Summer holiday are finally here. I'm glad in a way...time to relax and gear up for a good summer to make up for last years bad summer. We have no huge plans. I am taking the kids camping on my own in a few weeks. I'm a little nervous about how Benjamin is going to do with the disruption in his schedule. I'm going to try to relax and have a good time. I'm going with my sisters and cousins so it should be a nice time. We're planning lots of day trips and a few days in Michigan as well. It should be good. We have a wading pool just around the corner from us and I think Benjamin will really enjoy that. He can sit and splash. He loves the water.

He's really been on the move lately..he's so fast. If I give him trouble for crawling somewhere he shouldn't be he just crawls away faster. He's pretty sneaky. He also crawls to the girls room and tries to peak under the door. They won't let him in because they have tiny toys everywhere, but he knows their in there and he sits by the door.

Benjamin has been started to refuse his baby food and is exploring with more of our food. He has a hard time with textures and really has to work through the gag factor. But he loves homemade banana bread and fresh strawberries.

Every day I am learning new things about it him. He's so interested in everything.. I wish I knew what goes on in his head sometimes. He loves other kids so much. He just lights up when the girls are around and seems to be so interested in his cousin, who is the same age as him....right now they seem to just want to hit and scratch eachother, but I know in the end they will be buddies...and that's great.

Anyways this weekend I think I might attempt to put him in the nursery at chuch. That gives me anxiety on so many levels... I worry that he'll have seperation anxiety, but the biggest thing is germs.. I just don't want him to get sick. But its summer and the germs aren't so intense so we'll see how it goes. I just want that hour on Sunday mornings again. It means a lot to me.

We have a had a good week. Father's day was lovely...although Jon was working. That was kind of a bummer. We went out to my Aunt and Uncle's house for a bbq with my family. They have a beautiful pool. Benjamin loved it. He just loves the water. It was a great day.

On Monday we went to visit with one of Benjamin's NICU roomates. It was really nice to reconnect and spend some time with another miracle baby and her mother. Its her first birthday, happy birthday Quinn! I have met some incredible children and their even more incredible mother's during Benjamin's time in the NICU. Its nice to be able to chat and relate with other parents. Not everyone really understands so staying connected with these moms really helps.

Other then that there isn't much to tell you. Benjamin has been slowly developing his personality more and more. He is stubborn..I have now duct taped the vents to the floor. We also have installed a gate at the top of the stair, which he enjoys hanging on. He also has quite the temper and is making sure his voice is heard. He's got quite the peircing scream :). But its all wonderful and I love it.

First Birthday Pictures

We had a great week. Benjamin's birthday was great. Wednesday afternoon we met some friends at the park for cupcakes. It was nice. The kids all played and had a really good time...Benjamin slept :) We had pictures on Monday. Benjamin was amazing. He's such a poser. I pick up the disc today. I can't wait to see them. We also saw the surgeon on Tuesday. She was very happy with Benjamin's belly and said that as time goes on the scar will loosen up and not be so obvious. She also discharged us :( I was not expecting that. I was expecting her to follow us a for a while. She has no concerns about Benjamin's bowel function at all. There is nothing special I need to do, or avoid with him. She let us know that we could call her anytime if we had any issues without a referral. I'm glad I took my camera and got a picture with her. I cried..but that's no surprise. Benjamin also had his one year check up on Thursday. He gained another 8 oz last week. He's put on 18oz in 2 weeks. They told me his weight would slow as he got more active, but it hasn't :) He loves to eat. But his overall growth is great so no one is concerned. He grew over an inch last month. He's a big boy. We're trying to get a sleep schedule going for Benjamin. He is a terrible sleeper. HE goes to bed around 7pm which is great and he sleeps well until about midnight. Then after midnight he nurses 3-4 times. Its exhausting...so we're trying some different things to try to get him into a better pattern...Hopefully it will work as I haven't slept the night in 12 mths.

We don't have any major plans for the weekend. Jon has to work, so we're going to spend Father's day at my Aunt and Uncle's house. I'll take Benjamin in the pool. He loves the water. Next week should be queit as we have no appointments until September. I am so thankful for that. We're going to visit so friends and enjoy our last quiet week before school is out for the summer.

