So excited

When we got to the hospital after rounds today the nurse told me I could start trying to breastfeed. I'm a sooo excited. We tried for a few minutes today, but Benjamin was very tired...so he latched once and sucked a few times, but that's all. I know this will be a process. But just to be able to try is an amazing. I am allowed to try 2x a day for about 15min. The biggest issue is keeping him awake and the fact that he is on continuous feeds...his tummy is never empty so he's not real hungry so he's not that motivated right now. But we'll keep working away at it..for development purposes.

We changed the way the nurses were doing his dressing and by the end of the day his incision started looking a bit better. So we're sticking with the original way. The doctor also decided to try thickening up my breast milk on his continuous feeds to see if it would keep his stool from being so watery....when its so watery it can break the skin down more. So I hope that works...we're willing to try anything. So we're sitting at 7ml/hour for now..which I am happy with. Hopefully in a few more days they will increase again. We'll see.

So for now, all is well and we are greatful.

Frustration

Today has been frustrating. Benjamin is doing well, but the doctor on this week (a different doctor then last week) changed the way we were covering his stoma/incision. I hadn't seen it in 24hours and when I finally saw it this afternoon it had gotten worse again. I wish they would have just left things the way they were, he was healing so well. So tonight Jon and I told his nurse to do it the old way again... I guess we have have the right to do that. The nurse had the original plan typed up and hanging on the wall by his bed, but then it all changed so another nurse crossed stuff off an changed it all..so it seems so confusing. Its so frustrating..so we're going to have a meeting with the doctor tomorrow.

Tonight when we went in Benjamin was sleeping under his little tent. When we looked under the blankets were completely over his head and his oxygen prongs were out of his nose. No one knows how long he was sleeping like that, but he never had an issue with no oxygen in so that's promising. The doctor also increased his feeds to 7mls/hour. We're almost halfway there. He seems to be tolerating that well. I'm so thankful.

6

We're up to 6mls/per hour. Yay. I'm so excited that Benjamin is doing so well tolerating his feeds. The surgeon was in today and said that we can start pushing him a little more once we can put a bag on his stoma...that way we can keep a better eye on whats coming out. Right now we have a pretty complex method...lol. We use a diaper and we wrap it around his tummy horizontally to catch everything that comes out.. Because he has an small open area still we can't put the bag on yet. Hopefully this week sometime it will be healed enough.

Benjamin had a good day. He was very quiet. He seemed to fuss when I put him down, but settle when I would hold him...I guess he's manipulating me already. He loves laying on his tummy now, and we put him into a sleeper. He looks like such a big boy in clothes.

Anyways all is well for now. I'm carefully optimistic that things will continue to go well. He has more bloodwork on Friday. Hopefully his hemoglobin will be up, especially because he's on an iron supplement. We're praying that his bilirubin will go down as well...Continued prayers and support are so important even through the stable times... we appreciate them all.

Bath night

Tonight we got Benjamin into the tub for the first time since his surgeries. It was great to finally give him a good scrub down. He didn't seem to mind to much either. He had a great night last night and they even had his oxygen flow way down by morning..he's kind of been all over the place with his oxygen requirement. Sometimes I think the sat. probe isn't that accurate because of his chubby feet. Anyways..he had a good day. No feed increases because he spit up just as the doctors were in doing rounds. Hopefully tomorrow they will bump him to 6mls/hour. We'll see.

Emotional day

Today was a hard day...Benjamin had a couple of spells where his heart rate dropped yesterday and overnight last night. He also has been spitting up a bit. His oxygen requirements went up in the past 24hrs so the doctors are trying to figure out what is going on. So he had a full round of bloodwork and x-rays. I was so worried. But everything came back fine. His hemoglobin is still low, but hasn't dropped any lower. So now he is getting iron to try to help with the anemia. His x-rays were great. The doctor thinks that he is having so reflux, so they increased his medication for that. I hope that helps. His bilirubin has gone up. I think he's looking a little jaundice...we're hoping in the next week or so it will start to go down. Its all a side effect from his TPN...IV nutrients. So as his feeds go up his TPN goes down..and does less harm to his liver. This is one of my biggest worries right now.

