Stable

Well we are 33 hours post surgery and things are well. Benjamin is stable. Today the doctors have already weaned him off one blood pressure med and he seems to be doing fine. Today Benjamin's heart rate is down and he ventilation is down slightly. The surgeon came in and was very happy with how he was looking. Jon and I spent a lot of the day with him..and it was very reassuring to see him so well. He was awake for quite a while this afternoon. He had his eyes open and seemed to be very aware of what everyone was up to. He was uncomfortable at times, which is so sad to see. Watching him cry is heartbreaking. I thought the picture would speak volumes, although I think its kind of heartless posting one of him so sad.....The doctors also said that his liver isn't functioning that well, and the surgeon noted it was looking a little rough. This could be from the nutrients he's been recieving. Long to use is hard on the liver. They are keeping an eye on it and think that it should be able to recover once he's back onto breastmilk. I can't wait for that. They told us 5-7 days post surgery and he should be good to start feeding. If there are issues it could be longer. So we have to wait and see.

Thanks so much for all the prayers and support. We are so thankful for everyone.

What a day

I'm so glad its over. Surgery lasted just over 2 hours this morning. The surgeon was very happy with how it went. She cleaned everything up, reattched the ends of his small intestine and checked everything over. All looked healthy. The surgeon expects that once he is healed he should have normal bowel functions. The doctors told us he would probably get worse before he got better, but I wasn't really prepared for what came after. They had a hard time stabilizing Benjamin after surgery. It was a breathing issue and blood pressure issue. They moved him back onto the high frequency ventilator which has helped... there was a frantic period of time where the nurses,rt's and doctors were working to try to stabilize him. It was incredibly scary. The nurses kept reassuring me that this was normal, but noraml for them is terrifying for me. Finally he settled and everything worked itself out. So when I left about 30 min ago Benjamin was stable and resting quietly. It was very hard to leave him, and I'm sure between brief naps, I will be on the phone with his nurse tonight. I'm so glad to have this behind us and am so grateful for all the prayers and well wishes. We still have a long road and the next day and a half are critical. We definitely still need the prayers.

The big day

Well its finally here. Tomorrow is the big day. Benjamin had a great day today. He has been very stable. The doctors put some more lines in his arms to prep for surgery tomorrow. He has 2 lines in each arm. They look so sore. I feel so bad for him. We're going to be at the hospital a little after 8am tomorrow and surgery is scheduled for 9:30am. I'm sure its going to be the longest few hours of my life. I'm so worried ... I hope the surgeon is able to fix everything and no other issues come up. I just can't wait for it all to be done. Please pray for Benjamin, the surgeon, and for Jon and I as we go through this tomorrow.

A quiet day

Nothing has changed...all is well. Benjamin had a good day. We only have one more day to get through before surgery. I have so much anxiety. But I know everything will be ok.

Surgery

Surgery is booked for Friday at 9:30am. I am so happy that it is so soon..but nervous. Benjamin is on a traditional ventilator again and doing fine. They will keep him intubated until surgery, unless he extubates himself. So over all today was a good day.

Another day

Well I hate to even mention that today was a bit better because I seem to jinx myself....But it was. Benjamin was pretty quiet. This morning his bloodwork was wonky and they had to increase the help he was getting...but throughout the day he seemed to be doing a lot more breathing on his own. His chest x-ray also looked better today. He still has a partially collapsed lobe, but if all goes well tonight they will switch him to a conventional ventilator tomorrow which will hopefully help inflate that part of his lung. The doctor also said that he seems to be going in the right direction for surgery this week or early next. So fingers crossed that will happen sooner then later. The surgeon is back in town tomorrow so I'm sure she'll check up on him. I think that's all for now, he's still on a little morphine to help with any pain. He was very fiesty today..he definitely didn't want anyone messing with him. He also had another blood transfusion...thats 5 so far. I really encourage everyone to go donate blood. I have a new appreciation for it all together now.

The one picture is of the breathing machine he's on...

Rollercoaster

Yesterday was a good day...but after we left last night Benjamin started having apnea spells. One to the point where the nurses needed to bag him. So he was intubated again. He was on a conventional ventilator at first, but his blood gases were still off so they had to switch him to another high frequency ventilator called the jet. I was so disappointed to get that phone call at 4am. The doctors don't really seem to know why he was having so much trouble breathing on his own all of a sudden. They did an x-ray and did see the upper lobe in one of his lungs was partially collapsed, but they didn't think this would be causing him such an issue. The nurse mentioned a small "spot" on his lung. They suctioned him this afternoon and got some thick yellow mucous out so this is a good indicator that something respiratory is going on. Hopefully the antibiotics he is on will help clear that up quickly. The doctor also put him on a bit of morphine because he seemed a bit uncomfortable.

