Tuesday, April 30, 2013

March for Babies & more

It's been crazy busy around here. First, an update on the March for Babies: we raised a grand total of $1965 and had 25 walkers attend. Thank you to all of our generous sponsors, donors, friends and family members who made this event a great one for the babies.

The weather was amazing and we stayed comfortable, if not a little too warm in the nearly 70 degree heat. So many people made sacrifices to make this event happen that this would be a novel if I would list them all here... but please know we appreciate each and every one of you for your efforts for the babies.

We saw a few of our PSL NICU room 11 roommates and friends, and were able to share the little dragons' amazing story with so many people.

Yesterday we had an appointment with Dr Jim and he affirmed that the babies are doing well as usual. The biggest news of the day? We are officially off of O's!

Maisie weighed in at 13lbs 4oz and James was 12lbs 12oz.

What else is new in the little dragons' world? Major meltdowns.

James had an enormous meltdown yesterday because he wouldn't take a nap. It was quite epic. He was so tired that he cried and cried, and refused to even attempt to sleep unless we were walking around with him and his cuddly blanket. He's also teething which has a bit to do with it.

Maisie, who has her meltdowns regularly, has been terribly frustrated because she just wants to crawl and stand all day and all night long. She is even trying to crawl while asleep. Poor Maisie is very frustrated. And we are very tired.

Otherwise, all is great on the home front!

Friday, April 26, 2013

10 months old

This week has been a long one. The babies have had three journeys out of quarantine and we are excited for tomorrow's March of Dimes Walk. Thanks to the generous contributions of friends and family we are currently at $1750 in donations for Team Little Dragons!

This week has been bittersweet. My cousin Nick passed away unexpectedly at the age of 34. He had never met the babies because we had been in quarantine but I know he was looking forward to it. He is in a better place and now is the time for our family to heal and process what has happened.

Auntie Ca and cousin Giblet made the journey from Seattle for the Memorial Service and so we are thankful to have them around. They will be here for our walk Saturday and have rescheduled their Seattle team to the Tacoma walk on May 18th.

Being out of quarantine has its advantages and disadvantages. First, the little dragons are beyond adorable and it's natural for people to want to hold them and touch them. What's difficult for us is managing hand washing for those around them to help make sure the babies don't get sick.

The babies LOVE having new things to watch, observe, and learn about. It has been great to get them out of the living room, which is their number one activity and play area.

Coming out of quarantine also means packing for the go: clothes, diapers and diapering supplies, oxygen and oxygen supplies, toys, play mat, food, bottles, formula, blankets if its cold, sunglasses if its sunny, and the stroller if we are going on a walk.

Finally, coming out of quarantine means you can never be quite prepared. The little dragons' second cousin, also a preemie, came down with bronchiolitis just following our first visit and spent the week in the hospital. We are on alert and though the babies have been stuffier than normal we are keeping our fingers and toes tightly crossed that we have escaped without another bout of bronchiolitis. But, if it happens we have the tools to handle it and the amazing Dr Jim on our side.

For those of you walking in the March for Babies, we are meeting at the Thatcher Fountain in City Park on Espalande Avenue just north of 17th Avenue at 9am tomorrow!

Saturday, April 20, 2013

Yeah yeah, dada

James is pretty good at talking. He has in depth conversations and can say "Yeah", "Dada", "bubub", "gugug", "gig gig", "nana", and "yiy"; and he has started to master the art of growling. He can ask for a bottle and will repeat the same thing over and over if you don't listen to him. James will even reprimand you if the mood strikes him!

Maisie is doing an amazing job at sitting and moving around. She will be crawling before we know it. Her fine motor skills are improving every day and she enjoys pounding things together and beating the daylights out of her toys.

James on the other hand, is getting more dexterity with his fine motor skills and is moving better each day. He is very good at escaping Maisie. James can roll over so quickly and is very smart about his path when moving out of his sister's way.

Maisie loves to pull hair, skin, jewelry and clothing. She especially loves to bug James. He has outsmarted her though; and his current revenge is kicking Maisie's head while she is asleep and passing horrible gas near her head. Then, he clasps his hands together and lets out a slow, evil laugh: "Heh... Heh.... Heh...".

This happened again tonight when an exhausted Maisie fell asleep at the piano after bugging James. He had rolled onto his stomach and then onto his side to escape her, then found a good spot off of Maisie's radar. Maisie fell asleep with her face on the piano and James started kicking her head. He was thoroughly amused because every time he kicked, a new song would play on the piano. She was so tired she didn't wake up until James passed a horrible gas cloud and kicked her so hard that she awoke briefly, jumped up, and fell back onto the boppy pillow.

She probably doesn't even know what hit her, literally. Maisie may be faster but James is smarter.

Sunday, April 14, 2013

Counting down

We are getting closer to the March of Dimes. The little dragons' onesies arrived last night and they are amazing! I can't wait to see our adult shirts. We have reached our team goal of $626 and are currently at $1165. With commitments due to come in we should hit $1350. We are so close to making the top 10 leader board for our district that these last two weeks have got to push us over the threshold. Please help however you can by donating $1, $5, or whatever you can to the March for Babies Team Little Dragons! (Http://tinyurl.com/teamlittledragons2013)

The little dragons are simply amazing. Last night I sat Maisie at the piano mat, converted for big kids, of course. She pounded on that piano for an hour and only fell over once. She's pretty aggressive. I don't think real piano lessons will be in her future. Boxing may be more her style.

