I love my kids..They are so beautiful. I couldn't ask for more!

There is a blood donor shortage in London. Canadian blood services is looking for 250 donors this week. We are going Friday...please donate. Benjamin would not be here if it weren't for donors. You never know when you or your child may need a transfusion. If your not in London please donate in your area. Its a matter of life and death.

Merry Christmas

When Benjamin first got sick we said that Christmas was always our goal..for Benjamin to come home. You don't know how thankful I am that he was home today. How incredible. I spent a lot of time thinking about the babies still in the NICU today and I prayed for them. I can't imagine how hard it must be. We had a fantastic day. The girls were up early this morning and ready to open gifts. They opened their stockings and presents...and helped Benjamin open his. It was such an amazing family time. We went over to my parents for most of the day and we just had a great time. Benjamin has a lot of girls taking care of him. Between my sisters and I there are 6 (plus another girl on the way) so Ben is definitely out numbered, but I really think he enjoys every minute. He was such a good boy. I am so thankful,...I just can't put it into words. God has blessed us so richly.

Well yesterday we had an appointment with the pediatric cardiologist. Benjamin was good. Ben now weighs 15lbs. He only cried when he had his blood pressure taken. He always cried for his blood pressure...but he laid quietly for 20 minutes while they did an ultrasound on his heart. He chatted it up with the tech..and watched a mobile above him. He did great. Anyways, there is still a tiny hole, but nothing significant at all. The cardiologist said as far as he was concerned, Benjamin had "a perfectly normal heart". He doesn't need to see him again. We are so thankful. I was worried. Even though Benjamin didn't have any symptoms I was worried that there was something underlying... But that's not the case. Praise God. We are looking forward to this weekend...and a quiet end to 2010...January is full of appointments so we're going to enjoy the break. Merry Christmas everyone. We pray that you all will have a wonderful Christmas, enjoying every second with your family!!!

Things are lovely at home as we get ready for the best Christmas of our lives. Benjamin is great. He's getting so big. He's sitting in the exersaucer now and is trying to roll. I bet in the next few weeks he'll be rolling...amazing. Tomorrow is our big appointment with the pediatric cardiologist. I have some anxiety about it. I really hope that the hole is smaller or closed. The pediatrician couldn't hear it so I hope that's a good sign. Its also Benjamin's big sisters birthday..She'll be 6. We're so happy Ben will be here for her birthday party. Anyways, I'll post tomorrow about how his appointment goes.

My boy is growing...he is now 14.5lbs. He put on another 18oz the past 2 weeks. He is falling into the normal range for a 3mth old nicely. Its great. He still seems to be nursing around the clock. We're starting to get him into a nice night time routine. He goes to be around 7pm and sleeps until 10:30 or so and then he's up to eat and goes back down my midnight. Its nice to have evenings free again. On the other hand he really wants to be held a lot through the day. I think he is board in his bouncy chair. I had him in the exersaucer at my parents and he seemed to like it, so I just have to get mine back from a friend. I'm also thinking about a jolly jumper. I'm sure he'll like it. He's so smiley now and is starting to giggle a little which I love. Tomorrow he will be 6 months old. I can't believe it. What a crazy year it has been. I am looking forward to the end of 2010 and to a fabulous 2011.

Its been a very quiet and uneventful week. With 3 snow days and close to 100cm of snow we didn't go anywhere. We had lots of great family time though. It was kind of nice. Benjamin is great. I didn't get him weighed this week because everything was closed due to the snow, so I'm anxious to take him Tuesday to see how much he's grown in 2 weeks. I bet he's close to 15lbs. I think he'll be the biggest of my babies when it come to his corrected age, because he doesn't seem to be slowing down. He slept a couple nights for 5 hours straight. It hasn't been consistant, but I'm hoping its a start. He is becoming a lot more animated and chatty and is even starting to laugh a little. I love it!! He's such a good boy! We're just enjoying life, getting ready for Christmas and loving him up as much as we can. God is good!!!