The surgeon also came in a took a peak at Benjamin. She thought his tummy was still the same as the previous few days, so that is good. She feels that what is going on right now is not related to his bowel issues. So that is good. She said as soon as he is feeling better she'll take him to the OR and operate. Hopefully that can still be this week or next week. Pray that whatever is going on in his little body will clear up quickly and we can continue to move forward.

Better

Benjamin had a better day today. His tummy is still swollen, but to a degree that is to be expected. The surgeon looked him over today and was ok with how things looked. He had 2 x-rays done and everything looked ok with them as well. Tomorrow we get the results from his blood cultures. If they are negative surgery should still be this week. Fingers crossed they are negative. Everyone seemed happy with how he was today.

Tonight Jon and I were able to participate in bathing him in the tub. The little firsts are so much fun. He did great. He didn't cry at all...He was also weighed and came in at 4lbs 5.5oz. His tummy swelling may contribute to the 100g he put on in 2 days, but he is growing.

Thanks so much again for all the prayers and support. So many people have made this all a little easier for us...we appreciate it so much.

Cancelled

Well Benjamin's surgery has been cancelled. The surgeon is out of town due to a death in the family. The worse news though is that Benjamin may have an infection. His tummy has gotten a little red and hard which would indicate something may be going on. His bloodwork was off as well indicating his body may be fighting something. The surgeon looked at him and his x-ray and said everything looked fine so far, so I'm thankful for that. Antibiotics have been started. The possible cause of infection could be that the 7 days of antibiotics he was on post surgery didn't quite get rid of all that was festering in his belly from the perforation. So in the past week its been starting to grow again. That seems to be the most logical answer. Benjamin is not acting sick..his vitals are stable..he complains when his diaper is changed and bloodwork is done...this is good. If he were lethargic then there would be more of a concern. Hopefully after 24-48hrs of antibiotics everything will start to get better again. Pray this doesn't turn into anything major and that surgery will be rescheduled sooner then later.

Anticipation

I just want Monday to be here and the surgery to be over. I'm so nervous about him having another major operation. He did so great last time so its hard not to assume he'll do even better this time, but you can't assume anything. I'm scared.

He had a great day again today. He had bloodwork for the first time today in a while and his hemoglobin was really low...the nurse even did repeat bloodwork because she couldn't believe how low it was. The funny thing is is that Benjamin had no signs of being anemic. So he had a blood transfusion today. Anemia is common in preemies because their bodies can't keep making new cells as quickly as the cells die off. Because surgery is Monday they had to make sure his blood is ready. So he may have another one yet before Monday.

Say a prayer for the doctor who is doing the surgery, say a prayer that Benjamin will be ok and recover as well as last time...and say a prayer for all the other babies in the NICU.

The date

The date has been set for Benjamin's surgery. It will be Monday at 10am. The surgery will probably take about 2 hours depending on how much scar tissue has formed inside. Once the surgery is done he can start eating a couple days later. The first little bit they have to make sure there is no leaking or scar tissue obstructing the path, but once we're past that the plan is to eat a grow. Coming home doesn't seem so far off anymore. We're excited. I am also very anxious about this surgery. It is a major operation and there are always risks involved, but since he did so well last time around when he was so sick we don't anticipate any issues. The doctor did say that the first 24hrs he may get worse before he gets better, but we just have to wait and see. I feel bad that he has to be intubated and on meds and have another incision, but that's out of my control. I know he'll never remember any of this, so I am thankful for that.
Please pray that surgery on Monday goes well and that Benjamin will recover just as quickly as he did after his last surgery.

The London Free Press did a story on a NICU doctor...it features Benjamin. You can't see him that well, but we thought it was kind of neat.
http://www.lfpress.com/news/london/2010/07/21/14784651.html

Grow baby grow

Benjamin gained over 2 oz since Sunday. I was so excited that he is over 4lbs now. Yay for progress. The surgeon was in today as well. She was so happy with Benjamin's progress. She still has to chat with Benjamin's neo-natal doctor but surgery should be within the week. I was shocked that it is so soon..but thrilled. I noticed in his chart tonight that it said Friday or next week. I guess the biggest obstacle right now is finding OR time. I hope we'll know more tomorrow. I just can't wait to have this surgery behind us.

