Happy Monday 9/29/08

Today was lab day. Kensley's labs looked good. And, for all of you who were praying we me, God is good. Her stools have looked better today than they have in several days. She is napping well and eating well too. So we will see how today turns out. Tomorrow is Clinic day! This journey that I am traveling with Kensley is so consuming. I am not even sure that is the right word. There are times of heartbreak, joy, fear, frustration, triumph and defeat. Sometimes I can not image being able to handle all that this chronic condition will require. Sometimes I just want God to miraculously fix Kensley. Sometimes I just want to go back in time and erase it or fix it or something. I can not do anything to change our situation, our journey. The question is where will our journey lead, what will it teach us, how will it touch others. I am often overwhelmed by the daily needs of this condition. The medicine, the tubes, the limited feedings sometimes get to me. All I know is that I love this little girl and I hope she can overcome these trials. Praise God, HOPE, hope always gets to me. It is all I have. "(Love) always protects, always trusts, always hopes, always perseveres...And these three remain: faith, hope and love. But the greatest of these is love." So, here I am. I hope that I can encourage you to love and have faith that God will see you through. Hugs from Heaven, Tana

Good and Bad Days 9/28/08

Today is Kensley's 5th month birthday. She is officially 5 months old. She really looks great and things have been going well. The doctors told me that there would be good days and bad days, and plateaus. I wouldn't call this a bad day, but maybe a mediocre day. The day started out OK. Kensley has been stooling a bit more lately and they have been more loose and liquid than I like. She has still been gaining weight, but today she put more out than she took in. Tomorrow (Monday) we have labs drawn and I will have to have the NG tube re-inserted. The one that the home health nurse put in is too short. It is placed correctly, but the part that extends out of the nose does not hang down long enough so that Kensley can not roll on it or pull it out. But you know I feel like tomorrow is going to be a good day. Why? Because God is already there. I am going to pray right now. I am going to call upon my Father God, the great creator and wonderful provider. I am going to pray for all those I know of that need the help of God and I am going to ask for Kensley to be healed and for her stools to slow down and thicken. And then I am going to believe that it will happen. It will happen. I will not let the bad days or the bumps rattle my faith. Two of my favorite movies are "Father of the Bride" and "Father of the Bride II". While Kensley was in the NICU and everyone told me that she would not make and if she did she would not have much of a life, on the few times that I got to go home for a shower, I would drive by a house that reminded me of the "Father of the Bride" house. This house is as picture perfect as the house in the movie where the wedding was held. Well, I would drive by that house and say to myself that I would see Kensley grown and Kensley married. I would dance at her reception. It was my image of faith. I can picture her wedding now. I will see it. I am believing for it. What are you going to believe? If seeing is believing, then start seeing. Put that image in your mind and start believing. Believe with me and we will see miracles happen. Hugs from Heaven, Tana
Prayers: Kensley, Caed, Jake, Mellisa, Lee, Laura, J., Kaydee, Cooper and all the un-named people that need the special hand of God in their lives tonight. And if you don't mind pray for me and I will be praying for you. I need all the help I can get.

Say God Bless you! 9-26-08

As I set here writing, my nose is dripping! Pretty image right. Yes, I guess I have a cold. No fever, but I feel rotten, and my nose is running off my face. Needless to say, today has been a hard day. Besides being sick, Kensley had to have her NG (nasal gastro-intestial) tube changed today and her central line dressing. The wonderful thing is that today we had Beverly the NICU nurse as her home health nurse. She is really great. I didn't get much sleep last night, you see Kensley decided about 4am that she didn't want the NG tube in her nose anymore, so she yanked it out. This was OK because it had to be changed anyway. You should have seen her smile. The home health nurse didn't get here until 10:30a so I took some pictures without the tape and tube. It was so wonderful to she her face. I cried over the fact that I don't get to see her face uncovered everyday, but I know that God will someday give us that chance. Enjoy this face, it is the reason I get up each morning healthy or sick. Hugs from Heaven, Tana

