are nurses, are very special people and Paula and I have a new appreciation of your dedication to your babies. The ride home was quiet until the last 30 miles. Porter decided that he was hungry right then and now. So, we made a stop and took care of his hunger pangs and then proceded on. His siblings were waiting for his arrival and had balloons and poster all around. It was a special moment to see all of them in our home environment. We didn't get very good sleep last night as his system was getting adjusted to being outside of a hospital and we were adjusting to meeting his needs. Today has been much better and things are starting to resemble a more stable environment. When you get to meet Porter you will hear his distinctive cough, which is typical for EA babies. When he gets pretty upset it may sound like a goose honking, but he calms down fairly quick. We are learning how to deal with issues that he will or may have in the future. Look forward to meeting with you in the near future. Right now we are trying to have him adjust to his siblings and then would like to meet with others. Thank you for rejoicing with us over Porter's homecoming. God's blessings on you.
 Todd -   09/10/07 10:22 pm
God continues to move Porter forward in his healing. The contrast media study was performed on Sunday and confirmed the first one done that there were no leaks present. He was able to begin milk feedings again and had progressed well enough that he could begin nursing today. This afternoon, Porter nursed for the first time in his five-week plus life. I was amazed at how little effort was needed to get him going. We were told in the very beginning that this would be one of the biggest challenges for these types of babies. We have asked for your specific prayer on this issue and God has provided once again. As of this writing, he has had one other feeding and did great. They will be checking to see that he is getting the full quantity at each feeding and supplement with the bottle if needed. But that doesn't appear to be necessary at this point. Another issue that was of concern was with the reflux. As we understand it, Porter does not have a lower spinchter(?). Shame on me for not looking this up yet, but I believe that it is something that prevents fluids (ie. milk) from coming back up the esophagus (otherwise known as heartburn and other things). So far, we have not seen any signs of this and I would like to see how medical science would explain it. It is looking like Paula and Porter will soon be coming home, provided he continues on the path that he is now. As we see these victories in his life it reminds us of the faithful friends and family that have been praying for him. I belive that there are some in KC Mercy that believe there are more things going on here than what they are able to do as well. Thanks for everything and God bless.
 Todd -   09/08/07 06:26 pm
A quick up-date on Porter. A nurse just called to say that after viewing an x-ray of Porter's lungs, she feels like the Dr. will determine that Porter did not asparate any fluid into his lungs. He was sounding kind of raspy, but hopefully she is correct and the Dr. will agree. Porter will have to re-do the contrast test again tomorrow to see if there are any leaks. The surgeon said it is a possibility that the fluid in his tube is surgical fluid and not milk. We are praying that it will be determined that what they are seeing is not milk and that there are no leaks. If there is a leak they will not allow Porter to have any milk until no leaks are detected. They only test this once a week, so we would have to wait till next saturday to test again. Of course we will trust God with this, but our bodies want to be at home, altogether, as a family. It has been two weeks since Paula has been with Tay and Tobin and she misses them terribly. We also miss our friends and church family. God has been so good and we are grateful for everything He has done for us. We are asking Him for patience and know that He is always faithful. Thank you for your continued prayers.
