A Year Today

A year ago today, at this very moment in time I was in a hospital with my 3 month old son, in a recovery room. He had just gotten out of surgery, a surgery that would change his life... and mine. Today I am very emotional. That day was one of the scariest days of my life. Watching my little boy get taken away into surgery then anxiously sitting in the waiting room for good news. When the surgeon showed her face it WAS good news. Surgery was a success. In a matter of hours we were on our way home to start new.



First post-op bottle



In the Hospital recovery room



The first 3 months of his life were challenging. For me it was an emotional challenge, for him it was a physical challenge. He was small and frail. Eating was not easy for him, so we charted everything. How much he ate and when, how much he slept and how many diapers we changed.  He needed to be strong enough, healthy enough to have the surgery. Which he was, but barely. The first few days were pretty rough, but by Day 4 he was smiling again.

Home, Day 1

Day 4

He started eating cereal at 4 months old and the weight gain took off from there. He's strong and healthy and not the small, weak little guy I knew a long time ago. In fact, his uncle calls him Tank because he's solid. He's now in the 90th percentile on the growth chart (25th percentile pre-op). We've come so far and I am so proud of him and myself. I am grateful for all the love and support we've gotten from friends and family during this time, a time that it really mattered.

Today is a bittersweet day. A day of reflection and a day to give thanks. Thanks to my husband, family, cleft team, friends and the powers that be.

June 2011

Father's Day

The lake was awesome. I needed that. I must say though, it was a bit hectic having the whole family there, coordinating naps and such. I took pictures. Not as many as my goal, but at least I captured some perfect moments, like this one...

How I adore my father and how he is with his Grandkids. He never had any boys so his 2 grandsons are very special to him.

The weather was perfect, warm enough to enjoy the sun and not sweltering hot. A nice 80 degrees with a breeze off the lake. Family meals (which is a thing for my family), kids playing, laughter, conversation. This is the kind of stuff that feeds my soul.

Jesse wasn't a huge fan of the boat, which you probably can't tell from the above picture. He enjoyed being on Grandpas lap, but that was about it. I don't think he liked the wind. Shortly after that picture was taken he was passed out.

He just loved rides on the golf cart and running around at Aunt Heathers place. She has a lot of open room. He ate all table food too. I was very proud that he ate everything we gave him. Turns out, he loves grapes! But really, I think he'll eat any kind of fruit.

We had Father's Day brunch in the yard by the beach under the tent leftover from a party the day before. It was a pot luck thing, everyone brought a dish. Except me, I got a giant jug of OJ. It got finished off, so I guess that was a good choice. Jesse enjoyed a lot of food from brunch. He loves eggs and fruit, so brunch is a good meal for him. I was feeding him some egg dish with spinach and sausage, he couldn't get enough of it. Later I found out it had bleu cheese in it. That comes from Paul's side. They are bleu cheese freaks!

I couldn't get him to smile for a picture with his Daddy

But he sure likes exploring Daddy's mouth.

And wearing Daddy's sunglasses.

We even managed to get a family photo. I am sure Paul's not going to like it because it's less than flattering for him. And Jesse's passed out hiding my not so flattering parts, but hey, it's a family picture and we don't have many.

Paul had a hard time with pain from the car rides. It probably wasn't worth it to him, but I needed to go and it was good for Jesse too. This place is in my blood and always will be, I've been coming here since I was 5 days old. Uncountable memories.

The Lake

I am super stoked about going to the lake this weekend. It's a much needed mini-vacay. We need to get out of the house, away from the stress, out of our element, forget about this life for a while and enter that life. The lake life. There's something about going to the lake that brings me peace. I don't know what it is really. Possibly the cool lake breeze, the family, the memories from when I was a child, the solitude of being away from work, away from the city, away from the suburbs. The combination of it all. Maybe if I'm lucky Mom and Dad will take Jesse tomorrow night and let Paul and I sleep in Saturday morning. That might be pushing it though.

It's Father's Day weekend and I am excited to spend it with my Dad. He's a special person to me. He's more than just my Dad, he's one of my best friends. He's truely a remarkable person and I am proud to be his daughter. It hasn't always been like that, but we won't go there.

