Here we go!!!

Tomorrow morning we are making the big move over to Victoria Hospital. Its bittersweet. I know its probably the best place for Benjamin as he continues on. I know this is a step closer to home. Surgery is still a go for Thursday at noon. We're praying hard that all will go smoothly and the doctor will be able to fix him up again and this will be it for surgery. We're asking for all the prayers you can give in the next few days....for the surgeon, for the nurses, for healing, for strength......

What a day! We have been preparing the last few days for the big move....but today we found out they don't have a bed yet. So if they don't have one by tomorrow night Benjamin will stay where he is and surgery will be postponed. The surgeon came in today and expressed her concerns about everything. She talked with the other surgeon who did Ben's last surgery and they both agreed that things inside should be well enough to proceed if a bed comes available. But because of the major trauma that went along with his last surgery she could open him up and not be able to do anything and just have to close him up again. If that were the case she would leave him for another 2-4 weeks and try again. As more time passes his intestines will become a little "looser" and less stuck. So there is a benefit to waiting. But they also have discontinued his feeds to try to heal his tummy and clean out his intestines in case he still does go tomorrow. Even if his surgery is postponed I think they may keep him off feeds to try to maintain his skin. The not so great part is that he'll be really hungry and his TPN will go up and it will be continous. So he'll probably become more jaundice again. The encouraging thing is that after a week and a half of cycling his bilirubin dropped significantly and he was back to a normal colour. I'm encouraged by that, his liver seemed to recoup well. So Jon and I believe that if a bed comes available by tomorrow night then God is telling us its time...if it doesn't God is telling us to hang on a little longer. We find comfort in that.
Today is Benjamin's due date. We brought cupcakes for the nurses today! The girls are upset because they think its not fair that he has 2 birthdays!! But I think he deserves 2. Anyways, we'll keep you posted. We need lots of prayers for strength and comfort.

All is well. Benjamin had a good day. He seemed a little more sleepy then normal, but I think that may be because of his vaccines. He looks noticeably less yellow today...so I am happy about that. We're getting ready to move over to vic...lots to do for that. We're starting to say good-bye to some of the nurses so that's sad. Its going to be an emotional week.

All is well today. Benjamin had a good day. He's pretty content, he still sleeps a lot. But he's starting to wake up and be a little more interactive. He is starting to fight us when we change his dressing,..it takes two of us to get it done now. Someone has to hold his arms and keep his soother in. Daddy and I got to go in and give him his bath..its nice to be able to do that together. He loves his baths and was in a pretty good mood considering he was vaccinated today. He also put on a little weight..so now he's sitting at 6lbs 12.5 oz. He's a big boy.
Anyways, I'm thankful all is well...but am getting anxious about next week. Its going to be so hard to say good bye and to go through surgery again without those nurses. They all seem to love Benjamin so much.

Well surgery has been finalized for Thursday at noon. Benjamin will be going over Tuesday. I'm pretty sure he'll be in the ill infants nursery first off, and then if he is extubated right away he can go back there. But if he has to remain intubated he will go to the pediatric critical care unit. I'm very anxious about it all, but know that this is the means to an end. I have faith that all will be well.
Benjamin had a good day. He was less stuffy then yesterday which is good. We had a good snuggle this afternoon. Benjmain has his bloodwork done for surgery today. They do a lot of bloodwork to keep an close eye on everything..nutrition wise. The good news is that his bilirubin is down. This means the TPN cycling is giving his liver enough time to heal a bit while its off. I am so thankful for that. The not so great thing is that his hemoglobin was low again. I think it must be from all the bloodwork...and a little bit of bleeding from his stoma. Anyways the doctors decided to give him a transfusion today. If he wasn't going to the OR they would probably just leave him, but we definitely don't want him going to the OR with low hemoglobin.
Anyways...we're trying to really enjoy the next few days with Benjamin before he's down and out again. He's so good and its hard to think about him going through it all. But this will hopefully be it.

Things are going well. Benjamin is still feeling a little poopy. He seems to have a cold..he's sleepy and stuffy, but I'm sure it will pass. The surgeon was in tonight checking in. Benjamin will go in on Thursday and if there are no beds available at Victoria in the PCCU he will go over surgery and then come back to St. Joes. In a way I hope that happens...but either way we'll be fine.
Since reducing his feeds yesterday Benjamin has gained 95 grams. I guess that's proof that he was just "dumping" his feeds. So in the next week he should gain a good amount of weight, which is always helpful going into surgery. Other then that nothing is new...I can't wait to get past surgery and onto getting better.

Changes

Well today has been a day of mixed emotions. We spoke to the surgeon this morning and she decided that since we're not making much progress that surgery would be better sooner then later. So she said late next week or early the week after. But when we got back surgery had been booked for thursday the 16th at Victoria Hospital. The plan is to tranfer Benjamin on Tuesday as long as they can find him a bed there. I really didn't expect them to transfer us over to Vic. I'm so sad to have to leave St. Joes. These doctors and nurses have been there for us through the darkest time in our lives. We know them so well and they know us. I know the nurses in the PCCU will be just as great, but the change is hard. I'm so anxious about another major surgery...and the surgeon really doesn't know how serious it will be until she gets in. So we are praying that this surgery will go smoothly and Benjamin will pull through well the way he has with his last three. Lots of prayers are needed as we get ready for another surgery...

Benjamin wasn't feeling that great today. He seems to have a bit of a cold. So hopefully in the next day or two he'll start to feel better. The doctors also started some more antibiotics to help fight off any infections with his stomas/incision that could be brewing before surgery. Tomorrow he will also get his first set of vaccines..I feel bad that he has to get another needle, but I definitely want him protected going to Childrens hospital..its a necessary evil.

Anyways, prayers for a bed at Vic...a smooth week, and strength for us would be appreciated.