Craniosynostosis

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.

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.

Hazel Monster!

What happened to my sweet baby?

Her first tooth, that's what.

In the past, when mother's tell me their baby was teething and that must be why their child is misbehaving, I really didn't get it.

Jack got fussy but he was never this bad.

Lucy has been sweet as ever.

We're awaiting her first tooth.

Here Mom

Hoo's the cutest?

This weeks appointments

Monday- Took Lulu in to the Pediatrician and found out she's gained 9 oz. since Dec. 16. We are hoping that it's enough for her to avoid the NG tube. She now weighs 10lbs 14oz. She's only gained 1 lbs. in the last month.

Thursday- Hazel goes in to make sure her helmet is fitting and to make sure her head is shaping the way it should. It's not and it's not. Her helmet is way too tight and her head is starting to look like a rubix cube again. Is that spelled right? Hazel has been helmetless for the last day because it looked like it hurt. I hope they can stretch it out because she's not due for another helmet for a couple of months.

Friday- This is the big appointment for the week. We meet with Lucy's cardiologist. Her last appointment was the middle of Dec. and that's when he put her on a 26 cal diet (20 is normal). He told us then that if she didn't gain enough weight she'd need to be put on an NG tube. If we do that she'll need to go back to the hospital for awhile. He might also schedule another cardiac cath. She's had two of these already. That would also require a little hospital time. ugg.

The weird thing is as Lucy gets bigger she's going to get sicker because she'll outgrow her shunt. They will only do Lucy's surgery once she is sick enough. So we have to get Lucy well enough to become sick so that she can get better. Follow? That's ok.

In other news Chuck is doing his Pediatric rotation and thinks that he might to do his residency in that. He's kinda been around babies a lot lately.

2010

One year ago Chuck and I were driving home from visiting family in Utah. We had a double stroller in the back of our car that my sister gave us. We knew I was pregnant but had not yet been to an ob. "That thing is going to jinx us," Chuck said. During that Christmas break I had also had a dream that I had twins. It terrified me. I wish I remembered it detail. When I was pregnant with Jack I told Chuck that if we ever had twin girls I wanted to name them Blair and McKay after our dads. On January 9th of last year, we went to dinner with a friend of ours. It was the night before we had our first ultrasound. We made jokes about there being twins. An hour before my doctor's appointment the next day I called my mom. I told her I'd be glad when this appointment was over so I'd know there was only one. She laughed and told me, "If you had twins I'll hire you a nanny." When I was probably about 12 I remember a conversation with my mother and my two older sisters. We were talking about my brother who had died of hypo-plastic left heart syndrome. My mom said something about how one of us could have a child with a heart defect. I remember thinking then that it would be me. A few months before I got pregnant I knew something big was about to happen in our lives.

This past year has been the most pivotal year of my life. I think Chuck's as well. It has been the hardest year on our marriage but I know we are more committed to each other than ever. I love him and all my family for the sacrifices they have made for us. I feel a closer bond to my husband, my parents, my siblings, my in-laws and my extended family than I ever have before. I have felt people's prayers in a way that is beyond explanation. I can feel when they are strongest because I experience strength that is not my own. I would hope everyone could experience the power of prayer in this way. My testimony has been tried and tested. Some of beliefs have been shattered and rebuilt. I see myself and my life differently. This year I've learned to look for the Lord's hand in our life and I've realized my faith isn't as strong as it needs to be.

The Lord has done so much to prepare us for the trials we've had this year. When there seemed to be no hope at times, a way was provided. Sometimes we are kept in the dark for a reason. I know there is purpose to the events in my life.

2010 in photo recap: no particular order because I have no idea what I'm doing

Chuck, Lucy and Jack...Hazel never made it into her costume. We only lasted about 7 minutes at our ward Halloween party before we had to leave.

After the babies were born.
My little bro came home from his mission. A highlight of the year. I was so sad I couldn't be there.
Blessing day. Babies with their namesakes.
Hazel's surgery.
Lulu's surgery.
Gammy and Hazel.
Jack spent a lot of this year naked. He loves his "saur" more than anything.
One year ago.
38 weeks pregnant. Happy Birthday girls!
We have so many pictures of Chuck asleep with babies.
Welcome to the world Hazel.
Deathly white. I know.
Here we come 2011. I hope you are ready for us!

Nakie Babies

Hey sis, give me your hand.

I want to eat your hand.
Get way from me crazy!
Geez, what's the big deal?

Everyone is always asking me if the babies love sleeping by each other. If they entertain each other and if they talk in their own little language to each other. The answer would be, "no." They mostly just like to bug the other. They are way more interested in everyone else than each other.

I don't want to go back to Missouri yet but being away from her doctors has been stressful. We have an appointment on Jan. 7. We think she's been gaining good weight but we aren't sure what the expectation for her is. We're really hoping to avoid a feeding tube.

I'll be honest. I wish I could skip next year and jump ahead to 2012. It's going to be really rough for our family. I'm lucky to have such a great support system. I know I couldn't do any of this without them. When Lucy came home at 6 days old she was almost completely asymptomatic. Their was very little difference between the way we treated Lucy and Hazel. As Hazel has gotten older the easier she seems to get but the opposite seems true of Lucy. She's difficult to console, difficult to put to sleep and when we're just too worn out, we still can't let her fuss. I'm definitely not looking forward to her next surgery but I really want it done so we can all just move on with life. I know it's not that simple but some days that's all I can hope for

Hazel's New Helmet

She's actually had this new helmet for a couple weeks now. She'll get her next helmet in a few months.