Monday, January 31, 2011


I had a fantastic weekend, I didn't even do all that much. But the simplicity is what was so good. Friday I had a friend over. I told her we weren't doing much but she was looking forward to a "chill" night. We laughed, a lot. It was good. I needed it.

Saturday we got up just like any other Saturday, got a few things done. Sent Jesse for his mid-day nap and I was able to get some things done, like a run to the bank to deposit paychecks. I get back and able to rest for a bit then Jesse awakens. Play date! I guess this would technically be our first play date. We pack up and go to Shari's.

Shari has been one of my "best friends" for about 14 years now. We've had our ups and downs, but really in the last 7 or 8 years she's been a sister to me. We may not be bound by blood but she truely is my sister. My definition of sister is what goes beyond just being a "best friend", which is a term I am not very fond of anyway. We are alike but different. We have something to talk about no matter what.

Years ago I wasn't sure this day would ever come, the day where our kids would be playing together and we'd be in the kitchen drinking bloody mary's and laughing. But the day has finally come and I am thankful for it. When I got married my Mom made these photo matts for people to write on. Those photos hang in my hallway and I read them all the time. Shari wrote "I can't wait to see our kids grow up together." Well, it's finally happening and I love it. Her son is 9 months older than Jesse... but now that he's mobile, they actually played well together. My only regret, forgetting the camera. But I have the pictures, they just can't be shared like the ones I take with my camera. I have been slacking a lot in the camera department, but I think it's because I am just soaking it in and keeping it to myself.

The rest of the weekend we watched mostly the X-Games. I love watching all the crazy tricks and jumps, but it made me miss our annual ski trip. It didn't happen last year or this year because of Paul's back. Maybe next year, even if it is only for a weekend in Wisconsin. I am glad I was able to hit the mountains of Utah once. Seems like it was just a few years ago but it was in 2002, 9 years ago!

Speaking of snow. The weathermen are predicting the worst snowstorm of the midwest since 1967. There's a blizzard watch for the entire Chicagoland area. In my area we are looking at 18-30 inches of snow, 50mph winds and 5-10 foot snow drifts. Eeek! Paul wants to be prepared and is running out today for rations. Well, just meat. We are running low but we won't starve to death or anything. We have Paul's truck fixed, so if I/we do need to go anywhere, at least we have a safe vehicle to do it in. My car is not a 4x4, need tired desperately and is RWD. Paul's is much safer for snow driving. I am not banking that my office will closed, but I wouldn't mind a snow day.... or two. Hee hee. We shall see. Sometimes they say things like this and we got 6 inches.

Friday, January 28, 2011

18 Days

Yes, I am counting. I can't help it. 18 days until I am back at that hospital watching a loved one get taken away.... again. Looking forward to the weekend. Not any major plans but I am looking forward to some time with my little boy. It's been a long week. We are going to try a "play date" with my friends 18 month old.

I feel like I have been very negetive lately. I don't mean to be. I don't want to be. But if I am, I'm sorry. I've had a lot on my plate and I try to do my best. My best is all I can do.

Update: My friend who's daughter had surgery on Wednesday.... the surgery was a success, but they've discovered some other issues. I don't think she knows much but she mentioned something about finding her daughter has Lupus. I feel bad for them. But they will get through this.

Tuesday, January 25, 2011

New Friends

In the past couple weeks I have made some new friends. Not that I really have much time for new friends, but I think these people have the potential of being a meaningful part of mine and Jesse's lives.

A week and a half ago I met another cleft Mom and cleft baby. I met Rachel in 2 ways. We met on the Cleft Advocate Board and also from Marty and Sara. I have been friends with Marty and his sister since grade school. Rachel is a friend of Sara's. So I get invited out to Rachel's parents house for the football game. Marty and Sara went as well with their 6 month old little girl. We met Rachel and Haven. Haven was born in June with a cleft lip. She had her lip surgery in September. Much to my surprise, shortly after arriving I found out that Rachel's sister Amanda is married to Sean. Sean is the son of very good friends of my parents! Small world. I saw Sean when we were invited to his wedding a few years back, but before that I really hadn't seen him since we were all kids. So not only did I get to meet another cleft Mom and baby, but I got to see and catch up with Sara and Marty AND I got to catch up with Sean. What a great day. I hope I can see them all again soon!