Dad lost his job a few weeks ago. It was bad. Not just bad that he lost his job, but bad how it happened. A few years back he got laid off from the job he was at 30+ years. They really didn't give him much, like 6 or 8 weeks severence pay or something. After he was a dedicated worker for over 30 years, isn't that special? He deserveda retirement package. He was on unemployment for a while then got a job with my Mom's cousin's husband as a low voltage electrician. I think he always wanted to explore being an electrician. So he was there for a while, he knew his boss was a dipshit and a jerk, but it was a job and brought in income. The jerk called him in the morning and said he didn't need him that day because the job got messed up. A couple hours later Dad gets a letter by messenger saying his company no longer needs his services and his last paycheck was enclosed.

The following weekend my Dad got a temporary job offer helping to set up speakers and intercoms at Summerfest in Milwaukee. It's work, it's a paycheck, so he took it. He's been living at the lake for 2 weeks now. The job is ok, the pay is ok, the commute is long and he's without my Mom. I think it will be good for him to be with family, at the lake and also forgetting about the daily stresses his life is giving him.

Bringing the new camera. I hope to have it with me the whole time, unless it's raining or dark. I hope I can accomplish this goal. But I will say that I finally realized why I don't take a lot of pictures to share. It's because I take them in my mind, constantly. Over and over. I even think about it, I want to remember this. Sometimes I think I just want to keep it to myself. I don't want to miss anything trying to get that perfect picture. I don't want to waste time making sure it's focused and the lighting is right. I don't want to miss anything because my face is behind the camera and not just enjoying the life in front of it. That being said, I guess I shouldn't make this a goal, just a bonus if I get some good pictures out of the weekend.

The Anniversary

The anniversary of Jesse's first surgery is coming up. I am not sure what to do with this yet. What I do know is a year ago right now I was a complete mess. The first 10 weeks of Jesse's life was stressful enough as it was, then add in an upcoming surgery for a 3 month old and a husband with a severe back injury. Times were tough and that's an understatement. Paul and I were extremely stressed and anxious about Jesse's surgery then Paul's surgery was scheduled for a month later. Paul's ended up getting post poned, but that's a story for a different post. This week a year ago Paul and I snapped on each other. It was the worst fight we'd ever had. It made me wonder about the future of our marriage. Luckily we got past that, but it took time, forgiveness and a new outlook on life, this life that we now live.

So now here we are approching the one year anniversary of this trying time. Do I celebrate openly this year? In future years? Or is this something to reflect on privately? I don't want to dwell on the past, but I do want to celebrate how far we have come in the past year. How Jesse was having a hard time gaining weight to trying to keep up with how much he eats. How Paul and I have evolved into pretty good parents. How our marriage has grown. A year ago we were very protective of our little boy. We kept him pretty sheltered because if he got sick, surgery would be delayed. Or if he caught something and we didn't know it, that would effect his recovery. We didn't want to risk him getting any infections because we wanted him to have minimal scarring and a short recovery. People thought we were being paranoid, but I didn't care then and I don't care now. It was what was best for him, and us. We made sacrifices to ensure everything would go smoothly, which it did. Everything went as expected, no complications, nothing unexpected. It sure wasn't easy, but surgery never is.

We made it a year. Two surguries later for Jesse and one for Paul and the world didn't come crashing down on us. We have a happy 14 month old. A healthy 14 month old. A 14 month old who can suck and eat without food coming out his nose. We've hit milestones that most parents never even think about. It's huge and it means a lot to me.

We are also approaching Paul's 2 year injury anniversary date. I am guessing this day will be pretty hard on him. Here we are 2 years later, 2 surgeries later, countless meds later, 9 injections later and he's still in pain. Because of Paul's back we have not been able to take a vacation since 2009. He can't make a long car ride. This weekend we are going to attempt going to the lake. It's just over 2 hours away. I imagine we will need to stop every 20-30 minutes, which is going to suck, but I think it will be worth it. Jesse will have so much fun there, now that he's older. I am really looking forward to this. We need this, even though it will only be 2 days.

Meet Your New Pathfinder

Exciting news! At least to me it is and I really don't care what anyone else thinks. This is about me helping people and helping myself.

Last week I called a fellow "cleft mom" to talk about the Illinois support network. This woman also happens to be the director of AmeriFace.

