A new year, A new hope 2/3/10

It is a new year and here are some new pictures. Kensley has come a long way since last Christmas. She and I had only been home from our stay in Omaha for 5 weeks. At that point my Mom-in-law and Mom had spent more time in my new house than I had. Wow! what a journey this has been. I can't say that it has been fun, but now I can see all the blessings, and all the things that I have a greater appreciation for. I have learned how essential forgiveness is, forgive yourself, forgive others, forget time and enjoy moments.

"> Yes, Kensley is in the dryer. She was helping me unload the clothes and as quick as a wink she crawled in herself. So, of course I grabbed the camera. The problem is that now every time I try to unload or load the dryer, Kensley wants to get in. Not the best idea.

We were fortunate to be able to take Kaydee and Cooper to the A&M vs. TU game on Thanksgiving. It was Cooper's first time in Kyle Field and as you can see, he was wide eyed the whole night. We had a great time with the kids and racked up some great memories.

We were dreaming of a White Christmas and we got it! There was about 8 to 10" on the ground and 4 foot drifts. Of course Kensley had to have labs drawn in the ER on Christmas Eve, but we all survived and enjoyed a simple and less hectic holiday.

The snow hung around for about a week, and Kensely and the kids played outside a lot.

Although our Christmas was filled with strep and double ear infections, the weeks that followed must have been followed by a growth spurt for Kensley. She ate and ate solid food as if she was normal. It was wonderful. Unfortunately it did not last and we are going through a slow eating period now. As I understand this is very normal for Short Gut kids.

We are currently trying soooooooo hard to get off of any kind of fluid therapy. We got down to giving her 100mls over 3 hours every night, then 100mls over 3 hours every other night, and now we are cold turkey. We have not had fluid for three nights, and we will find out next Monday (lab draws) if she handled the transition well. Please add this to your prayer list. We would love to be able to give Kensley a real bath, or to take her swimming this summer. It would be a dream come true.

Christmas ills 12/29/09

Wow! What a holiday. We were so sick. Kaydee had strep. Kinsley had double ear infections. Both girls were miserable. Kensley had to have two antibiotic shots. Kaydee took oral antibiotics. We were going to go to Grandma's for Christmas, but we were too sick and I was too tired of taking care of everyone to load up and go. So we spent a quiet Christmas at home with snow covered ground, a white Christmas. It was nice. The kids began to feel better on Christmas day. We watched the Nativity Story on Christmas Eve and made our lists of what we would give Jesus for His birthday. On Christmas morning we opened gifts. They loved their presents and we remembered the miracle parts of our year, inspite of the extremely hard few days that had just past. Kensley had been waking up at 2am for the 6 days. Her stools went from 3 times a day to 6 times a day. I am sooooo tired, physically, mentally, emotionally. I pray that her stools will slow down again, and that we can finally get off of her fluids at night. It has been soooo hard. We almost get off and then she gets sick or a cold or something. We really need a break, a time of blessings, and we pray that January will bring that.

Welcome to Fall-What's a little dirt? 9/23/09

It is beautiful in my part of Texas as Fall begins. It makes it bearable to live here considering that in the Spring time the wind blows 90 miles an hour and the dirt from New Mexico seeps through every nook and crack to land on your floor. BUT, what's a little dirt when the today was sooo beautiful with the crispness of the fall air and the leaves just beginning to turn. I have started to notice that our lives are very similar...what's a little poop? HA. Everyday there are 3 or 4 liquid stools that no diaper has been designed to contain, and there are messes, and lots of laundry, all while regular life continues (homework, school activities, shopping, making lunches, football, dance, etc. etc.) BUT, what's a little poop when my children are all so joyful and growing and dealing with all the things we have to deal with as if that is life. YES, joy. It has been a long dark winter that lasted from Fall of 2008 until now. Hope seems to have floated back to the surface. I can finally look at my baby girl and see the 22lb bundle of happiness that she is in spite of all she has been through. She simply is the happiest child-simply happy to be alive. She is soooo normal. BOY, did I worry about this. She has met all of her developmental milestones so far. She is between the 35% and the 50% on height, weight and head circumference. She runs around everywhere. Hugs and loves all of us, including our golden retriever puppy, every day. She simply doesn't know that anything is wrong with her. If she did not have her feeding tube attached for 20 hours each day, no one else would know either. BUT, again there is hope. At this time Kensley has a feeding tube and a central line. The central line allows her to have fluid (basically saline) infused each night. At this time we have weened off of the fluid to 200 ml over 7 hours, and her labs show that she is handling everything great. So, now we will be decreasing the fluids even more, until they will be so minuscule that they will go away all together, meaning that the central line could be removed before Christmas. If you're in a praying mood, that is my request. I can not believe how far we have come or how hard and long this part of our journey has been. This is a chronic condition and there will be mountains to climb in the future, but the whole family has finally broke in the climbing boots and we are much more prepared for trip.