32 weeks

Benjamin is 32 weeks today....(5 weeks old tomorrow). He is great. He had another good day. I went to the hospital for my afternoon snuggle and it was great. But as Benjamin grows he's starting to feel more hungry...so as he was tucked into my hospital gown, skin to skin, he started to complain. He has definitely found his voice...and the nurse realized that he was looking for something ;) He kept bobbing his head around my chest and when face down he was rooting around and had his tongue out. The nurse did say that 32 weeks is the age that they start to introduce them to mom...right on time he is ready. I felt so bad because he knows its there, but he can't eat yet. I felt guilty having him so close.

Anyways I'll attach a pic of his tummy...its not the most flattering picture. Its not a great angle and his tummy is still pretty round...but you can see how healed his little tummy is.

Kangaroo

I am so happy because I got to kangaroo with Benjamin again. We got to snuggle skin to skin for the first time since June 30th. It was so nice. He snuggled in and his breathing slowed and he slept so peacefully. I loved it.

The nurse took the steri-strips off his incision and it looks amazing. I cannot believe how healed he is 11 days post op. I will take some pictures tomorrow. The nurses did tell us that preemies heal in hyper speed....I never realized what that meant. His incision is completely healed...no redness or scabbing at all. Its crazy.

All is well...and I am so thankful.

Precious

My little man is great. He had another good day. I am so thankful for everyday that passes. I am trying to enjoy every minute with him. I am trying to enjoy every minute I have with all of my loved ones...things can change in an instant. Life is so precious.

The same

Everything is pretty much the same.. I am happy that I really don't have much to tell you. Benjamin had a great day. We had a chat with one of his doctors about a few things. I'm worried about his body and all that he is getting right now. There is a concern for one on the fluids he is on..its a nutrition component that he needs to be on to grow, but it is also hard on his liver. The doctor did say that Benjamin may start to turn yellow as time goes on. They have been checking his levels and they are low for jaundice right now, so I am thankful for that..but as the days pass there is an increase risk for liver damage. But the doctor reassured me it is low..but it still worries me. The surgeon is supposed to come by next week..we're trying to pin her down so we can be there for that. Hopefully then we'll have an idea of when the next surgery will be. We were told that he can start feeding as early as 48 hours after his next surgery, but it will be a long slow process. One day he may do well with feedings, the next day not so much..so we have to be prepared for that. There is always a chance scar tissue could build up and narrow the passage through his intestine and he may need another surgery to help that. I try not to worry about all that right now.

I got to give Benjamin a sponge bath tonight..which was nice. Its nice to be as involved as possible. He lost a little weight...but he could still be losing some fluid from being sick. My grams to pounds conversion is a little off. Last time he wasn't 3lbs 8oz...but 3 lbs 13 oz. So its exciting to be getting close to the 4lbs mark. Hopefully next weigh in he'll be up again.

Joshua 1 : 9

I recieved a very nice little plaque today with this verse on it. I have decided that this will be my new mantra.... "Be strong and courageous! Do not be dismayed...for the Lord your God is with you wherever you go." I have found comfort in this today.

Benjamin had another good day. He was awake for a while this morning. He is starting to be more active..he was sucking his soother and fingers. He was complaining a bit too. He is starting to act hungry. I feel bad that he can't eat...but all in time. Hopefully tomorrow we'll be able to chat with the doctors and get a better idea of what the future holds.

Questions

I have so many questions about the future and am starting to feel anxious about everything. I am so happy with Benjamin's progress, but I'm so worried about what all the medication has done to his body..how he will do having another surgery..how his bowels will function once his surgery is over. I know none of this is in my control, but handing it over is so hard. Hopefully I can talk to the doctors and get a better idea of what the future might hold. On a positive note...Benjamin is on low flow today...he was real alert today. He was weighed and measured. He's 3lbs 9oz and had grown 2 inches since birth.

Growing

Yay..we seem to be back to the point we were before Benjamin got sick. He was weighed last night and is now 3lbs 8oz. Tomorrow the RT said they might put him back onto low flow oxygen, which is the step before nothing...him breathing and not needing anything. So that is so exciting too. He is great. I held him for close to three hours today. I just love him so much.

My boy

He is doing fantastic. I'm so thankful. I have nothing to tell you because he is doing so great. He is almost off all his meds now. He finishes his antibiotics tomorrow and I think that's it. He still is getting a small dose of pain killers for his incision, but they've weaned him down on that as well. I'm so happy. I pray he continues to do so well.

Extubated

When I got the hospital today I was ecstatic to see that Benjamin had been extubated. I am (cautiously) so excited to have made so much progress in the past few days. He now only has his long line in his arm and his feeding tube. AND I got to hold him. I was so happy I could have cried. He snuggled right up and fell fast asleep. If it were my choice I would still be there. He is so much more alert and even cried for me...which I adore. It means we're heading in the right direction. What a great day!!!!

