Snow

It's been snowing all day...even before I got up. Hasn't given up yet. We've gotten a couple of inches by now. Natalie's first comment when she realized that we had snow, "Yeah! Egg Hunt, Mommy!" Ugh! Only in Alaska does snow trigger reminders of Easter Egg Hunting. So I proclaimed that today was the first day of Rock Hunting (as they are covered in snow now). Maybe more appropriately we should be hunting for the garden hoses that haven't made it into the garage yet.

Return to Reality

It can be so nice to live in a land of fantasy. Cinderella, Snow White, Goldilocks, fantasy football and the list goes on. Even though we don't believe in our hearts that life is "happily ever after," it has been nice to enjoy these past couple of years with Natalie being relatively free of concerns for her heart. She's been an overly energetic little girl with an attitude. She loves to tease yet can be tormented to tears by her older sisters. She's loving life and wanting to try everything.

But...she seems to be slowing down. I notice that she's wearing out a lot easier with activity. She'll be running around the house or in the yard and come over and ask to be held. "I tired," she'll say. I can feel her little half-a-heart beating rapidly through her chest and hear her panting breaths trying to get her body caught up on it's demand of oxygen. My heart aches for her as I see how hard she tries to keep up with those around her. Her will is willing, but her body ain't!

We had a regularly scheduled cardiologist visit this past week. Since Natalie's in a pretty fearful stage of her life right now, I tried to prep her about them listening to her heart and looking at it with pictures. Her appointment was in one of the satellite clinics (not Anchorage) so we were in a whole new office too. She did quite well emotionally.

She weighed in at 26.6 pounds so we will still be waiting awhile before the surgeons will be willing to do the Fontan procedure on her. Her sats started out at 72% and climbed to 77% after a couple of minutes. This was just after her walking into the clinic, not even running. So I know that when she is overly exerting herself she must be getting down there. No wonder she's getting tired.

Dr. Brauner did an echo this time. It had been a year since she had an echo down in Seattle. Overall her heart function looked good. He wasn't able to see the pulmonary arteries that carry blood to the lungs. They're really hard to see because of scar tissue. These can sometimes become narrowed where they surgically attach the SVC during the Glenn procedure thus reducing the blood flow to the lungs. While we know that the bigger that she gets, the more she will self-limit her activity, we may need to see if there can be some options to help improve her oxygen saturations if they continue to drop to the low 70's or high 60's before she's big enough for the Fontan procedure. (Click on Fontan to learn more, Mom) So, if Natalie's sats start to hang in the low 70s to upper 60's when she is resting, we'll be heading back down to Seattle for a heart cath to see if she can get tuned up.

Dr. Brauner turned Dora the Explorer on the little DVD player that he had while he was doing the echo. Natalie held really still until Dora started singing. Then her feet started to wiggle, then her hips. The wiggle kept working it's way up. She was trying to be still, but just couldn't. Dr. B. is a very understanding man and was impressed with how well she stayed put despite her interaction with the music.

The reality of her heart defect and it's impact on her life just hits me sometimes. I hate it when I see her get so worn out from her play. She has so much spunk that I wonder how she will handle not being able to physically keep up with other kids her age as she gets older. I know that what has been surgically done to her heart is just palliative. It's not a "fix." I pray that she will live a long and happy life with her own heart, but in reality most literature and cardiologists always bring up eventual heart transplant for a single ventricle person.

On a lighter note, Natalie has now moved back into her brothers room. The side-rail on her crib is off so she's learning to stay in bed like a big girl. It works well at night, but only because she hasn't had a nap the past couple of days (because she didn't stay in bed).

Her vocabulary has blossomed to the point that she is speaking in sentences now. Sometimes she gets the sentence structure mixed up, but is doing better. She still speaks jargon a lot when she is playing, but at least she has started to speak words to us and communication is going a lot better.

Natalie loves to dance to music. If you've ever seen the PBS show about Wilbur the cow, she has the same kind of wiggle when she listens to music as Wilbur does. It's so cute. It makes me laugh every time I see her do it. She can work our keyboard quite well and one of the songs sounds like a horse race. She loves to race around the living room when that song is playing. Of course, when she gets tired she runs over to me and asks me to pick her up...then I have to run the race holding her! We make a lot of memories running and dancing our way around the seclusion of our own home, just Natalie and me. I will treasure these times in my heart!

There are other things that I know I'm not thinking about tonight that I had wanted to post about her. Guess it will have to wait.

The First Day of School

School started for us on August 24th. Grandpa and Grandma were here to see the girls off. I think my mom, who is a 5-6 grade teacher, was more excited about the girls going to school than they were. It was a fun experience for us all.


My babies are growing up so much. Jessica started kindergarten this year. She's just a little bit of a thing...her backpack is bigger than she is. But, where she lacks height, she makes up for in spunk.

Jess has come home with all sorts of reports of what happens at school from who can't catch her on the playground to who had their frog hop that day (Inappropriate behavior makes your frog hop. If it gets to certain points, other consequences are enforced.) It didn't take a week before Jessie came home and announced in a matter-of-fact tone, "Well Mom, my frog hopped today." Even with all sorts of quizzing Jess just didn't know why her frog had hopped. I'm sure that her over-active social skills contributed to her frogs activity! So far she's learned the letter L and her teacher reported that she's doing wonderfully.

Heidi is a big second grader this year. She's so grown up in so many ways. She wants to do her own hair now and is very independent. Heidi is quite the little mommy and I miss her babysitting skills now that she's at school all day.

Having the older two at school all day has brought some different dynamics to our home. Natalie has been enjoying playing alone. Her stress level has dropped significantly now that her other two "mothers" have left. She's talking up a storm and is coming up with new words every day. "WHY?" is her favorite word now. I get sooo tired of hearing "whyyyy, mom?" in a whiny tone of voice. The fun part about the change in family dynamics is seeing Natalie get excited to see Heidi and Jess come home and the older two girls joy at seeing her excited to see them. It's just good all the way around. So even though another year of school brings change, change can be good and help us all.

Where do I start!? This summer has flown by and there is so much to tell. Since I get blog posts started and then don't finish them, I'm going to have to pare down my dissemination of information.

Craig is nine months old and is growing up so much. He got his first two bottom teeth the end of June. After those popped through, he decided that he enjoyed eating table food a lot better. Now we're feeding him all day long. He still enjoys nursing but solid foods are continuing to rank at the top of his "food chain." He's got another tooth working its way down from the top so I keep telling myself that I need to keep taking those gummy pictures before they are gone.

When my parents were here, Craig learned to wave. I don't remember my girls waving so readily as my boy. He just smiles and does the whole arm wave.

I really want to get a picture of my "Mini-Mozart" as he plays the keyboard. Craig has a love affair with the keyboard that is temporarily at his level. He looks like a Mini-Mozart standing there banging on the keys. He has even figured out how to get results pushing the buttons on the top to change the automated songs then he dances his little jig when the music is playing. I love it!

This little boy has got some determination and has started crawling. He started his hand and knee movements the beginning of August just as Grandpa and Grandma arrived. Now he's all over the house and is into everything. He's pulled the bar stools over on top of him. He's gotten into the dirt in my plants. He's even made it under the truck. I put him down in the grass one day and found him a minute later checking out the stones in the driveway under the truck! There's no lack of curiosity with this boy.




He's standing by himself for short times and walking around objects. (As I'm writing this, Heidi yelled, "Mom, Craig's walking!" He was walking across the room behind a push-toy.) I'm giving him a month before he's walking. It maybe sooner with all the practice Heidi and Jess are giving him by walking him all over the house.

My baby is growing up fast and he's loving every minute of it!