Sunday, May 29, 2011

Surgery date

We found out on Friday that Lucy has surgery scheduled for June 6. That's only one week away! We were so nervous we wouldn't be able to get her in before July (when Chuck is supposed to be in Utah for a rotation.) Now that it's here I'm terrified.

I know that Heavenly Father hears and answers prayers. I know that even though my faith is not always enough, He is merciful and forgiving. I'm so grateful for all the miracles we've seen this year.

Sunday, May 22, 2011


Bone crushing stress. That is the best description of how I'm feeling. When I talk like this Chuck let's me know how dramatic I'm being. The truth is I don't need to add any drama to life right now. It's doing a fine job on it's own.

We were supposed to hear from Lucy's cardiologist on Friday but he never called. The cardiologist met with the surgeon to discuss a date and a plan for Lucy's upcoming surgery. We have our spies and actually know a little bit of what was said in that meeting. But no date. Here's where the stress comes in. I don't even know how to describe it. Anytime I allow myself to think about her surgery I feel I'll. I start thinking about last time. How hard it was. I know things could be totally different this time but they could also be worse. This is my test of faith.

I keep telling myself, "it will all work out." And if it doesn't, it will still work out.

I keep thinking about my mom. When she was my age her baby with heart defects didn't survive. I think how much worse it could be. How so many people's kids are worse off than mine. Gratitude is sometimes the only thing that makes this bearable. But it's not always easy to get there.

The stress doesn't effect Chuck like it does me. I'm glad. I don't know what I'd do if we were both basket cases. It used to bother me. I've come to appreciate his apathy. He knows this. Now I only hope one day he comes to appreciate my dramatics. I highly doubt it.

The girls haven't been sleeping well. I looked in Hazel's mouth today and saw two new teeth, so I'm hoping that was the cause, at least for her.

I think for a couple of nights after we came home from the hospital Lucy was having nightmares. She has trust issues. It's really sad. She hates when anyone touches her arms and will pull away.

We have physical therapy twice next week which she hates. She has improved so much since her last visit though. We,ll find out if she needs special pants to keep her from doing the splits. Have I mentioned she does the splits? It's creepy. She looks like a little baby gymnast.

Hazel is not smiley at all. I think she is so funny. She has one really long piece of hair on her head that my mom and chuck keep telling me to cut. It's right over her dime size soft spot that hasn't closed yet. I asked the neuro surgeon last time we were in why that was happening and he told me I was crazy. I actually love going to the neuro surgeon's. It's always good news. She's still on track to get her helmet off in sept.

Jack is turning out to be a sweet little boy. He's so naughty but we'll just pretend he isn't. He's spelling and writing words. I'm so proud. He can verbally spell 2 or 3 dozen words. The funniest is when he just starts spelling random words. One day he was walking around, " writer, w-r-i-t-e-r." I have no idea where he learns things sometimes.

Its time to wrap this up. I didn't intend to write so much.

Tuesday, May 17, 2011

The cath lab

Lucy had her cardiac cath today. One of Chuck's best friends just happened to be doing his rotation this month in pediatric cardiology so he was actually able to sit in on Lucy's procedure. It actually made me feel much better about the whole thing. Handing your baby over to strangers is never easy so it was a little easier knowing someone we knew was there with her. It was a little hard being back in those hallways and waiting room where so much has happened before. My mom got teary eyed several times today and the woman is a rock. She may have been a crier in her younger years but never in my memory.
The cath went well. Lucy's cardiologist who also was the one who does the cath lab took us in a small room to show us the results. Most of you know that Lucy had open heart surgery at 3 1/2 months to have a shunt placed. The purpose of the shunt was to get her pulmonary arteries to grow. Her right artery has done a great job growing but her left hasn't grown at all. This is going to make her full repair a little more tricky. The surgeons may decide to put in a conduit which would be made out of some type of animal parts. We always thought Lucy was part pig. Anyway, this means Lucy will be probably need surgery in 5 years or so to replace the conduit if that's what they end up doing. Even if they don't do it she'll still probably need another open heart surgery as a child.
We're in a tough spot right now. Chuck is supposed to be in Utah by July first for a rotation. Then he is supposed to do air force rotations in aug. and sept. So ideally we need her surgery done like yesterday. There has been talk of her waiting until we get back but I know she won't be able to hold out that long. I am just praying it works out. I really don't want to do this without Chuck.
I'm at home with jack and hazel. Chuck is spending the night at the hospital. On Friday Lucy's cardiologist will meet with the surgeon's and make a decision.

Tuesday, May 10, 2011

The other Bunny

It's been awhile since I've given a Lucy update. She is doing awesome! Last month when we went to the cardiologist I was pretty discouraged because she hadn't been gaining weight. Her cardiologist wanted us to see nutrition again to come up with a plan to get her to gain more weight. We weren't able to get an appointment until today. She's gained more than a pound since our appointment last month. The doctor was super impressed. We've been trying so hard to pump Lucy with extra formula. She also moving like crazy. She's not crawling like her sister but yet but she's getting a little closer everyday. I think her physical therapy is paying off. She actually has someone come to the house to help her in addition to going to Children's Mercy. It's been good to have two different therapists because they both seem to pick up on different things. Lucy has her cardiac cath on Monday and then next wednesday we'll meet with cardiology to talk about the results. Even though Lucy could probably go a little longer without her repair I don't want to put it off any longer. With her first surgery she was so sick beforehand. I think that is why she had such a difficult recovery. I want her to be as healthy as she can going into this next OHS. Go Lucy!

We finally got some cute Easter pictures with Lucy too.

Who says we don't look alike?

Wednesday, May 4, 2011

A whole lot of pictures.

Chuck ran a 5k on saturday around the temple. It was a lot of fun cheering him on.

Jack and Chuck had a birthday on Monday. Yeah!!! We celebrated Jack's birthday on Saturday. He's obsessed with Blue's Clues so that was the theme. It was a bit challenging since they don't make Blue's Clues stuff anymore. We had fun.

Just another appointment. We seem to average about 3 a week these days.

I know this picture is blurry but I love this face. She was being such a little ham that day.
Girls on the town.

Crazel without the helmet.