Anyways, tonight I went back to the hospital and snuggled up with him in a kangaroo chair. He laid so peacefully on my chest and we even could reduce his oxygen flow. So when I left it was back to where it was yesterday. Its so nice just to snuggle...and I know he loves it because his oxygen saturation goes up..his heart rate lowers and his respirations stabilize. I wish I could be there around the clock.

Snuggles

Benjamin is really starting to enjoy his snuggles. Twice today I found him snuggling with his nurses. That makes me so happy. He seems to be getting sick of laying on his back so we flipped him to his tummy...he really did well and slept so contently.
Feeds are going well. Tomorrow they will increase to 6mls and hopefully they will repeat his bloodwork to see if his hemoglobin has gone up. I noticed him working a little harder with his breathing which is probably because it has been low. It makes me nervous...but I guess its all part of the process.
Other then that things are well. He had a few visitors, which is always nice and tomorrow he finally gets to meet his Aunt Andrea and Uncle Mike who surprised us by coming home 5 days early...its nice to show him off.

Donate

I really want everyone who reads my blog to consider donating blood. I never really thought about giving before all this happened. The thought of the needle put me off all together...but now its the least I can do. Benjamin has recieved 14 transfusions since he was born and if people didn't donate he might not be here. Yesterday Jon and I went. I can't donate until 6mths after giving birth, but Jon donated. There is such a shortage...Benjamin has also recieved platelets, plasma and immunoglobulin(another immune boosting blood product)which you can donate as well. I will donate every 57 days from now on.

Today was another quiet day. The cardiologist was in and did another EKG to check out Benjamin's murmur. The hole is still there, but doesn't seem to be affecting him. So as long as it doesn't cause any issues he will be seen as an outpatient as he gets older. It could close on its own..or just never be a problem. The biggest thing now is getting him off his oxygen. The murmur may affect that. If they can't get him off the Oxygen they may have to repair it sooner then later. The surgeon was also in today.. She is so happy with Benjamin's progress. She took out his stitches so thats good. Benjamin's feeds are now up to 5mls/hr. We are keeping a close eye on his output to make sure he doesn't start rejecting his feeds. But so far so good. 5mls isn't a lot, but its 5mls/hr less of the TPN he's on that is harming his liver. The nutritionist was happy with Benjamin's growth. He's just below the 50th percentile for growth which is good considering he has had such poor nutrition. He ways 7lbs now...He's still a bit swollen, but we're getting closer to his true weight. He's such a big boy...
I think that's about it for today. Things are well.

Sleepy

Benjamin had a very sleepy day today. I think it might be because the nurses were changing his dressings every 2 hours because he had another red spot. So he was disturbed alot through the night. Things are still looking good dispite a new little red area....it didn't get any worse today. Tomorrow they will increase his feeds to 5mls so that's great. They also decreased his oxygen pressure, so we're getting close to getting off the oxygen too. That's so exciting. I'm sure Ben will be glad to have all the tape and prongs off his face. So we're still working our way slowly in the right direction. We're so thankful.

Another day

Benjamin had another good day. Its so nice to finally have a quiet calm period. His feeds have been increased to 4mls/per hour and so far so good. The surgeon was in an had a peak at his stoma. She is very happy with how things are going. So over all things are well. God is good...

Baby steps

We're taking baby steps in the right direction. Even if they are small as long as they are in the right direction I am happy. Benjamin's tummy is looking better every day. He is still swollen..I have to remind myself that its only 2 weeks post surgery so he is rightfully swollen still. It seems his last surgery was so long ago already. His tummy was definitely less red today though. I'm glad that things are starting to settle. The nurse measured the open area of his incision and it has gotten smaller, so we are so thankful for that. Hopefully over the next week it will close up.

I spent the afternoon snuggling with him. It was nice. I haven't spent much time holding him lately because he seems to be a little uncomfortable if we move him around to much...but today once he found his comfy spot he slept on me for 2.5 hours...it was heaven. Jon and I now do all the work when we are there, which we love. Its so nice to feel like a parent and to be able to do things for him. I'm so happy with the way things are going..even if they are slow. Hopefully tomorrow they will increase feeds again. They left him at 3mls all weekend. I kind of wished they would have increased today, but they didn't. So I'm sure they will tomorrow.

Anyways, it feels like things are under control finally and we can breathe a little.