A big day

Today was a great day. Benjamin's baptism was so nice..although he cried a lot. He slept through church, but when I had to get him out of his carseat to go up he was not happy. There were quite a few other people getting baptized so it was bit of a wait and he complained the whole time. He finally quieted down and then when the minister poured the water on his head he really started to cry.. Afterwards we went to my parents house and had cake and lunch with my family. It was great. I'm so thankful for today..its something we'll always remember. Benjamin is so special and to be able to thank God publicly for him is amazing. What a day!!

Well I haven't been posting much because I really don't have anything to tell everyone. Benjamin is great. Growing daily. This past week has been a record for weight gain..he put on 15oz. That's crazy...I can't believe he's still growing so fast. He now weighs 13lbs 5oz. He's so chubby. He's been eating alot..around the clock so obviously he was having a growth spurt. We have no appointments this week which is great. I think we'll only have one more in December for Ben's second RSV vaccine and that's it until the new year. We're just visiting some friends and finishing up shopping before the stores get to crazy..I don't want to take Ben out into packed stores. Benjamin is being baptized on Sunday which we are really looking forward too. I'm just so excited to finally be able to do this. Hopefully I can keep it together in front of the chuch. We have so much to be thankful for.

What a day...We saw the surgeon and she is so happy with how Benjamin is doing. She was impressed with his growth. But he has a remarkably large hernia where he's had his surgeries...the abdominal wall has seperated and his bowel is pushing through. The doctor said it was one of the largest hernia's she'd ever seen. So Benjamin will have to have 1 more surgery. I'm so bummed. She's in no hurry so she's planning on doing it when he is 6mths corrected, so probably in March. Compared to his other issues this is minor, but she will have to re-open his original incision and push his bowel back down and sew his abdominal muscles closed. I think this will be the hardest surgery. He'll be so much bigger and aware of what's happening. Luckily the 7th floor will be over in the new building and we'll have our own room. I'll be able to stay around the clock...I'll have to anyways because he's nursing. Anyways, its disappointing but we're going to focus on what's going on now and he's great.
Yesterday we saw the physiotherapist and she was thrilled with his progress. We've been working hard at home and she really noticed that. So that's great. He's doing above and beyond what a 2mth old baby corrected should be doing. He's grabbing for toys and he's found his tongue :). So we are happy. He also had his RSV vaccine yesterday and did great..the doctor weighed him and he gained another 12oz this week. So he's up to 12lbs 6oz. Crazy.
Benjamin is on the cover of the NICU cookbook which is available now..so we picked up a few copies..so exciting.
Anyways that's about it for now.

We have a busy week with Benjamin coming up..We have 3 appointments. Tomorrow we are going back to St. Joes to meet with the physiotherapist again. I'm hoping the work we've been doing with him has helped. Benjamin is starting to protest a bit when I try to do his physio with him so it makes it hard. He's also getting his first RSV vaccine this week. I'm glad that we're starting that..it makes me feel better. We also have an appointment with the surgeon. I'm looking forward to seeing her again. I'm sure she'll be so happy with Benjamin's progress. We're having Benjamin baptized on December 5th. I'm really looking forward to that. Any one is welcome to show up and witness such an awesome event. Our church is a come as you are type church. Wear your jeans..bring you timmies. If anyone is truly interested in coming let me know and I can email you the information. I think its going to be fantastic.
Anyways life is good..

Some pictures

This week has been good. No appointments at all. It was nice. I had Benjamin weighed again on Tuesday and he gained another 10oz. Wow...I'm assuming he'll slow down sooner then later. He's 11lbs 9oz. That's great. Every day I put something on him that is too small. He really is starting to catch up. Next week is busier again...but its good. Here are some pictures from our family shoot a few weeks ago.

Things are good. Benjamin is starting to run the house...:) He definitely wants to be held a lot. I don't blame him, but it makes it hard to get things done around here. I've been wearing him when I really need to do stuff around the house and that keeps him pretty happy. Its a little awkward, but I'm sure I'll get used to it. I have a custom made mei tai which I love...he snuggles in and usually just goes to sleep. The girls are great with understanding when he needs me...but I know they get a little impatient. We don't have any appointments this week which is nice...next week will be busier. I'm going to take him and have him weighed again tomorrow. I'm curious to see..I'm sure he's slowing down a bit...but he seems to be eating all the time. Anyways things are good at home and we are enjoying life.