 Todd -   09/08/07 02:23 pm
Paula is up to see Porter right now and has called in with a prayer request. He began milk feedings by the bottle yesterday and had been doing very well. When she went to see him this morning, they saw some fluids in his drain tube coming from his surgery site. This had been draining very little, but now has more fluids in it that might be milk. If it is, he may have a leak. Please take a moment to pray that this too will be resolved by God's hand. A surgeon is on his way to determine what is going on. I will update this page when I have more information later this afternoon. In His Hands
 Todd -   09/05/07 09:58 pm
I must apologize for an abscence in giving updates on Porter. Our internet service has been down and I have not been able to provide updates. It has been relatively quiet, in that, most of what Porter is going through is the normal healing process. After surgery, he did require some breathing treatments and had quite a bit of post-op pain. The breathing is back to normal and the pain has been kept under control with morphine. As of this morning, he has not needed any more morphine and has stayed pretty much pain-free! Paula has enjoyed being able to hold him and spend quiet times with him. His next big hurdle is this Friday when they will introduce the contrast media into his esophagus to see if there are any leaks. If none are found, he may be given milk. If all of this goes well, he may be coming home soon - real soon! I was looking at one of his first pictures from Memorial Hospital in McPherson earlier tonight and was thinking how far he has come in the last month. This has been a month of growth for Porter and for us in several different ways. Paula has had more opportunities to reach out these past few days to people that we never would have had contact with and share with them what our God can do. Sometimes, God's ways are a mystery to us, but it is well worth it to be part of it.
 Paula -   09/02/07 09:02 am
What an awesome God we serve. He has covered us with His hands this entire month. Porter Sloan Butterfield is one month old today. Yea!!!! Yesterday was a big day for Porter. His ventilator was removed and one other surgical tube. For the first time since he was two days old, his face was free from STUFF!!! We actually got to see what he really looks like. Is he adorable? You better believe it!!! Elias ( our 9 yr. old ) got to see him for the first time since the day he was born. What a reunion that was. Elias has been an around the clock prayer warrior for his little brother, as many of you have been. His comments were..."He's really, really, really cute and he sure does like his binky (pacifier)!!!" The pacifier sucking is a really big thing in these babies who have not been able to eat by mouth for such a long time. They develop an aversion to eating, because first of all they forget how and secondly they are unfamiliar with stuff going down their throats. But you could see Porter swallowing (saliva) and sucking to beat the band at the same time. This is a really good sign. One of the biggest hurdles for these babies is gaining proper weight, so this is key to his recovery. You could pray about this for Porter. Also we would appreciate prayer that there would be no leaks at the surgery site. If there are no leaks, he can have milk by mouth, thus he comes home sooner. All of this month, God has made it abundantly clear, that we need Him. We ALL need Him. Whether your life is just clicking along, or you have been thrown a nasty curve ball-God is there. Once again we thank you for taking this journey with us. Prayer makes a difference. Not only in Porter's surgeries, but also in our relationship with God!!!Praise God, He NEVER changes!!!!
 Todd -   08/31/07 06:32 pm
Earlier this afternoon at Children's Mercy Hospital there was a report of a father running down the hallways giving complete strangers high-fives and disturbing the peace. Okay, I did not do this, but I felt like it! First order of business - Praise be to our Father in Heaven!! If you are just finding out about this, Porter's surgery went very well. I will recap the events of this day. Paula and I went in this morning to see Porter and meet with Dr Ostlie. He explained the varies options he would consider, once he got an overview of what he found as he explored Porter's anatomy. He stated that they would first try to attach the ends of Porter's esophogus by stretching them. If they would not attach, but would be close, they would suture them together,leaving a gap and close him up to wait for growth. The third option would be to do the Gastric Pull-up. We had asked you to all pray that the esophagus would stretch and be able to attach. God has intervened and allowed this to be done. Praise God! The surgery lasted approximately four hours, because they found a fistula that was attached to the trachea that caused them to "scratch their heads". Not only was he dealing with the rariest kind of Atresia, now they had a rare fistula that they had never witnessed before. They deliberated for an hour before deciding how they would procede. After coming up with a plan, they finished the first part of the surgery, and then went on to try and repair the atresia. Many were praying for the Doctors to have clear minds and God once again answered. We have been so blessed to be held in Gods hands by your prayers and support during this time. Pastor Jeff surprised us in coming to the hospital to be with us and pray over Porter prior to and during the surgery. Then he led us in praise and worship of what God had done. It is an amazing walk to be in a valley and then to be elevated to the higher ground that only God provides. Our deepest appreciation to Pastor Jeff and our church staff for sending him to support us in this way. Also present was my Uncle Doug who leaves tomorrow for Sabu, in the Philipines. He took time out of his last moments in the states to stay and pray with us. Thank you all so much. We still have some hurdles to clear and ask again for your prayers. We ask that there will be no infection and that the healing will take place quickly and completetly. We saw Porter at post-op while he was still under sedation. He is under complete monitoring and was resting comfortably when we left. We will return this evening to see how he is responding. Again, we ask that you join us in an offering of praise to our Heavenly Father. We know that God does not always answer in the way that we would like, but today, we have been shown the merciful hand of God. May God be Praised!!!!!!!!