Neat Freak 9/25/08

My husband can be a bit of a neat freak. He rants and raves at the kids to clean their rooms and toys. This worries me, because it is difficult enough to keep the house tidy with a 6 year old and a 10 year old, much less a special needs infant. Trying to keep your house perfect can put a lot of stress on a person, and I don't know if I can handle it and Kensley and Kaydee and Cooper. The point of this story can be summed up with some thing one my angels wrote to me. "Remember to get some rest and lay it down for God to pick up." I think my friend may have figured it out. Some things in life are more important than perfectly tidy houses, or perfectly coiffured hair, or perfectly fancy clothes. Sure, every one of us should strive to keep things tidy and clean, "cleanliness is next to Godliness". But loving, playing, and spending time with your husband and children is and always will be more important. So, instead of picking up stress and worry, remember to "lay it down and let God pick it up." No one on earth is perfect, but God loves us perfectly no matter what flaws we have. Hugs from Heaven, Tana
Prayer Requests:
Pray for Jake who made it through his transplant surgery very well. He is making a remarkable recovery, which tells me that God had a plan for this little boy. Praise Him and pray that Jake continues to make strives. Pray for Caed so that the doctors may find a solution to his stooling issues. Caed is such a wonderful little boy. His personality makes anyone who meets him fall in love. He may be a little boy, but he has a great big voice that will one day tell a great big story of healing to the glory of Jesus. Please continue to pray for Kensley. She has been stooling more with more liquid stools. This is not good. She needs to start absorbing more and pooping less with thicker stools. As always, I pray for blessing to all of you. I know that God is listening and that the love that passes through this small part of cyberspace makes Him smile.

Feeling the Pressure 9/24/08

Well, as J. and I discussed the Omaha exit strategy, I could tell he was beginning to feel the pressure. J. has new territory responsibilities now that his company and another have merged. It is a good thing, because there were several people who were offered a severance package and not a job, but now he will have to learn a new territory. Luckily most of the customers are acquaintances and well known to J. So, the pressure list begins with job pressure. Then add to that pressure the fact that we have to bring Kensley home away from her team of doctors. Plus, every time that we bring her back and forth to Omaha she loses several ounces and feels bad for two days. I think we will have to discuss with the doctors the long distance appointments and J. needs a more exact schedule so that he can plan his business trips around the appointments if possible. As hard as it is for me to feel so separated and left out of Kaydee's and Cooper's lives, it is also hard for J. to feel so left out and separated from Kensley's care. I guess this is one of those times that we have to remember to pray for every little decision and every little step that we make. I need more patience and understanding and decisions that are not only kind and loving but logical and efficient. No pressure there! The simple truth is that THIS IS HARD. The expense, the separation, the many decisions all wreak havoc on our lives. So now it is a time for a breather, a moment of silence, or another way of putting it...TIME TO LET GOD IN. Try reading Proverbs 3:5-6. So, through it all I feel God's hand on my back supporting and pushing me through. Sometimes I get a little depressed about how far we have to go, and I forget how far we have come. Thank you God for the road we have already travel and for teaching me so much about myself, my husband, my children and you. Hugs from Heaven, Tana
Prayer requests:
Pray for Kensley, Caed, and Jake. Pray for everyone who is cleaning up after hurricane Ike. Pray for J. and I as we make the transition back to Lubbock. Blessing to all who read this.

The Sun is Shining 9/23/08

It is Tuesday, doctor day, and it is a good day. Kensley had a good appointment. Her labs look good and she had gained to 10 pounds and 14 ounces. We will be making lots of changes this week in Kensley's tube feedings and bottle feedings and TPN. she remains a ray of sunshine on rainy days. Gosh I love her. Baby love is one of the best feelings that God has ever given me. I guess today I'm just a big pile of love. I hope that everyone who reads this feels the love today. Hug someone close to you, forgive someone for whatever mistake they may have made, just love someone today. It is always worth it. We may get to come home around the 11th of October, but we will have to travel to Omaha once a month for a while. If we don't have any complications and all goes well, we will get to manage Kensley's case from Lubbock. So, pray for us, because at home there will be lots of distractions and in Omaha it has all been about Kensley. I hope she takes the change well. For now we will keep praying for progress and for blessings to all of you. Hugs from Heaven, Tana
Prayer requests:
Continued progress for Kensley, Caed, and Jake.