Benjamin was back at the pediatrician yesterday (whom we love so much) and got his 4 mths vaccinations. He did well. Its so said to hear him cry....I felt bad for him. He had a bit of a fever this morning, but other then that he seemed fine. He's a little behind in his vaccine schedule because we postponed his first set because he was sick. He'll go back next week for the rotavirus vaccine and rsv as well. I'll feel much better once he gets those.. Benjamin is still growing like crazy...He grew 2 inches is 2 weeks..that's crazy. He weighs 11lbs 2oz..and is just doing so well. So we're just working every day on getting him stronger and building up his abdominal muscles with physio. He seems to be doing good and I think the buldge on his belly is getting smaller. We go see the physiotherapist next week again so I hope she notices a difference. We'll see.....

Things are good here. Benjamin is growing like crazy. I took him to the Well baby clinic to have him weighed since I have switched to breastfeeding only. I wanted to make sure he was getting enough..and he is. He put on 12oz in 6 days. He is 10lbs 15oz. I can't believe how fast he's growing now. He's so happy. He's really starting to want to be held a lot. He hates being put down. He arches his back and complains a lot when I do put him down. Its pretty funny. He's really developing his own personality. Friday we go back to the pediatrician and Benjamin will get his next set of vaccines. Poor boy. Other then that we don't have any appointments until the 22nd. Yay! We are so blessed.

I know its been a few days, but I really don't have to much to tell you. Benjamin is doing so good. Yesterday was our first day of exclusively breastfeeding and he is doing great. He is sleeping well and having lots of good wet diapers so I know he's getting what he needs. We still need to work on his latch, but overall he's doing great at it. I'm so glad that I don't have to pump anymore...and just cuddling up with him and nursing him is an amazing experience. I just love it. Benjamin looks bigger every day. He's really filled out and some of his clothes are getting small. Its nice to see him growing and looking so chubby and healthy. I'm starting to push to the back of my mind that he was sick..and just think of him as a normal baby. He's doing a lot of the normal baby things now. He's starting to chat a lot..he smiles lots...and he's getting lots of tummy time. He doesn't love tummy time because of his belly...but he still gets a few minutes here and there. I'm just loving every minute with him. Our quiet days at home are wonderful and I just can't get enough of him. He makes me so happy and I just can't imagine life without him.

Today was a big day. Benjamin had developmental follow-up clinic at St. Joes. It was nice to see some familiar faces again. We even popped into the Nicu and said hi to a few nurses. Benjamin is doing pretty good with his development. He scored just above the 25th percentile, so everyone was fairly happy with that. We got some good instruction from the physiotherapist to help Benjamin with muscle tone. He has overcompensated in his upper body because his abdomen has been cut open so many times. So we have to work on getting him to relax his shoulders a bit and do some tummy time. Because he has such a large buldge from his operations he tends to teeter while on his tummy, so we got some good tips to help him with that. We go back in a month, so we have lots of work to do before then. We also saw the dietician and she was very happy with Benjamin's progress. She was happy for me to stop bottle feeding and start breastfeeding full time. So by the weekend I think he'll be straight breastfed..what an answered prayer. To be born a micro-preemie and to nurse in the first place is amazing...but for him to have been so sick and come through what he has and then to still be able to effectively nurse is phenomenal. I am so thankful!!!! Life just couldn't be any better.

Benjamin is great...All of a sudden he looks so big to me. Things are good here. He is a happy baby. I love every minute of having him home. The hospital is becoming a memory now and that makes me happy. Its just so right having him here. He's definitely the boss. He lets us know when he wants something..he definitely has times where he just wants to be held. I don't blame him though. He's starting to smile more and more and that is simply amazing. We're slowly going out a little more. I'm very cautious where we go. I try to go out when its less busy. I took him to church on sunday. We sat up in the belcony and then I slipped out with him before church was over..I want to avoid crowds. The public health nurse was here today. She weighed Benjamin and helped me with nursing. I have been nursing him more and more, but his latch isn't great so it hurts. She gave me some good tips. So I'm going to nurse half his feeds. I guess if he nurses well and gets the good milk it can have more calories then even formula. Once he was on good, she was very happy with how he nursed. The idea of exclusively breastfeeding is so exciting. Wednesday we have our developmental follow-up at St. Joes. I guess we'll see a pediatrician, physiotherapist, dietician, and other people. So I'm looking forward to that. So things are great. Prayers are being answered daily....

