Friday, August 27, 2010

Surgery for Hazel

We took Hazel to her long awaited doctors appointment today. We met with the neuro surgeon and we loved him. He's Nigerian and sounds just like Mr. Echo from Lost. He told us Hazel would need surgery and gave us two different options. The first option would be to wait until she's 9 months old and have major reconstructive surgery on her skull. She would need to spend a week recovering in the hospital but would not need to wear a helmet. We've seen pictures of kids after they've had this surgery and they look really awful. The scar would also be from ear to ear over the top of her head like a headband. The second option is a minimally invasive endoscopic surgery where they remove a large piece of bone where the growth plates have fused together. She would be able to come home the same day as her surgery and the recovery will be much easier. She'll have two smaller scars on the top of her head and will need to wear a helmet for the next year. She'll have to have a series of three different helmets and will need to keep them on all day. We chose the second option. She has surgery Sept. 13. He said he would have done it next week but he's going to be out of town. We were a little shocked he wanted to do it so soon. Overall I feel really good about everything. I was really scared she'd have to have the more invasive surgery because the research we had done on the internet explained that not everywhere does the endoscopic surgery.

Wednesday, August 18, 2010

Glamour Shots

Cute babies ahead...Lots and lots of pictures of cute babies.

Hazel, smiling with her eyes.

The pouty lip. Lucy's secret weapon.

See what I mean about the lip?

Lucy's starting to get some cheeks...

But she's not nearly as cheeky as her sister!

Hazel, the happy sleeper.

(Headbands from Baby Bintz. Thanks Carly!)

Booty shot.

How can we not include this cute boy?

Lucy having a smoke...very glamorous.


Surprised face. (And that's Hazel testing out the Podee baby bottle. Very awesome.)

And this is me. Dad. That's right. It's finally my turn to take a little credit for having cute babies.

Can you tell how hard I work for these babies? If I look tired, I am. But not nearly as tired as I could be. I am so grateful to Pam for taking one of the night shifts. I have the 11-2 shift. Eliza has the 5-8 shift. I'm pretty sure that Pam got the short end of the stick with the 2-5 shift. But that's what she wanted. She flew back to Utah today and is going to be gone until...well, I don't want to think about it (just a few days). I'm hoping to get through tonight. We have become really dependent on her, so we'll have to figure out how to manage without her.
Eliza and I are so lucky to have such wonderful family and friends. We can't express enough how grateful we are for the prayers, fasts, and thoughts on our behalf. Our girls have been the recipients of miracles, and I can't help but think that your faith has made those happen. Even though having two babies at home is incredibly difficult, we are so lucky to have them both home! (And things could always be worse. That Target commercial with the triplets reminds of that daily.)
I am so lucky to have had the opportunity to be at home this whole time. I'm not working, and school has been postponed until September, so I'm a stay-at-home dad for two more weeks. Diapering, wiping, feeding, burping, bathing, changing, rocking, walking, swaddling, cooking, (some) cleaning. I know, I sound amazing. It's because I really am. What is Eliza going to do without me when I have to go back to school?! Let's not think about that yet...

(And I hope you know that I'm totally joking when I toot my horn like I just did. I'm not that arrogant...)

Friday, August 13, 2010

Gammy's birthday

Gammy, for those of you who don't know, is my mother. That's what the grandkids call her anyway. She secretly wishes she was a Nana, but not just anyone can pull off being a Nana. My mom has been in Kansas City for the last month now. She has been a big help and we're able to get a decent amount of sleep because she takes one of the night time feedings. We love Gammy. Happy Birthday Momma!

Gammy's Birthday: Gammy not pictured

We had a pinata for Gammy's birthday. Jack and his friend tried hitting it. They barely made a dent in that thing. It was so funny to watch.

Eden riding the pinata.
Jack nearly crushed it.
Jack blew out candles for Gammy.

Wow Hazel...what are you looking at?

Hazel says, "You stink Lucy."
I think Lucy looks so funny in this picture.

Hazel is just lounging nakie in the blankie her grandma Hutchings made.
A little update on the girls

Lucy: We met with Lucy's cardiologist this week. He thinks she's looking good. She's only in the 3rd percentile right now for height and weight and may need to be put on high calorie formula in the future, but she's ok for now. The doctor's probably won't operate until she is at least 6 months old unless she starts going downhill. Lucy is a good little girl. She is going to be so spoiled. I get nervous when she cries for very long because I worry about her heart. So she gets picked up a lot. Hazel may resent us one day for not picking her up as quickly.