Monday Morning 9/22/08

I did not get to blog yesterday. I took J. and the kids to the airport at 7:00am and cried until noon. I just couldn't help it. I missed them so much, but I know that Kensley is improving. She had been pooping a little too much, so please pray for her to slow down. Every time we make a formula change she has to adjust to it. She weighs 10 pounds and 9 ounces and has remained there for three days. This is a big change for me because she has been gaining weight every night. I hope we have not reached a plateau yet. The doctors tell me that while on the IRP program we will reach plateaus and have to make changes at that time to keep growing. I was worried that the family visit this weekend was too much for her, but so far her labs look OK. The fact is that this a a chronic condition and we will live with this for the rest of our lives. Now having vented all my worries, let me tell you this. Worrying is a part of the human experience. We all do it, mostly over things that we can not change or fix or handle. Some people even let worry turn into fear which leads to regret. They worry so much that they fear doing something, so they do nothing, and regret it for the rest of their lives. Every morning I pray for Kensley, some times with tears and worry in my voice. Then I say the words, "It is in your hands Lord, and I trust you." Some times I think I am just giving those words lip service. After all what could be harder, but I know that trusting the Lord is the only thing getting us through this. Maybe those last words really do the trick, I TRUST YOU. 'In God We Trust' is even on U.S. currency. If you truly trust someone, can you really fear and worry? No. So, here I am in Omaha Nebraska missing my husband and Kaydee and Cooper, knowing that my home and kids will have to go through grandparent withdrawal once I get back, knowing that I am only taking the first of many steps and trails with Kensley, but trusting. Trusting that my children are in good hands at home and here because God is guiding us all. I can do all things with Christ who strengthens me (Philippians 4:13) So, if you are worried about something, or afraid to do something, just trust Him and go forward. Sometimes you have to walk the walk to understand the talk. Hugs from Heaven, Tana
Prayer requests:
Please pray for my mom and my mom-in-law and dad-in-law as they have given up quite a lot of their time and life to help our family go through this. Please pray for Kensley that she might continue to adapt and absorb with fewer and fewer stools. Please pray for Caed who is dealing with a bacterial overgrowth in his intestine. We pray that the antibiotic therapy will be successful in dealing with this issue and he will no longer have diarrhea. Please pray and praise God for the blessing of a new baby for my friends Gery and Julie. They are wonderful people and will make wonderful parents some time in March 2009. Praise God for Jake and pray for his continued recovery from a heart transplant. Pray for doctors that do their job, not for money or prestige, but for the love of helping people.

Weekend Fun 9/20/08

I can't believe that it is almost time for J and the kids to head home, they will fly out in the morning. The last few days have just flown by, but boy was it great to have everyone here together. We have had a busy few days. We celebrated Kaydee's birthday with a cookie cake and presents at the apartment on Thursday night. We went to the zoo on Friday morning and then just hung out at the apartment on Friday afternoon and evening. This morning we went to the park and played with Caed, our friend from Texas. Then we headed to the mall for Kaydee's big birthday present, she had her ears pierced today and she was so excited. This is something she has been looking forward to for several years. Overall we had a great few days and I am sad they will be going home tomorrow, but I also know that this means that my stay in Omaha is about halfway over (we hope). Kensley continues to do well as she weighed in at 10 lbs 10 oz's, this morning. She has had more stools the last two days, which we are a little concerned about, but we just changed her formula concentration and cut her TPN down. I am hoping that it will just take her a few days to adjust to the changes again. I am cutting this update short again, so I can spend as much time as possible with Kaydee and Cooper. Hugs from Heaven, Tana

(Birthday Fun)

(At the park with our friends Caed & Lori)

(Let the Piercing Begin)

(The finished product)

(Kensley Video)

Prayer Request


Please continue to pray for Kensley and Cade and their team of doctors here in Omaha. Also please keep Jake and his family in your prayers. I have not received an update today on how he is doing and please pray that J. and the kids have a save trip home tomorrow.

Family Reunited 9/19/08

Yesterday I picked J., Kaydee and Cooper up at the airport. They came up for a weekend visit. I couldn't believe how wonderful it was just to see them standing there at the airport, and when I finally got my arms around them, I did not want to let go. Today we all went to the zoo. The Omaha Zoo is really good. Kensley even enjoyed it. Being together is wonderful, a little loud and crowded, but wonderful. The update on Jake is that the transplant went well, and is in that critical recovery time. Thank you all for following us through this journey. We love you all. I am cutting this blog short so I can spend as much time as possible with J. and the kids. Hugs from Heaven, Tana

(Kensley Happy to see Kaydee & Cooper)

(My Whole Crew at the Zoo)

(showing daddy how I eat solid food)



Prayer requests:
Travel mercies for J., Kaydee and Cooper as they go home on Sunday morning. Pray especially for Caed today as he had his weekly dressing change today, and because it is a totally different nurse and system and a totally different way of doing the change. This is very traumatic for a five year old. Pray hard. Pray for Jake as he continues to recover and for the donor family as they grieve. God bless you all.

Put your Faith Where Your Blog is...

