Sunday, February 21, 2010

March for Babies 2010

On April 10, 2010, our family will once again be walking in the March of Dimes, March for Babies. That's four years and three days after our twins Ryan and Evan were born.

Ryan and Evan were born at 26 weeks and 2 days. 13 weeks and 5 days too early. Just 2 days into our third trimester.

When they were born we were told they would not make it. We were told to have a conversation and decide what kind of life saving measures they should take. We were told that it was only a matter of time. In spite of two doses of steroids to help their lung development, they were not responding to treatment. They were not behaving like typical 26 weekers, more like 24 weekers. There was little hope.

We sobbed. We cried. We held each other. We never had THAT conversation. Instead, we dried our tears, and went down to see our babies. We sat by our babies, we put our mouths into the portholes and begged our babies to fight. We told them how much we loved them, how we had fought to have them in our lives, and now it was their turn to fight to stay. Every day for weeks and weeks, all we could do was look at them and talk to them.

We learned to change their tiny, tiny diapers, because that allowed us to be able to touch them. For the first four, and five weeks the only physical contact we had with our children was while we were doing care on them. Changing diapers, taking temperatures, holding them down while procedures were being done to them. Blood draws, spinal taps, new IV placements, all these horrible things done to our children, allowed us a few minutes of contact with our fragile babies.

We spent the next five months living and breathing in the NICU. Everyday we walked in though those doors never knowing what we would find. I always held my breath until I saw that the space in front of my babies beds was clear. Clear of doctors, nurses, respiratory therapists hovering. Clear of X-ray machines, or ultrasound machines. A clear view of those incubators meant all was okay for now. Not a clear view, I held my breath until I nearly passed out.

Still, almost 4 years later, the thoughts of those days, makes me pause and hold my breath for a few moments. We were *this* close to loosing our precious babies.

Thanks to the countless staff members of the NICU, many of whom are now like family to us, our boys are active, healthy, nearly four year old boys, with almost no signs of their terribly difficult start in life.

Our children are still here because of the Doctors, Nurses, Respiratory Therapists, Pharmacists at the NICU, and because of the March of Dimes. Medications and research funded by the March of Dimes allowed our Doctors to keep our babies alive. Let me say that again for emphasis...It is because of generous donations to the March of Dimes, because the March of Dimes' mission is to prevent infant mortality, birth defects, and PREMATURITY, Ryan and Evan are alive today.

Please join us in supporting the March of Dimes efforts to make sure no other family has to go through what we did, or worse. We will be walking in Encinitas this year (it's a shorter walk for our boys) on April 10, 2010 at 9:00AM.

Please sign up to walk with us at . Every registered walker means a donation for our local March of Dimes chapter. You do not need to fund raise in order to walk. (but if you can it is a double bonus!) Register yourselves (and your children), join us for a brief morning walk though one of the most beautiful cities in San Diego.

If you cannot walk with us, please consider making a donation at
If you are more comfortable sending your donation by check, please make them payable to The March of Dimes, March for Babies and I will make sure they are received at the walk.

Scott, Ryan, Evan and I thank you for your generous support.

Tuesday, February 16, 2010

New Beginnings. They grow up way too fast.

I'm sitting here tonight waiting for a phone call.

My Brother and Sister-in Law are at the hospital. Mary is 41 weeks pregnant. At her doctors appointment this morning, her doctor decided it was time for this baby to come out so, at 5:15 Mary began the process of being induced.

Before I knew that this little one would be making his/her arrival in the next day or so, I was reflecting. I took the boys to the park today. A park we have been going to since they were little. We call it bulldozer park because there is a climbing structure that looks like a bulldozer. The boys love to come here. I liked it when they were little because there were two baby swings side by side, a couple of small climbing structures and a wall of things that made tones. OH, yes and the gate that spanned three sides of the park.

When they were little, my biggest struggle with parks was keeping track of both boys, I spent a lot of time just risk assessing. Who was in the most peril at the moment? Where was I needed most?

Today, I watched as my babies, did things that a few short years ago would have had me in a panic. I watched Ryan climb high, really high, on this rope spider web, that only a few months ago, we'd only go to the middle of. When I say really high, I mean my hands over my head and I could barely reach his feet, if I stood on the first rope. Evan was not far behind him.

Today, Evan climbed this "ladder" thing, that arches? The steps are really far apart and as recently as two weeks ago he needed help. Not today. He jumped up and down and screamed a little happy scream as he reached the top unassisted.

Yesterday, Ryan decided he was going to join a soccer game being played by some older kids. He just ran right over and started taking passes, and dribbling the ball. These kids were 3 or 4 years older than him and he just didn't care. He. Was. Going. To. Play. And he did.