Sara is an awesome photographer and she took this picture of Jesse that day.

January 16, 2011

The other friend is a girl from the Mom's Group I am in. I have not been to many functions with the group, but I try to be active in the group posts. I have only met a small handful of these women and for short periods of time, but they are all great women to be associated with. I met one woman twice briefly and we seemed to have made a connection. We talked about getting together, but we were both a little busy, until this past weekend. Her daughter is having surgery tomorrow so her Mom was in town and she was able to get out of the house. We went to Chili's for dinner then we talked, and talked, and talked. We left Chili's and talked some more in the car, then I drove her home and we talked some more! I am not exactly sure why we bonded so well. We come from such very different backgrounds and very different current lifestyles, but it doesn't seem to matter. Maybe that gives us more to talk about! Another reason to bond is because both our children have upcoming surgeries. Her daughter has a much more invasive, serious surgery than Jesse, but regardless, it's surgery and any form of surgery is scary. I hope I can be a good support for her and she can for me. It's very scary watching a loved one go into surgery. In the past year I have watched it happen 3 times. You want your loved one to have the surgery so they can get better, but the fear and anxiety is extremely hard to deal with. I will be thinking of her and her daughter a lot in the next few days.

Thursday, January 20, 2011

We got the call

After waiting patiently for a week I finally recieved the surgery scheduling call on Wednesday. A call I had been waiting for. A call I was excited to get. Then I got it and the second I hung up the phone, my heart sank. The reality set in. My little baby has to go under the knife again! I knew this would happen from day one, but I thought I'd be much stronger by now. Not so strong that it wouldn't effect me, but strong enough that it wouldn't make me cry. Well, I have not actually weaped yet, but I've had the tearing up. I need to weap, it will come, I know it's there and needs to get out, just not sure when it will happen.

So the date is February 16th. When I got the call she told me February 23rd, but called back 15 minutes later and said it needed to be the 16th because the plastic surgeon would be out of town the week after the 23rd and wanted to be available for us. Of course I jumped the gun and emailed all our friends and family with the date before I got the second call so I had to send out a correction email. I guess I could have waited longer, but it's not like I thought they'd ever call back and change it within 15 minutes!

So that is set. Only 25 days away.

Tuesday, January 18, 2011


I am so tired it's not even funny. Jesse was up most of the night. I tried to put him down at a normal bedtime and he screamed bloody murder. I waited to see if he would calm down, never did. So I got him up, layed on the couch with him, he falls asleep for about 20 minutes then he's up crying again. I made another attempt at bed, no luck, screaming. Around 10pm, I decide I am going to take him into my bed and lay down with him. He'd sleep, 10-20 minutes, then get up, cry, squirm around and repeat the process. This went on til 4am. So needless to say, I am sleep deprived. My days events have me strung out, especially with Paul in pain again. This started over the weekend. He stated to me that this is the most pain he's been in since the surgery pain. When he's in pain like this, I become a single parent. I have to do everything. It's exhausting. I have a new appreciation for a working single Mom of a baby with no help. Life is non-stop from 7am til 8 or 9 pm. If I am lucky I get to relax a little from 9-10:30, but last night wasn't one of those nights.

*update* My babysitter called, she thinks it's teething.

Friday, January 14, 2011

Girl vs Boy

Sometimes I am a little disappointed that I didn't have a girl so I could dress her in leg warmers, tutus, skirts made from old jeans and make things with and for her like ribbons for her hair and little jars of fairy dust.... BUT I have a boy and I can dress him in skulls, guitars, camo and I can give him a mohawk, play rough and get dirty. The best part, I won't have to deal with my kids PMS. Ha! That's all. Happy Friday.

