Today Benjamin was cranky. I'm not really sure what's going on. He's definitely gassy, so I'm not sure if its something that I ate and past through in my milk or if its just he's not feeling great because everything is still healing and needs time. He was fine when we were holding him and laying on his tummy on me, but he was very cranky in his bed. Tummy sleeping is best for digestion and helps kids with reflux, but they won't allow him to sleep on his tummy there, because of the whole SIDS issue. I understand in a way, but he is hooked up to a monitor so you think if it would help him with his issues they would let us put him on his tummy. Anyways, they gave him some tylenol tonight, so if its anything besides his tummy it might help. I hate seeing him uncomfortable and if he doesn't settle out I might head out and spend the night with him. He's up to 14mls/hour now...the make it or break it number. We've been up to 14mls twice now and he hasn't tolerated it. But he's been on it since around noon and so far hasn't had any spit ups or major reflux episodes. So I'm hopeful we can work past it. Tomorrow we will 3/4 of the way to full feeds. That's exciting. The surgeon decided to keep going slow, because he seems to need it. So we have a little over a week until full feeds. In the grand scheme of things another week isn't that long. Tomorrow we are going to start working with the occupational therapist who specializes in feeding. I'm hoping she can get Benjamin bottling better. The ideal thing is to having him bottling every 3 hours or so during the day. He gets 1 hours worth of milk in the bottle. The doctor is confident that he'll just suddenly catch on and do fine. If he doesn't he can still come home with NG tube. Anyways I'm optimstic that this week will be a good quiet week with progress. There is a faint light at the end of the tunnel.

So the results from the small bowel follow through are good. The doctor was very happy with how his x-rays looked. The only thing that is an issue is how fast things are digesting. She said that an hour and a half after they barium was given to him it should have been through his small bowel, but it wasn't. So its as we thought, his digestion is slow. I guess over time that will get faster, especially as he grows and grows more healthy bowel. We are so thankful for these results. Benjamin had a pretty good day. He had 2 bottles today. He did ok...I can't give them to him yet...I get so stressed out if he chokes. I'm so worried about him aspirating again, but he needs to learn. So I'm leaving it up to the nurses. They know better how to do it. I never thought it would be hard to bottle feed a baby. But like everything else for Benjamin its not coming easy. I really hope he can get the hang of it. Anyways he's doing good...He's up to 13mls/hour. That just over half of his hourly amount. So I'm excited about that, we'll get there slowly. Its one day at a time.

Benjamin had another busy today. This morning we took him down to x-ray for the contrast study. The ended up giving him 35mls of barium through his NG tube. I thought for sure that he would throw that up because he has never had that much in his tummy and barium is like cement. But he kept it all in. Then he had lots of x-rays throughout the day. So he was up a lot and exhausted by the end of the day. We haven't heard the results from the test yet, but I assume if there was anything serious we would have heard by now...but tomorrow afternoon we'll see the doctor and know for sure. I can't wait to hear. He's up to 12mls and hour so we're half way there. That's very encouraging. So I'm hopeful that the medication is helping things work faster. The surgeon wants just to keep pushing through and as long as he doesn't have any major vomitting we'll keep pushing ahead. Bottle feeding didn't go that great this afternoon, but he was so tired I'm not surprised. He's put on 140grams since he got his central line...its amazing what proper nutrition can do...Anyways I posted a pic of his tummy now..its almost fully healed..the small open areas are where his stoma came out so its taking a little longer to heal. But over all its amazing how it looks after 2 weeks. Please keep praying that we make progress daily and that we can bring our little hero home soon.

I'm so glad this week is almost over. Today Benjamin had a much better day. I definitely think the sedative was causing him to cry the way he was yesterday, it was so strange. Today he was back to himself. At noon the occupation therapist gave him a bottle of milk. I bought preemie bottles, with slower flow nipples and that seemed to do the trick. Because Benjamin is a preemie the suck, swallow and breathe aspect isn't co-ordinated, thats why he aspirated in the first place. So him learning will just take time. I just have to watch him carefully when he's bottling to make sure he breathes. Its just a matter of pulling the bottle out of his mouth when he stops breathing and keeps sucking. I'm sure he'll get the hang of it. Once he gets better at it we can do it more often. He took 1 hours worth of milk...and he didn't throw up. He's been spitting up here and there, but nothing major. The doctor also started him on a new med. to increase the motility of his stomach and bowel. So hopefully that will help get things through at a quicker pace. Tomorrow morning we have the small bowel follow through, which is another barium swallow. Then the surgeon will know for sure if the issue is a sluggish bowel or narrowing from scar tissue. So it will be an anxious day..and it takes a while to follow it through so we likely won't get results until the end of the day or tomorrow. Over all today was much needed good day.