Hazel: This week we called the pediatrician because Hazel's soft spot was bulging out a little. The doctor told us to go to the ER. We thought this seemed unnessasary but we went anyway. They told us she was fine and explained her condition a little better to us. I feel pretty good about things with her right now. She's a good little eater and is quickly outgrowing her sister. She loves faces and loves to stare into our eyes. Gammy says Hazel must be "highly intelligent." Lucy on the other hand...

We love our kids.

Friday, August 6, 2010

Another Hazel update

Last night the pediatrician called and told us that she talked to the radiologist. The CT scan confirmed that Hazel does have cranio synostosis. The ultrasound showed cranial swelling which is consistent with the diagnosis. As of right now her CT has only been looked at by our pediatrician and a radiologist. A neurosurgeon will review her tests to see if she needs to come in sooner than the 27th. Based on what we've read on the internet, she'll probably need surgery between 2 and 3 months. But who knows for sure. I'm just very grateful that both of my girls health issues are treatable and that they aren't in much, if any pain from their conditions. We have so much to be thankful for. Thanks everyone for your thoughts and prayers. We feel them everyday.

Thursday, August 5, 2010

Update on Hazel

This morning we went over to the children's hospital to have Hazel's head looked at. First she had an ultrasound and then they did a CT scan. We were told we'd be meeting with a neuro surgeon today but when I called to see when they had scheduled our appointment we were told we wouldn't be seen until Aug. 27. Three weeks! We're hoping our pediatrician will get in touch with us with the results by tomorrow.
When we first found out there might be something wrong with Lucy I allowed myself some time to grieve. By the time we knew there was something wrong for sure I was ready to hear it. I feel the same way about Hazel. I spent a few days this week grieving, but now I'm just ready to know what we need to do now. There is still the possibility that nothing is wrong at all, but I don't think so. The more research I do the more convinced I am that she will need surgery.
Chuck asked me a couple of days ago what I was the most worried about. The truth is, the surgery isn't what concerns me the most. I know that will be difficult and awful but I'm worried about what her head will look like later in life. I wouldn't be nearly so concerned about this except for the fact that Hazel is an identical twin. Lucy will be a constant reminder of what Hazel is "supposed" to look like. I don't want Hazel to feel like there is something wrong with the way she looks. I don't want her to feel like she is being compared to her sister.
When we bring children into the world we do so knowing that they will have to go through difficult things. I never quite realized what that meant, and how much faith it requires on our part as parents to trust our Heavenly Father to look after them.

Sunday, August 1, 2010

Early Morning Thoughts

I probably shouldn't be allowed to blog this early in the morning but my mind is racing and it's my turn to be up with the babies. Lucy is asleep in her swing and Hazel is just falling asleep in my lap. I love my children so much. I feel so lucky to have been blessed with such wonderful children. Lucy has been doing great. The doctors have been watching her closely. We went to the pediatrician this week on Wednesday, Thursday, Friday and we'll be back again on Monday. I have a feeling this is what life will be like from now on. Lucy seems like a regular baby with a few exceptions. She doesn't eat as well as her sister and she sometimes has a hard time regulating her breathing, especially while eating. Our goal for her right now is to get her as big as we can to prepare her for surgery.
Hazel may also be needing surgery. We will be going back to Children's Mercy on Thursday so Hazel can get a CT scan done as well as an ultrasound of her brain. The worry with her is that she may have cranial synostosis, which is a premature fusion of her skull bones. If this is the case they will need to operate to give her brain room to grow. I am anxious to get some answers and have been worrying a lot about her. We never expected Hazel to be born with anything wrong with her. All of our focus has been on Lucy.
If the birth of my daughters has taught me anything it is that we should never doubt the power of our Heavenly Father. He can show miracles to any of us who are looking. It could be easy to overlook the blessings we've received and attribute them to chance. I think our Heavenly Father puts miracles in our lives to see if we will recognize his hand. Our pediatrician told us Lucy's collateral arteries were the biggest she'd ever seen. Those arteries are what are keeping her from having her first surgery. I have every hope that Hazel will see her own miracles this week. But whatever happens with my girls, I know it will be for the best.