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.

Today Benjamin was cranky. I'm not really sure what's going on. He's definitely gassy, so I'm not sure if its something that I ate and past through in my milk or if its just he's not feeling great because everything is still healing and needs time. He was fine when we were holding him and laying on his tummy on me, but he was very cranky in his bed. Tummy sleeping is best for digestion and helps kids with reflux, but they won't allow him to sleep on his tummy there, because of the whole SIDS issue. I understand in a way, but he is hooked up to a monitor so you think if it would help him with his issues they would let us put him on his tummy. Anyways, they gave him some tylenol tonight, so if its anything besides his tummy it might help. I hate seeing him uncomfortable and if he doesn't settle out I might head out and spend the night with him. He's up to 14mls/hour now...the make it or break it number. We've been up to 14mls twice now and he hasn't tolerated it. But he's been on it since around noon and so far hasn't had any spit ups or major reflux episodes. So I'm hopeful we can work past it. Tomorrow we will 3/4 of the way to full feeds. That's exciting. The surgeon decided to keep going slow, because he seems to need it. So we have a little over a week until full feeds. In the grand scheme of things another week isn't that long. Tomorrow we are going to start working with the occupational therapist who specializes in feeding. I'm hoping she can get Benjamin bottling better. The ideal thing is to having him bottling every 3 hours or so during the day. He gets 1 hours worth of milk in the bottle. The doctor is confident that he'll just suddenly catch on and do fine. If he doesn't he can still come home with NG tube. Anyways I'm optimstic that this week will be a good quiet week with progress. There is a faint light at the end of the tunnel.

So the results from the small bowel follow through are good. The doctor was very happy with how his x-rays looked. The only thing that is an issue is how fast things are digesting. She said that an hour and a half after they barium was given to him it should have been through his small bowel, but it wasn't. So its as we thought, his digestion is slow. I guess over time that will get faster, especially as he grows and grows more healthy bowel. We are so thankful for these results. Benjamin had a pretty good day. He had 2 bottles today. He did ok...I can't give them to him yet...I get so stressed out if he chokes. I'm so worried about him aspirating again, but he needs to learn. So I'm leaving it up to the nurses. They know better how to do it. I never thought it would be hard to bottle feed a baby. But like everything else for Benjamin its not coming easy. I really hope he can get the hang of it. Anyways he's doing good...He's up to 13mls/hour. That just over half of his hourly amount. So I'm excited about that, we'll get there slowly. Its one day at a time.

Benjamin had another busy today. This morning we took him down to x-ray for the contrast study. The ended up giving him 35mls of barium through his NG tube. I thought for sure that he would throw that up because he has never had that much in his tummy and barium is like cement. But he kept it all in. Then he had lots of x-rays throughout the day. So he was up a lot and exhausted by the end of the day. We haven't heard the results from the test yet, but I assume if there was anything serious we would have heard by now...but tomorrow afternoon we'll see the doctor and know for sure. I can't wait to hear. He's up to 12mls and hour so we're half way there. That's very encouraging. So I'm hopeful that the medication is helping things work faster. The surgeon wants just to keep pushing through and as long as he doesn't have any major vomitting we'll keep pushing ahead. Bottle feeding didn't go that great this afternoon, but he was so tired I'm not surprised. He's put on 140grams since he got his central line...its amazing what proper nutrition can do...Anyways I posted a pic of his tummy now..its almost fully healed..the small open areas are where his stoma came out so its taking a little longer to heal. But over all its amazing how it looks after 2 weeks. Please keep praying that we make progress daily and that we can bring our little hero home soon.