OK believers, it is time to pray. As I sat here watching Kensley take a peaceful nap I received a call telling me that little Jake is being prep-ed for his heart transplant. I simply cried for joy and grief. This is a miracle and we need to pray for everything to go successfully through the surgery and through the long recovery process. Pray for strength for Jake's mom, and dad, and big sis. It is difficult to have any member of your family undergo surgery, but to give your 1 year old son over to the doctors must be especially difficult. Jake will have to take anti-rejection drugs for the rest of his life, but he has a chance at that life now. Pray for the doctors who will perform the surgery, may the great physician give them blessed knowledge and skill. Also, I ask you to pray for the donor family. I do not know who they are or under what circumstances this gift was given, but God does. Pray for their grief and generosity. I know it must be very hard. When I told my mother the news she said simply, "Life can be so hard." She is correct, but it is so beautiful too, and as believers we end our time on earth with Jesus leading us on to something even more beautiful. Praise God for the beauty of life on earth and in Heaven. Hugs, Tana

You are not alone! 9-17-08

Have you ever heard the phrase "Bible Thumper"? I am not sure what exactly is meant by the phrase, but here is how I interpret. When ever I am feeling a little lost or confused or angry or frustrated, I simply pray "God please speak to me through your word" and then I flip through the pages of one of my Bibles and let some thing draw my attention. The verses I am drawn to always seem to speak to me of a need. I feel like I've been thumped on the head like a V8 commercial. Well, if you read yesterday's Blog you will know that I was feeling restless and anxious yesterday. Here is where I was led, 2 Kings 4:8-37 and 8:1-6. I am reading out of the Women of Faith Study Bible NIV(best $25 I ever spent at Wal-mart). Well this story is about the Woman of Shunem. We never learn her name, but most of us could just fill in our name and it would make perfect sense. She has been disappointed in life because she is barren. She is wealthy enough, she is generous and kind, living a good life, BUT because of disappointment she feels that she can trust no one but herself. A real do-it-yourself-er, a gal after my own heart! Let's face it moms, we have been let down a few times so we just stop expecting people to help us. And sometimes we feel let down by God. He didn't answer our pray or immediately fulfill our need, so we decide to do it our self, depend on our own abilities, and stop needing others, stop needing God. Well, for all of you who have tried this, I have one question..."How's that working for ya?" It all boils down to faith and sometimes our faith alone is not enough. This is a lesson that I live with everyday. Kensley's life, her condition, is out of my control. There is nothing I can do that will make it go away. She will not escape this without the constant reminder of the frightening start she had in life (a five inch scar will always stretch across her abdomen) and she may have certain health challenges for the rest of her life. Her life is in constant danger because of the central line that allows her to receive intravenous nutrition. BUT, God gave her back to J. and I. Just before her third surgery we prayed to God telling him that we understood that she was His child first. He is in control, and we would abide by His will. Well, I guess I have to give Him control everyday, because I try to take it back everyday. It really is about trust and faith. The Shenum woman had probably prayed for a baby, but she never had one. Yet she remained kind and generous. She provided for Elisha the prophet, giving him a place to stay and food. In return Elisha asks what she needs. She says nothing because she doesn't want to expect any help from anyone. Then Elisha offers to pray for a child for her. She tells Elisha not to get her hopes up because she does not believe that God will help her. Her faith was not enough. Thankfully Elisha's was and she had a son the next year. Sometimes our faith is not enough and we need the faith and prayers of all the people who love and support us. POINT: Thank you for loving and supporting Kensley and I with your faith and prayers. I know that sometimes my faith has not been enough and your prayers and faith have held us up and seen us through. Kensley is proof of that! By the way, she tried her first bites of rice cereal. Wow! God is great. Thanks be to God and too all of you. Hugs from Heaven, Tana
Prayer requests:
Southeast Texas Residence as they recover from Hurricane Ike.
Caed as he continues to fight the battle of SBS. Jake who continues to be strong in his wait for a heart transplant. I would also ask each of you to pray for your churches and pastors. And, our country as we go into the election. May God guide the leaders of our great nation, present and future.