 Todd -   08/29/07 08:23 pm
I talked with Paula earlier tonight and she shared that she had held Porter quite a bit today. He seems to be in good condition heading into the surgery on Friday. He is around 6 lbs. 5 oz. the last I knew. On Tuesday, they changed the suction tube out to a smaller, more flexible tube. It is no longer taped on to his skin, but to a plastic brace that keeps the hose more centered and secure. He seems to tolerate this as if there was nothing there. Paula met with the surgeons assistants this afternoon and they explained some of the things that may take place in surgery. It sounds as if they will keep us informed as to the progression and if they should have to change directions. We were told that there would be other surgeons in the operating room that are working on their Fellowships, but they are only able to observe and consult. We have been told many wonderful things about Dr. Ostli and that he is an excellent surgeon. He is very confident that this is a surgery that can be done. I will be heading back to KC after work tomorrow to see Porter and the rest of my family. I hope that I am not sounding like a broken record (for the younger generation that is reading this - a record is an early type of CD), but we would ask for your prayers on Friday morning. Surgery will be sometime after 8 am as far as I know. I will be away from computer access to update this, so we will try to update our Pastors. I might be able to access this page later in the day. Please pray that if possible the esophagus would stretch enough to be connected. We still know that if God wants to do this that He can. May our Heavenly Father receive all the glory for what He is about to do. In Him,
 Todd -   08/28/07 11:48 pm
This will be a short update as I have driven back from KC and am home for a few days. The surgery has been set now for Friday morning. Porter has been doing well and is very alert during our visits. We have been blessed with wonderful nurses and other staff at Mercy. Paula and the kids have stayed with our friends and may come back with me next Monday. Will try to fill in the gaps tomorrow.
 Todd -   08/27/07 01:56 pm
Yesterday (Sunday the 26th), Childrens Mercy came to Wichita in a plane to transport Porter to KC. All went well as we saw him being placed in the travel incubator for the trip. For any of the Wesley staff that may be reading this, we thank you for your excellent care that you provided our son. We observed right away that Porter was in very capable hands. We hope to eventually get him past all this and bring him down to see you. Paula and the kids (and myself), followed in the van to Olathe where we have some dear friends that are sheltering us at this time. Once we arrived and got the kids setteled in, Paula and I went on in to Mercy to see how he was doing after the trip. I thought that I had printed fairly good directions, but failed to allot for driving in the dark, road construction and one way streets. We did end up making it and got to see him in his new area. He was a little upset at first, but settled down later on. We finally left his bedside around 1:00 a.m. This morning we went in to try and meet with the surgeon to discuss when, why, where, etc. We had a short discussion with one of the Doctors that was making rounds and said that one of the doctors will be getting with us to discuss in greater detail all that will be taking place. It is unconfirmed, but we believe that something surgically is scheduled for Wednesday. They have a few tests and x-rays that will be done today to confirm what needs to be performed. Although they (Childrens Mercy) see only 2 to 3 of his particular condition a year, they are very confident that something can be done to help him. He may have some lifetime issues with eating, but it is something that we will learn to deal with. This morning, I held him and he was very content and seemed very comfortable. We will be going back this afternoon/evening to check on him once more. I know that I have gotten pretty "wordy" in this update and hope that it gives you some idea of the things to pray for. Many things have happened throughout this time that I would love to share with you at some point as it demonstrates God's incredible ability to move in all areas of our lives. Many of you are familiar with the "Footprints" story, where the person is seeing the two sets of footprints and then only one. I would like to make a new picture of that scene with 13 sets of footprints and then it turns to one. It reminds me that we serve a big God and that he will carry us and keep us in his protection. Thank you for praying.