Things are going great. Benjamin had his first doctors appointment today. We love his new pediatrician which makes things so nice. I'm very happy with him. Benjamin has gained 1 lb and 3oz since he's been home. He's now 10lbs 2oz. Amazing! His weight gain at the hospital wasn't great...even on the fortified breasmilk he wasn't gaining great...the only difference now is he's home. I think that speaks volumes. He is also very happy with his weight and height in regards to his corrected age. If he were born sept 13th he would be right where he should be. I'm so glad to hear that. I'm nursing Benjamin more and more. Now that his weight gain is going well I'm going to nurse more. If he has gained well over the next 2 weeks I can start to exclusively breastfeed, which is what I want to do so badly....pumping is so much work. The doctor also couldn't hear Benjamin's heart murmur. I'm so glad that his PDA appears to be closing. We go to the cardiologist in December so we'll know then for sure how big the hole is. So overall the pediatrician was so happy with Benjamin and how things are going. We go back in 2 weeks for immunizations. All is well at home and we're starting to settle. God has blessed me so richly. He has seen me through the hardest time in my life and given me the most beautiful gift. I am so thankful for the prayers that have been lifted up and I know without them it would have been that much harder to make it through. Thanks everyone so much, I can't say it enough.

Today was a nice quiet day. It was the first day since Benjamin came home that it was just him and I. We had lots of quiet time snuggling. It was so nice. He's doing great. He's bottling up to 120mls now which is great. He sees the pediatrician on Friday and I'm interested to see what his weight is doing. He smiled for the first time on Monday night and smiled at me again tonight. He's very serious and it takes a lot of coaxing to get it out of him. I still haven't taken him anywhere. I'm worried about it. I think we might attempt church on Sunday. He obviously won't go in the nursery or anything and I think I'll slip in as things are just started and slip out just before it finishes. I don't want to draw a crowd..at least not inside the building..so we'll see. Anyways, all is well and overall our first week at home was great.

Life at home is good. Things seem to be settling down a bit, and we're slowly working our way into a routine. Benjamin has a lot more awake time in the evening once the girls are in bed and he sleeps a lot of the morning. He usually falls asleep around 11:30 and is up again around 3am and then sleeps until 6:30am. I can't really ask for more...he's great. I still am scared to take him out anywhere. We went out for about 20min this afternoon, but I find myself totally paranoid. I just don't want him to get sick. I called the public health nurse today. I'm trying to arrange for a few home visits to have Benjamin weighed. I really don't want to take him to well baby, I'm just worried about him catching something. We also have an appointment with the pediatrician on Friday. I'm nervous about a new doctor. The original pediatrician we were hoping for is away so we've been referred to someone else, so I hope its good. I'm thankful that he's willing to take Benjamin on with all his issues. Tomorrow we're off to get our flu shots..I just want to do everything I can to keep Benjamin healthy. Anyways, things are good and I'm thankful. I look back on all we've been through and its hard to believe. I am so blessed that I have Benjamin home and our family is complete.

Benjamin is doing so great at home. It just feels so right. He's a great baby and I guess a benefit to being in the hospital is he has a pretty good schedule and sleeps through everything...I even vaccuumed around the bouncy chair he was sleeping in today and he didn't move. We're still trying to get into the groove of things. Its been hard for the girls. I understand that though and I know things will get easier over time. I worry so much about him getting sick. I don't know what to do. I'm afraid to take him out...but I know we can't live in a bubble either. I know common sense is the key. Its hard, especially this time of year. I think once he starts getting his RSV vaccine I will feel a bit better. I know that he can catch stuff at home too, with the girls in school. I have to remind myself to take it one day at a time. I'm so lucky, so happy, and so thankful.

