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.

100th day...

I can't believe we've been in the hospital 100 days...Day 100 wasn't great. Yesterday the nurse noticed his resperations would increase as he would feed and I noticed today that Benjamin seemed to be working a little hard with his breathing. So the doctors decided to do an x-ray to see if there was anything going on. We they found out that Benjamin has aspirated while bottle feeding and now has some in his lungs. They put him back on oxygen and that helped. He seems to working a little hard, but not breathing as fast as before. So we're hoping that with a few days of just tube feeds that it will clear up on his own. They slowed feeds down and put him on continous feeds so his full belly doesn't put to much pressure on his lungs. When I left today he was settled well. Tomorrow they will most likely put in a new central line. They will have to knock him out for that, but since his feeds have slowed down, he needs it for nutrition. I have anxiety about it because there are risks. But he has had 2 without any issues so we're confident that this will be the same. A good thing today was that Benjamin's hand is much better. He has a black spot on the top of his wrist that is dead tissue, but the plastic surgeon expects he'll end up just with a scar. They don't anticipate any major damage. His tummy seems to be doing well. Everything seems to be digesting well and Benjamin is pooping well :) So today was another rollercoaster...its so disappointing that things aren't going smoothly, but this is how it has always gone. Benjamin really isn't that far off from home..so after this I hope its smooth sailing. .. We definitely still need more prayers..I feel defeated today and like the day he comes home will never arrive.

What a day it has been. If I could steal Benjamin from the hospital I would. Since we have been at Vic. its been one thing after the other. Tonight was the worst. Benjamin had a long line inserted in July at St. Joes that was working perfectly until we got over to Vic. So I'm not sure what happened, but it started to leak. So the nurses put in a regular IV to run his TPN through..the nurse said to me that they have to keep an eye on it because the TPN weakens the veins. Well tonight Jon took Mackenzie for visit and walked into a room full of doctors. Apparently the IV shifted out of his vein and the TPN was being infused into his hand. The can cause damage to the tissue. His hand and arm were very swollen and he has a black spot on the top of it that is dead tissue. They are not sure in the end how much damage it will do. They may have to do some skin grafting..but we're hoping it will heal and not cause any muscle damage. The worst thing is that no one called us. The nurse found it at 4pm and we weren't notified at all..Jon walked in at 6:30pm and found them working on him. I am completely livid and almost afraid to leave him there. I feel like calling St. Joes and begging them to take us back. It seems like no one even looks at him between changing his diaper and feeding him every 3 hours. I'm so stressed out...Things were going so well. I just want to get him home...away from there.

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.

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.

Well I don't really have to much to tell you today, which is a good thing. All is well with Benjamin. Nothing has really changed. He is still losing weight, which concerns me a little. He's down to 6 lbs 7 oz. I guess the doctors are keeping an eye on that though. Tomorrow the surgeon is coming in, so hopefully we'll be there when she does.

Besides that, nothing is new...

Benjamin had another good day. He is still off the oxygen and hasn't had an issue at all. We are still working on his skin care trying to come up with the best way to get things healed. What a battle. I'm confident that this week things will sort themselves out and we'll get a little more clarity on what we should be doing and what to expect. I'm sure the surgeon won't give us any definite answers on when the next surgery will be, but we just want an idea if it will be sooner then later. His nurses this week are fabulous, we have a core team of 3 nurses who are wonderful. I am so thankful for them. They aren't afraid to speak their minds, try new things and advocate for us at all. So all is well...

A huge day!!!

Today has been a milestone day for my little man. He is now completely off his oxygen!!! Its so nice to see his beautiful face. All that's left is his NG tube for his feeds. Some kids become a little freaked out when the canulas come off and Benjamin had a little episode yesterday morning when we tried to take them off so we put them right back on. But the nurse today was a little more sneaky. She took off the end attached to the oxygen at the wall. So his prongs were in all day with no flow going through. Finally tonight when I got to the hospital the prongs were off. Benjamin has never been off his oxygen so this is huge. We are thrilled. It was definitely a worry especially with his murmur. So he's been off for 12 hours without an issue. Hopefully his night is well and he can stay off until his next surgery. We are still working on his skin. It seems to be a bit better. Its still red and sore looking..essentially its really bad diaper rash... So we're going to meet with the surgeon on and the stoma care team from LHSC. There are specialized nurses there..if worse comes to worse we can have transferred to vic. We love our nurses and doctors at St.Joes, but if they can get things under control at vic. we might opt to go there. So we'll see what this week has to bring.
Today was a great day...an answered prayer. God is so good.

