Progress...Benjamin started feeding last night..5mls every 3 hrs. His tummy got a little puffy, but all seems ok. We know this could be a process. The surgeon was in this afternoon and is thrilled with how things are going. She said we can go ahead and bump his feeds to 10mls every 3 hours and see how it goes. He definitely seems hungry. Today was our first time bottle feeding...it didn't go that well. Benjamin has to learn to breathe suck and swallow..he ended up gulping in a lot of air and throwing up a couple times. But he will eventually learn. I also got to change his poopy diaper..its the first time ever for me :) I've decided to bottle feed so he can learn..we can work on nursing later. I don't want him to be in the hospital longer because he isn't great at nursing. So we still have to take things one day at a time, but things are going well.

Benjamin had a super busy day today. At 10am we took him down for his dye test. He did well. I was worried about him tolerating the barium, but he did fine. They followed up with 5 or so x-rays and found that there are no leaks where the surgeon reconnected. I am so incredibly thankful. Tonight they already started feeding him. He's getting 5mls every three hours. Feeding can be touch a go for a while. We know it could be a bit of a process, but its a beginning to the end. He also had a bunch of bloodwork done. Everything looked pretty good...his hemoglobin is down, but not to bad and his bilirubin is down, which is so awesome... He also had his eyes tested again, and they have improved a little. So over all, today was such a great day. I feel so blessed..and thankful for so many answered prayers.

Good-bye intensive care

For the first time in his life Benjamin is out of the intensive care unit!!! This is huge. What a big step. We are so happy! Benjamin had a great day! He actually pooped on his own today. I have never been so happy to see poop before. This is such a good sign! They weaned him completely off his morphine and he is off his oxygen as well. So much progress since Thursday. I am so thankful. Benjamin was in a good mood tonight too. He was awake for 2 or so hours. We gave him a sponge bath, which he loved. Its amazing that he was off his morphine and we moved him around and he didn't complain once. He's such an amazing boy. We are so thankful...we have been so blessed.

Benjamin had a pretty good night last night and day today. I spent the night at the hospital with him again. Its hard to leave him wit strangers...I felt a bit better today because I knew one of the nurses on. Benjamin was extubated today and did great. I think the oral intubation tube was driving him crazy. He seems to have a highly sensitive gag reflex and the tube sent him over the edge. Every time he moved he'd gag his heart rate would drop and the monitors would go off...and they are loud over in the PCCU. So I am so happy he's off the ventilator. He's on low flow with just a little oxygen. I think by tomorrow he'll be off completely. He's so much happier. His pain medication has been cut in half which is good...as long as he's happy. He is the healthiest kid in the PCCU which is a nice change...they were going to move him to the 7th floor, but the surgeon came in and asked them to keep him one more night...so I think tomorrow morning he'll be moved. As long as everything comes back good from his dye test on Monday feedings should start shortly after. It could be a slow process because the necrotizing can affect the total bowel function even though the actual diseased parts are gone. So we just have to wait and see. Benjamin is puffy today, but not to bad..his belly looks pretty good..the doctor was able to close the entire incision. So so far so good. Thanks for all the prayers..!!!

Benjamin had a good quiet night. His blood pressure was a little low post surgery so he needed a little medication to get it back to where it should be. It was never awful, but borderline. Since 4am its really picked up and looking much better. His bloodwork looked really good. He really didn't lose much blood during surgery so I'm thankful for that. I don't think he'll need anymore blood for now. He's swollen, I'm sure he's going to get puffy, but since his surgery was a lot less invasive then his last 2 so I'm hoping that he won't swell as much. He's having x-rays done this morning just to keep an eye on his lungs and abdomin. Its been hard here. They do everything so different and sometimes seem less then confident in what they are doing with Benjamin...especially when it comes to what he is on for nutrition. So I get really frustrated when everyone seems so unsure. I wish I could go to St. Joes and bring my nurses back here. Anyways...we'll be ok. Thanks for all the prayers and support...they mean the world to us.

Surgery is finished and the surgeon was so happy with how it went. She said it was textbook. She was extra vigilant because of all that happened last time, but is confident that all will be well. Monday they will do that contrast study, sending the dye through his feeding tube and doing x-rays to make sure all is well. He made it through surgery like a trooper as usual. We haven't seen him yet, but I will be spending the night with him. Thanks everyone for all the prayers and support.

3 months

Benjamin is 3 months old today. Its hard to believe that he's that old...but in a way it seems like he's been here forever. Today was a good day, but a hard day. Leaving St. Joes was just as difficult as I thought it would be. But going to the PCCU was good. Our nurse during the day was very friendly and helpful and our nurse tonight was also great. They are both on again tomorrow so I'm thankful for that. They let us show them how to change Benjamin's dressing....which was nice, but Vic. doesn't have the same things St. Joes does so it was a little difficult. Anyways hopefully after tomorrow we don't have to worry about. Benjamin had a test done today where they run a dye through the lower part of his intestine to make sure there are no blockages. They did a series of x-rays to follow it through his body. Last we heard it all looked great, so I'm thankful for that.
Surgery is at noon tomorrow. Benjamin will most likely be intubated and be back in a giraffe after. I am able to spend the night with him tomorrow night which is such a relief. They will have a bed ready for me in his room tomorrow. Benjamin is so awake and alert...I think sending him off to the OR will be most difficult this time...I hate to see him go through this all again. There is nothing worse then seeing your child go through so much.. Please take a minute tomorrow around noon to pray that God will guide the doctors hands and minds...and that this will be it for my boy.