Well our first 24hours were great...and things are still going well. Benjamin is a good baby. He definitely knows what he wants. He really likes being held...I guess 4 months in the hospital will do that to you :). He's settled in nicely. Trying to get into a good routine will be the next thing. He pretty much is on a 3 hour schedule from the hospital which is nice...but that can change too. Remembering his medication has been tricky too...but I'm sure it will become habit before long. I've printed off some charts to I write down the time and exactly what I have given and how much he has eaten. I have to keep track of that because his weight gain hasn't been great. So I'm writing everything down. I have been nursing him a couple times as day as well. Which he is a pro at. I really wish I could nurse all the time, but he's getting fortified milk, so I can't right now. But a couple times isn't a big deal. The girls are thrilled to have him home. They are trying to get used to it. Life changes again. They are a little more needy then normal, but that's to be expected. Its really nice just staying home and being a family. This morning was crazy...Jon had to go to work at 7am, I had to pump, Benjamin had to eat and the girls had to get ready for school..I know it will get better, but it was a bit overwhelming. Luckily my mom came and took the girls to the bus.
Anyways, life is so good with Benjamin home..I love every minute. He's perfect and beautiful and completes our family. Thanks for the prayers and support...I truly couldn't have done it without them.

DISCHARGED

Yep, thats right. As of 9:30am this morning we have been discharged. Yesterday afternoon the doctor said we could come home today, but we never told anyone because you just never know. I called the hospital at 6:30am so worried that something would have happened overnight. But all was well. The girls were so excited to see Benjamin when they got home. We didn't even tell them. So we are home. Praise GOD!!! I'm so nervous, I'm checking him constantly. I know it will take me a while to settle down. He had a big reflux here, and it took him a bit to recover, so that freaked me out... but we'll be ok. I'm looking forward to just starting our life over with Benjamin home. I am so thankful...we have been through so much. So the next little while will be an adjustment. We already have appointments booked for the next few months...Anyways thank you all so much for the prayers and support. We still need them. This time of year is difficult. We have to try so hard to keep Benjamin healthy. Pray that things will just continue to go smoothly. I'll keep everyone updated still on how things are going....

Benjamin had a great day. He has been bottling every feed and taking up to 90mls at a time. So the nurses left his tube out. They also discontinued his monitor so he has nothing hooked up to him for the first time EVER!!!! Its so strange. I forgot to take a picture, but I will take one tomorrow. He's had no issues at all and everyone is very happy with him. We are just working on all his follow-up appointments, getting a pediatrician, and tying up loose ends. I think with in the next week we should be home. We're so excited!!!

Big progress today!!! We have been bottling Benjamin 2mls-3mls more every 3 hours to try to work our way up to full feeds which is 80mls. This morning I bottled him 55mls and then 60ish at noon. While bottling him at noon the doctor came in and told us just to bottle him the total 80mls next time. I was a little hesitant, and so was the nurse. I had to leave early today so I left it up the the nurse, what she felt comfortable doing. She bottled the whole 80mls and he took it all and had no issues. So his is now full feeds every three hours like a normal baby. Praise GOD!!!! He just keeps getting better at it. He also took matters into his own hands and pulled his feeding tube out himself. I thought they would put it back in, but Jon called and they didn't. So as long as he does well the feeding the tube is gone. Yay!! He has no tubes, IV, or lines of any sort for the first time ever!! I'm so thankful, excited, nervous and scared....all at the same time. Keep praying for continued progress and lots of growing.

Things have slowed down a bit today. Benjamin spit up a few times today and I think the nurses thought it would be best just to slow down. I'm sure he'll spit up a bit more as he gets more in his tummy, but as long as he's not vomitting huge amounts we're good. He bottled about 50mls before bed tonight which was great. The rest he gets over about 40 mins. He still seemed so hungry after his bottle so hopefully tomorrow we can keep moving up on the bottles. He's doing pretty good with the bottles, but he still has the occasional issue. I finally got him in to the tub tonight. At first he wasn't happy, but he finally started to enjoy it. It was nice to get him good and clean. He's really starting to develop a personality...he knows what he wants. He really doesn't like being in his bed. He arches his back and carries on if he's had enough and wants to be picked up. I feel bad if we're not around because I don't think he gets picked up to often....
Anyways, we're still moving in the right direction so I'm thankful for that.