The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education.

I spent well over an hour on the phone with Robin. We shared experiences, feelings, concerns and more. She told me she loved my excitement and passion and encouraged me to become a Pathfinder in the Pathfinder Outreach Network and take the Pathfinder Training Webinar. I was hesitant, but they I figured, hey why not. If I can do it on my lunch and it's free, I have no reason not to. So I did it and knew that this was something I needed to do, I could feel it. Helping people is something I have always enjoyed doing, I really don't know why I didn't pursue something that helps people when I chose my career path. There's still time.

I had to leave the Webinar a little early. I allowed for enough time to finish it, but there were some technical issues in the beginning so we got a late start. I had to cut out early so I could make it to a business meeting on time. The following day I called the Executive Director of cleftAdvocate (Debbie) who held the Webinar. I was happy to hear the Webinar we wrapping up right after I had to disconnect, whew. Debbie finished things up with me and we talked for about an hour and a half. She also loved my excitement and passion. I asked her if I was a Pathfinder now and she said yes! I did explain that I don't have a lot of free time but that I could dedicate a few hours a week to this. She then reminded me that our families and jobs need to come first, then we can use our time to volunteer. I figure, instead of spending my down time at work screwing around on the internet, why not spend that time helping others. So that's what I am going to do.

Robin and I also talked about putting together a fuction in the Chicagoland area so families here can connect, she is also in a suburb of Chicago. Debbie also loved this idea. Next week I am going to touch base with Robin about it and get a date set.

In Sickness and in Health

Things have been kind of screwy lately. Lots of emotions going on. Good things and bad things happening all at once. Lets start with the good, shall we?

In the last few weeks I have noticed Jesse started sucking out of his sippy cups and bottles. The kinds we use make it pretty simple to suck through. It was a step in the right direction. So on Friday (before Memorial Day) I got off work early and went to my friend's house to hang out and let the kids play. Her son is 9 months older than Jesse. We were sitting around talking, the kids were doing their thing and I look over and Jesse has JJ's sippy cup. I tell him no because it's JJ's and my friend tells me it's fine, so I let him be. Another minute later I look at him and he's over there drinking away... out of a valved sippy cup! His cheeks were sucked in and he was going to town. They let him just have it and JJ got a new one. Jesse ended up finishing it. This is extremely exciting for me. Yes, it may seem like someting small, but to us this is huge! He's never been able to suck before and now he can. He's never been able to use a valved sippy cup, now he can.  Maybe we can transition and stop using the leaky non-valved sippy cups and wean him off the bottle. I am so proud of him.

The weather finally broke and we've been getting the warm days we are supposed to be getting this time of year. Since Jesse is walking pretty well we have been spending a lot more time in the back yard and took out the baby pool for him. He loves it. Looks like I have a little water baby.

Paul gave him a haircut too. Turned out pretty well I must say. He used the clippers and basically just shaved the bottom and left the top long. He needed a cut bad! I called my salon and it was going to be a few weeks before I could get him in. Paul and I talked about using the clippers, I really didn't think he'd actually do it!

So to the flip side. Things are not going so well for Paul. He's been in a lot of pain lately and everything he's going through is effecting him mentally. It has been on and off since the beginning, but I think I amseeing it as more regular these days. People have also been asking how this is effecting him up there. I don't go into much detail, but I am honest about it. I think it helps me cope to share what we go through. I don't want pity, but I do want people to understand. This road we are on is not a smooth one. It's bumpy and there are obstacles, but we have to keep going, he has to keep going. It breaks my heart to see what he's going through and there's nothing I can do about it but be there for him. In sickness and in health.... mentally or physically.

He started a steroid pack since WC won't approve a steroid injection. I guess there's a shortage of steroids right now? The pharmacy didn't have what was prescribed so he got something else. Prednisone maybe? Oral steroids help his back feel better while he's on them, but it usually doesn't last. There are side effects too. His first night after starting them, he was up until 5am. He wasn't able to sleep all night. Steroids also cause mood swings. These are hard to deal with because you never know when it's going to strike or what will set it off. I find myself just agreeing with him so there's not a full on blow out. I pick my battles and right now I am not picking any.