Yesterday the boys were playing with their friends Dylan and Tyler. They were playing like BOYS. Not little babies, BOYS. Running around, tackling, dog piling, laughing. BOYS.

Two days ago after watching about 5 minutes of Olympic Luge. Ryan promptly lay down on his "skateboard" and went lugeing around the house. Evan and Snoopy also took runs. His ability to transfer ideas/visuals and incorporate them into his everyday, scares me. (I have not shown him snowboard cross, I'm afraid, very afraid.)

My little "Top Chef's" have turned food preparation in to twenty (thousand) questions. Their love of being in the kitchen is well known, and I try to let them make things as often as I can, but apparently that is not enough. Now, for every meal, the boys want step by step instructions on how it was made. I feel like I am the host on a cooking show. I also expect that very soon they will be able to make their own meals and serve me!

It seems that everyday brings on more maturity. More things that highlight boyhood and push the babyhood into the past. I crushes me. It amazes me. I love this stage. I hate this stage. I love my boys. I miss my babies.

**It's 10 PM and they have not begun inducing. Some worries had them just monitoring. Should start soon.

****Edited: Rose (Rosie) Alma Born - 2.17.10 7:14 PM Weight - 8 lbs 13 oz. Length - 22 inches

Thursday, February 11, 2010

Music Making

It's museum month here in town. With a special card you pick up for free at Macy's, you can get into a number of museums for half price. Because of this pass, I found out about a little museum called the Museum of Music Making. If you know my boys, you know that this is right up their alley.

We went on Wednesday. It's a small place packed with instruments through out the ages. It had kiosks that played samplings of music from different eras. And, it had a room FULL of instruments. Guitars, banjo, drum sets, an organ, an electric piano, a purple thing called a Hapi, a lap steel, a ukulele, Moog guitar, a strum stick, a cool electric drum like instrument that you slap with your hands, basically every kids dream place. Most had headphones so they can bang away without disturbing the rest of the banging kids.

I forgot my flip and my camera, I did have my cell phone, but I cannot figure out how to get them off so, unless I do, my descriptions will have to do.

Evan is a little John Bonham. He LOVED the electronic drum kits, and has now asked for one for his birthday. LOVED. He sat and banged on either of the two kits for an hour. He did dabble with the "Heavy Red Guitar" but he, my child that has ants in his pants, played drums for an HOUR. Headphones on, drumsticks in hand, banging away, grin firmly planted on his face.

Ryan on the other hand, found the organ and the electronic piano. He sat bopping his head from left to right, up and down, playing keys, and singing. He made up several songs, which I'm sorry I cannot remember, and sat happy as a little singer songwriter can be. He wants an organ for his birthday, but he might have to settle.

I'm really thankful for museum week because it gave us a great opportunity to go to a place we had never heard of before. The boys had an enriching experience, and I, well I had a good laugh.

Friday, February 5, 2010

Aquatic trainers in training.

I cannot adequately describe the chaos here right now. I just had to get it down before I got busy making dinner and forgot all about how much these boys make me laugh.

Ryan is sitting on Evan's back. Evan is Shamu, and Ryan is a trainer. I am also a trainer and must put imaginary fish into Evan's mouth as he completes his tricks.

Then Ryan takes a turn as the whale. He "swims" out, does some trick like jumps in the air, or does a flip, or splashes, and he returns to me for a fish.

We spent the better part of an hour today watching the Killer Whales train today, can you tell?

Tuesday, February 2, 2010

He's a normal kid.

I've been asked to speak to a group of parents who have kids with eating issues. You know, since I've been there and back. I have more than a month to think about what to say, but for some reason I'm already at a loss for words.

It's not like we came up with the "cure", it's not like anyone could replicate what we did to finally get Evan to eat. So much of me believes that it was just Evan FINALLY deciding it was time, I don't want to tell these parents that. Some of these people have it even worse than we did. I want to offer them hope.

Hope that one day their kids will say to them, "this is yummy!" or "I like this dinner" or "More please". Each time in the last few weeks that these words came out of Evan's food stuffed mouth, I've felt such elation, and such relief.

And then we have those days. Days when Evan won't eat anything. And the worry and the doubt creep back in. Uh, oh, what's wrong? Is he slipping? Are we going to have to start OT again? Sometimes I have to kick myself to remember that regular kids do that. They just don't eat, and then they suddenly eat everything in sight. I have to REMIND myself that I have to think of Evan as a regular kid.

And then he will shock me by eating twice as much as his brother, and being super adventurous. (for a kid) He tries anything. He eats slower than a snake digests a meal, but he is eating. I have to remind myself of that little fact.

I have to remember that only a few months ago, he would only eat baby food, and now he eats, or doesn't eat, what ever I am serving. Just like a normal kid. (it makes me giggle a little just to type that!)