Well I don't have much to tell you today. Things are good. We're continuing to go up on feeds slowly. We're up to 3 hours over an hour and half..but he's taking close to an hours amount by bottle. Tonight he took 45mls before bed. We're working up to 50mls. Tomorrow they will do the whole feed over an hour. But I don't think we'll be bottling him quite that much. I think by tomorrow night he'll be bottling close to 60mls. He is actually waking now every three hours to bottle, like a regular baby. The nurses still aren't bottling so I feel bad when he wakes up at night and doesn't get it..he's hungry :( He lost a little weight again, so they are increasing his total fluid intake to 80mls. He's using a lot of energy bottle feeding too, so that could be why he's down a little. I'm not to worried, his overall weight gain trend is up. Anyways that's about all...we're almost there and I'm feeling a bit overwhelmed. But we'll keep praying for strength as the "day" gets closer.

4 months today I gave birth to the most amazing little boy. What a ride it has been. We have been through so much...I am exhausted, but incredibly thankul. My boy is happy and healthy and doing so great. Benjamin had another good day. We are continuing the increase in his feeds. Today he was getting his 3 hour feeds over 2 hours. I bottled him 4 times and by the end of the night he was taking almost 40mls by bottle. Tomorrow he will get his feed over an hour and a half. He's been tolerating things fairly well. I have noticed that he is having a little more reflux, but I guess that is to be expected. He had a bigger episode tonight where he just couldn't get it back down..it was a little scarey, but he eventually recovered on his own. It makes me nervous thinking about bringing him home when he does that, but lots of kids have it so I'm sure we'll be fine. The doctor pulled his picc line tonight. I noticed this afternoon that it was starting to get a little red around the site. So they took a look at it and finally decided it wasn't worth the risk of an infection. He wasn't getting anything through it right now so they took it out. I'm relieved in a way, but worried that if something happens they will have to put another one in. I guess will deal with that if it comes. Other then that all is well. Now that Benjamin's milk is fortified he's been putting on good weight. He's an even 9lbs now. So this weekend will be big in getting Benjamin to bolus feed, but I think he'll be great.
Thanks for all the prayers...we still need them to get through these next few weeks.

All is well. Things are going so well. Benjamin is so great. He's now taking bottles well. I'm to bottle feed him every 3 hours, 1 hours worth of milk. So tomorrow he'll be bottle feeding 37mls every 3 hours and the rest will be run over an hour. That will be another change, but I'm starting to feel good about it all... They ended up fortifying his milk today. He gets 10% of goodstart concentrate added to my milk. Its helping because he gained 25 grams since yesterday. So I'm happy about that. I'm so thankful that things are going so well...The end is near.

Change makes me so anxious. Today we started the transition from continuous feeds to bolus feeds. So far so good. Around 2pm we started giving him 3 hours worth of milk in 2.5 hours. That's a 5 ml/hour increase. But as of 9:00pm Benjamin was great. No throwing up or anything. I think he is feeling so hungry and the increase will help. Last night he was very cranky and did not sleep well, but I think he's just hungry. So if all goes well, I think tomorrow they will push him again. He's lost so more weight, so I'm a little concerned about that. I think tomorrow they will fortify my milk..so hopefully that doesn't irritate his tummy either. We new absorption could be an issue. Over all his weight gain hasn't been terrible, but its not consistently going up.
Benjamin was awake for a while tonight. He was sitting in a bouncy chair watching everyone in the room. He's so interested in everything now, he's just so bright. He stayed awake for over 2 hours and was still awake when I left. He's just such a good boy.
Anyways, pray that this transition goes smoothly..and that Benjamin starts to gain weight.

Full feeds!!! We're up to full feeds. I can hardly believe it. I'm so thankful that we're finally there. Tomorrow they will start giving him his 3 hour amount in 2.5 hours. It doesn't seem like a big change, but it means going up 5mls for the 2 hours. So I'm really anxious about it. I'm so nervous that he won't tolerate it. But I guess we never know until we try. Benjamin had 3 bottles today. They went pretty well. He still had a little bit of trouble with them, but his heart rate only dropped a little and he's starting to cough when he chokes..which is great because he's learning to protect his airway. So there is a little progress. He seems to be hungrier now that he's getting some bottles, I feel bad that I can't give him more. But we're getting there. These next few days will be anxious and there could be a lot of change. I hope things continue to go smoothly...and we can think about coming home.