I then propped James up opposite Maisie and watched the two of them interact. James at first was more interested in the ceiling fan and frightened by his sister's combat with the keys. He sat quietly and then, after a few minutes, Maisie noticed that James wasn't participating. Maisie grabbed his hand and they started to play together. They sat for nearly fifteen minutes before a double meltdown happened; both fell over and they realized that they were, in fact, starving.

The babies have also gone on a very big offensive against their number one enemy right now: their oxygen. James downright refuses to keep it on at night and we are trying everything from tiny surgeon hats with strings to cutting the prongs off the cannula. Maisie is using her O's to pull herself around the living room. Hopefully we will be off O's soon; Dr Jim is trying to set us up with a pulse oximeter so we can wean at home. Until then, we are stuck doing parents vs. babies vs. oxygen. Not too fun!

Monday, April 8, 2013

13 pounder!

Today we visited Dr Jim for a follow up on Maisie's Bronchiolitis. He thinks she is doing much better and that she has improved since last visit. Overall, I think the staff is impressed that we managed to avoid the hospital this time around.

Maisie is still on her steroid treatment through the nebulizer for the time being and her baby anchor aka her oxygen. There's still inflammation causing her oxygen saturations to be less than where we'd like them to be.

Dr Jim and his staff are working on getting us a pulse ox so we can wean on oxygen at home - we'll see how that goes over with our insurance. Ultimately only time will tell how long these babies will be on oxygen, whether its all the time or just nights or not at all.

Maisie has had her appetite and energy back in a big way and it showed on the scale. She weighs 13 lbs 1 oz!

We have some VERY exciting news to report! Our donations for the March for Babies have started rolling in and we have officially reached our goal of $626. In fact, my estimate is that we will reach this twice. We'd like to give a big hug and thank you to everyone who has and will donate. It's such an important cause to our family. Without the March of Dimes and the research they have spearheaded, the little dragons wouldn't be here.

As a reminder, if you would like to walk with us we'd love to have you. Please preregister as part of Team Little Dragons by going to http://tinyurl.com/teamlittledragons2013 The walk is only a few weeks away and we have a great group of people walking in support of Maisie and James so far.

Update on what the babies are doing / loving right now:

Maisie: Moving, scooting, rolling, stealing toys, pulling hair, shiny things- especially jewelry, anything bright blue, clothes, splashing in the bath, books, throwing things, blowing raspberries, attacking things, hoarding all the toys, growling, screaming, bananas, smoothies, eating socks and feet, sitting by herself, standing, tummy time, mirrors, swaddling, being a drama queen, Daddy, giraffes, elephants, monkeys, and Lambie.

James: Rolling, dive bomb with flip, standing, sitting (with just a little help), dancing, talking, eating, laughing, eating his hands, bath time, playing with his tongue, toys (puppy, rings, red and white ball, Scout, etc), eating, nap time, cuddling, his snuggly blanket, lions, tigers, frogs, and monkeys, eating, making faces, laughing at Daddy's jokes and Maisie, food of all kinds - especially orange stuff, music, Mommy, and going on "Adventure Time".

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Thursday, April 4, 2013


Maisie is all over the place. She moves to get her toys, to change positions, and to get from point A to point B. She's not quite crawling, but a combination of rolling and pulling herself along. She also loves to sit and stand by herself - though she will go "bonko" and fall down more often than not while standing.

James is not too far behind. He will roll over in a heartbeat and is getting stronger and more flexible every day. He's had more of an uphill battle: James was tightly swaddled for 13 weeks to keep him from extubating the ventilation tubing in the NICU, and he spent 15 weeks without amniotic fluid in the womb. Now, we are making up for lost time with play exercise and therapy.

They love to play with each other. James will laugh and Maisie blows raspberries and steals his toys. He'll hold onto some for dear life and they will wrestle over the object; yet James is kind enough to let Maisie steal others and he'll find something else to do.

Last night Maisie was playing with her oxygen tubing and saw James, who had just rolled over. She moved so he couldn't see her and grabbed a fistful of his hair - and she yanked as hard as she could. James screamed in pain and I scolded Maisie for pulling James's hair. She moved away, looked at me cross-eyed, and blew a long raspberry. She looked for another victim to terrorize - usually her giraffe - and went about her business.

James calmed down quickly but once he saw me eating my dinner he started gnawing on his hand and fussing. No one can eat before James. He wants a piece of everything, and if he can have it off my plate he's even happier. James eats like we've been starving him his whole life. If you're too slow with the spoon, James will have his hands in his mouth and start growling for more food. He'll smash his bib on his face looking for "leftovers". As soon as I could I fed James a serving and a half of peaches and yogurt and he was a happy man who went right to sleep.

Are you walking with us? Join us in the March for Babies at http://tinyurl.com/teamlittledragons2013

We've nearly reached our goal with commitments from Harvard Square! Who else is out there? How much can we raise to help preemie babies?