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.

Well we were heading in the right direction and I guess we still are, but last night Benjamin's night was so great. I guess around 2am he threw up a huge amount of milk. So we got the call saying they were stopping his feeds. This morning when the doctor came around and restarted his feeds at 5mls/hr. They were up to 14mls/hr last night. It was very disappointing. I guess it was Benjamin's way of telling us that it was to much to fast. He was very "burpy" yesterday and I'm not sure why. I don't know if he was breathing harder then normal and getting more air of if the oxygen he was on was forcing air into his tummy...and maybe thats why this all went down. This morning they did some x-rays to double check there was nothing going on in his bowels, but the doctor was happy with how everything inside looked. Thank God for that, I was terrified. Anyways, he was very grumpy today, he's very hungry. It was a frustrating day because all he wants to do is eat, and he can't. So I spent the day holding his soother in. Tonight the doctor came in just before I left and I told him how hungry Benjamin was so he gave the nurses the go ahead to put him back up to 10mls/hr. So I am very happy with that. They also were getting him some sucrose to help pacify him a bit...we're working our way back in the right direction. The doctor said its good to push him a bit because we won't know until we try. We're going to regroup in the morning and go from there. They also took him off the oxygen again, so that is very positive to. Benjamin had lots of company today, so that was nice too. It makes the long days in the hospital pass a little faster.

Benjamin had another good day today. His oxygen has been turned down alot...I personally don't think he needs it, but anyways...the nurse changed his canullas and he saturated at 93% the whole time. But no one listens to me:< His lungs sounded very clear today so that is good. His feeds have been going up every 8 hours by 2 mls. Tonight he was at 14mls/hour. We're aiming for 20ish. So we're getting there. We bumped it back to every 12hrs now because Benjamin spit up a couple of times. Its hard to know whats ok and whats not. He seems to be very gassy from both ends, and both times he spit up it came out with a good burp. So I think he's getting air from sucking on his soother like he's starving. The doctor thinks we're still ok. He's pooping great and doesn't seem to be bloated or to uncomfortable. So if things go well he should be close to full feeds by Monday. Then they'll have to work on getting him to tolerate them at a faster rate...So they'll give him a 3hr feed in 2 hours and continue on until he's taking 60mls every 3 hours. Its all a process. He lost a lot of weight in the past couple days, but I think he's losing a lot of fluid from surgery. He's also not getting full feeds, so he'll lose a bit from that. So tonight he was at 8lbs 1.5oz. I still think he's a little puffy, but that will go over time. Anyways, everything is pretty good right now. We're heading in the right direction.

A better day

Benjamin had a better day today. He slept well last night. Mackenzie went with dad to the hospital and held Benjamin and read him a book, so I think that helped ;) He also had a quiet day today. I went early and held him for most of the day. It was nice just to snuggle quietly with him. The cut back his feeds yesterday after they discovered he'd aspirated so today he was very hungry. So between sleeping, he was cranky a very hunggry. They put him on 5mls continuous and were increasing it by 1ml every 8 hrs. We met with the surgeon again and he decided to increase to 2mls every 8 hours and then if tomorrow goes well they will increase faster. After that we'll just have to work on getting him to eat every 3 hours instead of continuous and get him eating by bottle. They didn't have time to put his central line in today. I'm relieved. They have to put him out for that....they said they will do it monday or tuesday but he could up to full feeds by then and not need it. Thats what I'm hoping. There are risks to doing the central line, so I would be so thankful if he didn't need it. His breathing is much better today. He's still breathing a bit heavy, but not fast like he was yesterday. He is still on a little bit of oxygen, but they are going to start weaning him soon. Anyways, I'm thankful for a good day and am looking forward to a good weekend of progress.