Worries About Will

I've posted before about being a worrier. Having kids made it worse. Having kids with medical issues has made it phenomenally worse. Tomorrow, Will has his second check-up with Dr. Awesome since coming home from the hospital. I am trying to look at it as just a routine check-up, but as I am quickly learning, nothing with a heart baby is routine.

I worry every day if Will is eating enough. If he doesn't eat his whole bottle, was it because he just didn't want it or did he get too tired to finish (a sign his heart is working too hard)? I worry if he sleeps too much. Is he just going through a growth spurt or is his heart working overtime and wearing him out? I worry if he doesn't have a certain number of wet diapers, he should have lots due to his lasix.

And then I have my random every once in awhile worries. Worries about what could happen in the future, about what could happen if Will's heart doesn't continue to function as well as it is. Worries I don't want to have or even think about.

I am worried about Will's check-up tomorrow. Will he have gained enough weight? Will his echo still show his left ventricle is functioning normally? Will his coarc repair have narrowed again (he has a 20% chance of that happening)? Will his valves still be opening enough?

I've already realized my life will constantly be filled with worry now. It's just a matter of learning to control my worries.

Laid Back Sunday Morning

We stayed in PJ's a little longer than usual this morning and just had a laid back Sunday morning.

A Lot Can Change in 4 Years, But the Important Things Don't

Yesterday, Joe and I celebrated our 4th wedding anniversary. How did we celebrate you may ask. Let's see, Joe was working a 24 (actually a 48, still haven't seen him), I was working our garage sale with Erin, and eventually when one of us (darn it, it was Joe) remembered it was our anniversary lovely sentiments were sent via text message...

Joe: Happy Anniversary! I loave you! Are we rich yet? (inquiring about the garage sale).

Me: Happy Anniversary to you too! Not rich yet, but I sold our crappy broken mowers to our neighbor!

Nice, huh?

Lately, we have been thinking a lot about our life together since we were married in 2006. The first year and a half was picture perfect newlywed life. We got married, moved to SC, had a brand new house built and moved in, got a boat, had really fun friends that we loved hanging out with, generally just enjoyed life together, and got pregnant with our first little bundle of joy. Everything was going great! We seriously could not imagine things getting any better (unless we some how became the recipients of copious amount of money to pay off our debt).

The past 2 and a half years have been equally filled with love, but have definitely not been picture perfect. And the last year has been the most stressful of all. A year ago I had my miscarriage, followed by a ridiculously crazy pregnancy, and after Will's birth things did not get any less stressful.

We were looking at pictures on the computer the other night, and noticed a DRASTIC change in the pictures of us before Julianna's birth (we looked young, extremely happy and awesome if I do say so), after Julianna's birth (we looked older and although extremely happy, not quite so awesome) and after Will's birth (we look really stinkin old, still extremely happy, but definitely not awesome...haha!). People joke that their kids aged them, ours REALLY have!!!

Our kids are the best things since sliced bread, but boy oh boy they can cause you to pack on the grey hairs, lose your hair, gain weight, lose weight, quit taking the time to make yourself look awesome on a daily basis (ok, like ever), and generally quit caring about yourself as long as they are happy, healthy (as healthy as can be), and loved.

Although A LOT has changed in the 4 years we have been married, there are 3 important things that have not...I love Joe...he loves me...and we are still extremely happy.

It's PT Time Again

Julianna has had relatively few preemie related issues. We are so thankful for that. She does have some long term issues though since she was born so early. At some point early in her life she had a lack of oxygen (doctors think it was during the c-section when her cord prolapsed before they could deliver her). That lack of oxygen caused some parts of her brain (areas related to motor skills) to die and cysts formed. The presence of these cysts is how she was diagnosed with PVL (periventricular leukomalacia).

Julianna's cysts are mostly on the right side of her brain which affects her motor skills and development on her left side. She sees a neurologist to follow her PVL and that diagnosis is how she got into her early childhood center. Today, she had a physical therapy evaluation. We've always noticed some mild issues with her left side, but lately they have started to affect her development. She is about 6 months behind on her gross motor skill development.

She has some overall weakness in the muscles on her left side, her left ankle rolls inward a little, she has some issues extending her arms upward and balancing. She's going to have PT added to her IFSP, but not until after her speech evaluation in 2 weeks. It's a lot easier to have 1 meeting to change her IFSP rather than 2. We're all hoping that by working to strengthen her muscles on the left side we can get her caught up developmentally. I think she's going to love the fact that they are bringing out a mini trampoline for her to "play" with.

Her teacher also gave me Will's paperwork to get him officially into the center. We're pretty sure he is going to get PT or OT since he's had such limited tummy time and is already behind on some of his developmental milestones. But we'll do whatever our kiddos need!

Deep Conversations

When we're the only 2 up in the middle of the night, Will and I have deep conversations. We discuss the politics, the oil spill, the weather and lots of other important subjects. Today, Will decided we should have one of those conversations during the day. This time I let him do all the talking.

Memorial Day

We spent this past weekend at our camper and it was so nice and relaxing. We grilled for dinner every night, Julianna went swimming, I got to see my cousins that live in NC, we had a cookout with Joe's family and we ended it all with the annual Memorial Day parade in my hometown. I've only missed 1 parade there my whole life and that was when we lived in SC.

Today's parade had to battle some not so pleasant weather, a pretty good storm blew in about half an hour before the parade started. We didn't let that ruin our fun though. We put down the seat in the trailblazer, put a blanket in the back and had our lunch there during all the rain.

Joe and Julianna enjoying ham & cheese sandwiches.

Julianna still eating while I checked the weather on my phone.

During the parade, the rain calmed to just a drizzle.

The kiddos hanging out in the dry car.

The weather didn't bother Will at all.

We tried to tell Will he's too young for candy, but he didn't believe us.

9 Pound Smiles

Will had his follow-up with Dr McC, who did his pyloric stenosis surgery, today. The appointment was pretty quick (well, we waited 40 minutes to see him and saw him for about 40 seconds). Will is healing nicely, but the best part was that he now weighs 9lbs! I was hoping to see 8.5lbs, so 9 made me really happy! That means he is so close to gaining the half a pound a week that Dr Awesome and Dr M want him to (he gained 1lb 2oz in 2.5 weeks).

This week, he started coo-ing. He loves to talk now, and we have very deep conversations (politics, environmental issues, stuff like that). We also got his first real smile yesterday (you know the kind your parents won't say must be gas). I tried so hard to get a good picture of him smiling, but with Julianna trying to jump in front of me to see him and me trying to get him to smile while taking a picture, this is the best I could get. But I think it's GREAT!

Will smiles!