Cabin Fever! 9/16/08

Cabin Fever! Boy have I got it. I feel very restless and anxious. Probably because today is Kaydee's birthday and I am not there and today is Doctor Day, which is always a hectic morning. It was a great appointment. Kensley is up to 10 pounds and 5 ounces. Her labs look good and her IRP team was very pleased. I have to tell you about Dr. Mercer. It is so wonderful to meet a doctor who isn't just doing a job, but his life's work. Today I had Kensley on the exam table (cute purple outfit and purple headband included) when Dr. Mercer came in and kneeled down and took her little hand between his fingers. He just held it and talked to her. God Bless Dr. Mercer. He has young children of his own and he wants Kensley to do well, not to make his stats better, but to make her better. Then there is Brandy, and Brandi, and Valerie, and Dr. Grant, and many more. They are great. Praise God that I am here! Now having said that, I am so ready to get out of this apartment. I want to go home and, I am craving Mexican food. I have been told that it is OK to take Kensley out, but with her tubes and feeding I have been reluctant to do so. We are doing so well that I don't want to take any chances that might make our long term stay longer. I am sooooo tired of drive thru food and frozen dinners and CSI on TV (Do you know how many CSI and Law&Order re-runs there are everyday?). YES, I am whining! Guess I'm human after all. Don't worry though, I've got more than human help. His name is Jesus. AND, J. and the kids will be here on Thursday (which is probably why I feel so anxious). There is always a blessing around the corner! It's just hard to wait til you get around the corner. So if something is making you restless or anxious, thank God for what you have now and keep waiting for what is just around the corner. Hug from Heaven, Tana
Prayer Requests:
Pray for Kensley's continued progress, no infections or feeding/stooling issues. Pray for our precious little friend Caed (curiousaboutcaed.blogspot.com). He had a scope performed today, and although I am sure the doctors here gave the best of care, it is always scary to put a five year old through any medical procedure or test. Pray for Jake, who is doing better, as he waits for a heart transplant. Pray for Melissa as she battles Lyme disease and MS. And please know that I pray for everyone who reads this blog, that you might be forever blessed and feel the love of Jesus Christ in your life.

Sunny Saturday 9/13/08

Today was a beautiful day. The sun was shining, which was nice considering it has been raining for two days. It is tree-filled and green here, which is VERY different than Lubbock, Texas. BUT, I miss those dry, flat, windy plains because that is where J., and Kaydee, and Cooper are. I don't know why the weekends make me more sad and lonely for them, they just do. Kaydee is, like most ten year old, ready to be a teenager. Yet, she still plays with her dolls ever so often, and loves her American Girl doll. I remember how when she was 18 months old we would go to Walmart and she would sit in the basket and just squeal at the top of her lungs and then smile. People would come around the corner and look at me to she if I was doing something wrong and Kaydee would just smile from ear to ear. I couldn't make her stop. She was just full of life and joy and she could not contain it. Cooper is just plain cute! He has the funniest sense of humor. One Sunday he decided that he did not want to go to the church nursery, so I kept him in church with me. When communion came around, I gently moved around him and did not let him have any. After communion was all gathered up and done, he sat beside me obviously disappointed. I ask him what was wrong and he said, "I don't like big church, they don't share their snacks" We had to leave the sanctuary because I was laughing so hard. God is so good. He blesses every day of my life with the love of my husband and children. Already I can see Kensley look at me with such love and confidence. Thank you God. Thank you God. I wish each of you love in big and small ways, in big and small people, and always in God. Hugs from Heaven, Tana
Prayers:
Continue to pray for Jake, and Caed, for a dear lady named Melissa, and for Kensley. The Holy Spirit knows what to pray for, so leave it to him and know he will go perfectly to God with our needs and requests.

Hoping and Praying (9/11/08)

Kensley is 9 pounds and 13 ounces today. She is sleeping about 6 hours through the night, which is nice. Her intestines appear to be absorbing all they can, they are just not long enough to get it all. We are blessed that she is so young, because her intestines have the opportunity to grow and compensate more than an older child or adult's would. The adaptation process apparrently takes up to two years, and she may have to have a lengthening surgery. I pray that we avoid surgery. It would be like starting over on feeding her again. You always hear that God will not give you more than you can handle. That saying is not so comforting to me. I have discovered that I can handle more fear and pain and anger and frustration than I ever thought possible, but still we go forward...very slowly. Patience and hope are the hardest test the Lord has ever given me. But what is the choice. I go forward, praying and hoping, and waiting patiently. I read God's word every time I feel myself begin to worry and I get down on my knees when fear overtakes me. And even though there are times when I do not think I can keep this up, God blesses me. I am never lonely. Kensley smiles and laughs and plays. We spend lots of time just playing on the floor, cooing and giggling together. Maybe all the fear and frustration has been worth it. Maybe all the hoping and praying is working. I know it is. Hugs from Heaven, Tana