Happy Birthday Daddy

Today was another good day. Benjamin is good. The doctor decided not to increase his feeds, just give him another day to adjust. Tomorrow they may increase again. Very calm and quiet. He spent the afternoon snuggling with daddy. His nurse today was fabulous and so thoughtful. When Jon got to the hospital his she had made him this card. It made me cry. I know it made Jon's day.

Getting involved

Jon and I are really starting to get involved more with Benjamin's care. Tonight we went in an bathed him and changed all his dressings. I feel sometimes the nurses don't have the time to give him when it comes to changing his bandages as I often as I would like. They have they're own schedule for changing and such, but I prefer it more often. Right now we are trying to get thinks under control with his incision. There is a large open spot right beside the stoma that really needs to be monitored..to make sure no stool is getting in and causing an issue. It seems to be healing, but its a constant problem. So Jon and I know how to change everything and can do it on our own. We're there a lot so I'm happy we can do it. The doctor put Benjamin on a special antibiotic today that is for skin infections and wounds...they don't think there is an infection, but his tummy is very red so they thought this would help and maybe help him heal faster. So I hope that works. His feeds are up to 3mls/hour now and they are hoping to have him up to 5mls/hour by Monday. I'm praying that goes well. Anyways, that's all thats new. Benjamin is such a good patient boy. I love him so much.

Good boy

Benjamin is such a good boy. He has such a great disposition. Through everything he's been amazing. He's been so calm since he started eating. They increased his feeds to 1.5mls/hour this morning and at 1am it will go up to 2mls. I am still anxious about it...but so far so good. I am so thankful for the progress that has been made. I truly feel all the support and prayers have made a world of difference.

Calm

Benjamin had a very calm and quiet day. I spent the afternoon by his bedside watching him sleep peacefully. Feeding is going well. The doctors decided not to increase today which I am happy with. I definitely don't want them to push him. So maybe tomorrow. His bloodwork was good today so no transfusions for now. Our only issue is his incision, which is having a hard time healing. The nurses are now building a team of regular nurses to take care of Benjamin to maintain some kind of consistancy. This is great for us because his situation is unique and it gets kind of frustrating when a new nurse comes on and she has never looked after him before. They are also going to show us how to do everything so we can help maintain his care even in the hospital. He's going to need more attention and they don't always have the extra time. I also got to finally bring home some of his dirty laundry...I am thankful for his dirty laundry. So over all today was another success. God is good ...I truly feel Him helping us through this.

SHHHH

I almost don't want to write about the good things anymore...I feel like everytime we make progress its followed by set backs. But I want everyone to know what happened today. When I called the hospital through the night to check in the nurse told me that they had stopped feeds again. When they went to check his residuals after a few hours they withdrew 8 mls of saliva and old blood. When I got to the hospital this morning Benjamin was pretty grumpy. He was acting very hungry and uncomfortable. When I changed his diaper I noticed his legs and lower body was pretty swollen. So he is definitely still retaining fluid. I think that he may be uncomfortable because of that..so the doctors gave him a few things to help get rid of that fluid. When I was holding him he was sucking on his soother like he was starving. So the nurse asked me what I thought about feeds and my gut feeling was just to feed him...So during rounds the doctors finally decided that they would start feeds again, 1ml per hour continuously, and no checking residuals. They think the old blood may be from stomach irritation. Their hope now is the breastmilk will help balance everything out. So unless he shows us that he has an upset tummy they are just going to leave him alone. He had a whole bunch of bloodwork done today and everything looked pretty good. His platelets and hemoglobin are a little low, but that could be from healing...his liver function has improved which I am so thankful for. So overall today was a good day. I'm so anxious about him tolerating his feeds, but so far so good. I am so thankful for a good day.