Thankful

I am so thankful for the doctors and nurses in the NICU. They have done so much and worked so hard. I can't imagine where we'd be without them.
Benjamin had a great day. He is off the sedative he was on and is really starting to wake up more. He was pretty restless today, but I think he's just uncomfortable from laying the same way for so long. He lost a lot of fluid which is great. He weighed in tonight at 3lbs. Him dropping 13oz is a good thing for once. He is doing most of the breathing on his own...he's only recieving 10 extra breaths. His hemoglobin went up, which is awesome. Hopefully he won't need another transfusion...and his body can take care of itself.
We are taking things one day at a time. The NICU is a great place, but can be very scarey at the same time. I feel paranoid, that everytime something rings, or changes there is something wrong. Trying to relax has been so hard and we are totally exhausted. As each day passes and Benjamin is good I give a big sigh of relief that we've made it another day. All the prayers and so appreciated, but please don't stop...our road is long.

Quiet

We are now 48 hours post surgery and Benjamin is still doing great. He had a nice quiet day. He is now on a tradition ventilator which is great. He can start to do some work on his own. He is still so swollen. He weighed in last night at a whopping 3lbs 13oz. A lot of that is because of the fluid that has accumulated. As he starts to feel better and moving he'll get rid of a lot of it. Benjamin seemed more comfortable today. He slept quietly for most of the day. He only made a few grumpy faces so I'm happy that he's not to uncomfortable. I think he may have to have another transfusion tomorrow, but I'm ok with that...it will just make him feel better. So pray the next 48 hours are as quiet and uneventful as the last..

24 Hours

Benjamin made it through the first 24 hours like a star. The surgeon had said he might get worse before he gets better...but after surgery Benjamin just stablized. He had a good night last night and a good quiet day today. His heart rate was between 185-195 yesterday and today it has been between 135-145. The nurses have taken away alot of the meds to stablize his bloodwork because it has been great. His hemoglobin is up, his platelets are up...and he is being weaned off the medication to elevate his blood pressure. There is also talk of taking him off the oscillator tomorrow and putting him on a conventional ventilator. He is doing most of the breathing on his own. He is definitely in pain though. His poor little belly is so tender. He is fine while sleeping, but any little stretch and he is in obvious pain. He is on a lot of medication to keep him comfortable. He has gotten rid of some of the fluid built up in his body, but it will take time because he is not moving so it still builds up. He definitely looks puffy in his pictures. We're taking things an hour at a time...we are so happy with his progress...but very cautious about getting our hopes to high..I know that sounds bad, but its been so scary that we can't help but be cautious. I am thankful for every minute I can be with him.

What a day

We called the hospital through the night last night and the nurse had said that things had gone downhill. When I got to the hospital this morning Benjamin had gotten worse again. They did more x-rays, more ultrasounds and bloodwork. Finally they decided to have a talk with the surgeon. The surgeon came up and looked at Benjamin. She first thought that she wasn't sure if she'd find anything and she didn't want to open him up because he was to sick. She ordered another ultrasound and noticed a lot of fluid built up around his organs. She decided then that surgery was going to be necessary. We were told that he was really sick and might not make it through. The surgeon decided that they would do th surgery right in the NICU to minimize the stress on Benjamin. My mom and dad came and supported us while we waited. Praise Jesus that he made it through. The surgeon found a 16cm piece of his intestine that was affected by the disease and it had 6 holes. Benjamin's body had tried to protect itself from the diseased area and the affected area had wrapped up in a ball and tuck under the middle of his tummy. Thats why it was never caught on x-ray. I'm so thankful for the doctor who went with her gut feeling and operated. He would just get more sick if she decided not to. Benjamin is fairly stable now...the next 24hrs are the most critical, and he will need another surgery in a month or so. But things are looking up. Thanks to everyone for the prayers..and especially to Mark and George who prayed with us before surgery. Praise God for the miracle He preformed today.

Thankful for small steps

Small steps in the right direction....I am so thankful for them. Today Benjamin had another x-ray. Finally his intestine looked smaller then yesterday. Praise God. I've attached an x-ray picture from his x-ray yesterday. You can see how swollen his intestines are, especially on his right side. His tummy has gotten a bit bigger again, but its fluid build up. Hopefully over the next couple days he'll be able to get rid of some of that fluid. Benjamin seemed a lot more comfortable today. He could even rest on his right side, which had been causing him so much pain the last few days. He is on the lowest settings on the oscillator so the nurse said the next step in to either switch to a conventional ventilator or extubate. Yay. We still don't know if Benjamin will need surgery. Once everything settles out and he starts eating again they'll asses how his intestine handles food. No one knows right now how much damage has been done. Pray that he will fully heal and not need surgery. We are so thankful for all the prayers from everyone who knows and especially from those who don't know us. I know Benjamin has quite the following on here and we appreciate every prayer said.