Prayer requests:
Little Jake is on the transplant list. I was informed that he did not have an infection. It was a false positive on the first blood culture and the second came back negative. He is however having an issue with one side of his heart. He has received a pump on the other side which is keeping him going until a donor heart can be found, but now the other side is swelling. (Please forgive me if these details are not exactly correct. I am getting information second hand, but it is always safe to pray. Afterall the Holy Spirit knows what we should pray before we even begin) So let's pray that his heart is healed. God is the God of miracles. Let's pray for that miracle and expect it to happen. God is that big! This little baby boy needs a chance to live and love and grow. Pray with me that God heals his little heart so he can be a testimony for the Glory of God through the His son Jesus Christ. Continue to pray for Caed and his whole family as they begin their stay here in Nebraska, that they may find the answers and the healing that God has planned for Caed. Please pray for Kensley to continue to thrive and avoid all infections and illnesses during this critical first year. Pray that her intestines grow longer and adapt and absorb all she needs to grow and thrive. AND thank God. Thank him that we all get to pray together through this blog and that He has seen fit to give us smiling happy babies, blue skies, green grass, people to love, puppies to pet, etc. etc. May God bless each of you.

Little Shoes-9/9/08

Today Kinsley wore her first pair of shoes. They are pink with little stars and soooooo cute. I love baby shoes. I can remember the first pairs of Kaydee's and Cooper's shoes. They remind me of all things wonderful about babies. They remind me of all the possibilities that babies bring. I love possibilities. Where will their little shoes take them? What will they learn? Who will be their friends? What will be their favorite toys? I remember a time just after Kensley went through her third surgery (only 5 days after birth) when I thought that she would never wear shoes at all. I mourned. I mourned all the usually baby things that Kensley would never do, like nursing, or taking a bath in a tub. I cried. I could not talk. I could barely remember to breath. I kept thinking about when I found out I was pregnant with Kensley. I was so happy. I couldn't wait to hold her and play with her and put little shoes on her feet. Now I didn't dare to hope that that time would ever come. BUT it has. And by the way, Kensley nurses every day even though I was told she never would, and I bought her a little bathtub. I cant get her central line wet, but she can kick her little feet in the water. To look back now, it is truly miraculous to be where we are now. Sure, I would rather be home with Kaydee and Cooper and J. with a baby without complications who is growing steadily without any of these health problems...BUT that is not where we are and NO bridge exists to the past. So, instead of an easy rosy road without any bumps, we get to be part of a miracle where wearing little shoes becomes even more precious. As I look back over the past 4 months, all I can think about is "look where we were and look how far we have come". The next question is where will we be in 4 more months. The possibilities are endless because my God is the God of impossibilities. Nothing is impossible to God. Now as I put little shoes on Kensley I wonder where they will take her, and what she will discover today, whose lives will she touch with her story, and how much will I grow as her mother. If you are facing something that seems impossible, go to God. He is your Father and he loves to take on the impossible! Some how He will see you through. Some how He will see Kensley through. Have faith even when it is hard. You never know where little shoes will take you. Hugs from Heaven, Tana
Prayer requests:
Please pray for all those who are in and will be in the path of this season's hurricanes. Please pray for my little friend Jake as he fights infection to get on the heart transplant list. Pray for all those who face the decision to be organ donors. Please pray for Caed and his family as they have come to Nebraska for his Short Bowel Condition also.

Blessed Sundays

I hope that this day was a blessing to you and yours. Today was a good day for Kensley. She weighed 9lbs and 8 oz today and she only had three poops, which is great! For all of you who are worried about me being alone, my Mom has come for a visit. She will probably stay for a week or two. Although she can not handle Kensley very well, it is nice to have some company, and someone to ask,"Hey, can you hand me this or that?" Some one recently asked me exactly what the intestinal rehab program will do with Kensley. Here how our days go...
On Mondays we will go to the treatment center to have blood drawn. Kensley has a central line that goes into the veins near her heart. This is the line that we put her intravenous nutrition (TPN) and lab can also draw blood so that she does not have to be stuck every week. On Tuesday we go to clinic and have an evaluation with the team of doctors. Then they make recommendations for changes in the TPN and formula based on her evaluation and the labs. On Wednesday and Thursday, we just stay at home changes diapers-lots of diapers- and eating and sleeping and growing. I stay in touch with the nurse coordinator (Brandi- a real blessing) all week. If anything needs changing or is going wrong with Kensley, she contacts the doctors and we make mid-week changes. On Fridays, the home health nurse comes and we change the central line dressing (NOT A FUN PROCESS). Everyday of the week Kensley has to have TPN primed, prepared and infused. She also has to have her NG (Nasal tube) feeding prepared and put on everyday. So you can see the days are filled with tasks and tubes and medicine and doctors and nursing, but luckily they are also filled with joy and the coos of a precious baby. The weekends are just lonely though. I miss Kaydee and Cooper so much during the week. I think about them constantly and dream about them when I sleep. The weekends seem harder. I want to be home making special weekend breakfast and just hugging them good morning. Yet, I know that these sacrifices will all be worth it, and someday the tubes will be gone and Kensley will be healed. God is that good and we will keep the faith. Thanks to all of you for your prayers and support. Hugs from Heaven, Tana