 Todd -   08/24/07 11:13 pm
Paula and I have now decided to have Porter moved to Childrens Mercy Hospital in Kansas City for his next surgery. After reading several documents and speaking with many family and friends, the peace that we had been lacking for several days is now back. We realize that he still faces some difficult challenges in the coming days, but have made a decision that we are as comfortable with as much as possible. We don't know the exact details yet for the transfer, but it will be soon. It may even be as soon as Sunday. Porter would be sent either by ground transport or helicopter. Not sure how this is decided or when. We will follow once he leaves Wesley and meet up with him at Mercy Hospital. We did see him tonight and had a great time as he was awake the three hours that we were with him. He was really looking us over and of course, was always drawn to his mothers face. He has put a few more ounces on and has been a good boy from what we have been told. One quick word about his care at Wesley, it has been a comforting experience. We have asked many of the nurses about their work and they always respond that they love their job. It shows too, in the way that they care for those little lives. We have been very appreciative of the medical service that has been provided there, but will move to Kansas City for this next operation. These next few days will be pretty hectic. Please still be praying that God will give us a miracle, in that Porter's gap size will be close enough for a primary repair to be performed. If God moves in a different direction, we ask for prayer that Porter will be in the best possible condition for the gastric pull-up. I would also ask for your prayers as we will be traveling to and from KC over the next several weeks. We are still working out the details for various matters of the home environment and being at Porter's side. I am thankful for all of you for your intercessory prayers on our behalf, but I would also like you to know that I am asking God to bless each of you. We desire to be a witness wherever we go and to whoever God puts in our path. Thanks for being a part of this journey.
 Paula -   08/23/07 10:51 pm
We have had an interesting day. Todd spent alot of time speaking with surgeons and nurses. Children's Mercy (Kansas City) has offered us another option, they would go into surgery with the hope of pulling the two ends togther, if it deemed not feasible, they would immediately go to plan B, which is a procedure called a gastric pull-up. They would pull Porter's tummy up until it reached the esophagus end and attach the two. It is a better option then the Colon interposition, but still has it's risks. Mercy agrees with Wesley on not attempting the stretching procedure that Minnesota suggests. All of the procedures seem to be controversial in some respects. At this point we are leaning toward the procedure that Mercy has suggested. Porter needs to have something done pretty soon. The tube down his throat is very irritating and the longer he doesn't eat through his mouth the harder it will be for him to re-learn to accept food through the mouth. Obviously any major surgery is a concern, especially in such a small baby, but we know that God loves Porter even more than we do, so we ae trying to rest in God's gift of peace. We are asking you all to pray that when they open him up for surgery they will find a short enough gap to repair on the spot. This is called a primary repair. Porter could have a normal ( as in eating normal food, ect.) life with this type of repair. Also we ask you to pray for wisdom for us. Is Kansas City the right route to go? We want to be where God wants us to be. Spiritually as well as physically. Please also pray that we will be able to juggle our lives with the concern of the welfare of our other children. We need all of you. You are a very important part of Porter's and our lives. We could not walk through this situation without you. Thank you!!!!! Also, Porter had a physical therapist work with him today. Apparently he is favoring turning his head in only one position. She has taught the nurses how to work with him and will also show us what is the best therapy for him. Please pray for this situation, also. God be with you.