Happy Birthday

As Benjamin's first birthday is here I'm having a lot of mixed emotions. I cannot believe its been a year since he came into the world. While we were in the middle of it all it obviously didn't feel like time was passing fast, but now that a year has come and gone I can hardly believe it. I am so incredibly thankful for the gift that he is. He is such a blessing to our family. He is beautiful and healthy and vibrant. He is acting like a normal baby and enjoying life the way he should be now. I watch him as he plays, he is so inquistive and curious and its beautiful. We are so blessed. I am reminded often of the fragility of life...when I think back at Benjamin's life so far I find it hard to look at pictures. I think about all that his little body has endured the past year..I wonder how he endured it all. I know this is a testament to God's amazing love. I have learned so much about myself, my strength as a mother, as a person. I have learned so much about my husband, his strength as a father, as a person. He has been my rock. He is the only one who really understood me and what we were going through. I learned so much about my faith. I have learned for certain that I could not have gotten through this on my own...never. God was with me every step of the way. I felt Him.. I felt Him there with me in the hours I spent beside Benjamin's isolet. I felt Him there when we waited during surgeries..I felt Him when the doctors told us Benjamin might not make it. I was never alone and I am so thankful for that.

As I close this chapter in Benjamin's life I look forward to what this new year holds for him. I look forward to less appointments with specialist. I look forward to spending more time loving my son. I anticipate amazing things for my little prince. I know he will do great things in his life. I feel so lucky to be his mother. I can't even explain the bond I have with him and the love I know he has for me..I can see it when he looks at me.

I want to take time to thank everyone who has prayed for us...the countless prayers. The power of prayer is evident. I am eternally grateful. I appreciate the cards, phone calls, care packages, meals and emails. Not one of them went unnoticed. I hope you all know that you made a difference in our lives. I am so thankful for my family and for the few close friends that persevered through with us, you are my heroes and I am so thankful for you. I am so incredibly thankful for the doctors and nurses who dedicate their lives to save the lives of premature babies. Without them Benjamin would not be here. There is no doubt in my mind that these people are created differently...with extra love in their hearts. I owe them so much...I think about the hours spent in the NICU and how they became my world, my support system. I have been so touched by them and not a day goes by that I don't think about the love and tenderness they showed my son every day. I wish there were the right words to express my thanks. I hope and pray that you all truly know my gratitude. Thank you so much for the magnificent impact you have made on our lives. You are all part of Benjamin's story and that is amazing.

Our year in pictures

June 15th, 2010

Sick

First Surgery- July 7,2010

Second Surgery - July 30,2010

Third Surgery - August 8,2010

Fourth Surgery - September 17, 2010

Going home - October 20, 2010

Halloween

Christmas

Growing

Fifth Surgery - May 12, 2011

First Birthday Party

Benjamin's Surgeon - June 14, 2011

Benjamin is on the move..we had a great weekend, but more and more he is keeping me on my toes. I have to shut all the doors and constantly remind the girls to pick up all their little toys...If my eyes aren't on Benjamin he's usually into something. He's already ripped up and tried to eat several peices of paper. I have to empty the bottom of the bookshelf because he can reach everything. I also caught him hanging onto the piano trying to step on a toy to get higher. I think he is going to be my dare devil. Tomorrow will be the first time Benjamin will be left with someone other then Jon or I...Its my mom so I feel totally comfortable..but its another milestone in a way. We're going to donate blood and out for lunch with friends. I'm really looking forward to doing something without kids.
Anyways..thats about all. I'll post a picture of Benjamin's tummy today. It looks pretty good. He does have a weird scar..because the surgeon had to pull the muscle together and there were some weak spots it made his muscle really tight in some areas..so he has a ridge under his skin and it pulled his belly button in..so he has a super innie. It also created a little excess skin, hence the little fold. But its all good. If that is all we have left from his issues we are fine with that.

GAhhh.. Benjamin has been coughing and wheezing like crazy again. Its so frustrating because I just don't know why he goes through these bouts. I know he has asthma, but it definitely doesn't seem like its under control. We have an appointment with the asthma doctor on Wednesday so I'm hoping she'll have some insight. I wish I new the triggers. I wish I could do more. I feel some days I need to get rid of the animals just to see if that helps. I know having three cats obviously doesn't help. The doctor was hoping to have Benjamin off his inhalers for the summer, but I'm doubting that. I get so nervous when he's coughing so much.. I'm worried he's going to choke..stop breathing. I don't think I will ever just relax. I still have this faint feeling in the back of my mind that something is going to happen and he is going to be taken away from me. I know he has a clean bill of health, but I'm always worried there is something underlying that we don't know about. Every time I pick him up out of his bed I feel his forehead to check for a fever. Every time he has a BM I check for blood..I know its a terrible thing, but after going through all we've been through I don't think those things will ever go away. Everything still feels so fresh even though he's almost one. I still cry thinking about his short little life. I know I can change things and this is his story...but I can't help but mourn the loss of a healthy child.