Prayer requests:
Caed and family as they travel to Omaha for IRP evaluation. Jake as he holds on waiting for a transplant. Kaydee and Cooper as they go to school and go through their days without mama to help them. J. as he worries about me and Kensley, and Kensley as she grows and her body tries desperately to adapt. Please feel free to give me any prayer requests that you need. Pray for each other constantly.

Hurry up and Weight!

Well, it is Saturday, September 6 and my days are settling into to hurry up and wait, only in Kensley's case it is hurry up and weight, because each day I hold my breath until I weigh her again. I did not get to blog yesterday because my Internet connection was down, but I deeply appreciate all of you who are keeping up with Kensley and myself through this blog. You are wonderful and your love and support, as always, raise me up. For those of you who know me, I love the written word, which is why Paul is my favorite Bible writer and Romans is my favorite book of the Bible. Through out this whole journey I have received beautiful notes and cards of encouragement. I thank God for each one of them and I thank those who took the time to place a little of their heart into those cards and notes.

Kensley is up to 9 pounds and 4 ounces. We go to the doctor on Tuesday (Labs on Monday) and I am beginning to feel myself become anxious. Yeah, I know the Bible tells us to be anxious for nothing but in all things with prayer and supplication with thanksgiving let your requests be known to God Philippians 4:6. That is one of those verses that are easier read than done. I find myself often waiting for the other shoe to drop. That is how this story has gone. That other shoe just kept on coming...

First I am 34 weeks pregnant and Kensley is diagnosed with a diaphragmatic hernia. Tears and devastation ensued. Then the doctors come back and say, Hey we were wrong! It is a better diagnosis of pulmonary sequestration. Ok, I am feeling better, BUT...they were wrong. Kensley is induced at 37 weeks and 6 days. She is screaming and pink and perfect. They take her to the nursery and come back to me saying we think she has both a diaphragmatic hernia and a pulmonary sequestration. Greater devastation sets in. Because she was not given a very good chance. Surgery immediately. At the end of the surgery, our very competent surgeon, Dr. McGill comes out to say, It was the best type of hernia you could have-very small and easy to repair. A couple of weeks in the NICU and she should be fine. Wrong again. Her belly started swelling and swelling. Two days later Dr. McGill does exploratory surgery expecting to find nothing more than a ruptured capillary. Wrong! They missed the double bubble sign on the x-ray that would indicate a mal-rotation of the intestine, and the swelling was caused by dying intestines that no longer received blood supply. Yes, the other shoe just keep on coming!

I remember thinking that I just couldn't take anymore. I couldn't cry anymore. I couldn't hurt any more. I couldn't talk. I just couldn't, but then I talked to one of the many blessing that have entered my life during all of this... Tina. Tina is a mom and a teacher and one of my angels. She has a son who was born premature and soon after had to have a intestine resection (removal of intestine). Eric is now 8, handsome, playful and so smart with no symptoms of Short Bowel or Short Gut(the chronic condition that occurs after a intestinal resection). She told me of a time that she was driving to the hospital while Eric was still in NICU (and the doctors had told her that he would not come home unless under hospice care). She said that she just screamed at God and told him that she hated His plan and that she did not want to do this. That was when she heard that still small voice that often comes to us..."Do you think I wanted to go to the cross, but I did it because I love you" The answer is simple..No, Jesus did not WANT to go to the cross. He prayed so hard in the garden that blood appeared. He asked God if there was any other way, BUT he said "if this is your will..." WOW! I don't understand God's plan sometimes and I never will on this side, but I TRUST HIM. AND even though I may sit here and begin to worry, I remember those words and the wisdom of a Mom who made it through this tunnel. So as I hurry up and wait, I praise the Lord for Kensley, and J. and Kaydee and Cooper and my Mom and My Mom-in-law and Dad-in-Law and my friends and for the doctors and the ability to share this with you and all the love and support we have received. Then I pray for Kensley and all of you. Hugs from Heaven, Tana