Baby steps

We've made a couple baby steps today..I'm thankful for them..no matter how small. The doctors restarted feeds around noon today. He is on continuous feed now. His breastmilk goes into a syringe and on a pump which pushes it into his tummy at a very slow rate. He's recieving 0.5mls every hour. Its such a small amount, but its something. So far the nurses have only drawn back some saliva and old blood (probably from surgery) after a few hours of feed. There was no bile present so his milk is digesting..so far. The doctors will slowly increase his feed amounts as time goes on. Benjamin seemed a little uncomfortable today, but I'm sure as things slowly start to move their way through he'll have a little discomfort. His stomach and intestines really haven't done much work since feeds were stopped July 1st. The nurses finally got the bag secured on his stoma well. They have been having an issue with that because there is a part of his incision right beside it that is not healed and the stool runs into it...ouch. This breaks down the skin more. They are keeping an eye on that as you can imagine it can cause a raging infection. Its been trial and error today trying to find the best way to fit the bag on and to protect his skin. But he is really starting to produce stool..I never thought I'd be so happy to see poop :) Anyways, I'm a nervous wreck with everything going..so worried that he'll reject his feedings..but I'm trying to just take is one day at a time. He's such a resiliant amazing little boy. Its unbelievable what he has already overcome.

2 months

Benjamin is 2 months old today. I can hardly believe it, yet I can hardly remember life before him. He had a pretty good day. He was moved into a crib and into the front room. The front room is for kids who need less care. So that is a good thing. The surgeon was in and gave the nurses the go ahead for feeds. We watched the whole process of attaching the bag to his stoma, that was a learning experience. But tonight they stopped feeds again. He wasn't digesting after the second feed. Its hard not to panic. I'm just so worried there is still something wrong. The doctor came and talked to us and told us that it could just be a little to soon. He hasn't really eaten anything since July 1st so it will take a while for his stomach and intestines to start functioning again. He also said they will just see whats in his tummy in the morning and then start again. The surgeon will be in in the morning again so we'll see what she says. Pray that everything starts to work...we just need something to go right.

Low flow

So exciting!!! Benjamin has been extubated and went right onto low flow. We skipped the whole high flow step. He's doing great on it too. No apnea episodes at all. The surgeon was in and was still happy with everything. The nurses tried to convince the doctors to let Benjamin go into a crib again, but they said not yet. I guess they want to keep him in the giraffe for a bit since his incisions are still a bit open..to avoid germs as much as possible, which I understand. But he is getting so big in it and he gets hot. So I think in the next few days we'll get there. I got to hold him again finally. It was so nice. The one picture is of me cutting his nails. I just love doing the little things for him..something so insignificant like cutting his nails means so much to me. He's doing so good.

Calm

Benjamin had a calm quiet day today. Both surgeons were in and had a peak at his tummy. Its fairly red, but they both thought it looked ok..so I am happy with that. His bowels are starting to work, which is great. Today for sure there were signs of that. So feeding could start soon. Tomorrow they will most likely extubate him..I'm so excited. I think that Benjamin will be so much happier. He doesn't even flinch when they clean his incisions, but cries when he wiggles his head with that tube in. So I definitely think he'll be much more comfortable with it out. Next step is back into a crib...hopefully that will happen soon too.

Progress

All is well and progress is being made. Benjamin was switched to the regular ventilator today and is doing well on it. Hopefully within the next couple days he will be extubated. He's tried a few times to extubate himself, but we have managed to stop him. His tummy is less puffy and things seem to be starting to move...the stoma is slowly start to drain a little, which is good. The surgeon was in again to take a peak and was happy with how things were going. His morphine was also turned down today and he seemed to tolerate it well.

So overall things are going well. We are taking things one day at a time and praying that things will continue to go smoothly.

Miracles

I am a true believer in miracles. Benjamin is living proof. He is good. He was very awake and active today. He almost extubated himself several times today, so I think its just a matter of time. Its nice to see him awake and moving around. He is so swollen and moving will help. We met with the neonatalogist to talk about Benjamin's future. She is really happy with his progress. This is going to be a process and it will be one day at a time. As he starts to eat there is going to be a lot of tweaking. We don't know how much he'll tolerate...how he will grow and how his skin will handle the ostomy. But I'm trying not to worry to much about that right now and deal with what is happening today only. I am so thankful just to have him here....he's amazing.

Fighter

My little man is incredible. He is such a fighter...almost superhuman. He had a good day. Benjamin really started to wake up and move around alot today. He had his eyes open on and off and was very aware when we talked to him. His ventilation has slowly been going day and he seems to be doing a lot of breathing on his own. Finally after 3 tranfusions in 2 days his hemoglobin is good. He has now had 12 transfusions. He is very puffy and retaining a lot of fluid, but as he starts to move he will get rid of it. He has definitely got a lot of spirit. Even on a high dose of morphine he grabbed onto his breathing tube..luckily dad was close by to pry his fingers off. We're not quite ready to extubate yet.