I have to be honest to everyone who has followed any part of our story. From the moment that Kensley came out of the 2nd major surgery(40 hours after birth), and we were told that she lost most of her small intestine, and that the prognosis was not good, I was not living in faith. I was not praying in faith. I was not existing in faith. I was scared, and desperate, and devastated, and angry, and confused, but I was not faithful. I didn't really pray to God with faith that HE could do anything for Kensley. I begged and cried to God...for almost a year. I could not feel the Holy Spirit and I could not really see the progress that Kensley was even making. All I could see was that things were not good. They were messy and gross and scary and impossible. I heard it over and over in my head, "How can she thrive with this condition, How can she lead a normal productive life, How can I keep this type of care up, How can any of us lead a normal productive life while caring for Kensley? AND, Why did God let this happen?" I don't know when my heart began to let go of all the bitterness, and fear, and hopelessness. My depression got pretty bad. I was putting on a good face, saying the right things, but not necessarily feeling them. Inside, I blamed myself for Kensley's condition. I had to give up the job I loved, not to mention the financial strain. J. has had to travel a lot with his job. He carries the insurance that has kept us afloat. So, I am the single mom for at least 3 nights a week, usually more. I became 60lbs overweight. I haven't slept through the night in 16 months. I don't get to go to church regularly anymore, and I have not been away from Kensley for more than 3 hours since she was born. Then there all the regular daily things that have to be done. It is quite a list. I am probably entitled to a little depression. I do know that the only thing that has keep me partially sane has been my daily Bible time. I have just kept reading God's word. Some days I think I was just reading and not even thinking, but I was there and even though there were times when I could not feel it, God was holding on to me. Holding on until my pain lessened enough to start hearing Him again, lessened enough that I could start feeling His love again. You see, God believes in me, no matter how I FEEL. He believes in me and J. and Kaydee and Cooper and Kensley. He believes we can do this. He believes we will not only make it but we will succeed and be better than ever. He believes we will show the world what God does and that many will believe because of it. How do I know this? I kept reading and some things got through...

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" Romans 5:2b-5

"For I am convinced that neither death nor life, neither angels nor demons, neither the present not the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39

I guess I finally figured out that Kensley was not born dying. She was born dying ...to live. Tana

Summer time is almost over 8/19/09

June-Our new puppy! Now I have two girls that poop on the floor.

July -Kensley and Daddy with the cows at PawPaw Free's.

NICU reunion June- Kensley with her Neo-natologist, Dr. Contreras

Summer update: We made it through the summer. Things are rather steady around here. Kensley is 15 months old and running, not walking all over the place, which is a big problem for mom because she is attached to a feeding bag that is too big for her to carry, sooo, I have to follow her every where she goes. You can image how little gets done around here, but she is very cute, and a joy to watch. Kaydee and Cooper have really enjoyed this summer in comparison to the previous summer. Lots of swimming and play dates and fun. Kensley and by necessity, me, were both in the hospital most of last summer(2008). In fact we went into the hospital on the 4th of July 2008, so you can image how excited Cooper was to shoot off fireworks this year. We went to our friend's house and together we enjoyed our $20.00 of fireworks as if they were a million dollar show. Praise be to God. Kensley had another appointment in Omaha on the 3rd and 4th of August. She made the trip well. The appointment was great. Her small bowel series showed little dilation and lots of length. Yes, I said lots of length. Don't get too excited. Her bowel is still short, but it has approximately tripled in length from the portion left after the surgery just after birth. This is what the doctors hope for, but it does not always happen. So, we praise God again. Her bacterial overgrowth does not appear to be out of hand at this time, but her stools are very liquid, about 3 or 4 a day. And we expect that this will be our life from now on. We can not say that we are out of the wood or that we see the end of the tunnel, but we are encouraged. Praise be to God. Tana

Summer Update 6/22/09

Well, it is summertime. The kids are out of school. The pool is open. And, it is very HOT! The Free family is doing OK. Today is Cooper's 7th birthday. He is growing bigger and smarter everyday. Kaydee got her braces on June 11th. They hurt for a few days, but she is used to them now and all is well. Kensley is about the same. She is growing, but much slower these days, about an ounce a week. She is up to 19lbs and 10ozs, and 29 & 1/2 inches, which puts her on the 10% of weight and 40% on height. We have been off of all IV calories since March and doing well. She is absorbing all her calories and still growing. We continue to struggle with bacterial overgrowth in the gut, which puts us on high powered antibiotics for 14 days, which makes Kensley throw up and not want to eat her bottles or solid foods. NOT GOOD. This is a balancing act, and it is sooo hard. We will go back to Omaha the 1st of August.