Wednesday, January 12, 2011

Cleft Team Appt

Yesterday we met with Jesse's cleft team for his 9 month evaluation. They measured his length, head and weight and he's following the growth chart nicely, still in the 75-95 percentile. 22.5lbs, 29 1/2 inches long and 19 inch head. First we met with the Speech Pathologist. He asked us a bunch of questions about the sounds he makes, he has not progressed since his 6 month eval, ehich I knew. She tested his hearing, and that's not what's causing his delay, so she said he should start speech therapy. I was expecting this. He's not making D, B, G, P or T sounds. And we have been working with him at home to make these sounds and it's just not happening. I was given a therapy "prescription" for one day a week and information about Early Intervention. Back to that in a bit.
We then met with our plastic surgeon. Last time we met with her she said he would do his palate surgery in February (before his first birthday) or right after in April. Since Paul might go back to light duty soon, we requested February for his surgery and she said that wouldn't be a problem since he's strong and healthy. So now I am waiting for her office to call me with that date. I am guessing it will be February 23rd. That's 5 weeks before his birthday. He should be our of his arm restraints and be able to eat cake by then.
After we left her office, we went to the ENT's office. Might I mentione we HATE going to that office. We like the doctor, but our experiences there are horrible. We have been there 3 times total. The first time, when Jesse was only a few weeks old we waited an hour in a waiting room filled with sick people. Then they moved us to an exam room where we continued to wait. Jesse needed a diaper and there was no where to change him except the floor.... and I still had stiches in my vag. I even asked a nurse if they had somewhere I could change his diaper, she said no and she reclined the exam chair and I did it there, not exactly safe. The second time, Paul and Jesse went without me. He waited an hour that time as well. Yesterday's appointment we were late because we were delayed at the cleft team's office. Mind you, the cleft team set this appointment up for 9:45, they had 9:30 on their schedule and it was 9:50 when we got there. We arrive and the woman at the desk looks at her watch and tells us we are late, that she will have to ask if we can still be seen. I tell her they ran late at the cleft teams office, but she didn't seem to care or even know what I was talking about. Oh yes, and there was a snow storm so I had to drive like 15mph the whole way there. Jesse needs a nap after waiting another hour and starts crying, there's nothing more I can do for him. He has a clean diaper (which I had to change on the floor), he had a bottle and the toys I brought for him were no longer entertaining. The doc comes in at 11am, an hour and 10 minutes after we got there. He checks out his ears, says he's all good, mentions that he will adjust or replace his tubes when we get the palate surgery and sends us on our way within 3 minutes. We left the house at 7:30am and didn't get back until 11:30am. Ugh. Long day, for all of us.
Back to the speech therapy thing. Today I call Child & Family Connections as instructed. They told me because my child is only 9 months old, not speaking words and hasn't had his palate surgery yet that they can't do anything for him. She said she'd try and see if we can get an evaluation (which is what he had yesterday), but it's unlikely due to those circumstances. Ok, so I asked what hours they do evaluations and she told me school hours 9-3. I asked if they do evenings or weekends because I am a working parent, she said no, I would have to take time off work for the eval. I ask if the hours are the same for therapy, she said yes. I said, since I am a working parent I will have to take time off work one day a week for speech therapy, she told me I can have my daycare provider do it if it's within the county (which she's not) or I can get a private speech therapist and pay out of pocket. So I am supposed to let my child get behind in speech because I can't afford to pay for it and I will lose my job if I take time off every week for it? I can't be the only working parent in the state who's child needs speech therapy! They are supposed to call me back tomorrow.

Tuesday, January 4, 2011

A Year in Review: 2010

I have read a bunch of blogs that review their year, I am going to attempt the same. I hope I can come up with at least one thing for each month.

January: Paul had his first back surgery. A microdiscectomy, they took out the bad parts of his herniated disc in hopes this would do the trick. It relived his pain, but only temporarily.

February: Finished the baby's room and got pregnant pictures taken by MarkD.

March: Patrick and Lexi's wedding. Got a few more pregnancy pictures taken by Kristia. Had my baby shower, that was a total blur of a day. Celebrated my nephew Christian's 2nd birthday. Waited for baby to come. Weekly doctor appointments. I went to my appointment on March 30th where my doctor told me I can get induced... March 31st, April 1st or April 2nd. I knew I didn't want my baby born on April Fools Day and I didn't want the doctor that would be there on the 2nd, so March 31st was the day we'd be meeting our baby boy. After 12 hours of labor and 2 hours of intense pushing, we finally met him. Jesse.