 Todd -   08/22/07 11:37 pm
Philippians 4:6-7 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. (7)And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. This particular scripture has come to my mind several times this past week and the more I study it, the more I realize that it is loaded with God's wisdom. In it, He gives us a path which we can choose to take and will have a desired outcome. However, the events of today have made it difficult to adhere to this path. Earlier this morning, Porter's surgeon called Paula to say that the gap was measured to be 3cm. He felt this was too long to stretch into place, so he was preparing to take a section of Porter's colon and use it as part of the esophagus. This is not the best solution, but he felt was the only option we had available. Surgery was to take place on Friday and would take an estimated five hours to perform. This operation is very complicated and has high risk associated with it. Paula and I respect the surgeons opinion, but felt that we needed more time to gather all the infomation possible to make the best decision possible for Porter. Therefore, we asked for a delay in the surgery until other options could be examined. One of those was a procedure to "stretch" the esophageal ends over a period of time to (hopefully) eliminate the gap. This would ensure that only esophageal tissue would be used, which is the best solution. We are currently waiting on a response as to whether this is a possibility. The issues here are that we would have to trasport him to the University of Minnesota Medical Center and wait for the stretching to be achieved, followed by surgery to connect. I am also reaching out to the surgeons at Kansas City Children's Mercy Hospital for an opinion and/or possible service. We have decisions that need to be made soon and are open to others opinions. If you have any wisdom to share, please don't hesitate to share this with us. We know that God has a plan laid out, we are just trying to find out how we fit into it.
 Paula -   08/21/07 08:16 pm
Today Paula, Tobin and Allie were able to hold Porter for several hours. He has gained more weight, He is up to 6lbs. 1 oz. The surgeon was still unavailable, but we got a call tonight from his partner. She said they could not gather the info. they needed from yesterday's test, so tomorrow they would try to retest in a different way. They could tell that Porter's tummy is nice and big, which is a really good thing. This Dr. reminded us that Porter's case is a complicated one and that they would have to really study the situation before they would come up with a plan. We are praising God that Porter's tummy is growing and asking God to reveal to the Dr's tomorrow what they need to know, and that it would be wonderful news. We are still praying for a small, repairable gap between the tummy and esophagus. We know God is in control and that we are to be anxious for nothing. We are trying to honor Him by the way we respond to this trial. We pray He finds us worthy. If there is someone(s) that needs the good news of our Savior, we want to be ready and prepared to share Him. If that is the reason we are in this situation, may God find us willing and obedient. Thanks for being our prayer partners. God is listening, as usual. We are excited to find out what He wants to do with Porter's life.
 Todd -   08/20/07 09:44 pm
Paula received a call this morning indicating that the dye test was going to be performed. It didn't take place until this afternoon and we were to be updated by the Doctor this evening. However, they were called away to another emegency and have not yet contacted us. So, we will need to find out the details sometime tomorrow. I did get to speak with his nurse and he did fine during the procedure and has had another good day. Hopefully we will have more specific information tomorrow.