Success

Today was a fairly good day. Jon spending the night at the hospital tending to Benjamin really helped. Today we decided to take some control over his care and change the order to the way we feel most comfortable with. The doctor was fine with this. I think he looked a little less red tonight and I think our method may work best. So that's what everyone is supposed to do. The nurse did some more bloodwork to make sure there was no infection brewing...causing the redness. But his bloodwork came back great...even better then yesterdays. His hemoglobin went from 88to 93 over night, so thats awesome.

When we were at the hospital tonight Benjamin was wide awake for a long time. We woke him up at 9pm and he was still awake when we left around 10:30. He was very alert and kicking his legs. He was looking around a lot. So I decided to try nursing again. Tonight he did great...I nursed for about 15 minutes. He had 2 little episodes during nursing, but he has to learn to suck, swollow and breath. He did well though, so I'm so excited.

So things are ok...today was a pretty a good day.

Today has been long, exhausting and frustrating. Benjamin had a lot of bloodwork done today. The good thing is that his platelets are up and his hemoglobin is up as well. So thats great...but his bilirubin is also up, quite a bit, which means there is still a lot of damage happening to his liver. The nutritionist thought that by now they would have seen a decrease, but that hasn't happened. I'm so scared about the damage the TPN is doing. Tonight they are starting something called cycling. They will increase the amount of TPN he's getting per hour for 18 hours and then shut it off for 6 hours per day. This will hopefully give his liver a chance to heal a little between. His bilirubin may not go down, but hopefully they won't go up. Benjamin is looking so yellow, which makes it so real...we can see that his liver is hurting. Today I sat by Benjamin's and left his stoma open. The air really helped again. The nurses changed him ever 2-3 hours, but it was still red this morning. So we've decided to spend all our time at the bedside making sure he's dry and clean. JOn will be there all night tonight. The nurses just don't have the time to sit there..and its pretty constant...the stool coming out. Its so acidic and watery that it just eats away the new healing tissue. If we have to have 24hr bedside vigils to heal him we will. Once the skin is healed they can put a bag on and increase feeds...increasing feeds will help his liver too. So 2-3 days of round the clock care by us will be worth it in the end. The surgeon was also in the unit today, unfortunately she didn't see us.. We were so hoping we'd get to see her and the nurse was supposed to make sure she would see us, but I guess she didn't. I'm so frustrated... Anyways, I'm hoping that 2 days of constant care will make all the difference. My poor son has been through so much and it breaks my heart. Pray for healing...and pray for strength for us.

Today has been a good day. We've made a little progress when it comes to healing. We left his incision and stoma open for 2.5hours this afternoon and the air really made a difference. I guess its like diaper rash...the best thing is to keep it open for the air to dry it out. So we're changing him every 2 hours and hopefully after 24 hours we'll see a remarkable improvement. His output was less today and he didn't lose anymore weight..so that's promising. So all is well. We're just praying for more healing and that he will tolerate his feeds better and start gaining weight.

38 weeks

I can't believe Benjamin is 38 weeks. Time flies. Benjamin had a great day. His oxygen had gone way down and he doing so well. We're still fighting the battle with his skin. Its hasn't gotten any better and we're a little frustrated. I finally asked the nurses to change him every 3hours so I'm sure that will help and in the afternoons we're going to leave it uncovered so the air can dry it out. I really hope that helps. Benjamin's weight dropped again in the last 24 hours, so I'm a little worried about that. I'm not sure what they will decide to do tomorrow. They may wait it out and see if he starts to go up in a few days, or they could drop feeds back to 6mls...or they could fortify my milk...we'll have to wait and see.
Anyways, over all things are good. Benjamin is happy and even if we're not really progressing we're not taking steps back either.