April, 2013

Harper: Weighs about 15 pounds now, over 26 inches long. She is petite but sturdy. She crawls everywhere, & loves to walk on her hands if you hold her legs. She stands up by herself for about 5 seconds before plopping to the floor. She walks along furniture, and crawls up your legs if she feels scared. She is brave and courageous and strong most times, and she will plow over anything to get to what she wants, locked in and completely focused. Pete calls her the Tonka Truck. She will spot a toy she hasn’t played with for a while, crawl over a pillow, a diaper bag, Robbie’s legs, and will not stop until she gets there. She wants to be held a lot and doesn’t like it when mom has to leave to take a shower, so she sits outside the shower on the shower mat and waits. She doesn’t like it when the shower door is closed either, so water is drizzling on her the entire time.

She is always smiling, always energetic, and the first person to get her out of her crib in the morning gets a big smile with stretched out arms and big hugs. She is happiest in her Baby Bjorn where she can be elevated and see the world and what is happening. In this position, she will shop, walk outside, sit in a restaurant, and anything else the carrier wants to do. She giggles when daddy tickles her belly and it’s the sweetest sound you've ever heard. She is also a toy bully, if she sees something she wants, which is whatever Robbie is holding at the moment, she will go over and grab it from him (which is not allowed). When Robbie is done playing with her desired toy and picks up something else, she suddenly only wants whatever he just picked up.

She is the bell of the ball at a party, she loves excitement, people, activities, and stimulation. Sure the docs may someday say she has a bit of ADHD/Anxiety, but we like to call it spontaneous, creative, imaginative, and extroverted. At a flea market that had no air conditioning she was so hot we stripped her down to her bloomers only, and people took pictures of the petite baby in the puffy bloomers and hair bow, smiling away at her fans. She is spontaneous and impulsive. She climbs onto chairs, and tries to eat cat and dog food daily.

Harper is helmet free as of a few weeks ago, and so happy about it. We tried to put it back on her a few days after not wearing it, and she wouldn’t have any part of it. She ended up wearing it begrudgingly for about 16 weeks. In the final weeks, she was trying to pull it up off her head and could slide it up to her ears......we knew it was over. She did the same thing with her feeding tube in the Nicu until the nurses finally decided to leave it out and give her a bottle.

Robbie: Wherever Harper is, you can find Robbie. He is crawling right behind her, smiling away when she comes into the room. Together they have places to go, and Harper is leading the way. Robbie is a cautious crawler, paying attention to each movement. He is trying to pull himself up on furniture now and loves to have you help him stand up. He claps patty-cake and loves his ipad, cheering and squealing for his favorite characters. He’s a napper and very easy going. In a dark room, he can sleep 8-10 hours a night or take a 3-4 hour nap. But he is hungry all the time too, and was never happier than the day he was given a Cheerio. Robbie thought he won the lottery when he tasted big people food like mashed potatoes or a piece of watermelon. He looks at our plate of spaghetti like a puppy at a birthday party. He is a very sensitive boy and his cry will break your heart. But he’s not a push over, he will grab his toys back from the toy bully like nobody’s business. At times, they will play tug of war with an empty water bottle like it’s a million dollar prize. And it’s not about the water bottle, it can be any toy of the moment, it’s about the principle of not giving up a toy he wants to play with just because the toy bully decides she wants it right then.

Robbie smiles all day, at Harper, the cats, the dog, anyone who walks into the room. He swings, swims, and throws a ball over hand over and over and over with excitement. He is in physical therapy every week to try to prevent any possible side effects to his brain bleed and he gets massage about 3 times a day on his calves and arms. So far he is not showing signs of developmental delay, but he does have some muscle tightening. He also has the tiptoe walking that can affect some babies, and Nana and Pops took him in to get fitted for orthodics which he will wear like little shoes about 8 hours per day. The docs think if he was going to be showing signs of any disability it would be showing itself already on his left side primarily. His neurologist does not think he will have any symptoms from the bleed based on where the bleed was located. We continue to hope he doesn't have to live with challenges that will be painful or lessen his ability to do anything he wants, but no matter what he is our most perfect boy.

The most important thing to Robbie is spending time outside, and  he will do anything with you on a breezy day, with his hair blowing in the wind. Everyone comments that he looks exactly like Pete and Pete’s baby pictures are an exact replica. At times, he accepts the back burner position while Harper demands the attention of the room, but his adorable facial expressions and  funny noises keep him getting the personal attention he needs and adores so much. He's observant and charming, and does things at his own pace. He's a bit more calculated, thinks it through. His favorite movie is "42" which opened in AZ on his birthday, April 12th. This is, of course, the movie about Jackie Robinson who our boy was named after. I think Jackie is watching over my kid, rooting for him and helping him out along the way. I wrote a letter to his wife Rachel telling her about our boy.

We can't decide if Robbie's going to the be the good influence on Harper or if she's going to be the risk taking trouble maker that gets him to follow her. Or, as we have been told, perhaps they will switch personalities somewhere down the line, but that seems impossible to imagine.
 

They love swimming and their personal pools ease my anxiety.

Notice the Toy Bully wants only what he has.

My amazing & beautiful cousin Chris came to town and walked the

March for Babies with us. The last time she saw them

 they were about 5 pounds in the hospital.

Pops teaching Robbie how to play piano at Pita Jungle

Harper was invited to attend a silent auction for HIV prevention at the

Phoenix Art Museum. We donated a large canvas painting, created

when I actually had time for personal hobbies, which sold for $5000

Harper at Spring Training

Nana Jessi came to town for Spring Training and loved up

the kids for as long as she could

Nurse Laurie gave them gifts and cake for their birthday.

We spent a few hours at the Nicu seeing the nurses and bringing cupcakes.

We also got to talk to a few freaked out moms who had tiny babies in incubators.
It was shocking to see how small the nicu babies were,
I could not take my eyes off them.

Nurse Lisa spent time with the kids at the March for Babies and

proudly showed off what a talented nurse can help achieve

There was a little garden specifically for the names of the little Nicu babies

who were taken from this earth too soon.

We thought a lot about some of the babies we had known in the nicu,

as well as our little angel friends Jimmy and Andrew

whose picture is above the playpen.

We wore signs on our backs during the walk.

Robbie at his first Giant's game. He loved being outside in the night time

My little newsboy

My college roommate Erica brought the kids

Oshkosh B'gosh from WI. So Adorbs!

 

The first day we walked into the Nicu,

Pete pointed to an alumni board and said, "That's the Goal!"

Nurse Laurie called us on Pete's birthday,

about a week after the twins' birthday, and said,

"We just put your picture up on the alumni board!"

It was a great present. This is that picture.

Karla has so much energy, she strolls for hours everyday,

swims, goes to doc appts, reads books, and

plays on the floor all day long.

There's nobody like Karla, as we know.

Bestie KK comes to town and sees the kids whenever she can.

It's always nice to have girl time too.

 

Harps didn't like the feel of the grass on her knees

 

Poor Robbie, he only wants to be outside,

but it's 100 degrees out there!

I didn't think she could get any out, but I was wrong

We sat at St. Marys Basilica on their birthday

and said Thank You for answered prayers

Sunglasses are the BEST, Robbies doing a photobomb

in the back just adoring his funny sister

 

Measuring heights for the 1 year birthday.

Did we ever think we would get here?

It seems impossible to believe it all turned out ok.