 Todd -   08/19/07 08:19 pm
Dear Friends and Family - If you are reading this, I assume that you have made it to this site which is dedicated to "reporting on Porter". I first would like to thank my brother-in-law and TkFast for setting up this site for us so that we can get information out to all of you. Some of you know some of the details of what has been happening this past week, but please allow me to briefly update those that may not have received all the information. As was stated in the first posting, there were additional tests that needed to be checked out in regards to his kidneys, spine and other areas. Sonograms have been performed, as well as other tests and show no other abnormalities. So, as of this time, the esophageal issue is the primary concern. This past week has been focused on growing him through the routine feedings. He was started out on a specified amount of milk and then evaluated on the residuals. If the residuals were less than 6cc he would have an increase in the amount of milk. He has steadily progressed in his feedings and in gaining weight. He is currently around 6 pounds and takes in his milk with no complications. This past week has also given us more time to actually hold him, although, he is still hooked up to monitors and the dreaded suction tube. It is difficult to be able to hold your child, but not be able to take them home with you. He also seems to respond to Paula, in a calming kind of way, when she holds him and talks to him. Tommorrow holds some of the answers that we have been waiting for. That is, they will be performing a kind of dye test (my term for the procedure) that will show on X-ray what the size of the gap is in the esophagus. We have been praying that it is less than 3 cm, as this is (as we understand it) repairable. If not, we may need to wait for additional growth or look at some other options. We do ask for your continued and specific prayers concerning this gap. Porter has mostly good days and has become more aware of things outside of his crib. The nurses put a bouncy chair in for him to sit in on occasion and he seems to enjoy taking a look around. At this time, this site is not setup to receive comments, but you can still e-mail us. We can never say thank you enough to all of you for your kindness you have expressed in so many different ways. Some of you have known us for years and some of you we have not yet met, but we are honored by your care and concern for our new son. There will be additional pictures as we submit them. Todd and Paula
Hi everyone! For those of you who have been wondering what has been happening with us lately, I can hopefully fill in some of the blanks. As you may know, Paula had an emergency c-section on Sunday evening at McPherson Memorial. Due to an increase in amniotic fluid for some unknown reason we got in touch with our Doctor and had been monitoring the situation. When Sunday evening came around, Paula's contractions kicked in and it was decided to perform the delivery that night. All went well during the operation and it was quite a sight when the amniotic fluid was released. After the ordinary tests were performed, he was brought in to be with Paula and took to feeding right away. However, he started choking some and required some bulbing to remove what was thought to be amniotic fluid from the delivery process. This did happen at each successive feeding and Paula became concerned, so she asked one of the nurses to watch as the feeding began. He again started choking and they took him out to bulb him. At this point they decided to check in with Wesley and it was decided that he should go there. After Porter was transported to Wesley, Paula and I arrived soon after to meet with the Doctors. Many things were discussed and some of it is a blur, but it basically comes down to the fact that there appears to be a detachment of the esophagus somewhere in his body that is preventing anything being able to get into his stomach. Several terms have been given including this one today, which is "esophageal atresia". There are some potential "other" conditions that appear with this sort of thing, including some issues with the heart, kidneys, thumbs and spine. His heart has been checked and it was found to be fine. They are scheduled to check the kidneys on Friday and the spine sometime after that. The thumbs have no appearence of any issues either.

This afternoon, Porter underwent an approx. 1 hour operation to install a feeding tube into his stomach. Surgeons met with us afterwards and said it went very well. He was put completely under and with a ventilator and as of this time they have left it in. Unless he would get agitated with it, they would like to leave it in overnight. Report from the nurse tonight (11:45pm) was that he was doing very good and resting comfortably.

I would like to take this time to let you know how grateful Paula and I are for the prayers that have been lifted up on our behalf for this precious child. We have felt a strong presence of God's peace throughout this entire birth process and we acknowledge that our family and friends prayers have surrounded us during this time. Pastor Darrell and Kate (and Immanuel!) happened upon us prior to the operation today. What a testimony of how God provides His people to meet our minute by minute needs. The time of sharing and praying was what Paula and I needed prior to Porter's operation.

We shared this with Pastor Darrell and Kate that God has already provided numerous people to which we were able to witness. Porter's life has a plan, and part of that plan is to use his situation to glorify God. We can't believe that we were chosen for such an awesome responsibility-to share God's love, peace and gift with others. Porter at 4 days old has been used by God more than some people get to be used in a lifetime. Praise God!!!!! We ask that your prayers would be that God would be glorified, and that each one of the medical issues listed above would be the best of circumstances, and that Wesley NICU would witness the miraculous healing of Porter-completely and quickly. Please know that we don't expect emails with questions, comments, verses, messages, inquiries, ect., but would LOVE them if you feel lead to do so. We will try to leave up-dates often and respond as often as we can to each message. Your prayers are our lifeline, and your precious gift to us. Thank you from the bottom of our hearts.


~ Todd and Paula and family
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