Good Advice 5/19/09

Well, it has been forever since I last blogged, but the good news is that life is hopping. We are so busy with the end of school field trips and programs, etc. etc. that I have hardly had time to think. Things are going well here. Kensley is 19lbs and 2 ozs which puts her in about the 10th percentile of weight and she is 29 inches long which puts her in the 50th for height. This is really great. Her older sister Kaydee was only 17lbs and 13oz at 1 year which is the 5th percentile (Kaydee was also 31 inches long which is the 95th percentile). So I think we just make them long and lean. The doctors say that Kensley is doing great and she looks great too. She turned 1 year old on April the 28th. I can hardly believe that any of us even survived this year.

She is only having 3 stools a day (occasionally only 2). Sometimes they are liquid, but bacterial overgrowth is just going to be a part of our life. She has been off of all TPN calories(IV nutrition) since the end of February. Presently Kensley is receiving 400ml over 10 hours at night of IV fluids through her central line (because of the short gut it is very difficult for these children to maintain fluid levels), but we are reducing the fluids every other week and she is doing very well in maintaining her own levels. The doctors suspect that she will be off of fluids all together by the end of August. I have learned not the maintain concrete deadlines, but we will lift our prayers to God and let him determine the time line. We are not "out of the wood" and I don't even want to look for a light at the end of the tunnel, because I feel that Jesus has blown the roof off of the tunnel and just let the light shine down all the time. The days are not always good. Sometimes there is poop all over the floor, the highchair, the clothes and the toys, but the moments, those precious moments of laughter and love and hope and always great and now that I have my eyes open to that hope again, I can finally see them clearly.

This has obviously been quite a spiritual test for our entire family. We have been strong and faithful and weak and doubtful, sometimes within a few hours. BUT, God has remained with us. I have daily proof in Kensley and in the many wonderful friends and family who often had to come to our rescue. Thank you. I have received a lot of advice through out this year, and there have been some very inspiring people and moments, but the most inspiring-a true miracle and blessing came in the form of a mom who knew all too well where I stood, because she had filled the same shoes. Her name is Tina and her son, Eric was born premature with an intestine issue that caused him to lose even more than Kensley. Eric is now 9 and doing great with little or no symptoms of Short Bowel. He is truly a miracle and an inspiration to me. She has been there to remind me to have faith and to give me the gentle kick in the pants that I need on occasion. With humor and love she always inspires me to keep keeping on. Thank you Tina.

Another Day to Pray 4/15/09

Reaching out! We need your faith.

We need help and we need prayers. It is another day and we are about the same. Kensley is having loose stools. It is starting to cause her bottom to be chapped, even though I constantly put cream on it. She is only having about three stools a day, which is good, but they are still watery. It is probably because of the antibiotics that the doctors have her on right now. Antibiotics can make the strongest of people have diarrhea. The doctors keep suspecting that she has bacterial overgrowth in her bowel, which is very common for short gut kids. All I know is that we need her bowel to work efficiently and perfectly, for her to start gaining weight, stop having watery stools, and maintain her fluid level on her own. These are our prayer requests. Most of you know that I have been struggling with Kensley's condition lately. I started this terrifying journey almost a year ago holding on to the strength and faith that I had in God. I put a smile on my face and told everyone that I was just waiting on God. Well, I waited and waited, and things got better, but they did not "get good". I wanted Kensley to escape this affliction. And so far, that has not happened. It has been over 10 months of being overwhelmed by diarrhea diapers, broken central lines, trying desperately to keep things sterile and keep my other children from feeling left behind, take care of my husband, house and dogs. The life that we had, the life we wanted, the life we planned is over. I guess I just needed some time to mourn. Time to come to terms with this new life and find hope in the things that are going right. God knew that. He also knew that my strength is not the part of the story that He wants to highlight. I had to become weak to show His power. I have to be totally completely utterly dependent upon Him, and I am-NOW. There is no way that I could continually change these diapers, deal with these medical procedure, and fluids, and blood draws, if God himself wasn't holding me up. My Hope has waned, but His is strong. I am so glad that even when I can't believe in myself, the Lord does. Pray for us, we will be praying for you. I also ask that you pray for all children with this issue. Now that I am in this situation, I am discovering sooooo many children who have this issue or one very similar. Some are making it, some are desperate for a transplant, but all are so special. May God bless them all and give their parents the strength to be caregivers, and parents. And, May God bless those who pray. Prayer is the most important weapon that God gives us. Pray for each other. In the meantime, we will be here calling on the blood of Jesus and asking for a complete healing. Tana