images from the week

Hazel teaching Lulu to clap.

Lucy poops out pretty easily.

Sneak Peak

Upcoming Events

I'm completely done with Easter baskets and almost done with preparations for Chuck and Jack's birthday (It's the same day, did ya know? May 2nd) It may seem a little early but I've decided It's important that we celebrate this year and I'm not sure how much I'm going to feel like it in a few weeks.

Chuck has been jipped out of a good birthday for the last few years. Three years ago on his birthday I was in the hospital, giving birth. Needless to say Chuck was overlooked. The next year Jack turned one! I kind of forgot about Chuck again. Then last year I was determined to do something special but the unthinkable happened. One week before Chuck and Jack's birthday we were at the perinatologists office for the first time. He began to describe problems he thought he saw with Baby A's heart. He said he didn't know for sure but he'd send us to a cardiologists the following week. For a week I mourned for my baby. I don't remember much of a party for anyone. The day after their birthday, it was confirmed the fetus we had named Lucy would be born with a severe case of Tetralogy of Fallot. Bad birthday. This year we are facing another open heart surgery. Lucy meets with her cardiologist this week. From there we will most likely begin the process of making arrangements for her next surgery.

The anticipation of a child's surgery is horrible. Our experience after Hazel's surgery was so scary that I almost wasn't that worried for Lucy. I thought that surely we wouldn't have another scare as bad as that. How wrong I was. Lucy came out of the surgery because Heavenly Father wanted her here. Nothing the surgeons did could have saved her after things went bad. I try so hard to remind myself that Lucy's little life in the hands of a loving Father in Heaven. A father that I am striving to trust completely.

I am a member of The Church of Jesus Christ of Latter Day Saints. We recently had a conference where we heard from our prophet and other great men who receive revelation from God for us. The talks that were given felt like they were meant for me. I started listening to the first session about an hour late. The first thing I heard was a story about a little girl in an ICU. She described the angels that were there to her family. A few days earlier my mom and I had been talking about Lucy's angels. I'm sure my own brother who died as an infant has been looking over her. I missed most of Elder Scott's talk and felt the impression that I needed to go back and listen to it. It ended up being my favorite talk of the whole conference. It was on marriage and family. He shared a story about his own child that died of a heart defect. It made me feel like my Heavenly Father is aware of me and knew what I needed to hear. I love general conference, there is nothing else like it. Making people want to be better without passing judgement or slathering on guilt is such a gift and it seems like every speaker somehow accomplishes it.

I'm anxious for the appointment this week. Lucy has been slowly going downhill. She passed out yesterday in Chuck's arms. He isn't too concerned but I'm feeling like Wednesday can't come soon enough. Did you know Shaun White has Tetralogy of Fallot. It's true. And I saw him the other day at Festival Foods (Our grocery store) :)

Sorry for the length.

Mom in a candy store

This is one of my favorite spots in Kansas City. Christopher Elbow makes these beautiful chocolates. There are only two stores, the other store is in San Francisco. They have flavors like: fluer de sel, tupelo honey, lavender, cinnamon hazelnut, balsamic vinegar, rosemary, mango and tons of others. I've always been a sucker for packaging. Almost too pretty to eat. Doesn't this make you all want to visit us?

My personal favorites are the Venezuelan spice and the lime.

We also passed this little restaurant today and I had to take a picture for my little Lulu.
There aren't many opportunities for us to get out but we love to take advantage of living here when we can.

Life lately

I've been bad a blogging lately. Life has been a little stressful the last couple of weeks but we're all doing pretty good. Chuck is facing some stress at school, but we've tried to not worry about things that are out of our control.

Lucy started feeling sick on Friday with a fever of 103 and four days later she was still running a really high fever. They sent us to the hospital to have her blood work done. It took 9 different nurses and an hour and a half of trying before they finally got enough blood to run Lucy's labs. They eventually got it from her head (which is what I suggested from the beginning). Lucy has kinda hated me since then. We've also had to replace her NG tube twice in the last two days so that doesn't help either. She's pretty much terrified of everyone lately. I think she has nightmares. So sad. In better news, Lucy is sitting! I honestly have never been more proud. It felt like this would never happen. She still doesn't bare weight on her legs so I expected sitting to take forever. She's very proud of herself and loves being able to play with the big kids.

We're getting a temple here in Kansas City. It's only 10 minutes from our house and in our ward boundaries!

Angel Moroni
Jack has been so much fun lately. He's starting to move past the hard stage.

He refused to wear this hat for Halloween but he loves it now.
Lucy sitting.



She doesn't like the flash.

Randoms

We see a lot of bum around here lately.

Chuck and I celebrated our 5 year anniversary this past weekend. We were lucky to have my mom here to help with the kids. After the kids went down for bed we went to dinner at a fun little Italian restaurant where we completely ignored our weight watchers diet. Well almost. I was a little sad that I looked totally nasty and hadn't even showered, but beggars can't be choosers.