Benjamin had a great day. He's such a happy boy. He had 2 bottles again. He did fairly well. He had an episode at the beginning of both bottles today...but that's ok. He's getting it. It takes time. He snuggled with me this morning and then spent the afternoon awake..watching all that was going on in the room. He really looks around at people walking by or the lights on the monitors. Its funny watching him. Sometimes he's so intense and serious. He rarely complains. The doctors increased his feeds today, he is at 24mls as of 9:00pm tonight and tomorrow morning he will be up to 25mls...as long as he has no issues through the night he will be on full feeds tomorrow. Praise God!!! After we know he tolerates the increase tomorrow we will start trying to give him his feeds over a shorter amount of time. So they will give him his 3 hour amount over 2.5 hours and once he tolerates that they will give him the 3 hour amount over 2 hours. They will do that slowly until he's taking his 3 hour amount in 20minutes...or so, like a normal baby. The biggest issue will be making sure he doesn't start "dumping". As he starts getting larger amounts in shorter times he could get diarrhea and start losing weight. If that happens we'll have to back off and slow down. We just have to take it one day at time. He's doing great and finally getting the best nutrition he can get..I'm so thankful.

Happy Thanksgiving. I have so much to be thankful for. Benjamin had a good day. I got to the hospital early this morning to give Benjamin his bottle. He did excellent. No problems at all. Then after church I went back and gave him another one. He did great with that one to. I think he's got the hang of it. Tomorrow I'm going to give him 3. The doctors were worried that it would tire him out to much, but he had his bottle at 11:30am and was awake until 2:30pm. He just wasn't interested in sleeping at all. Its so fun to watch him looking around. He's so curious and he was so happy just hanging out with me. It was great. Benjamin had bloodwork done today and it came back that his potassium was high. This made me very nervous..so they did a repeat blood test and it was even higher. High potassium could indicate heart issues, so that was scarey. But the doctor wanted to rule out other causes so they stopped his TPN, which has potassium in it. They thought it could be a combination of TPN and breastmilk...that he was getting to much. They did another blood test tonight and it came back normal...I'm so thankful that he was just getting to much and his heart is fine. The other issue tonight is that his central line is blocked. The nurses inject a special fluid in it and let it sit for 4 hours, then they try to flush it. If that doesn't work they will try again and let it sit for another 2 hours. If its still blocked they'll have to pull it. Its so frustrating. After the whole ordeal to get the central line in the first place they may have to pull it tomorrow. Anyways, they are increasing his feeds every 12 hours now, just to get him up to full feeds faster. He's up to 22mls tonight and by Tuesday he'll be at full feeds. So we're praying he tolerates the faster increase and that things to continue to go well. I'm thankful for my family...for all they do. They have been amazing in helping me pick up the peices. The girls are always looked after and I don't ever have to worry about them. I always have someone to talk to or a shoulder to cry on. God has blessed me incredibly.

20mls!!! I can't believe Benjamin is at 20mls. He is tolerating it well. No issues at all today. He also took 2 bottles...at the beginning of both bottles he had an episode..he doesn't realize at first that there was something coming out, but once he did he had no problems at all. He took 17mls this morning and 20mls tonight. He gained 80grams to, so that's great. He's almost 9lbs. I'm so glad things are going so well. He's such a good boy. I have so much to be thankful for. He's truly a gift.

Benjamin had a good day. He's so alert now and I love every minute of it. He spent 2.5 hours awake this morning. He's so cute and content. This morning I gave him a bottle. He took 19mls without any issues, it was great. Then I tried this afternoon and he was way to tired from being up so long. So he took a couple sucks, choked and then fell back asleep. So we'll try again tomorrow. I think he was just exhausted. He's tolerated his feed increase again. He spit up a few times this morning again..like yesterday. I wonder if its just the initial increase that causes it and as he gets used to it his tummy settles out. The surgeon reminded me that almost all babies spit up...and I shouldn't freak out over it :) Anyways...tomorrow we hit 20mls...So exciting. We're so close.