Benjamin finally got his central line put it in today. The procedure went smoothly and the line was placed in the major artery in his groin. He was sedated through the procedure and was very out of it today. He cried a lot, he was very sad and it was very upsetting for me. I honestly have never heard him cry the way he did today. I'm not sure what it was that made him cry..I think it must have been the sedative, it was very bizarre for him. Anyways I'm thankful the line is in and he can get what he needs for nourishment. Now he should start to grow again. I met with the surgeon today and she has decided to do another barium swallow to follow the path through Benjamin's intestines. She wants to make sure that the parts she reattached have narrowed by scar tissue. She doesn't think that that has happened, but she wants to make sure. Worst case is that it has and she has to operate for the 5th time. Chances are things are just slow moving and he needs time. NEC affects the total bowel function, so it might not work as great. As Benjamin grows and new bowel grows that will get better. So I am anxious about the test...I feel that everything is ok, but there's always that chance that its not. So we need prayers that all is working properly and he can just get better. We are also struggling with Jon back at work. Its hard to balance the kids,home, and hospital. I feel more burnt out then ever. We have the option of parental leave for Jon, but we're not sure we can afford him being off...its so tough.

I just don't even know where to start today. Benjamin had an ok night last night, but threw up quite a bit during the night. So his nursed bumped his feeds back to 12mls/hr. Then this morning they shut them off completely because Benjamin has an appointment at 4:00 to have the central line put in. That then got bumped to 1:00pm and then the whole thing got cancelled again. We are now working with social work and the patient advocate because of this. We finally got an appointment tomorrow morning at 9:00am...1 full week after his hand incident. That 1 full week of poor nutrition. Benjamin is recieving 15mls every 3 hours and he should be recieving 72mls every 3 hours to grow properly. If I would have done that to him at home CAS would have taken him from me and I would have been arrested. Some how its ok for them to do it at the hospital. Besides being terribly hungry, Benjamin had a pretty good day. He seems to get to 10mls an hour and then its too much. So I think his bowel is working just fast enough to keep the 10mls moving, but anything past that its to slow. So that's something he'll slowly have to work through. I knew this would be a process for him and I'm ok with that, but going through this process at Vic. is the worst decision I have ever made. We were given the choice to wait a few weeks for OR time at St. Joes, but its very hard to get there and we of coarse want Benjamin home sooner then later, so thats why we decided to move.. I will regret that forever. We need lots of prayers still. That his central line will go through tomorrow with out any issues...that he will tolerate more feeds, and that he will just grow and be healthy.

Today was another ok day. Benjamin is back up to 14mls an hour. They bumped him up again at 10:00pm tonight. I have a lot of anxiety about it. He spit up a couple times tonight. That makes me nervous. But babies spit up, so it could to be him. The girls were pukers, so he could be to. He also has reflux..which he's on an acid blocker for. Its so hard to not over-analyze everything. But he's pooping lots, so thats good. He still has no central line. I am so angry about this situation. He needs the TPN to get decent nutrition...right now he's only getting half of what he needs in breastmilk. So he's losing weight. They wanted the line in this past Friday, then today the resident said she was fighting for it for today...and that didn't happen. Now we have an appointment for Friday. So he will have gone a week and a half without proper nutrition. Its totally unacceptable. I'm so worried about his development and growth, like he doesn't have enough against him. I thought he would be a priority because he needs the central line for his growth. Its complete nonsense and no one seems to care that my child is suffering. I am horrified by everything that has gone on there with Benjamin's care.
I just can't wait to get him out of there. I feel so helpless. But we'll keep pushing forward and pray that his feeds will increase smoothly and we can get out of there sooner then later.