Craniosynostosis revisited

I've barely posted on this blog over the past couple of years. Although, a lot of people still read it. I think most of the people who read it come across it while searching, "craniosynostosis." This has always surprised me. I've decided it's time to do a quick update on Hazel for those who are curious. My daughter Hazel is 4. She's about to start pre-school and was born an identical twin. Hazel has Craniosynostosis. Hazel's twin sister passed away almost 3 years ago from a heart defect. Hazel had surgery when she was 2 months old in Kansas City. I loved her neurosurgeon there! Our one scare with Hazel happened after surgery. She was given her narcotics too quickly and in an infant that young it can cause, rigid chest, which it did. Twice! We thought she was going to die. It was awful. The surgery is very painful and we were only sent home with Tylenol. Hazel cried for nearly 24 hours after we got home. We took her to the ER and she was prescribed something stronger. After that we had about 10 months of helmets. Once those were gone, Hazel's life was totally normal. Hazel still has a very lumpy head. The helmets did not make her head perfect like I think many people expect. But she is a healthy and beautiful girl and we love her to bits!
















































Here are a few when she was younger.

Snivy

So...it's been awhile.
Ivy turned one a month ago.

Ivy started walking a week after her birthday. She babbles a ton but it's mostly all nonsense.
She flirts with everyone but not as much as she used to.
For her birthday we had a small party with our little family.

2 years

A couple weeks ago was the two year anniversary of Lucy's death. I had to teach Relief Society in church and I barely made it through. My heart hurts for her as much as it did a year ago. Progress it slow. Today out of no where I saw a picture of her and it knocked the wind of of me. I miss her so much. I miss her funny little wave and her little white washcloths.
Even though Ivy is only 7 months old she's about the same size Lucy was when she passed away. She looks like her. A chubbier darker Lucy. It's hard. My children bring me so much joy. I don't know how Chuck and I could get through this without them.

It's early in the morning and I can't sleep. Two years ago today we woke up one of our sleeping babies and took her to the hospital for what would be the last time. She was so tired that morning she laid nuzzled on my chest like a newborn. I wish I could go back to that morning. She was terrified when she realized we were back at the hospital. We'd just spent 10 days at home after three long months of living at the hospital. She didn't want to be back. I wish I could erase this memory from my mind forever, but I remember perfectly. We spoke that morning with her surgeon. I asked how long they expected recovery to take. His answer was 2-3 days in the ICU and then a week or so on the floor. She never made it to the floor. Ten days after this surgery we lost her.



This was the last time I held my little girl like this. This was the last time she was Lucy. I miss her more than I can say. I see her face looking out from her siblings sometimes but it's not enough. I am so happy that this amazing child is part of our family. I'm so glad I was able to be her mother. She changed me forever.
I've been feeling overwhelmed lately with residency. It's hell. Chuck is on what is considered an easy rotation. He get's a day off on Saturday and it will be the first one he's had in three weeks. His next day off will be in another 2 weeks. Somedays I just don't feel like Chuck and I are cut out for this. We're weekend people. In fact we're like.....long weekend people. Then I remember Lucy and how much she endured and how well she endured it. She was so much tougher than I will ever be.

Tour of the house part seven: living room

This room has been a little challenging. For one thing, it's really big. The other thing was that we really didn't have the right furniture for it. We have a large sectional that just didn't work. Chuck ended up pulling it apart and creating two couches. We stuck the corner piece in the garage. We are planning on putting up crown molding which I'm pretty excited about and I still have some painting to do around the doors and windows. Some of the art needs to be rearranged too.

Tour of the house part six: Dining room

You'll notice the farther I get into these posts, the more unfinished the house will become. Right now this room looks a little Eastery. Chuck built the Dining room table and my mom hung the chandelier. I'm working on getting all the trim painted. Right now it's just primer. The rug just came and I love it. Chuck loves the symbolism in the pattern in the rug. He'll have to tell you about that one. The wallpaper will eventually come down but it's low on the list.(you haven't seen the bathrooms yet)

House tour part five?: kitchen

Our kitchen isn't quite finished yet. It's fully functional except for the hood over the stove. We mostly just have detail work to do. Chuck put all the cabinets together himself and his dad and him hung them. Except for the big pantry one's, I helped with those.


My parent's came for a visit recently where the three of us did the backsplash. We went back and forth between this and a quatrefoil pattern. I ended up doing the subway tile because it was so much cheaper.


My favorite things about this kitchen are the gas stove, farmhouse sink and island. All three things Chuck had to talk me into.


This used to be a closet you entered from the hallway on the other side. Chuck and Jack knocked it down. I

Tour of the house part four: entryway

Wow. I'm on a blogging roll today.













Our entryway is pretty dark, especially in pictures but we just added a new light fixture which adds a lot of light.

House tour part 3: Ivy's room

I made the garland from IKEA Christmas ornaments.

Tour of the house part two: jack and Hazel's room

So I think I've posted pictures from Jack and Hazel's room before but here are some more.

Jack wants his own room. I think it would be really hard on Hazel to sleep be herself though. So they'll be sharing until Ivy is old enough to sleep in a twin sized bed.










The quilts are my favorite part of this room. My husband and I made them together and included bits of Lucy's old dresses. Most of the fabric is cute little fairy tales though.