The surgeon was in as well today. She has never had what happened to Benjamin happen before. She felt horrible, but obviously it wasn't her fault. There is always a small chance of a leak, but the two reconnected ends were not even close together. She looked at the incision and the stoma and was happy with how everything looked so far. There is a bigger risk of infection because the exit to his bowel is in the incision, which is not optimal, but the only way it worked. So they have to keep a close eye on that. She did say that he can start small amounts of milk on the weekend, if things continue to progress the way they are. This is exciting, but so scarey. The future now is so uncertain. Benjamin could come with the ileostomy. Jon and I can learn to care for it. The best case sinario is Benjamin can grow and heal and surgery can be put off as long as possible. But because this is in his small intestine nutrient absorbtion isn't great. Alot of nutrients are absorbed in our large intestine, his food will never make it there. So he could have trouble gaining weight and getting what he needs. There is also an issue with skin break down around the stoma. The nurses will do their best to protect the skin around it, but because his stool will be more liquid it can easily leak onto the skin. But I guess we'll have to cross that bridge when we get there.

Anyways that's all I know for now. I will forever be greatful for all the support and prayers. They have truly helped us through this.

Another day

We have been blessed with another day and I am so thankful for that. Today has been so overwhelming and I am a mess. Benjamin on the other hand has had a very quiet day. He is stable. I draw my strength from him. Please keep praying.

What a day

As of now Benjamin is stable. I cannot believe the strength that he has. He made it through another scary very serious surgery. Last night around 11:30 we go the call from the surgeon saying that they were going to operate immediately. The original plan was surgery was going to take 2 hours, but it ended up lasting about 4hrs. When the doctor opened Benjamin up she found the bowel that had been reconnected had torn apart and was leaking bile and stool into his abdominal cavity. No one could believe that he had no symptoms up until last night because she said it had been like this for a few days. The bowel was very stuck in different areas so it too her a long time to cut it all free. So his insides are very raw and swollen. She decided to make stoma and give him an illiostomy. What this is is a the end of his bowel is now coming out an incision on his belly. All the contents of his bowels will now empty into the bag. This will give everything a chance to fully heal. Then in approximately 6-12 weeks they will go back in and reconnect everything inside. So we have another surgery down the road. Benjammin has been very stable since surgery. His blood pressure has been good. He is on 3 different kinds of antibiotic to help clear out the mess that was in his abdomen. He's on a high dose of morphine of coarse...everything is very sore. The surgeon was in around 4:00 this afternoon and was very happy with how he looked and how the incision looked. So for now, things are ok. He is still very very sick and we need you to pray.

Prayers

Benjamin had emergency surgery through the night. He is very sick. Prayers are needed now more then ever.

Down

I'm feeling down. Overall Benjamin had a good day. But when I got to the hospital tonight and went to change him I noticed his belly was really red...and he did not like when the nurse touched it. So the doctor did an x-ray and noticed a swollen area in his intestine. She wasn't sure if it was swollen because of surgery or if something is actually going on. So bloodwork is being done as we speak...Benjamin is a champ. He didn't even cry when they stuck the long Iv needle into his head. He's definitely stronger then I am. If his red/white blood cell ratio is out of wack it will indicate he may be fighting an infection. If that's they case they will start him on antibiotics right away..if they are fine they will call the surgeon to come in and have a look. I'm so scared. How much can his little body take? Pray that everything will be ok and that I can stay strong for him.

Bumps

I will never get used to the bumps in the road. Benjamin is doing pretty good. But the stopped his feeds around 4am when things weren't really digesting that great. So here we are back to square one. We were told that it would probably go that way, but a part of me was hoping that it would all go smoothly. The doctors have now mentioned a lower GI x-ray. They will give him an enima of dye and that will show up on an x-ray so they see if the intestine is clear, narrowed or blocked. Obviously I don't want him to go through that, but it would be nice to know for sure whats going on in there. So we have to wait and see if thats the way it will go. He is still so swollen and all of the nurses seem to think it may just be to early for him to eat. So everything will be reassessed in a few days. Pray pray pray that there is no blockage...if there is he'll need surgery again. We're trying not to worry about that yet, but its hard....

