Wanting to be positive...

I have sat down at my computer to write a post many times. It drives me crazy when I am reading a blog and then there is no post for quite a while. After a while I stop coming to read assuming there are no new entries.
I keep thinking if I have nothing uplifting or positive I need not write. But tonight I come (again) asking for prayers. Tomorrow we see our urologist whom we haven't seen in a while. Of course this doesn't mean Annabel has been free of infection, as she is on antibiotic most of the time. For some reason Dr. J seems to just become frustrated with the fact that we have to treat her UTI's  due to the risk of the bacteria migrating and infecting her line. His answer is to just pull the line and remove her of TPN. I so wish I could do this. We have tried twice since Christmas but with no luck.  But we will see him anyway as she need to have a CMG.
Annabel has become very uncomfortable as of late. These episodes are happening more often. Some of them are fairly severe. They do pass sometimes taking days to actually resolve. When we saw her surgeon in late April his reply was until you remove her large intestine she will never eat again. He says her large intestine is acting as a brick wall and therefore won't allow the small intestine to empty. He has reviewed all her scans, xrays etc. and he has actually been in to remove or resect parts of her bowel before. The GI doctor wanted to try one more regime of medicines to see if something would increase her motility. He says it was his last shot and then if nothing worked the surgery would be the option. About 10 days ago she had a terrible weekend with so much pain. Lasting longer than others previously. She did end up in our local hospital. The cat scan revealed megacolon again, last episode was in April when she was flown to Houston and it resolved soon after arriving. There are many terms that are thrown out there each time, like obstruction, psuedo-obstruction, ileus, toxic megacolon/functional megacolon, twisted bowels etc. For the last few months Annabel was considered to be on total gut rest, except for the fact that we were giving her very small amounts of water in her g-tube for added hydration. Now she can't have anything in her gut until she has surgery.  So since this last hospitalization Annabel has continued to have a very big belly most of the time and higher heart rates while sleeping. She also winces in her sleep as her heart rate is rising and I know she is very uncomfortable. She is tired much of the time. She still has happy time but they are less and farther apart. Annabel has begun to pull at her hair much of the day, rings her hands sometimes until they bleed and the grinding is much more and harder these days.
So tomorrow we will see our surgeon as our GI doctor says it is time. I know she needs some relief, I was asking for some meds to make her more comfortable and of course the answer was if she needs pain meds we need to bring her into the hospital (last night) and schedule surgery right away. This is where I ask for prayer. I have always wanted to make the best decisions for Bella and so far I think I have. I have always said that I don't want to just begin cutting away on her and that when enough is enough I will know.
They question with the surgery we are facing is the large intestine will come out. But the surgeon is honest and says I can't guarantee I won't be back in for the small intestine. There is test that show that things are getting worse there also. My goal for Annabel is to eat again. TPN is not good or kind to Annabel's liver. That is why we consider removing the large intestine because it is a chance to feed her again. Once we remove the small it becomes a different game.
The above writing probably is very confusing, as to when I think about it I know I am totally confused. I do know that she will have a bag on one side when they remove the large intestine. I think ahead and worry about skin breakdowns as this can be very scary with her central lines.
What I will be asking for tomorrow is to make Annabel more comfortable through medications. I want more time to think of the procedures/research and weigh out the risk/benefit of the surgery. I sure don't want to see her suffer, ever but I also want clarity in making the best choice for Annabel. I trust the surgeon completely and he is a very kind man.
Thank you so much for your prayers....  

Most special ladies...