Photo By Kristia

The moment my life changed forever.

April: After an exhausting evening and Jesse spenting the night in the NICU, we were reunited again. We saw family, met with a specialist, spent time with our new baby boy. Friday.... Good Friday, we went home. It was a beautiful day. Might I mention Paul and I were engaged on Good Friday. The next few days were mostly sleeping and visitors. Sunday was Easter and we spent it at home, with our new little family. A few weeks later we met with the cleft team and his pediatrician.

Easter Sunday

May: 2 Trips to the Zoo. Jesse slept most of the time. Then back to work! It actually wasn't as bad as I thought it would be. At the end of the month some friends invited us on a camping/canoe trip. My in-laws took Jesse overnight and Paul and I got a much needed break.

June: Jesse's surgery. One of the hardest days of my life. The whole week was pretty rough.

In the waiting room.

In his surgical gown.

Post-Op recovery room

Home - later that day

July: Recovery. 4th of July, went to my in-laws to see the local fire works. Our dear friends lost their 5 week old little girl. For our birthdays and anniversary, we went to the Lake and Jesse had his first boat ride.

8 days post-op

First boat ride

August: Jesse started eating cereal and pureed foods! Celebrated Daves birthday and took Jesse swimming.

First cereal feeding

September: Jesse had his Christening on September 19th. Went to Aunt Cathy & Uncle Mikes BBQ on the 26th.

October: Took Jesse to his first Sox Game on October 1st. I volunteered at the FCHN soup kitchen with my coworkers on the 7th. Paul had his double spine fusion on the 14th. It was a rough 4 day hospital stay. Jesse spent most of his time with my family. Paul was released from the hospital that Sunday and began his home recovery. Jesse impressed everyone when we visited the cleft team. Then our first Halloween! Jesse and I went trick-or-treating with Cheryl and her family.
Sox Game

After Surgery

Jesse's costume. His hat was made by Knotty & Nice Creations.

November: I did another volunteer day at FCHN. Dad had back surgery. Our first Thanksgiving! We went to my Aunt Carries. So much fun, Jesse had some turkey and corn casserole.

Jesse with my sister Kelly on Thanksgiving

December: Celebrated another Thanksgiving with Paul's family. I worked my largest event for work, about 600 people came to the Commercial Real Estate Fellowship Breakfast and it was a huge success! Santa came over for some pictures and Jesse started crawling on the 23rd. Then of course, Jesse's first Christmas! We spent Christmas Eve with my family and Christmas Day we popped in at my Uncle John's then went to Paul's parents for the rest of the evening. Jesse scored lots of toys and clothes. I still have not uploaded the Christmas pictures to my computer. Maybe I will get to that this week.

What was left of Jesse's dinner

Monday, January 3, 2011

And a New Year Begins

The holidays came and went without a hitch, except the cold Jesse and I both got. I have still not yet downloaded any pictures from the holidays, so no pics in this post. Jesse got lots of toys and clothes for Christmas, more than I know what to do with.

I have done a lot of reflecting in the past week or two. I don't know where it's all coming from, maybe just the time of year and the new year that awaits. What will this year bring me? Hopefully less hospital visits. 2010 had so many ups and downs that all I wish for is less drama. Meaning less hospital visits and stays, more positivity, more progress. I am very nervous about what my future has to offer, I am thinking 2010 just left a bad taste in my mouth.

I have met a lot of new friends online and I look forward to meeting some of them in person after Jesse's surgery and when the warmer weather returns. These new friends are cleft moms. I look forward to having someone who I can talk to about being a cleft Mom because right now I feel very alone. I don't want to seem too desperate for friends, but it's hard to talk to people when they don't really know the things that I go through, big or small.

My self esteem has been pretty low the past week, I don't know if I am just in a funk or what, but I have been questioning my parenting abilities. I feel like other people question me too, but maybe that's just my low self esteem making me think thats what's happening when really it isn't. I am also sleep deprived, which I know alters my thinking and mood. Hopefully I can get some rest and get a recharge and everything will return back to normal. Whatever normal is these days.