Friday, April 22, 2011

Another Cardiac Cath and OHS

Cardiology scheduled Lucy for her third cardiac cath on May 16th. They are trying to get images of her heart so that they will know what they have to work with when they do her total repair. We are really pushing for her repair as soon as possible. We hoping it will be only a week or two after the cath.
It's getting more and more difficult to get Lucy to eat. If you don't make a conscious effort to push her, she won't get enough. She almost uses the feeding tube exclusively. She keeps getting sick which is super frustrating because it's so hard to get her to gain weight when she does.
I'm beginning to understand that the term full repair is a little deceptive. They are planning on leaving her VSD (the hole in her heart) open. In a few years they will mostly likely go in to fix it along with fixing any leaky valves.
I'm grateful for what they can do with the heart. The older my girls get, the harder it gets to watch Lucy fall behind. It will be such a relief to have this surgery behind us.

Friday, April 15, 2011

Hoppy Easter from Hazel!

When I was at the doctor with Lucy the other day my friend watched Hazel and Jack. She did this adorable shoot with Hazel. Now we just need to do some of Lucy.

Wednesday, April 13, 2011

Cardiology Appointment

More waiting. Lucy's doctor is going to have a meeting with the surgeon on Friday to discuss surgery. Basically we were told today that Lucy's pulmonary arteries are not big enough to do the full repair without needing additional surgeries. He started talking about the possibility of replacing her shunt before her full repair. We kind of all lost it at that point. None of us want to do that again. Our other option is to do her full repair and leave her VSD (a hole in her heart) open. She will need another surgery later on to repair this. We really want to have her surgery soon so she can recover in time for this summer. We're supposed to go to Utah in July so Chuck can do a rotation there. Then in August and September he will be doing rotations for the air force and the rest of us will stay in Utah. The problem is Lucy's arteries still might not be large enough. So for now we just have to wait.

Saturday, April 9, 2011


I've wanted to post these picture for a long time. Hazel was 3 days old when these pictures were taken. We had been calling her football head and hedgehog. I had no idea that something was really wrong until a neonatologist gave us a referral to see a neurosurgeon.

Craniosynostosis effects one in every 2000 babies born.
It's a deformity where the skull fuses prematurely.

Hazel next to her identical twin sister.

Hazel getting ready for surgery.

Hazel's head looked different right after surgery.

One month post op. She had blisters from her helmet initially.

Hazel's head a few days ago at her nuerosurgeon's office. Six months post op.

Friday, April 8, 2011

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.