Things are good. Today was a good day. Benjamin is doing great. He's been putting on weight well. I'm so happy that he's getting so much of my milk now. It will just help heal his body so much better. Today Benjamin took 2 bottles. First thing this morning he bottled with the OT and did well. He still has the occaisional episode where he forgets to breathe and his heart rate drops, but he seems to be getting the hang of it. This afternoon I bottled him. I was so nervous and I know that doesn't help the situation. The OT sat with me watched me as I fed him just to give me tips and support. Right off the bat he choked, but he recovered well and did well for the rest of the bottle. He ended up taking 16mls, which is the most he's ever taken. While I was burping him he turned his head and started rooting, which was funny, but excellent because he knows what to do. So the doctor gave me the ok to try breastfeeding again. I'm going to pump first so he doesn't get to much, but its great for practice and even better for bonding. I'm looking forward to that. They increased his feeds again today..and so far so good. He didn't spit up at all today and was very happy. Every day that passes I'm more thankful..its a day closer to home.

Wow, another good day.. Benjamin was bumped up again today on his feeds to 17mls/hour. I'm so thankful that he's tolerating things. He spit up once, but only a small amount. But other then that he seemed good today. He did great with his bottle today. He took 15mls. He only had 1 bigger episode where he choked a bit and his heart rate dropped. So it seems he's getting the hang of it. The plan is to get him bottle feeding 3 or more times a day. If it goes well in the morning tomorrow then we'll try again in the afternoon. Things are definitely looking up. I'm actually starting to think about when he'll come home. We still don't know how long it will be, a lot can happen. Our goal is Christmas...which gives us lots of time. Pray lots...that he can come home soon!!!! Thank you so much to everyone who reads the blog daily..who prays for us often. We draw our strength from your support.

Benjamin had another good day today. I am thankful for that. He spent a lot of the morning watching his mobile and laying contently in his bed. I love watching him look around and be so aware. Its cute. The doctors pushed his feeds up to 16mls this morning. He had one tiny spit up first thing, but nothing for the rest of the day. I'm getting so nervous as we are getting to higher volumes. He has bouts of serious cramps on and off through the day. I feel bad for him, because he gets very upset and acts like he could climb the walls. He's very gassy...I'm not sure if its because of his issues or that he just a gassy baby. The occupational therapist came in and gave Benjamin a bottle. The first little bit he had a couple episodes where he choked a bit and his heart rate dropped, but by the end he seemed to really get the hang of it. So that was very encouraging. She is coming every day now to try to get him onto the bottle. The nurses don't want to do it because of his issues and they are trying to cover themselves if he aspirates, but the surgeon is worried that if he doesn't get the hang of it he might end up with a g-tube in his stomach, which would be a whole other issue with all the scar tissue he has. So we really need to work at it. He'll never learn if we don't try. Things on the floor are getting a bit better. I'm starting to get to know some of the nurses a bit better, which makes me feel more comfortable. Benjamin is able to soothe himself a bit more, and I'm finally convincing myself that if he cries a little he will be ok. I'm definitely trying to calm down a bit because I'm feeling overwhelmed...I never realized how much I needed Jon until he went back to work. Its really hard sitting at the hospital all day alone...talking to doctors..and just going through my day without him. He definitely is my rock.

Benjamin had a pretty good day. We finally made it to 15mls/hour. It seemed unattainable last week, so I am so thankful that he is tolerating it. We were supposed to attempt bottle feeding today, but that didn't happen again. I am so frustrated right now. The doctor is really pushing to bottle feed, but no one wants to do it. The feeding specialist was supposed to do it around 5pm, but I had to go home. Jon got there tonight and it wasn't done. I just don't know what to do. The nurses feel like they don't want to push him because he's not going home next week and we have time. I just don't know what to do. I feel like I'm going to have to just do it myself...which is terrifying. I feel like if I don't no one will. Anyways, Benjamin had his eyes tested again and the doctor was very happy with how his eyes were doing. She doesn't need to see him again, we just have to take him in when he's 6mths old. So that's great news. Benjamin is having a lot more awake time lately. This afternoon he laid in his bed for over an hour just watching his mobile and looking around. Its nice to see him awake and happy. I worry that he's fussing and the nurses are to busy to calm him. He also has been looking for his thumb or fingers to suck on instead of his soother. I'd be happy if he started that because he wouldn't need a nurse to put his soother in all the time. Thigns are still moving in the right direction. I'm so incredibly thankful for that. I just pray that it continues.