A big day

Today was a big day. There was lots of excitement and changes. This morning when I got to the hospital there was a crib waiting for Benjamin. So I helped the nurses get him all switched over. We weighed him and he is now 5lbs 5oz and we even put a little diaper shirt on him. It was so nice to say good-bye to the incubator. It was a big step. Then this afternoon when Jon go there he had been moved. Finally we're out of the back room. The back room is where all the babies go first and as they get better they get moved out. Well we've been there since the beginning and have watched a lot move out. So it was so great to see that he is out of the back room. Then when I got back there tonight they were just starting feeds. So he's getting 1ml of breastmilk every 2 hours. Such a small amount, but still something. Now we just pray....pray that everything will function normally and his body will start doing what its supposed to. His tummy is still very swollen, but his incision looks great. I'm thankful for all the big steps today, but still very worried that things won't go according to plan. These next few days will be so important to Benjamin's progress so more prayers are appreciated.

Happy

I feel really happy today. Benjamin is doing so good. I got to hold him again for the first time in a couple weeks. It was so nice just to cuddle. There has been talk of starting feeds soon. The doctors wanted to wait a couple more days. They have been suctioning his feeding tube, keeping an eye on what is in his tummy. Over the past few days there has been less bile, which is what they are watching for. As things start to work again there will be less and less so we are making progress. They definitely don't want to rush anything. Benjamin also had his eyes checked today. They are excellent. Preemies are at risk for a condition called retinopathy of prematurity, but he doesn't have it...We are thankful for that. We still don't have a crib...the NICU is pretty full, but tomorrow there are supposed to be a few discharges so I'm hoping it will happen then.

Waiting

Right now we're waiting. I haven't been able to get any clear answers from the doctors about when Benjamin can start eating again. I don't want to rush things obviously, but I'm so anxious about it all. The nurse today said she could here bowel sounds in his tummy which is a good sign. Before his second surgery they could barely hear anything. So that makes me hopeful that things are starting to work. His incision looks great. He's still pretty puffy, which you can see in the picture, but he is starting to move around a lot again so he'll get rid of the fluid that has built up.

Benjamin did great today off the ventilator. He has brief apnea episodes due to the morphine, but recovers well on his own. They have been weaning every 12 hours so hopefully in a few days he'll be completely off it. He was awake lots today he is very serious and seems to be taking everything in when he's awake. Tonight the nurses were even going to move him into a crib...but they didn't have any. What a bummer. I can't wait to get him out of the incubator. So hopefully in the next couple days he'll have a big boy bed.

Will power

My little man has will power. He had a good day today. He seemed to be very peaceful. He got another transfusion today. His hemoglobin was low, most likely from blood loss during surgery. The morphine has been lowered again and he's pretty comfortable. But tonight when daddy arrived at the hospital he lifted up the blanket to take a peak into the incubater Benjamin was in the process of extubating himself. He hates the tube in his nose...and for him to be able to remove that tube with all the tape he needed to have a lot of will power. I'm hoping he'll be able to manage on high flow, but there is a chance he will need to be re-intubated because he is on morphine which suppresses his breathing. So fingers crossed he'll do well on high flow.
Anyways, all is well. I'm hoping tomorrow we'll get some answers about when he can start to eat. I think they will send a dye through his system and then do an x-ray to make sure there are no leaks before they start feeding. I'm so anxious to get that started. I just pray everything will function properly.

48 hours

Well we've made it through the most critical period post surgery and I am so thankful for that. Benjamin had another good day. He's been consistantly stable with no major bumps. The doctors have started to slowly wean him off his morphine and today he tolerated it well. The rts have also weaned down his ventilation and he seems to be doing well with that. He was awake for quite awhile and was looking around at what was going on. He's starting to move around more and has been grabbing at his tubes. I wouldn't be surprised if he extubated himself in the next few days. He still is very puffy from all the fluid build up. The nurse weighed him tonight and he was 5lbs 9oz...which is a huge jump. When he's gotten rid of all the fluid I think he'll be closer to 5lbs. We are so incredibly thankful for his progress and pray he continues to get better.