A better day

This morning when we got to the hospital Benjamin looked better. The nurses and RTs noticed this as well. His belly was a little bigger, they are now measuring the changes. But it wasn't as red as yesterday. They did a repeat x-ray and there has been no change in his intestines. Which is good. It hasn't gotten worse. He has slowly been weaning from the oscillator. His numbers were great and he was doing well getting rid of his carbon dioxide and keeping his oxygen where it should be. His hemoglobin and platelates are still a little low...he may require more transfusions, but thats ok. The doctor seems to think we are past the most critical point now..Of coarse there are no guarentees, but we're praying he's on the mend. We're gonna keep praying, because thats all we can do.

One day at a time

What an emotional rollercoaster we are on right now. Benjamin is ok. For a sick baby he is stable. His bloodwork has improved. He had another blood transfusion last night and his hemoglobin is up, which is good. His platelets are low, but not dangerously low, its just proof that his body is fighting an infection. The doctor confirmed today that Benjamin does have necrotizing entercolitis. His intestine is very swollen and therefore his belly is very swollen. They will keep a close eye on him because with this condition his bowel could perforate which would require immediate surgery. There is a 50/50 chance that he will need surgery in the future to remove the part of the intestine that the infection has affected. We're praying he will not need this and will recover with no problem. Benjamin was very uncomfortable this morning...its hard to see him in pain. He was crying. But the nurse gave him so more pain medication, so I am thankful for that. We are definitely no out of the woods so more prayers are appreciated.

Thanks

I just want to say thank you to all the people who have been praying for Benjamin. Last night we left feeling a bit better about his situation then we did in the morning. The doctor thought things were starting to look up. We called at 3am to see how he was doing and got a good report from the nurse. This morning Benjamin was much more active then he had been the last few days, but he was obviously uncomfortable. The nurse thought as he moved his tummy hurt more so he got some pain medication which really seemed to help. His blood pressure came down, his heart rate came down and he slept. The doctor is doing another abdominal x-ray tonight at 6pm. They believe Benjamin has an infection called necrotizing entercolitis, which is common in preterm babies, especially ones as small as him. They started stronger anti-biotics as well...so hopefully this is the turn around. His tummy still looks very swollen and he may require another blood tranfusion in the next day or so. He is also off of oxygen and is breathing room air through his oscillator which is also a positive step.. I'm hoping that within the next week he'll be off that and back onto a regular ventilator.
I feel like we are back to square one...but as long as he is getting better I'm ok with starting over. He is such a fighter...he definitely keeps me going.

Prayers

Thats what we need right now. Benjamin is very sick. He was intubated yesterday afternoon, and now today he is on a machine called a oscillator. This means his condition has gotten worse and he is unable to do the breathing on his own. He had a blood transfusion today through an IV in his head. The doctors also put another line in his left arm so they could take blood without poking him every 3-4 hours. After the tranfusion the nurse was expecting his bloodwork to look better, unfortunately it hasn't improved. The doctors still aren't sure what is causing him an issue. His x-ray this morning showed his belly looking better, so the cause of his illness is still unknown. He did seem to be moving around more this afternoon and he had his eyes open for a bit, which is good, but we were hoping to see more of an improvement by now.
Anyways, the girls are gone for the weekend and Jon and I are spending a lot of time at the hospital. He's a strong boy, so hopefully he'll fight his way through this.

Sick little boy

We got a phone call from the nurse this early this morning. I think my heart skips a few beats everytime the hospital calls. Throughout the night Benjamin wasn't digesting his milk. They did an x-ray on his belly and things seemed kind of off. His belly was distended. The nurse stopped his feeds and did all sorts of tests. My poor little guy has blood taken from several sights and also a lumbar puncture. It makes me so sad that I can't always be there with him when he goes through these procedures. I just think about him crying and me being there to comfort him. Anyways, it will take a few days for some of the results to come in. They started a round of antibiotics and will repeat his x-ray this afternoon to check how things are going. The good thing is is that his breathing is still stable.. they increased his oxygen, but he is still just using the nasal cannulas. The nurse did say there was a chance they could have to intubate him again, we're praying that his breathing remains stable and they won't have to do that. I can't hold him or even touch him right now, so that is hard. I just want to comfort him. This is so hard, and I am so scared, but I know he's in the best place he can be right now. Pray for healing.