By the way can I just say dieting when you're stressed is like the worst thing ever. It's like I've lost all my ability to cope. Now I'm just a pill all the time. I can't even say it's baby weight I'm losing because I gained 15 lbs. after I had the babies. I'm the only person I know who loses weight while pregnant and gains it all the year after. Lame. Don't feel too sorry for me, I still eat chocolate everyday. It's good for my mental health.

Picture overload

I know I haven't posted in awhile but I'm hoping to get back in the groove. We've had a crazy month. We had a cardiologist appointment today. Lucy has been gaining awesome weight. She made it to the 1st percentile. She hates her NG tube but it's doing its job. She keeps the tube in all the time but we only use it at night. We go back to see him in a month and from there we'll probably schedule her full repair. You think we'd be used to it by now but it doesn't get easier. I think the anticipation is going to drive us insane. We've also been potty training Jack which is a lovely adventure in itself. It's going to be a loooong month.

Jack is currently obsessed with Blue's Clues. It's actually motivated him to talk a lot more.

Classic Hazel. This girl does not get enough attention. That's what she'd tell you anyway. She loves to scream. She gets it from Jack. She's going to be all drama I know it. Of all my kids she seems to like me the best. Which can be good or bad. The mornings with her are the hardest. There is just no time to sit and play which is all she wants.
Hazel adores Jack. Sometimes they will just sit and laugh at each other. It's the funniest thing I've ever seen.

Hazel trying to teach Lucy how to be a big girl.
I can't believe I haven't posted since Lucy got her NG tube. This was her after she came home from the hospital this last time. (She was in the hospital twice last month.) Those extra circle stickers are from being on oxygen when she was at the hospital.
Both girls and Jack love this Jessie doll.
You grow girl!
She can barely touch and it needs to be raised for Hazel.
This is what we've rigged to give Lucy her feeding at night. She just gets to eat normal during the day and at night she gets a continuous feed. One perk is that she will often sleep through the night. We still have to get up to change the milk every few hours.

Chuck's happy.

Recent news

I know I haven't blogged much lately. I try to avoid it when I know I'll whine. I've felt very whiney lately. We've been home with Lucy just over a week now. She's been gaining weight and we're really happy about that. The truth is I hate the NG tube. I know it's good for her but it's made our lives that much more complicated. She feeds by mouth through the day and then we give her a continuous feed through the night. She doesn't tolerate the volume of food very well and will often throw up. We have to get up every four hours to change the milk. She likes to kink the cord when she sleeps which sets off an alarm. Then it seems like it will wake one baby up and then that baby will wake the other baby up. You think the girls would be use to each other by now but they seem to get more and more annoyed with the other. We've been getting next to no sleep. The girls screamed for hours last night. They both have colds. Lucy is really what makes the equation so difficult. She's not "allowed" to cry and so she's become totally spoiled and is extremely difficult to get back to sleep. My experience with these girls is so different from Jack. Jack was a really hard baby except for the fact that he was an amazing sleeper. He started sleeping through the night at 7 weeks. I miss that. It's not so bad when my mom is here and we can split up the night in shifts but she is currently in Cabo. Booo. We miss you Momma!

In other news, Hazel looks so cute in her new helmet. It's a lot bigger than the last one. We still need to think of how we are going to decorate it. Jack is still obsessed with letters. His new favorite words are JOG and STOP. I wrote those capitalized because that is how Jack prefers them. I don't think he even knows what jog means but he really likes spelling it with his magnets and insists on sleeping with his magnet letters, J-O-G. Weird kid.

Our biggest stress right now is the upcoming surgery. Chuck and I are both a little terrified, especially considering how difficult the last one was. We're trying to have faith and to let go of what is out of our control.

Helmets, NG tubes and MRI's oh my

Yesterday was a busy day. We had a cardiologist appointment for Lucy and a neuro-surgery appointment for Hazel. At Lucy's appointment we learned that her oxygen saturation levels were really good at 88%. They'll probably do surgery when her levels drop into the 70s. As she outgrows her shunt her ox sats will drop. We also learned that she still isn't growing enough despite increasing her calories in her formula. Lucy is going to be admitted to the hospital on Friday so they can start her on a NG tube and teach us how to do it. Lucy might also need an MRI while we are there. After Lucy's last surgery she was put on ECMO for a short time. Because she was taken off so quickly no one did the usual testing that is done after coming off ECMO. They are starting to think now that maybe they should take an MRI to make sure things are looking okay. If they do this she'll have to be sedated and intubated. I'm not really feeling up for any of this.

Hazel's appointment went great. Her head looked great. I think these appointments with neuro are more for their benefit than for our. They like to take lots of pictures and document her progress. Today we're going in for another helmet fitting. This will be her 3rd helmet! I can hardly believe how fast time is going.

Lucy laughs