Laney Joy

Laney's tests are over and we are home again. Yesterday was difficult for my husband and I as we were faced with alot of information and even more decisions regarding Laney's health. The months to come promise to be a challenge to say the least.
We didn't make any concrete decisions yesterday regarding surgery on Laney's intestines. We are at a "wait and see" point right now. She remains in a state or chronic constipation at this point. (WARNING!!! TMI to follow!)
The doctor, during his initial exam, mentioned that Laney's "pipes" were clogged and that he could tell that she was in a great deal of discomfort. He asked permission to "irrigate the plumbing" to relieve some of her discomfort and we agreed. He also told us that she had some scarring "around her back door" where her skin had ripped in certain places because of her constipation. These were his terms (not mine) and it almost sounded funny hearing him say those phrase aloud while maintaining a serious expression on his face. Almost funny, but not quite, seeing as how he was speaking those terms in regard to my sweet baby. It was sad to hear that her little bottom has suffered so much. He also wants to repeat her endoscopy and colonoscopy soon (she's not had one since she was 2 months old) but didn't want to put her through anymore trauma yesterday. She had a voided-cysto-urethragram (VCUG) and a barium enema, as well as ultrasound on her stomach. He wants us to bring her back to do a procedure called Anorectal manometry. It sounded horrible! She will also have a pH probe (AGAIN) and a rectal biopsy.
In the mean time, we were instructed to increase her Miralax and use Pedialax as well as suppository as needed. The doctor said that if we can increase the use of stool softener, we can decrease the damage being done to her little bottom. Poor Laney already takes a ton of Miralax as it is, but I'll increase it anyway. The doc knows more than I do about these things.
I don't know the results of any of the tests they did on her yesterday or any of the lab results from the blood work, but I should here from the doctor as soon as the reults are in. Right now, we just wait. As usual.

My Sweet Laney

I really want to say thank you for praying for Delaney again. It seems like lately, all I ever do is request prayer for one of my children (or sometimes all 3) because one or more is always unhealthy. Did you know that Delaney was 18 months old on May 30th? I don't think I mentioned it in a post. It seems like I have spent the last 18 months in fear-fear that I'll lose my Laney. It's on my mind constantly, every time she gets sick and even when she's healthier than ever. When she was in the hospital after her birth, they told us she would not be coming home with us. Her little body was failing her and she was just too weak to fight. They said there was nothing they could do. I cried, I screamed, I begged, and I pleaded. I told them they were wrong. I told them there was no way that they could be right. I told them that I would fight FOR her. If she was too weak, she could rest. MY God is strong. MY God would fight for her. MY God could and would heal her and I WOULD take her home. I was so angry with them for giving up on her. I was angry that she was not healthy. I was angry that I had to be afraid for my tiny little girl. That is the moment that I really started to pray. I hit my knees and I begged my Father not to take away my baby girl. And then, I told Him that I was placing my baby girl in HIS loving hands. I told God that I was placing my love and trust in Him. I trusted Him to do what was right for Delaney. I promised to take the good with the bad, to let Him do His will, even if it wasn't what I wanted. I didn't want to give her back to God, but I would if that was His plan. I was thrilled to walk out of that hospital 3 months later with my baby in my arms. Not quite healed and whole, but ALIVE! Since her birth, Delaney has traveled a rocky path. She does not go it alone, though. My Father is Her Father. As much as I love her, HE loves her so much MORE. He walks with her, or carries her when she is too weak to walk on her own. I placed my faith in His hands all those 18 months ago, and I never took it back. I will not take it back now.
I don't know what is in store for Delaney and the doctor's really don't either. Only He knows what will happen to our sweet girl. He's known all along. We just have to wait for His plan to unfold.

Delaney is not comfortably resting. She had a very hard night with very little "good" sleep. Her fever only fades while the Motrin is newly in her system. As the hours pass, the fever returns. I don't understand why this came on so suddenly. We are waiting for cultures to come back from the lab. I was told it will be a few days before we have answers about infections/bacteria. They assume she has a bacterial infection in her intestines. As of right now, they are saying she has enterocolitis. Right now, decisions are being made as to what treatment we will go with. We've discussed an NG tube, possible colostomy, and in the near future, the pull-through procedure for the Hirschsprung's disease. Her abdominal distention is causing her respiratory problems. Often, when there is severe abdominal distention, it can cause a respiratory insufficiency. So we are waiting for the doctor to make some decisions on the best treatment plan for her. I fully expect her to get the NG tube sometime today. Please continue to pray. Enterocolitis can be very dangerous and I am very worried about my little Laneybug. As for now, I'm trying to be cautiously optimistic while praying with the rest of you. I'll continue to update as we get more info.