I want to begin by saying how lucky I am to have such a wonderful mom. I haven't always been the best daughter but she has always been the best mother! So thank you to my momma and for loving all my children. Now to five other beautiful, amazing, and selfless women that allowed me to have my amazing family. They all have names And are known as my birthmothers. I truly can't imagine my life had God not chosen our paths to cross! So as I do each year I want to thank each one by name. Tammy you gave me my first son, Derek! It is hard to believe he is 30 years old. Our son, meaning yours and mine was born on your birthday in the wee hours of the morning. I can't imagine how much harder that was since he was born on your birthday but yet you keep your plan that you had made. I know you know how thankful and how much we love him. Denise you gave me my first daughter, Tara! This has been 28 years ago. I will always thank you and be grateful for this sacrifice you made. I know this was to be your only daughter. I was so glad when y'all met, as I believe this is such an important step. Please know that we could not love her more! Karen you gave me what was to be my last baby, Tyler. I treasured every moment with him since I knew I would not have another(supposedly). I remember the day and place where we met and that you chose us to be his parents. Even though you chose us but wanted to spend one more night with him, I so worried that I wouldn't see you the next day, but you kept your commitment to us to be his parents! He was so very tiny to me since he was 8 weeks early. Today he is my biggest of all. Melissa you gave me such a surprise of two beautiful little babies! Our girls will be juniors in college and are 19 years old. Even on our very hardest days, they always gave us so much to laugh about! Even though y'all have not met face to face, I know that day is not far off. You will be so proud of them and I know look just like them. Many mothers sacrifice to relinquish one but you let two go as you had promised. Amanda you gave birth to a precious daughter who God chose to make so special. It is when you found out how special and short her sweet life was to be, you wanted her back so badly. It has been 7 most precious years that God has allowed us to love and care for your little one. Even though some think Annabel doesn't understand but I am sure she does, so I tell her how much you wanted her and how much you love her. Please know that she is loved more in her sweet lifetime than someone who has lived a hundred years. So to all of you, who have given me the most beautiful and handsome children I say thank you and I love you for your sacrifices. It is not just on Mothers Day that I feel this gratefulness! It was each night I rocked them to sleep, tucked them into bed as they got older, watched them growup, graduated, get married, or cared for them when they were sick. I always made sure we prayed for you, that they knew how much you loved and wanted them and made sure that they met back up when it was mutually agreeable. So please enjoy your day and know that you have changed someone's life so deeply... And to my mom who taught me to love all of Gods precious children. To all of you moms out there who have loved or have shared your children with other, Happy Mother's Day!

I adore this little girl...

She just continues to amaze me. The fight in her sweet little body is still so alive. I was reminded today by two different people that I haven't updated in quite a while.
It is just that I get so very down when we are not able to feed Annabel. Her belly hasn't work in a good while. We had so much hope but it seems her belly just can't take it.
We have been doing testing for the last 6 weeks or so. Just yesterday we went in to GI for the test results. He had not made a contact with surgery and I was just a little disappointed. But I love our GI doctor and how hard he tries to figure our little Annabel out.
We already knew what our surgeon thoughts are. We had an appointment originally to place a button into her jujunum (sp.) but when we spoke to him last week he said he wouldn't consider this. He said very directly that he knew her gut well from past surgery and that he had reviewed all her testing. He said she will never be able to eat until her colon is removed. He said it is and has been so largely dialated that it is so filled with air/gas that is acting as a wall when her small bowel tries to empty. But he was honest and then said even if we remove the colon that we may still have to go in later to remove the small bowel as it  posses problems also. But he finished by saying he wanted to speak with GI after she was scoped which was scheduled the following day.
After yesterdays appointment with GI he is waiting to hear from surgeon. But many times Dr. C(GI dr.) has said there is one more med we could try if I was open to it. It does have some side-effects that aren't so great. I am thinking the side-effects of TPN aren't so great either. So we have a plan, we will begin it for one week, talk and possible up this first med. Then after the 2nd week if she tolerates this first med, he will begin rotating different antibiotics to try to kill the bacteria that is in her gut. We will then begin very small, slow feed and then begin the medicine that will hopefully help with motility(with the not so great side-effects). I realize this is so confusing but it is because I really don't understand it either. They will walk us through each step. Thank goodness for my nurse who takes good note and has a better memory than myself. She asked him if this doesn't work, what them. He has said a few time recently that he is running out of options. His answer to if this doesn't work was there is nothing else short of surgery. He agrees with the surgeon about why the colon isn't/can't work. He also acknowledges that the small bowel does have issues in itself. But as not to be a total downer, some will have to be removed but some maybe able to be redirected.
As we begin this regiment, I will try to find out the meds and update with the names and their uses. Tonight was our first night and I know this med is called Imipramine. We are beginning with a very small dose nightly. This med is an anti-depresant. This is so hard for me as I don't like Annabel on much meds at all. I love her personality and don't want it altered in any way. (I am willing to try this in the hopes that this regime with allow her to eat again one day and not have these surgeries that are being discussed.)   
Thank you for all those that still read. I wish I was as faithful as I once was but this seems all I can offer right now.
Annabel is continuing to battle one UTI infection after the other. She averages about 5 days free of antibiotic and then is infected again. She is also battle c-diff (3 infections in the last 4 months). It is a crazy cycle that we can seem to find that balance. Just a couple months ago Annabel's weight was 38 plus pounds and yesterday she was 32 lbs. She seems so much more comfortable even though she is on the thin side. She seems to be stable with this weight. I will try to update soon.