Prayer Requests:
Please continue to pray for Kensley as her stools have become more liquid and this is not good. Also, please pray for little Jake, a sweet one year old baby who is in desperate need of a heart transplant. He is in Texas Children's in Houston fighting an infection. He must be infection free to receive a transplant, and he needs a transplant to survive. Pray for his family. Another request is prayer for a sweet little fella named Caed. He is five a wonderful little boy who ironicly has lost about as much intestine as Kensley due to malrotation. He has been suffering with some strange complications lately and I ask that everyone pray that he is able to come to the specialist in Nebraska and get the help he needs.

Kensley, We're Not in Lubbock Anymore

Kensley and I are here in the apartment. It is very strange to be here. I thought I had given up the apartment life when I graduated from Texas A&M. I guess not! Kensley is doing well. She gained 2 more ounces OVERNIGHT! AGAIN! She has been doing this for about a week now. I was a little nervous about the tremendous weight gain, but the doctors are OK with it and they desperately want her back on the growth chart. Well, growth chart here we come. If all goes well, Kensley will be 10 pounds by next week. She has already grown another inch and her head circumference is 39 and 1/2 cms. She has more energy, and she is playing and laughing. Her mental development seems to be right on track, but now the work begins. The goal of the IRP(intestinal Rehab Program) is to get Kensley self sufficient with out causing any additional harm to her liver or other organs. So we have to get off of the TPN(intravenous nutrition) and be able to orally take in enough nutrients and fluids to maintain growth and her daily needs. This is a long process. The month that we will be staying in Nebraska is only the first step in a process that will last for YEARS, but if we can be blessed with no infections or major complications, we will look at Kensley in her kindergarten class and not be able to tell the difference between her and all her classmates. Oh how I pray for that day. Kensley has been such a blessing to our life, as are Kaydee and Cooper, but as I listened to Sarah Palin last night as she said "special children bring special love to your family" I felt the special love she is talking about. It isn't that we love Kensley more. It is just that even with all of the complications of her short life my love is not diminished or compromised in any way. It is unconditional. I supposed that parents of teenager feel the same way when they deal with teenage angst. No matter how many headaches they give you, you love and cherish them anyway. I guess God has blessed me with this lesson sooner that I expected. I hope I remember that when Kensley is 16! I hope we get to see Kensley at 16. I know that all of the sacrifices we are making will be worth it. I have been rather bored today, so I watched TV and was blessed to see a special on the life of Mother Teresa. Wow! Any one who believes woman should not preach, is a person who does not know what preaching means. Everyday of this small woman's life was a sermon, she just never used words. She served and loved others well and so much. She was Jesus' hands and feet on earth. So be faithful and go out there and preach preach preach to everyone who meets you. Use words only as a last resort! I am here in Omaha, remaining faithful that God will heal little Kensley and every day I feel Jesus picking me up and carrying me through another day. I hope that preaches because I haven't any other words to say. I will keep each of you my prayers. Even though my prayer list is long, there is always room for more. Pray without ceasing!
Hugs from Heaven, Tana

Prayer requests:
Father God, please continue to lengthen Kensley's intestine and heal her system to absorb all the nutrients that she needs. Protect Kaydee and Cooper from evil and from harm. Give them strength to make the right choices and to always trust in You and carry Jesus with them in everything they do. Amen

Now Faithful and Free in Omaha Nebraska

We are officially in Nebraska. Kensley, J and I arrived on Monday and had our first doctors visit on Tuesday. Everything went very well and her labs looked good. She has been gaining weight like mad lately (mostly due to the increased TPN levels) but she is getting back on the growth chart. We should be able to start decreasing the TPN sometime next week.

J will fly out in the morning to be with Kaydee & Cooper. He will also do some traveling with his job the next few weeks before he and the kids fly back up here for a weekend visit so we can celebrate Kaydee's birthday. We are still hoping to get back home towards the end of September or at the very latest mid October. Your prayers and encouragement have meant the world to our family.

I always remind myself, that although J. and I are going through this with Kensley, this is HER story, HER testimony, HER scars. She will be the one who tells the world what Jesus is doing to heal her body. J. and I are just the blessed people who get to be her parents, and I can not thank Him enough for the chance to be the mommy of three wonderful children who each make me proud in every way.

May God bless each of you and Jesus lead you every day.
Hugs from Heaven,
Tana